Autologous & Allogeneic Stem Cell Transplants

Experiences of Waldenstrom's Macroglobulinemia Patients

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Patient: Jeff Atlin- from Toronto, Canada (Early 2012 & Late 2013)

Age During Transplants: 59/60(diagnosed 1998 at 45 years old)

Doc/Facility: Dr. Chen - Princess Margaret Hospital, Toronto, Canada


Final Note   |   Autologous Transplant Journal   |    Allogeneic Transplant Journal


Jeff Atlin - Final Note (with sadness)

Thu, 13 March, 2014


Yesterday, I received an email from Arlene Hinchcliffe, President of the Canadian affiliate of the IWMF, WMFC, regarding Jeff Atlin (who served as Treasurer and on the Board of Directors of the organization).

It is with deep sadness and a heavy heart that I pass along the sad news of his passing. Jeff was originally diagnosed with WM in May, 1998; he was 49 years old at the time (relatively young in WM terms!). He has long been a volunteer for the IWMF and for WMFC, providing freely of his time to help fellow patients and caregivers, and being directly involved in the WMFC organization and in Canadian Support Group meetings. In late 2011, Jeff contacted me, stating that he would like to share his transplant experiences, hoping that it would serve as a guide for others considering the transplant process, and to make the process a little less scary for fellow WMers. I was immediately struck by his strength of will and fortitude, and his caring nature, and had several phone conversations with him in the coming months as he went through the process. Subsequently, I had the distinct pleasure of meeting Jeff and his wife, Linda, at the IWMF Ed Forum in Philadelphia in 2012, just a couple of months after the completion of his autologous stem cell transplant. He appeared hale and hearty and ready to take on the world and face life with a renewed vigor. Sadly, that was not to be so, as his tale below tells of his being diagnosed with a secondary cancer, AML (Acute Myeloid Leukemia), which would require more aggressive treatment and an allogeneic (donor) stem cell transplant. While the transplant was successful, sadly, complications set in shortly afterwards, which led to his passing away recently.

Here is the message I received:

Wanted you to know that Jeff Atlin sadly passed away last night (Tuesday, March 11, 2014). His last stem cell transplant only lasted 6 weeks and then with a suppressed immune system he developed a severe mouth infection resulting in removal of his palate, teeth and jaw on the left side. However, he was not able to fight off the infection.

I am very saddened by this as he was such a caring man and supportive of the WMFC/IWMF.

(Arlene Hinchcliffe, President, WMFC)

Jeff was a kind and caring soul, and will be dearly missed by all who were touched by his grace and his guidance.

The obituary notice that appeared in the Toronto Star (Canada) newspaper stated:

Atlin, Jeffrey Mark: On Tuesday, March 11, 2014 at The Princess Margaret Hospital after a valiant and courageous battle, Jeff passed away. Dear son of the late Irwin (Sonny) and Eve Atlin. Dearly beloved husband and best friend of Linda Atlin. Cherished father of Rachel and Robbie Shapiro, Bram and Taryn, and Zack. Devoted step-father of Melissa Spivak and Michael Spivak. Proud Zaidy of Evan and Matthew Shapiro. Loving brother and brother-in-law to Lisse and Richard Gerofsky, David and Randi Atlin, Alan Strauss and Marty and Ann Strauss. Beloved son-in-law of Russell and the late Ruth Strauss. Jeff was loved by his nieces, nephews and great-nieces. A kind and gentle man who was a friend to all. He will be forever in our hearts. At Benjamin's Park Memorial Chapel, 2401 Steeles Avenue West (3 lights west of Dufferin), for service on Thursday, March 13, 2014 at 10:00 a.m. Interment Canadian Hebrew Benevolent Society Section of Pardes Shalom Cemetery. Shiva at 16 Bowring Walk, Toronto. Memorial donations may be made to The Princess Margaret Hospital Foundation, 416-946-6560, or Waldenstrom's Macroglobulinemia Foundation of Canada, 905-337-2450 or

ALLOGENEIC TRANSPLANT EXPERIENCE (scroll below for previous Autologous Transplant Information)

Wed, 18 December, 2013

Allo SCT Day +60

It has been almost five weeks since I last updated the blog on my transplant progress.

For the first two weeks I continued to have regular follow up twice a week, getting a magnesium infusion each time. For the last 3 weeks, they cut me back to once a week and no automatic magnesium infusion. During that time my Hgb bounce around the 123 (12.3) to 113 (11.3) range, on Tuesday (Day +60) it hit 124 (12.4). Plt's also jumped around between 86 and 66, but were 81 Tuesday. WBC hit a high of 5.3 on Day +32 but gradually dropped to 3.5 by Day +46. The past two Tuesdays the WBC's dropped to 1.7. The same with the neuts, which were at 3.8, sank to 2.70, and then dropped to 1.2 the past two weeks. The doctors tell me they are not concerned so long as they don't drop much further.

Day +60 is a measuring point in your recovery from an allo transplant. Besides the usual questions and physical, they do a BMB to check for residual disease, the state of the bone marrow and to see if the cells are proliferating there. They also do the cytogenetics. We hope to have all the results by next Tuesday. I also went to the dental clinic in the hospital to have my mouth checked for any damage that the radiation, chemo or medications might have done or be doing. This checkup will occur monthly for a year. I checked out fine on both the physical and oral examinations.

Other than tiredness and a bit of a nagging on and off cough, I've been doing well. I think the doctors were a little surprised at how well I've done, considering all the chemo I've had over the years, and the fact that I also had done an auto transplant less than 2 years ago. While at the hospital, I went back to the allo transplant ward to visit two men who had been my roommates at various times over the summer, and who both had allo transplants in the past 2 weeks. The one with the 10 out of 10 match seems to be doing much like I did - extremely tired but otherwise doing well. The one with the 9 out of 10 match was have a far more difficult time of it, with mucositis, swelling, pain, as well as tiredness. The pain in his mouth from the mucositis is so bad that they have put him on a morphine pump. After visiting him, I realize how lucky I was to have such an "easy" time of it.

Sat, 9 Nov-Fri, 15 Nov, 2013

Allo SCT Day +22 to +28

Firstly, I would like to thank everyone for their kind comments and their support. It is quite overwhelming at times. A few of you have commented on my positive mental attitude through all of this. It is the only way I know to deal with everything that happens on a day to day basis. As Lawrence Peter Berra (better know to you as "Yogi") is quoted as once famously saying, "90% of the game is half mental"!

Once you are discharged from the hospital, your care transfers to a team of doctors and nurses at the transplant clinic. (The doctor on the ward is part of this transplant clinic team, but is permanently assigned to the ward). For the first few weeks, you attend the clinic twice weekly, in my case on Tuesdays and Fridays. If you need assistance in between, you are given contact names and numbers for 24 hour a day assistance. Also, one of the things that they ask you to do is get some type of medical alert bracelet which advises the reader that you are a blood transplant recipient, that you require irradiated blood only, and gives the hospital name and a contact number for the reader to call. I ordered mine a couple of days ago.

For the first 3 weeks or so, you automatically get an infusion of magnesium as part of your visit. This is because the drugs, particularly the cyclosporine, reduce your magnesium levels. They have a routine set up that tries to minimize the time you are at the hospital. The transplant clinic is located on the second floor of the hospital, and the transfusion (and chemo day care) clinic is on the fourth floor. Since I still have my Hickman line in, my blood draws are taken in the transfusion clinic, which opens at 8 a.m. When you arrive, you go directly to the pod that handles transfusions and you write your name, patient number, doctor or clinic name, and type of line you have (Hickman, pick, etc.) on a list which they leave outside their door, and they call you into the clinic in the order that you register on there.

Once your blood is drawn, you go to the main reception for the transfusion / chemo and register there, where you receive a wrist band, and wait for them to call you back into the transfusion clinic, usually 30-60 minutes after you register. The nice thing about this clinic is that they give you a buzzer that works anywhere in the building, so you can go downstairs where there is a deli and a Tim Hortons and have breakfast, a coffee or just read a paper somewhere until they are ready for you. Currently, when called back in, they hook up the magnesium bolus, which runs for 2 hours, and you then go to the transfusion clinic dragging along the iv tree, and register there. It usually takes about 30-60 minutes before you are called in and one of the nurses interview you, making note of any issues or questions you may have. Once done, they consult one of the transplant doctors, who then comes in, questions you further based on the nurses notes, and does a quick physical examination, particularly looking for signs of GVHD. They also give you any scripts you may require, and make any necessary adjustments to your medications. When they are done, you go back to the transfusion area, where they disconnect the magnesium when it is complete. If by chance you need any blood product or other transfusions / infusions, they will give you those at this time.

One of the blood tests that they do is to check the levels of cyclosporine in your blood, which they like to keep between 200 and 400 (I don't know the units). This test takes much longer, and they usually don't get the results until late in the afternoon. If you are done, they will send you home and call you with any adjustments to your cyclosporine dosage. After my Tuesday visit, I got a phone call to reduce my cyclosporine from 3 X 25 mg pills twice a day to 2 pills twice a day as my blood levels were high. On Day +28 (Friday), the doctor estimated that I had skin GVHD on about 25% of my body. They aren't concerned until it is on over 50% of my body, or the skin reaction is extreme. I still have no mucositis or stomach / intestine issues. My blood counts on Day +28 (Nov 15) were Hgb 118 (11.8 US); WBC 3.1; neuts 2.40; and my Plt dropped to 66. Although my Hgb dropped from 123 (12.3) and Plt from 85 on Tues., they were unconcerned as it isn't unusual for your blood counts to bounce around a bit during the recovery process, and in particular due to your level of hydration as well. They will be more concerned if they continue to drop over the next couple of appointments.

Thanks again for all your support and good wishes.

Sat, 26 Oct-Fri, 8 Nov 2013

Allo SCT Day +8 through +21

I apologise for not communicating more often the past 2 weeks. I must confess, this has, so far, been much easier on me than I ever thought it would be. I have still not encountered the mucositis or stomach issues that generally accompany transplants. My worst problem has been fairly severe fatigue - a daily issue since the transplant. I do have some mild GVHD of the skin - I look like I have a sunburn and have some rashing taking place on various areas of my body. But I get ahead of myself.

My blood numbers continued to decline up to Day +14 (Nov 1st) at which time my WBC's and neuts were 0.1 and 0.03 respectively, Hgb 82 and Plt 62. Actually, my Plt bottomed out at day +8 at 9, when I received a Plt transfusion. After the transfusion they were 19, and slowly started to grow on their own after that - the first signal that the transplant was taking. I also got a blood transfusion on Day +14 which brought Hgb up to 90. I was discharged from the transplant unit on Day +21 - exactly 4 weeks from admission and three weeks from the day of transplant. My numbers on discharge were Hgb 116; Plt 76; WBC 0.9; and neuts 0.52. The biggest indicators that the transplant team is looking for to allow discharge are neuts at 0.50 or more for two consecutive days, GVHD under control, no fevers or other adverse condition, WBC's at or near 1.0, and stable Hgb and Plt, in that order.

The doctors were actually very pleasantly surprised at how quickly I had recovered, given the amount of previous treatment I'd had overall and the heavy chemo I'd undergone in the summer. 21 days after transplant is close to the minimum time to discharge for anyone undergoing an allo in their centre.

Upon discharge, there are a number of drugs that they send you home on. Chief among these are cyclosporine (Neoral), which is an immune system suppressant to help control GVHD and which our centre gives you for free as part of their program, but would cost $250-$350 a month if you had to pay for it; posaconazole oral suspension (Posanol), and anti-fungal that costs about $2300 a month and that will be required for at least 4-6 months; and magnesium pills which are available over the counter. In my case I also have two heart medications - atenolol and amlodipine. I have never been on high blood pressure pills before. Apparently, cyclosporine can, and has in me, cause high blood pressure. The hope and expectation is that these won't be necessary once the cyclosporine is no longer required in 6 months or so. However, the cyclosporine may be required for much longer, maybe years. They also give you prednisone to keep on hand in case it is needed. In my case I also started gabapentin for my PN, which got considerably worse with the chemos over the summer and the induction chemo for the transplant.

Thank you all for your kind notes over the past few weeks. Best to you all.

Mon-Fri, 21-25 October, 2013

Allo SCT Day +3 to +7

Its now one week post transplant. All my blood counts have started to collapse since yesterday. Today my Hgb was 83 (8.3 USD); Plt 13; WBC 0.1 and Neuts 0.07. It will probably be the better part of this week before we start to see any of these numbers go back up, which will mean that the engraftment process is happening. In the meanwhile, if the Plt go under 10 or the Hgb under 80 (8.0), I will get transfusions. I expect that over the weekend I should be receiving both.

I have been very fortunate so far. I feel almost 100% - the only lingering issue is tiredness. So far I have avoided the skin issues that can come with either or both the radiation and transplant, and have not had the mucositis (mouth sores that are really painful -see my allo SCT blog) and the stomach and intestine issues that they say are surely coming. I have also, since Day 0, avoided fevers, and also infections, chest issues, heart issues and other things that I don't even know about (nor want to!).

I am free to walk around this ward as much as I like, but can't pass through the ward doors to go downstairs and get a coffee or hot chocolate. The walking is good as most of your time is spent lying in bed, atrophying. There is a stationary bike in my room as well - used it once, and I think I will wander the ward while I can. I can also have healthy visitors anytime.

There is free internet access here for patients, which is terribly unreliable. There are hours and almost complete days where I haven't been able to get on. I wasn't going to get TV as most of the content I want I can access via the net - but when you can't get in, its too frustrating also not being able to watch a TV show or baseball, hockey or football game! So I broke down and rented the premium TV package (the bane of the sports fan is that at least half the sports are only available on the "premium" stations) - at the bargain price of about $14 a day! The bright side is if I'm here for longer than another 3 weeks, the following 10 days should be free. What a deal! To take advantage of the bonus, I REALLY have to be having a difficult time of it! Thanks!

I'm going to sign off here. Back to you in a couple of days. Be well.

Sunday, 20 October, 2013

Allo SCT Day +2

Woke up today feeling less tired that the last couple of days. Had the nurse cap me off of the iv tree, and took a nice long, hot shower, my first since Thursday. What a great feeling! I then opened my computer, and got through about half of the outstanding emails. I spent the rest of the day, from noon on, watching football and a couple of tv show in the evening. I actually think I didn't doze off for the better part of the afternoon. Other than Day 0, my appetite has been ok, and I've eaten my meals - good, bad or indifferent - with most of them falling into the latter two categories. My blood counts continue to slowly fall: HgB was 121 (12.1 USD)on Day -2, 111 (11.1) on Day 0, and 104 (10.4) on day +2; WBC went from 3.5 Day -2 to 1.3 on Day 0 and back up to 2.1 Day +2; Neuts the same pattern at 3.5, 1.18 and 2.08 on the same days; and Plt 112, 98 and 78 on those days. They tell me it will be another few days before they fall right off, and then about 10-14 days from now the count should start to recover.

Thanks again for everyone's continued support and good wishes.

Saturday, 19 October, 2013

Allo SCT Day +1

Saturday went by fairly unremarkably, other than extreme tiredness. I slept the majority of the day, with little energy to do anything else. Internet and phone reception in my room has not been good - sporadic at best - so I broke down and paid for the TV package. Having slept most of the day, I was able to watch Boston win the AL pennant, and the Leafs lose. I haven't touched my computer since Thursday, and the emails, etc. are piling up.

Friday, 18 October, 2013

Allo SCT Day 0

The day started off almost anticlimactic - even my nurses didn't seem to come by after the usual 5:30 / 6:00 am blood draws, until 9:30 am or so. They then started to give me pre-meds including dex, Tylenol and Benadryl. At about 11:00 am three nurses came in with a bag of what looked like a cross between packed red cells and platelets - these were the donor stem cells. After much crosschecking of my personal info and the transplant bag info, they infused it just like a blood transfusion - only this just took about half an hour to do. Two of the nurses stayed with me the whole time, taking my blood pressure every few minutes and watching for signs of reaction.

I had no problems during the infusion, or immediately afterwards. However, mid afternoon I developed a fever that spiked almost to 39C. They immediately took blood culture samples from both of the lines and from a vein, and a urine sample, and put me on two iv antibiotics, which I'm still on twice a day 3 days later. The fever subsided by around dinnertime, and hasn't returned since. I was very tired all day and that night, and lay in bed the whole time. They don't think the temperature was an infusion reaction, but rather an infection. I haven't heard of any results from the cultures as yet.

Thurs, 17 October, 2013

Allo SCT Day -2

Today I went for full body irradiation. They gave me ondansetron last night as a premed, and again this morning at 7 am along with dexamethasone. Last night, for the first time, I had a four hour infusion of cyclosporine, a drug I will be on for the next 3-6 months at least. It is the main anti-rejection drug for the transplant, and I will be getting it twice a day until I'm ready to leave the hospital, and then switch to pill form until the oncs wean me off of it.

The full body radiation went easily. During a one hour appointment, about 40-45 minutes is spent positioning you and the machine, and making preparations for the radiation, and 20 minutes spent irradiating you front and back. There was absolutely no feeling or sensation to the radiation while it was happening, and no nausea or other side effect. Later in the day, my skin turned light red but with no burning or itching sensation, and I felt a touch of nausea and headache, but again not enough to medicate. Tonight I will get the ondansetron and nabilone as well as the cyclosporine, so everything should remain in hand. Of course, my wife, daughter and I ran out for a quick bite. These diversions and incursions into the culinary world will end with my infusion on Friday, so I may as well enjoy them now while I am able. Tomorrow is basically an off day, with only oral and iv meds being given. Because the cyclosporine is a 4 hour infusion started sometime between 10 and 11 am, I won't be done until 4ish, which really doesn't leave time to go home.

Day -1 was reasonably uneventful. I had no further chemo or irradiation, but am still on, and will continue on, a myriad of antibiotics, antivirals, antifungals, pain killers and anti-emetics. I did have a little "sunburn" from the radiation and was feeling pretty fatigued. I did get out for a quick dinner with my wife and one of the daughters, which was nice.

Sun-Tues, 13-15 October, 2013

Allo Days -5, -4, & -3

Sunday was the same as Saturday. Only chemo was Fludarabine and I left the hospital by noon to go home. Stopped for dim sum on the way, and then spent the rest of the day relaxing at home.

Monday, after getting the Fludarabine, I was pre-medicated with dexamethasone and ondansetron (Zofran) and then received the busulfan iv for about 3 hours. I found this easy to take and went out for dinner afterwards - no nausea, just fairly tired. With the busulfan you need to shower twice in the day you first get it, and three times a day for the second day and the day following, as it is also eliminated through the sweat glands. You need to put on fresh clothing after each shower, and wash your clothes that you were wearing 2X. They also changed the bedding for me 1-2 a day. Tonight, in addition to my fistful of nightly pills, I will get iv ondansetron again in preparation for tomorrow's full body irradiation. I will get both ondansetron and dexamethasone tomorrow morning early as premeds for the radiation. My appointment for radiation is 8 am. So far, this has been an easier process than the auto -- but I think that will change by next week.

Thank you all for your continued good wishes and support.

Saturday, 12 October, 2013

Allo SCT Day -6

Today is slated to be the first day of chemo.

This morning they brought me a cocktail of drugs to take by mouth. Famciclovir (Famvir) (500 mg), which I've been taking for years, is being continued for now for antiviral protection. They will switch me to a different antiviral if and when I switch to getting most of these pills by iv (if and when mucositis (mouth sores)) sets in. I receive pantoprazole sodium (40 mg enteric coated) for acid reflux and it also acts a some sort of blocker for the histamines. Ciprofloxacin (500 mg ) as an antibiotic, and allopurinol to protect my kidneys from the effects of the chemo and the various blood cells dying, breaking down and being flushed from the system. Lastly. and best of all, I had told the doctor how well nabilone (synthetic marijuana) had worked for me during my ASCT, and, low and behold, the anti-nausea drug they gave me was nabilone. I suspect that this will be the base anti-emetic all through my treatment. Yes!!! I don't really need it today or tomorrow - I think they are trying to get a concentration of it it my bloodstream prior to Monday and Tuesday's chemo, and Wednesday's radiation. The iv infusion of Fludarabine went very easily. I had iv micafungin (antifungal) at the same time as the Fludarabine. I was all done by noon and heading out on my day pass, which goes to approximately 9 pm. It was nice to spend the afternoon at home, relax, do some puzzles and watch a couple of games. Went out to a Chinese buffet for dinner (one that carries peel and eat shrimp and crabs legs) and ate enough for two, as I won't be able to do that again for a few months. Tomorrow lunch I think I'll do dim sum, something else I 'll be missing for a while. Got back to PMH around 9:45 pm and took more Famciclovir, Ciprofloxacin, nabilone, phenytoin (300 mg) and a sublingual Ativan. Tomorrow (Sunday) should look much the same (maybe with a few more football games and the dim sum).


Friday, 11 October, 2013

Allo SCT Day -7

I will be doing my allo SCT at Princess Margaret Hospital (PMH) in Toronto, Ontario, Canada. It is my understanding that this centre does more transplants than anywhere else in Canada. For allo transplants (SCT) they admit you the afternoon before starting your induction regimen. For me, that was this afternoon.

When you check in, you are first greeted and spoken to by the ward clerk, who welcomes you and gives you an overview of your itinerary for the day and the coming week, and has you complete a couple of forms (mostly for the government since this is almost all covered by the socialized health system (i.e. government and taxes) here. Right on her heals was the transplant team doctor who is assigned to this ward on a permanent basis (i.e. Monday to Friday daytimes). He carefully explains the process and what you should expect - he spent a good hour with my wife and I - and then gives you a physical. Next came the pharmacist, who must have been pacing the hall waiting for the doctor to finish as she came in immediately after the doctor finished. She went over all of the drugs that I would be taking both short and long term. She was followed by the nurse, who had more paperwork to complete, took us on a tour of the floor, and, in no small part thanks to the SARS experience, took a couple of swabs to be tested.

I was a little surprised by some of the drugs they now use for the transplant process. Firstly, for conditioning they will give me Fludarabine(infused over 1 hour) for the next four days, and busulfan (Busulfex) for two days with the last two days of Fludarabine. However, one if the known side effect of the busulfan is seizures! So tonight I have been given 900 mg of slow-release phenytoin (Dilantin) (300 mg every 2 hours) as a loading dose, and will get 300 mg a day until chemo is done.

The other surprising drug is one that is no stranger to this talk-list - Alemtuzumab (Campath) the anti-CD52 cousin of Rituxan. They give you one subcutaneous shot today which apparently last in your body for 3 months. They pre-medicated me with the holy trinity of premeds - Tylenol, Benadryl and Dexamethasone - and gave me the shot 4-5 hours ago. They circle the spot where they inject you to watch for sighs of inflammation, but I have none so far. Apparently they have found Campath to be an effective ant-rejection drug as it keeps the growth of white blood cells in check (ironic, in that the point of this whole exercise is to grow me a new immune system!). The other anti-rejection drug I'll be taking is the well used cyclosporine, which I'll get by iv infusion 2X daily starting on day -1, and, upon discharge, will continue to take by pill for at least 3-6 months thereafter. I will also be on a cocktail of antibiotics, antifungals and antivirals starting over the next few days.

The good news is that for Saturday and Sunday, my only in hospital duties are iv Fludarabine (1 hour infusion scheduled at 10 a.m.), and giving several vials of blood for checking (between 5:30 and 6:30 am, which will be the time for the blood collection EVERY day I'm an inpatient here), so they will give me a day pass from when I finish the Fludarabine until 9 pm or so. I'll be able to go and watch some football, baseball and hockey from home and have dinner there. With the two chemos on Monday and Tuesday not finishing until 4 pm or so, it doesn't pay to fight rush hour traffic to go home for a couple of hours, but maybe my wife and I will go out for dinner down here. They tell me that after radiation Wednesday I probably won't feel like doing anything, but if I'm ok, I can have a pass for the rest of the day. Thursday was supposed to be my transplant day, but the donor's stem cells won't be arriving here until around 9:30 pm (from which I can deduce that the donor isn't local) so they have rescheduled it for 10:00 a.m. Friday - my new Day 0.

Well, this is longer than I intended it to be, and its getting late and the Dodgers-Cardinals game is tied at the end of seven and I want to watch it, so I'll sign off for now.


Thursday, 10 October, 2013

Allogeneic SCT Update

I have received a few emails asking for an update on my pending allogeneic stem cell transplant (SCT). A 10 out of 10 match was identified for me early in the summer. I underwent a round of chemo in June, but there was still AML found in my bone marrow. I therefore went through another stronger induction chemo. This worked (confirmed by another BMB), although it took some 40-45 days for my bone marrow and blood numbers to recover to a level whereby I could leave the hospital. During my 13 week stay in the hospital, the ward was closed down due to a virus epidemic. I avoided getting the virus at that time, but ended up with the virus and in isolation for a week getting treatment for it the last week of my stay. Around Sept 9/10 the transplant team called to set up a series of tests that you are required to undergo before the transplant can proceed; and, "oh, by the way, your admission date for the SCT has been set for Oct 11th." They put you through a series of tests and examinations, including a heart test (MUGA), pulmonary function test, CT of the chest and abdomen, bloodwork (15 vials of blood, exceeding my old record by one), another BMB (which we'll get back to in a moment), dental exam, physical, and a full body CT that measures you for a mold (both front and back) for full body irradiation. The BMB was done by my regular AML onc on Sept 20th. I was advised a few days later that the pathologist had found too many blasts (immature blood cells) in the bone marrow - the transplant people allow a maximum of 5% blasts - saying he felt the AML was either back or still active. They therefore put the donor on hold and cancelled the SCT date. My onc disagreed with the pathologists interpretation. He felt that my WBC's and neuts were now recovering quickly, and you can't get mature cells without first having immature ones. He therefore wanted to repeat the BMB, which we did on the morning of October 1st. (for those of you who are counting, that's 5 BMB's since the end of May!, all with only local freezing and all quite bearable). The pathology report proved him to be correct, and the results on Oct 4th reflected blasts in the acceptable range. We contacted the transplant team immediately, and they set out to see if and when the donor might be available. On Tuesday I received a phone call advising me that the donor was still on and available on schedule, so I "check in" to the hospital transplant ward tomorrow. I will receive 4 days of reduced intensity chemo (RIC) due to the amount of chemo I've had both over the years and over the summer and the fact that I had undergone the ASCT 21 months ago, followed by a day with full body irradiation. I am scheduled to receive the donor stem cells next Thursday. I will be in isolation until my neuts reach 0.50, and my other CBC's are showing signs of recovery. I will be transfusion dependant, on antibiotics, antivirals, antifungals and anti-rejection drugs for some time. I will try to update the list as things progress, for those of you who may be considering an allo transplant on the future.

Tuesday, 02 July, 2013

Secondary AML

Thank you all for your continued good wishes and notes.

On June 17th I was randomized into the control arm of the trial. As such, I received 7 days of continuous infusion cytarabine, and doses of Daunorubicin on days 1, 2 and 3. This is very heart toxic, hence the MUGA exam (CT heart test) prior to starting to ensure my heart was ok to take it. All of this is done as an in patient, so you are hospitalized for at least 21-27 days through the process (in my case a week longer as I've already been I for a week dealing with a possible infection in my Hickman line and waiting for the trial to start).

In general, I found the cytarabine fairly easy to tolerate, with mostly mild but continuous nausea the main side effect. Zofran, stemetil and maxoran were variously used as anti-emetics. The Daunorubicin was administered in a 15-20 minute push through the iv. This gave me more severe nausea, and the two together were very fatiguing.

Most of that week was spent in bed, on constant iv. You were encouraged to get up and move around - some days you might do 3-4 laps of the hallways, others it was all you could do to sit in a chair. They encouraged you to eat all your meals and drink lots of water - at least 3 X 500ml glasses a day (did I mention I hate drinking water) - I started having 2-3 cans of ginger ale a day instead.

The other major side effects of these treatments are heart problems (your vitals are taken several times a day, and your heart and chest is listened to at least twice a day at nurse shift change), mouth sores, stomach and intestinal tract issues, and infections. I came in on an anti-viral and anti--biotic pills, which they continued. At some point they started giving me an iv anti-fungal as well. The wanted result of the chemo, an biggest side effect is that all you blood numbers almost immediately start to crash - HgB, Plt, WBC and neuts are the ones that they follow, and chart on a while board opposite your bed. Every morning, between 5-6 in the morning, they wake you and take blood for checking CBC's and electrolytes, and every three days for typing and cross-matching.

Within a couple of days your counts are crashing - which is a good thing, believe it or not, as it means that the chemo is having the intended effects. When (not if) your HgB goes below 80 (8.0 US) or your Plt's go below 10, you get transfusions of irradiated packed red cells or platelets as needed, sometimes two units. Your WBC's and neuts quickly go to 0.01 and 0.00 respectively and stay there for a good 7-10 days. This is what they want, as the leukemic cells are all WBC's.

The second week (days 8-14) are more of the same. Generally you get transfused every 1, 2 or at most 3 days with both red cells and platelets. At some point during this week, your neuts pop up a number like 0.01 and everyone comments on it - it means that the WBC's are trying to differentiate. This if the second positive sign that maybe, just maybe, the treatment is working. At this point in time two or three very strange things happened to me - I got laryngitis, I started having bad headaches, and a few days later, my blood pressure, which is usually and had been quite low normal, jumped up. This started a flurry of activity - I was taken off my pills and all antibiotics and anti-virals were switched to iv; I went for a CT of the head, and later, my blood pressure was kept under much closer watch. For a while I was on morphine and Tylenol for the headaches, and I still get nausea drugs occasionally on demand. Eventually, they also sent me for a CT of the chest, and then one of the torso, and finally an MRI of the head - I guess there was NOTHING there when they did the CT :). The headaches went away on their own after a few days, but the higher blood pressure is lingering.

I understand that in the next 3-4 days, if things are working right, both the WBC's and neuts will very slowly start to rise. Also, the Plt's and HgB should stabilize and then start to go up on their own, marking the end of the transfusions. Ideally, when the WBC's hit 1.0 and neuts 0.5 they send you home for the next phase of treatment - consolidation chemo! If the numbers are rising and you have no infection issues and are eating and drinking ok, they may not wait for the WBC's and Plt's to hit those targets to let you go. That's it for now.

Thursday, 13 June, 2013

Post Autologous Transplant Update - Secondary AML

Thank you to everyone for your good wishes, prayers and kind words. I have been overwhelmed by the responses from so many of you, and haven't had the time to respond to each of you individually as yet. Please accepts my thanks and love - all of you.

The past few days have been nerve-wracking and busy. I've been in the hospital all this week, getting iv antibiotics and a platelet and a blood transfusion as well. I have been meeting with the doctors to arrive at a treatment regime.

Late yesterday we decided that I would partake in a Phase III Multicentre Randomized Trial of CPX-351 (Cytarabine:Daunorubicin) Liposome Injection vs Cytarabine and Daunorubicin. We decided to go this route as the other option, a combo known as FLAG-IDA (Fludarabine, Cytarabine, GCSF (Neupogen), and Idarubacin) can still be used should I fail to do well with whichever arm of the C-D I fall into, but I cannot do that the other way around. Either way, I will have to follow up with an allo transplant. The decision to do the trial brought a flurry of activity today - a resting MUGA (heart CT with a contrast), echocardiogram, and the ever popular BMB (just aspirate), and an hour long interview with the trial co-ordinator getting a health history that is almost entirely contained in this hospital's file on me. Because the trial won't start until Monday I will be able to go home Friday sometime and come back in on Sunday night. It will be nice to sleep in my own bed for a couple of nights before spending another month or so here.

Thanks again everyone

Sunday, 9 June, 2013

Post Autologous Transplant Update - Possible Transformation to AML (Part 2)

Its been a real roller coaster the past 10 days since receiving the diagnosis of AML. The cytogenetics came back and confirmed the onc's suspicions, with a deletion in chromosome 7q. The initial plan was to do a month of chemo, look for a donor, and go ahead with an allo transplant. Then we decided to wait on starting the chemo until a donor had been identified.

On Friday I had a Hickman catheter put in, during which they gave me an infusion of platelets. I also started an oral chemo (Hydorxyurea, I think) and a pill to deal with the buildup of uric acid. Earlier in the week I had a blood transfusion. In the middle of the night (4 a.m.) Fri / Sat I woke up with the shivers that just wouldn't stop. My temperature was normal, but I couldn't stop shivering. We decided to go to the hospital, but when I got up I felt really ill, so we called and ambulance. I have been in a local hospital since then until now, get broad spectrum antibiotics.

As of this morning, my Hbc is back down to 80 (8.0) and my platelets are 15. My WBC's are around 10 but are mostly blasts. The local hospital has been in touch with my regular cancer centre and I am to be transferred there by ambulance in the morning. I don't know what the current treatment plan will be, but I'm sure I'll find out tomorrow. This has all been a huge shock to the family. After 15 years of dealing with WM, and the relatively "relaxed" pace in dealing with it, things are moving way too fast!

Sunday, 9 June, 2013

Post Autologous Transplant Update - Possible Transformation to AML

There has in the past been much discussion on someone with WM either contracting a secondary cancer or undergoing transformation of the WM. The focus of these discussions has generally been around the use of Fludarabine, which some studies show to have a slightly higher risk of causing AML or MDS.

Last week (May 29) I went to the hospital for my monthly IVIG infusion. I was feeling more fatigued than usual, a fatigue that I had learned to associate with a fall Hgb. Prior to the IVIG, I get my blood taken and tested for CBC levels, and typing and a cross-match to get the IgG.

I always ask for a copy of my bloodwork. The nurse inserted the IV in my arm, and started the pre-meds for the IVIG (Tylenol and Benadryl). She came back with my bloodwork and a message from my onc's secretary saying to hold off the IVIG as the doctor (who was in clinic that day) might want to see me. My HgB was down from 116 (11.6 USD) to 75 (7.5). My platelets fell from 75 to 25; WBC's actually went up from 0.8 to 1.2; but neutrophils dropped from a low 0.40 to 0.00! Lastly, an number appeared in my bloodwork that has never shown up in the 15 years that I've had WM -- Blasts 0.73. All numbers are compared to a month earlier.

I went to clinic and was taken right in. The resident updated my history and my onc came in a few minutes later. She said that she didn't like what she saw, and wanted to do a BMB to see what was going on, which we did right then and there. She told me it would be a week before preliminary results came back, and another week or two to get all the cytogenetics back. We made an appointment for the following Monday, and I went back to the transfusion centre for two units of packed red blood and my IVIG. The next morning at 9:30 she called me. As soon as I heard her voice I knew that the news wasn't good. The preliminary "eyeball" of a blood smear indicated that I had developed AML. She had already set up an appointment for me with the AML specialist at the hospital for 9:00 the next morning.

When I saw him that Wednesday, he told me that it would take a week or two for all the results to come back, and they needed those to confirm a diagnosis. However, my medical history, the current bloodwork, and the visual identification of blasts in the blood smear made him 99.99% sure that I now had what they call Secondary AML. This was not a transformation. My WM, although currently "dormant", was still in the background.

Although they need the results of the genetics to confirm this, it is his belief that my AML has been caused by all of the previous treatments for WM - hence secondary. I told him that I suppose I shouldn't be surprized as I had take Fludarabine twice over the years. He said that he doubted that it was the Fludarabine, as they get almost no cases of Secondary AML from cancer patients who's primary treatment is Fludarabine. He told me the biggest culprit they see is cyclophosphamide, which I have also had more than my fair share of over the years. They are getting patients from all types of cancers whose treatment regimens include cyclo with Secondary AML and with MDS.

So now my battle focus has changed, from a slow and reasonably manageable WM, to a rapid and high risk AML. Sometime in the next week or so, I will have a Hickman line put in. In the next two or three weeks I will be admitted to the cancer hospital for a month of in-patient chemo, which I've been told may be worse that what I went through for the ASCT 15 months ago. They will begin a search for a donor match, and I will need to have an allo transplant once one is found. The chemo may put me into a remission, but I'm told the relapse rate is virtually 100% over time without the allo transplant. I asked him about my WM and he replied "What WM? You have had no M-spike for 2 1/2 years now. It's lying there in the background, but not a factor. And the allo transplant should take care of that, too!".

The choice of chemo regimen will be partially dictated by the genetic makeup of the AML, so we have to wait for the results before any decisions will be made as to which chemo route to go. There is a Phase III randomised trial starting, which is a consideration. If I choose it, I will be the first person enrolled in it (as I was many years ago for the Phase II WM Velcade trial). I will be transfusion dependent for red blood and platelets for the next 6-8 weeks at least.

Although it is not WM, I will try to keep this list advised as things go along, in case, on the rare occasion, another of us goes down this road. I should mention that about 50% of Secondary MDS progresses into AML within 6 months, so much of this may be pertinent to those who contract MDS as well.



Mon, 7 January, 2013

Day 365 - First Re-Birthday!

Well, today is the first anniversary of my ASCT! A fair bit has occurred since I last reported on Nov 26th, right before my first Rituxan maintenance infusion. I'll outline some of that below. In general, however, I must say that I am happy that I did the ASCT - a year, until recently, relatively free of infections, hospital visits and other concerns.

On Nov. 22, 2012, I did bloodwork in conjunction with my onc appointment to be cleared to have the first of the maintenance Rituxan treatments. At that time my Hgb was 13.4 (134 Canada / UK etc.), WBC's 2.2, neuts 1.1, Platelets 113 and IgM 550 (0.55) with an immeasurable M-spike! I have enjoyed IgM in the normal range since Feb 2011 and no quantifiable M-spike since March 2011.

I had the first maintenance Rituxan on Nov 27th. I had to have it in a private clinic and pay for it (mostly through my private insurance) as the government plan here won't pay for "re-treatment" by Rituxan, and since this maintenance isn't following a Rituxan regimen (at least within a "reasonable" amount of time), it isn't considered maintenance but re-treatment by them. The pre-meds, consisting of dexamentasone, tylenol 3 and benadryl, started around 4:30 p.m. and the Rituxan infusion started about 2 minutes later. Things went well as we started slow and moved the rate up to 200 ml, however, when we hit 300 ml, I felt flushed and new the hives were about to manifest themselves. This was now around 7 pm or so. They stopped the infusion, gave me benadryl, dex and demerol, and about half an hour later resumed the infusion at 200 ml. I think that they eventually moved the rate back to 300 ml. I got through the rest of the infusion without serious incident, and was out around 10 p.m. Considering most of my earlier experiences with Rituxan, this was a walk in the park.

We went to Florida for a week on Dec. 4th. Great weather, lots of good food and even some rest! I was not ready to return when we got back the evening of the 11th. The night of the 13th /14th I started to experience a fever, and felt heavy in the chest. The fever continued over the weekend, bouncing up and down between 99.5 and 101.7, and I started to cough. I also started an antibiotic that I always keep on hand (with my propensity to chest infections). However, Monday morning, my fever spiked to 103.8 so I headed to the emerg of one of the area hospitals. They put me in an isolation room in emerg, took urine and blood samples and nasal swabs, gave me tylenol and iv antibiotics and then left me alone, checking in very occasionally. Early Tuesday, a doctor came in and told be I had tested positive for the flu and that they were admitting me. They started me on Tamiflu. After a total of 36 hours in emerg, an isolation bed came available and I was admitted. By Thursday, the fever was gone. They stopped the antibiotics on Wednesday once all the testing on the flu was completed and confirmed that it was Influenza A. I had taken my flu shot in October, but I don't think this particular strain was included in the cocktail. Thursday night I was discharged with a Tamiflu prescription, and the trailing cough didn't disappear until just the past day or two. I have since found out that this is the worst flu season since the SARS epidemic.

Meanwhile, my blood numbers when admitted to the hospital were Hgb 12.0 (120); WBC 1.4; neuts 0.89 (eventually dropped to 0.5 before rebounding); and platelets bottomed at 75. They gave me neupogen for three days on the Tuesday, after which my WBC's and neuts bounced way up to almost 4 and 2 respectively. Since discharge, other than the cough and some fatigue, I've been fine. I went to my primary cancer hospital and had blood drawn last week, and the results showed that my numbers had returned to basically the area of the November numbers.

In looking over the past year since the transplant, I have to say it was easier than I anticipated. The only issues seem to be a nagging fatigue - but then I have been feeling that for years - and since November, the two chest infections and the flu. I don't know if these are signs that my immune system still hasn't rebounded, which was one of the reasons for doing the transplant, or just bad luck in the strains of the germs and viruses that are going around now. I have been able to start to get back to work, as long as I don't push myself too hard, and most things have returned to normal. I try to stay away from my grandsons when they have colds, but that is an almost impossible task - they are the best medicine around! My wife is vigilant (for me) in staying on my case to wash my hands frequently and use disinfectant gels.

All the best for the New Year, and good health to you all.

Mon, 26 November, 2012

Day 324

It has been several months since I last updated this blog. In general, things have been going great. My M-spike continues to be immeasurable, with my IgM in the normal range of 550 (0.55 Cdn). My IgG continues to be low, but my onc does not seem to have any concerns so far with it. My Hgb has been constantly running in the low to mid 13's (130's) for 6 months now. My WBC's generally run low, bouncing around from 2.2 to 3.3 (having once touched 4.0) and my neuts running 1.1 to 2.19 (touching 3.0 the same day as the WBC high) since May. All in all, we are very pleased with the results.

More importantly, until late October I hadn't had one chest infection, cold or other ailment that is attributable to a compromised immune system. You may recall from my early postings that I was hospitalized 5 times with infections from the summer of 2011 until the transplant, and this was a major impetus in proceeding with the transplant when we did. However, I have had two chest infections in the past month, which is a concern.

For several months now, my onc and I have been discussing my going on a Rituxan maintenance program to try and enhance the PFS of the ASCT. There are no studies or other literature on doing a maintenance program following an ASCT. My onc is basing her recommendation based on the success of maintenance Rituxan following a treatment course of Rituxan either alone or in combination. I was sitting on the fence, but the onset of the two chest infections had made me decide to proceed. This is not covered as an approved treatment under the Ontario, Canada medical system, so I have to cover it myself. My private drug plan has approved partial coverage, and the manufacturer has agreed to provide assistance through their plan, so the costs will be pretty much covered. I am scheduled to do the first infusion tomorrow night, and will do one every 3 months for at least 2 years.

Rituxan and I are not friends. The first round of Rituxan (R+C(V)P) I reacted severely to every infusion, taking 8-12 hours (or more, a couple of times) to infuse it. I have had virtually every recorded infusion reaction imaginable, except heart issues - rashes, hives, rigors, bone pain, chills, sweats, headaches come to mind immediately, usually several of these occurring more than once in a given infusion. The second time I had Rituxan a few years later (F+C) we premedicated me for 3 days and immediately before infusion with a variety of meds. We then started the infusion slowly, bumping the rate every 30-45 minutes, and not taking it over 200 ml/hr. This actually worked, with either no or 1 reaction during the infusion, and keeping the infusion time down to 5 hours or so. The two times that it didn't work, the nurse ignored the infusion cap rate and sped the infusion up more quickly - and those infusions ended up taking 2-3 hours longer due to having to stop the infusion, treat the reaction, and then start again at a reduced rate. I have spoken to the private clinic (the same one I was at last time) and told them to let the nurses and doctor know in advance my "special" needs, and have asked my onc to include these in her instructions to them.

I don't expect to see any change in my numbers from this treatment. We won't likely ever know for sure if it has any effect on PFS in my case. However, there is limited downside to doing this - if my reactions are serious enough again, we will just discontinue the maintenance program, and if they are manageable, we will continue. Kind of being a trial of one, which has a probability of error of 100% and a reliability factor of 0. However, if enough oncs decide to try this and anyone ever decides to do a retrospective study, the data will be there.

Because of the combination of illness and treatments, my wife and I haven't managed a vacation in about 5-6 years. This year, post transplant, we did manage a couple of weekends away, one to the Ed Forum in Philadelphia, and to a September long weekend wedding in Cleveland. We have decided to head to Hollywood, Florida for a week next week and see how that goes before trying anything more adventurous. My private drug plan is good for Florida, the hospitals and clinics are easily accessible, and there are many flights each day from both Miami and Ft Lauderdale should I need to get back home. An easy choice for a first vacation.

I'll try to update this again when I get back, and certainly will do so around my first "birthday" post ASCT.

Best to you all.

Sat, 19 May, 2012

Day 133

Today is exactly 19 weeks since the day of my auto transplant. It really doesn't seem like 4 1/2 months have gone by.

This past Thursday I had an appointment with my onc. I was very interested in seeing the results of my bloodwork, as my neutriphyls had been down to 0.3 and WBC's at 1.0 my last visit. For the last month I have been fighting a chest infection and cough for which I took azithromax for 5 days, and then levaquin for 10 days in an effort to clear it up. It finally seems to have mostly gone away in the past couple of days.

I was very pleased with the bloodwork results - WBC's up to 2.9 and neutriphyls just hitting the "normal" zone at 2.0. My Hgb us 132 and platelets 149, so all seems to be ok. I also had a BMB done at my last visit March 22nd. According to it, the WM has virtually disappeared from my bone marrow. However, in another blood test, I believe by immunofixation (but I'm not sure) I still tested positive for WM cells, so the disease hasn't completely disappeared.

I am still experiencing fatigue with moderate activity or if I work for an hour or two, and problems concentrating and with short term memory. Did I say that my bloodwork was pretty good and most of the disease was gone?Big Smiling Face Image!

My onc wants me to consider doing a rituxan maintenance program. The drug will not be covered for me by the Ontario drug program. We will apply to my private insurer to see if they will cover it (at least partially) and go from there. There doesn't seem to be any data on rituxan (or any other) maintenance after a transplant. Her theory is that the evidence to date shows that rituxan maintenance prolongs the PFS after most other treatments, so it should after a transplant as well. I hope to get some feedback about that at the Ed Forum.

That's the other good news - that we will be able to attend the Ed Forum, and I booked our air travel yesterday, so we'll see you there.

I'm off to see the grandsons now at my brother's pool. I don't see the onc again until August. So unless something comes up before then (like rituxan maintenance), I probably won't add to this blog until then. Hope you all have a great summer.

Thu, 27 Apr, 2012

Day 111

Its been just over a month since I last posted. In general, things have not changed a great deal. There seems to be some improvement in the general fatigue, but I still tire pretty easily. Concentration for is still difficult for extended periods of time. I continue to work a little out of my house, and have attended a few meetings, but am still no where near up to speed.

The biggest concern are the low neutriphyls and WBC's. I picked up some kind of chest infection a week ago. I took a course of Zithromax but it still seems to be hanging around. I'll probably call my GP today and go see her in case I need something stronger. I don't see my onc again until May 17th. My visit with her then will determine whether I go to the Ed Forum or not. I've booked the conference and room, as those can be easily cancelled, but not air transport yet.

Not everything is negative, however. Grandson #2, Matthew Brandon, arrived 2 1/2 weeks ago. Amazing what a new baby does for the psyche! Mother and Matthew are both doing well, and we see him every chance we get. Probably exposing my immune system every time we see him and his older brother, but some risks are worth taking!

I'll try to update again after my oncologist visit. Hope to see you all in Philly.

Thu, 22 Mar, 2012

Day 75

Today I had a follow-up visit with my oncologist, which I was expecting to be a routine 5-10 minute visit given my last visit and the fact that my only complaints were continuing fatigue, lack of concentration and a return of my PN, which had reduced during and following the ASCT.

Two surprises were awaiting me. Firstly, she wanted, either at this visit or the next, to do a BMB to confirm the results of my last few IgM and M-spike readings - my IgM as at March 20th was 42 (0.42) and my M-spike had been unquantifiable for over the past year. I opted to do it right away, and had it done under local freezing a half hour later.

The bigger issue for me, however, was that my WBC's and neutriphyls had tumbled over the past month, WBC's dropping from 3.7 to 1.0, and neuts from 2.50 to 0.30 (critical!). My onc, although concerned about this, didn't feel that any further action was necessary at this time - I am still on an antibiotic and an anti-viral post transplant. She suspects that my bone marrow may be permanently impaired by the fludarabine, and that these types of readings my end up a fact of life for me. Interestingly enough, both my Hgb and platelets went up slightly over the past month (Hgb 12.4 to 12.6 (124 to 126) and platelets 150 to 166). Maybe the BMB will shed some light on the WBC situation as well.

The drop in WBC's and neuts to pre-ASCT values is troubling in that they were the final reason for going ahead with the ASCT in the first place. We wanted to bring those values up and get off of the infection merry-go-round that I had been on last summer and fall. I am hoping that this is a just temporary setback, and that these numbers will turn around over the coming months.

The last thing that my onc brought up was the possibility of doing some kind of maintenance program, possibly Rituxan every three months. This, of course, isn't covered at this time here in Ontario, and I have to see if my drug plan will allow it and cover their portion of it. There is no clinical trial based evidence for doing this post transplant, but it is an idea that apparently is being tried in some centres. No decision to do this has been made as yet.

She doesn't want to see me again until mid May, and didn't advise me to take any further special precautions that I'm not already taking, or give me any restrictions, dietary or otherwise.

Mon, 12 Mar, 2012

Day 65

At my last appointment with my oncologist (Feb 23) I was cleared to start going out in public, and to be able to remove most of the dietary restrictions. She also did not want to see me again for a month. I am still on pantoprazole, Stemitil (prochlorperazine), septrim, Famcilovir and Sinutab. However, today I am stopping the stemitil and I have cut back on the Sinutab with an eye to stopping it as well. The major side effects that I am still experiencing are that I fatigue easily and a lack of concentration. If it continues like this, I'm sure it will be several weeks before I can work with any consistency. Otherwise I feel well, and have started to take the dog for short walks -- this early spring-like weather we've been having is certainly a big help!

I had promised several of you to give some numbers, so here they are:

My last chemo treatments started in October 2010 and ended in April 2011 (Rituxan + fludarabine + cyclophosphamide). In September 2010 my IgM was 2510 (25.10), M-spike was 17.5, Hgb 8.4 (84) (it hit 7.4 (74) a couple of weeks later when I required a transfusion), Platelets of 299, WBC's of 2.3 and neutriphyls of 1.2. In April 2011 the IgM was 93 (0.93), M-spike was unquantifiable, Hgb 10.5 (105), Platelets 93, WBC's 1.7 and neutriphyls 1.01. As you can see, the chemo did great work on my IgM and Hgb, but did a number on the WBC's and neuts. In fact for the next 9-10 months, until my transplant, my IgM stayed stable with no quantifiable M-spike and Hgb and platelets continued to rise, but my WBC's were at 1.0 or less and neutriphyls between 0.15 and 0.80 except for a few days during and after neupogen support. I ended up in the hospital 4 times with infections that need to be treated with iv antibiotics between June and November. That was the deciding factor to proceed with the ASCT.

When I was released from the hospital after my ASCT, my Hgb was 10.2 (102), platelets 41, WBC's 2.1 and neuts around 1.2. At my last visit on Feb 23, 2012, my Hgb was 12.4 (124), platelets 150, WBC's 3.7 and neuts 2.50. I haven't had an IgM measurement taken since December. My WBC's and neuts haven't been this high (without neupogen support) since January 2009.

At this writing, I plan on attending the Ed Forum in Philly. Hope to see you all there.

Sun, 19 Feb, 2012

Day 40

The past month has been relatively uneventful. I saw my oncologist weekly on Thursdays until last Thursday. I am now on bi-weekly visits. I remained on a daily bolus at home administered by a visiting nurse until last Thursday, at which time my oncologist felt that I didn't require it anymore.

My nagging cough lingered until I stopped the bolus. I didn't sleep much most nights, and have been quite tired. When I stopped the bolus, the cough lessened greatly. I have stopped taking the cough medicine most nights, and have started to catch up on some sleep. I was on levofloxacin for 10 days and dexamethazone for a week, which also helped with the cough a great deal. I was also on prochlorazine (Stemitil) for nausea, but had to go off of it while taking the antibiotic due to a potential dangerous reaction between the two. I went on ondasetron (Zofran) for 2 weeks while on the antibiotic, and then switched back to the Stemitil.

I still get queasy form time to time, so I remain on the Stemitil, as well as pantopazole (for stomach acid and reflux). I am also taking Nasonex, the puffer that I was put on earlier, and take Sinutab, primarily at night, all to prevent the cough from getting worse.

I still remain fatigued, but my job allows me to work from home, so I put in an hour here and there. I don't seem to be able to concentrate for more than an hour at a time, and then need to rest. The same seems to go for reading or doing puzzles. For someone who has always been a bit of a workaholic, I find this frustrating.

My oncologist has allowed me to leave the house, but to stay away from crowds and sick people. I have been out in the car for a drive a couple of times, and had a few visitor to the house. The best was a visit from my grandson last Saturday, who I hadn't seen in a month!

Thu, 26 Jan, 2012

Day 19

Left the house at 7:00 a.m. to make the 35 minute trip (out of rush hour) to the hospital. My appointment with the onc isn't until 11:30, but I have to give blood at least an hour before that, and if I leave in rush hour, it adds at least an hour to the trip! We got to the hospital and parked and was at the blood lab area before 8:00 a.m. The nurse who took me in was excellent - a former 15 year member of the transplant unit. She took my blood, and then took my blood pressure both sitting and standing. She was unhappy with how low it was, particularly once I stood, so she called the clinic I was going to and got orders to give me a bolous to up my fluids. This took about two hours. She also had them order me a chest x-ray, which I went to dragging the iv tree while getting the fluids. This was all great, because if I had just gone to the doctor I probably would have had to do all that after seeing her.

By 10:30 I was in the clinic waiting to see my oncologist. It was one of those days, and I didn't get in to see her until almost 1:00 p.m. - very uncharacteristically late for her. Since we had talked just two days ago, it was mostly updating what we discussed then. She did hear a bit of a wheeze in my chest but no congestion, and the x-ray was clear. She felt that my bronchial tubes were having spasms, probably due to irritation. She told me to continue using the Stemitil and pantoprazole, but also gave me a script for a salbutamol inhaler to use four times a day, and a cough medicine to use every 4-6 hours as needed, if needed. She was also a bit concerned with my hydration, so ordered home care to come to my house daily for the next week and give me a bolous. She will see me again in a week, but told me to call her right away if things changed for the worse or I developed a fever. We finally got back home around 2-2:30 p.m. I'm waiting now for the supplies to be delivered for the home care, and to hear from the home care nurse to set the appointments for the week.

Thu, 26 Jan, 2012

Days 16-18

These may have been the worst 3 days of the three weeks so far. I can't lie down without coughing, and the cough isn't letting me sleep. Funny, I had some of this cough in the hospital, but it didn't seem this bad. It is a very dry, unproductive cough, but kicks in EVERY time I lie down, and often when sitting as well. Even Ativan doesn't help me sleep. I called my onc on Tuesday, who doubled my Stemitil (prochlorperazine) to 4 times a day (anti-nausea) and the pantoprazole (anti-reflux) to twice a day - she felt that reflux, which I had some difficulty with in the hospital, was the main culprit. I also had a constantly slightly runny nose, so I also went on Sinutab 4 times a day. This didn't seem to help a whole lot, although Wednesday night I finally got a total of 3 hours sleep, probably as much as I'd had the previous two days combined. I am going into the hospital tomorrow for my first check-up since my release, so we can discuss this with the onc more then. I am supposed to have the equivalent of 4 bottles of water a day minimum, but I've never been a water drinker (I have a couple of great W.C. Fields lines about that) and so have been having lots of hot tea and ginger ale. Doesn't seem to help though.

Sun 22 Jan, 2012

Day 15

There is a full time staff doctor (oncologist) who mans the auto transplant wards during the week. On weekend days, one of the hospital staff oncologists does this duty on rotation, and residents look after all the night shifts. On Friday, the staff onc told me that he thought I'd be heading home early the following week. So I was surprised on Sunday when the onc on duty told me that I could head home that day. He felt that everything was stable enough that I no longer needed to be in the hospital - no fevers, I was eating and drinking, and my WBC's, neuts, platelets and Hgb's were all acceptable.

It felt great to leave the hospital and head home. We left before they could change their minds. I still was exhausted and having trouble sleeping, but I looked forward to my own bed. Too bad this didn't mean that sleep was certain. However, all being equal, I was glad to be home.

Sun to Sat 15-21 Jan, 2012

Days 8-14

The week has been pretty much a blur. The drug routine, with the addition of daily neupogen, has remained the same as I outlined the other day. The overwhelming feeling is one of fatigue - I am tired almost all the time. Friends and family have brought me 5 books to read, and 2 baseball "rags" for rotisserie baseball (I've been playing with the same basic group of guys for 20 years) - I've looked at all the covers but haven't been able to read a word as yet.

The doctors seem to be happy with my progress - with the neupogen my WBC's and neutriphyls are doing well, and my Hbg is good. I'll do a "numbers" blog entry down the road. One of the big pushes is to get everyone up walking the halls, which I try to do 3-4 times a day - not always successfully. The end of this week has certainly been better than the beginning of the week.

I'm not sure why I didn't cover this before, but the room I'm in is a semi-private room. I was on my own for the first couple of days, and then had a roommate move in. Talk about a small world, the roomie (Peter) was exactly my age and lived 4 blocks from me! He is an MM patient who is on his second auto transplant, having had one about 14 years ago. We hit it off right away. Unfortunately, he was moved out to a private room 2-3 days later, but we continue to check on each other. A day later, a new roommate arrived, also an MM patient. He had his stem cells infused just the other day, so he is about a week behind me.

The steam of visitors continues daily, but often I barely remember who was there. It is nice to have visitors, but I really can say that I've been an awful host. My wife, children and step-children have been great - constant companions and always concerned.

Wed, Thu, Fri, Sat, 11-14 Jan, 2012

Days 4, 5, 6, & 7 - "Lows and Highs"

My numbers "are coming down nicelly" according to the doc making rounds. Still WBC's and neuts are 0.3 & 0.23 the morning of day six. Platelets and Haemogloben falling too. Watch for a blog entry on numbers over the next couple of days. Today's note is mostly about ..... DRUGS, DRUGS, DRUGS!

I am astounded by the number of pills I take in a day, not to mention by infusion as well. Our day here starts at around 5 A.M. when they wake you to take your vitals and blood. The vitals are taken about every four hours or so - blood pressure, heart rate, oxygin levle, and temperature. Questions are always asked by the staff to draw out any new developments or recurring problems. The nurses here - ALL that I've had any interaction with here - are topnotch.

So I will outline a typical day - drugwise - as best I can remember it (you'll see as you go down the list:))

5:00 Kytril via iv 1 mg (anti-emetic) on regular order 2X daily
        Heparin inj 3 ml blood thinner ussed when flushing lines.
6:00 Stemil via iv 10 mg (anti-emetic) on regular order 4X daily
8:30 Multivitamin od 1 tab multivitimin
        Almagel od 10-20 mL coating of digestive tract help prevent "heartburn" and pain (regular evey 6 hours as needed)
10:00 Ranitadine od 150 mg Zantac - antacid (twice daily)
        Famcilovir od 250 mg anti-viral (twice daily)
        Gravol via iv ??? anti-emetic - every four hours as needed
        Nablione od 0.5 mg anti-emetic and anti-nausea and pain med - 2X daily (didn't start until today at 10:00 PM)
Noon Stemil via iv 10 mg (anti-emetic) on regular order 4X daily
2:00 Fluconazole via iv 400 mg ant-microbial
        Gravol via iv ??? anti-emetic - every four hours as needed
5:00 Kytril via iv 1 mg (anti-emetic) on regular order 2X daily
        Almagel od 10-20 mL coating of digestive tract help prevent "heartburn" and pain (regular evey 6 hours as needed)
6:00 Stemil via iv 10 mg (anti-emetic) on regular order 4X daily
        Neupogen inj 300 mg GCSF white cell growth factor - daily starting day 7 (today)
8:00 Decadron iv 20 mg steroid. One time shot for nausea. If works will consider more.
        Gravol via iv ??? anti-emetic - every four hours as needed
10:00 Septra od 80/400 mg Antibiotic given Mon, Wed, Fri
        Famcilovir od 250 mg anti-viral (twice daily)
        Moxifloxacin via iv 400 mg antibiotic.
        Ranitadine od 150 mg Zantac - antacid (twice daily)
        Nablione od 0.5 mg anti-emetic and anti-nausea and pain med - 2X daily (didn't start until today at 10:00 PM)
        Almagel od 10-20 mL coating of digestive tract help prevent "heartburn" and pain (regular evey 6 hours as needed)
        Codeine od 30 mg painkiller - on demand 30-60 mg every 4 hours
        Lorazepam od 1 mg subligual. daily as needed.
        Stemil via iv 10 mg (anti-emetic) on regular order 4X daily
4:00 Gravol via iv ??? anti-emetic - every four hours as needed
all day Mouthwash with sodium bicarbonate - every two hours or so as remembered.

And people wonder why they don't get rest in the hospital! I've listed all that I can remember in the last day. It is pretty typical at this time. If you take any medications on a daily basis for other reasons, they are added to this list, because anything I take is already listed (and regularly used in the program). As you can tell from the list, my biggest issues are gastro-intestinal - nausea and heartburn/pain, and some diarrhea.

The one drug on the list that many might not recognise is Nablione (od 0.5 mg anti-emetic and anti-nausea and pain med - 2X daily). This is the reduced main active ingreadient in marijuana - the medical marijuana pill! It isn't offered in general, but in cases like mine where none of the anti-emetics seems to work on its own, or in some cases of sleep and pain management, they'll pull them out, so lucky me. The single dose of decadron was the lead-in to taking the Nabilone to settle the nausea together. It worked, the first few hours of no nausea at all.

The last four days have been much the same. Lots of nausea, and burning in the stomach and esophaugus. The drugs control and limit them, but the feeling of nausea is always there, and the burning comes and goes. I'm embarassed to admit that I've given up my Tim's coffees several times a day for Tim's hot chocolate instead because it is much more soothing. All considered, it really hasn't been a difficult experience to date.

In terms of my timetable, Day 7 is a highlite. It is the day that you start taking neupogen. My blood numbers, which I'll highlight in the next couple of days, are bottoming out from the old cells dieing off, and the new cells should be making their home in my bone marrow. If all is right, I'll bottom out in the next day or two, and the numbers should begin to improve by day 10 or so.

Sun, Mon,Tues, 8-10 Jan, 2012

Days 1, 2, & 3

The past two days haven't been too bad. I get a little nausea from time to time, and the give me meds for it whenever I feel that I need it. I am on constant iv fluids at a slow infusion rate. I can walk around the unit, but must wear a mask if I go outside of my room.

I do find that I tire more easily and need to lie down regularily. It is also difficult to concentrate - even writing something like this takes some effort. I have been brought 5-6 books to read, but don't have the concentration to read them for more than a few minutes at a time, and then find myself rereading passages because I have difficulty comprehending them.

My blood counts are starting to come down, as is my weight. Particularly WBC's and Neutriphyls are comming down, and I can expect them to go to zero in the next few days.

I have had lots of visitors, mostly first thing in the morning and at night. I'm going to stop listing them all, but I do appreciate all of the visits.

I'd best describe the past two days as like waiting for the other shoe to drop - and drop it will I am guaranteed by the nurses and doctors! The staff here is fanstastic - all as helpful and attentive as one needs. The food, well its hospital food, and let's leave it at that!!

Sat, 07 Jan, 2012

Day 0

Well, infusion day has arrived. Only can have fluids until after the transplant in case of nausea. Great idea, as it turned out. They premedicated me with Kytril, tylenol and benedryl. I would receive three bags of stem cells. They told me some people react to the preservative that is with the stem cells. They say there is an odour of creamed corn and some people experience a bad taste, so they suggest that you suck on mints during the transfusion.

We started the first bag of cells at 11:00 a.m. It took 31 minutes to receive all three bags. The bags, frozen in my case since I harvested in 2004, are thawed out one at a time. They start thawing the second bag while you receive the first one, etc. Within seconds of starting the first bag I was vomiting, and it lasted all through the first infusion, just over 5 minutes. No fun at all, specially once your stomach is empty and you keep trying to throw up. The nurse gave me a dose of gravol iv between the first and second bag, and that helped a lot. I only gagged a couple of times, but felt nauseous throughout. I didn't throw up for the third bag at all, but still experiences the nauseous feeling. Interestingly enough, the nausea almost completely disappeared as soon as the infusions stopped.

I am now required to wear a mask whenever I leave my room. I was given a booklet on what I can and can't eat, and there is a very long list of no-no's, most of which are my staples (including dim sum, sushi, restaurant food in general, dairy, rare or medium rare food of any kind, etc.). A monk's existence if you ask me!

Today's visitors included my brother and his wife, my wife, my wife's brother and his wife, my father in law, one of my sons and daugher-in-law, my step son and step daughter, my daughter, and most importantly (sorry everyone else) my grandson. Because he is a two year old day care attendee, he is a bug factory, so this may be the only time I can get close to him for 2-3 weeks unless I see him tomorrow.

I am also starting to experience some diarrea, which could be from the chemo or just be. The other thing, which I forgot to mention yesterday, is that they have given me a mouthwash of distilled water and bicarbonate of soda to use several times a day to try to stave off or reduce the inevitable mouth sores.

I am also feeling more tired, but hospitals do that to you too. From what I hear, this is nothing compare to the fatigue that will set in in a couple of days. Somethings to look forward too!

Fri, 06 Jan, 2012

Day -1

I was visited at 5 a.m. by the nurse who hooked me to iv fluids through my Hickman line. What a pleasure not to be pricked for everything! She told me to expect chemo around 11 this morning.

About 8 a.m. (shift change is 7:30) my day nurse came in to introduce herself and take my vitals. The staff here is fantastic, everyone with positive, upbeat demeanors and seem willing to do virtually anything you reasonably ask. Even the list of potential side effects is delivered like a buffet you might want to try out (I'll pass though!).

At around 9 is was taken by wheelchair for a chest x-ray and brought back to my room. At 10 the doctor in charge of this transplant unit (a job that is rotated on a monthly basis among several of the hemo - oncs) came by and introduced himself. It was a bit eerie, as he looked like he could be my (slightly younger) brother! Even one of the nurses remarked at the likeness. He will be my main doctor while I'm here, Monday to Friday during the days. Nights are rotated (mostly among residents and more junior hemo-oncs) and weekends among all the hemo - onc staff. He new my file inside out, no mean feat for a patient diagnosed in 1998 who changed oncs in 2003 from another hospital to this one, and has had 4 rounds of treatment and a stem cell harvest since 2003. He was very pleasant, direct and had a good sense of humour (probably a good idea, rather a necessity, when dealing with me).

He went through the entire process, and what to expect day by day. The highlights were the chemo today, infusion of stem cells tomorrow, probably not experiencing any notable side effects for 4-7 days, neupogen shots starting on day 7, numbers should show signs of recovery around day 10, and a happy face on day 12, when most side effect will stop - with one notable exception - your hair generally doesn't start to fall out until this day 10-12-14 range. Day 14 is the average go home day. Goal is neutriphyls of 1.5 and general wellness.

I will touch on side effects ect. in future posts, as they occur, or might occur. Today was the chemo, which turned out to be one day of high dose melphalan, which I have never had before. Pre-meds were kytryl (an anti-emetic), dexamethazone, benedryl, lorazepam and ice chips. Yes, ice chips! It turns out that sucking on ice chips for about half an hour before taking melphalan, while taking it, and a half to one hour afterwards, slightly reduces the incidence of mouth sores (which is almost 100% with melphalan and greatly reduces the severity of the attacks. Being prone to mouth sores, I would have taken it all day!

The combination of benedryl and lorazepam really worked well. I barely remember answering questions for my nurse at one point, and then I don't remember a thing for 60-90 minutes. My wife told me that I had two visitors during that time the pharmcist when my wife tried to wake me but couldn't and the tv setup guy (because we can't get the -------g system to work for the last 24 hours - which for me is the worst side effect of being in the hopital so far what with bowl games, NHL hockey, NFL playoffs, college basketball and NBA (double yawn) all on this weekend). This goes to show that even if you don't need a caregiver to care for you physically, you need them there to advocate and answer questions on your behalf when you can't!!! By the way, I now have "basic" tv for free, but am waiting for the enhanced cable as that is where half of the good stuff is).

And speaking of visitors, there was my wife, my brother and my sister-in-law, daughter, step-daughter and step-daughter's boyfriend, and a niece who is in her second year of medical school. I have a sizable family, immediate and extended (not to mention friends) so this may start to look like a parade or a town hall meeting.

Thu, 05 Jan, 2012

The phone call I've been waiting for came after lunch today. One of the nurses from the hospital called me at work to say that a bed had opened up if I could make it in. She told me to go home for dinner and try to check into the hospital before 8:00 p.m. I had anxiously been hoping for the call for the past two weeks, and now that the call had arrived, I was just anxious. Funny, I had no nervousness about doing the ASCT until the phone rang - now I'm a bundle of nerves. I started calling all the family members to let them know, including reaching my youngest son who is in Israel for 2 weeks.

I packed an overnight bag with toiletries and clothes, and my briefcase with some work, reading and my laptop (and cell phone). My wife and step-daughter drove me to the hospital, and we checked in about 7:00. I am in a semi-private room, but the other bed is not occupied tonight as they could not reach the person today. Today is day -2 (day 0 is the day that the stem cells are infused). I was checked out by the doctor on call for the night, who ordered my meds. The nurse then came in to take my vitals, some blood, and give me an orientation of the next couple of weeks. She also changed the dressing on my Hickman line.

I am told that I will start my day at 5 a.m. with iv fluids followed by chemo at around 11 a.m. I am also told that starting tomorrow, they will take my vitals every 4 hours, including waking me up at 2 in the morning. I can see that there will be no rest for the weary!

The last few days have been difficult, with the deaths of two members of the Southern Ontario Support Group. First, Rob Murenbeeld, who was 52 years young, passed away on December 16, 2011, His WM had transformed into a diffuse large B cell lymphoma. He has an ASCT early in the summer, and had been doing well, but suddenly took a turn for the worse 5 or 6 weeks ago. He had called me in August to encourage me to go ahead with the ASCT. Yesterday, Jim Bunton, past IWMF Board member and Treasurer left us. He had been battling skin cancer the past year, and the radiation took a huge toll on him. Mentally, not the best time to be embarking on this ASCT journey, but onward we go.

See you all tomorrow.

Wed, 04 Jan, 2012

Well, here it is, January 4th, and I am still waiting for the call to come in for the ASCT. Since I last posted I have had 2 sinus infections and am just finishing a course of antibiotics. My neutrophils went down to 0.61 again, and I went on a week of daily neupogen three weeks ago, took a week off, and then went back on twice weekly injections until I go into the hospital.

As of December 19th, IgM was 0.71 (71) and the M-spike was still unquantifiable, so the "remission" seems to be holding. This is good news for the transplant, and also may mean that I may only require less chemo going into the transplant before receiving my stem cells.

I hate this waiting - once we decided to proceed, I would have preferred to go in the same day and just get it over with. No indication on how much longer it will be, although the best estimates on Dec 22nd were for this week or next.

I hope everyone had a great holiday season, and wish you all a healthy, happy and prosperous New Year.

Sun, 18 Dec, 2011

I am now on the short list at the hospital. I have been told that it could be anytime - but that means a couple of days, a couple of weeks (most likely), or even a couple of months (though that is unlikely).

I'm doing well so far. It appears that I may have the beginnings of a cold - I hope that that won't delay things.

Wed, 14 Dec, 2011

The visiting nurse just came tonight to change the bandages and flush the lines. It was also my first opportunity to really see the catheter and the two incision sites. The small incision in my neck has a dissolvable stitch and should be healed in a few days. The chest incision, where the catheter exits the body, is more heavily stitched and bandaged. These stitches will be in place for about six weeks. For the next few weeks I cannot get the site wet. I can shower if I waterproof that part of my chest. I've been told that there are "stick and seal" types of saran wrap that work well for this - I'll let you know once I've tried it out.

Tue, 13 Dec, 2011

I took the next step on the road to my ASCT today with the insertion / installation of a Hickman catheter, also known as a Central Venous Catheter.

My appointment was for 1:00 PM. I was to have no food and only clear liquids (if I needed a drink) for at least four hours prior to this time. Having never had this done before, I was pretty nervous all morning. They didn't suggest having someone come with me or to drive me home. My wife came with me, and I was happy to let her do the driving afterwards.

I registered about 20-25 minutes ahead of time and was sent to the waiting area, where they had me tale off everything above the waist and put on a gown. They took me in a few minutes early - not what most of us are used to at medical appointments!

The whole procedure took 30-45 minutes and is done with freezing. There is a doctor, nurse and technologist there, and in my case a student observing the procedure. The most painful part of the procedure is the injecting of the freezing in 2 places, not unlike having a filling done at the dentist. I did have some discomfort for part of the procedure, but nothing that was unbearable. My upper right chest and neck are sore and tender. The doctor says this will go away in a day or two. The transplant coordinator is to arrange homecare to change the bandages within 48 hours, and they are to return weekly until I go in for the ASCT to flush the lines and rebandage the incision sites.

Never having had something like this before, it is a funny sensation to have something dangling out of your chest. Reminds me of all kinds of science fiction situations, from The Matrix to the Borg.

I'm told by the transplant coordinator that I'm now officially on the waiting list and on call once my turn and a bed become available. This could be in days or weeks.

Tue, 06 Dec, 2011

On November 21st my wife and I met with my hemo/onc and made the final decision to proceed with an autologous stem cell transplant (ASCT). After seeing the doctor, she arranged for us to meet with the transplant co-ordinator, who would look after arranging all of the pre-transplant testing, having the catheter put in, and put us on the transplant list. He is also there to answer any questions that we have that may arise.

He went over the process with us. Since I already harvested my stem cells, I don't need to plan for the chemo and harvest time. Once all the testing is done and the catheter implanted, my name is placed on the active list. At that point in time we are basically "on call". At that point he told me that I shouldn't plan any out of town trips, conferences or multi-day engagements. We will get a phone call in the morning to be at the hospital in the afternoon. If we cannot go for any reason, the bed will go to the next person on the list, and we have to wait further. Being at the top of the list doesn't automatically make you next. The transplant doctors review the list as each bed comes up, and if there is an urgent case, they are bumped up. If all else is equal, then the bed goes to the person at the top of the list. Once I have the catheter implanted (next Tuesday) it could be anywhere from one day to 6-8 weeks before the actual transplant process begins.

After speaking with the co-ordinator, I went to the blood lab to give blood to be run through a series of tests. They took 13 test tubes of blood (1 short of my record). The nurse kept asking if I was ok. They test for just about everything you can imagine, from aids to hepatitis, blood typing, full chemistry, etc.

Today (December 6th, also my step-daughter's birthday - Happy Birthday Missy) I did the medical and dental check-ups. First thing this morning I did a MUGA exam - a CT scan of the heart with two different injections. The worst part of that was removing the dozen or so contacts from my hairy chest and leg after the ECG that goes with it. I discovered the only and best way to do it is fast - slow removal only becomes torture! Next I did the dental exam, which went fine, except that I have to go back tomorrow for a scaling and cleaning. Lastly was the pulmonary function testing, which consisted of blowing into various tubes, deep breaths, holding your breath and blowing against resistance. I did well with those, probably thanks to the years of playing wind instruments when I was a teenager. Assuming all the blood work and these medicals are ok, I'll have a Hickman Catheter put in next week.

Fri, 02 Dec, 2011

Some background:

I was diagnosed at age 45 in 1998 (13 years!). I was diagnosed by accident and I remained without treatment until January of 2003 - I first noticed symptoms in the spring / summer of 2002, although my oncologist at the time and I watched the IgM slowly climb and my Hgb slowly drop over the 4 1/2 years before symptoms began to show. My first symptom was tiredness, and then I started getting mild PN in my feet and night sweats (which eventually got quite bad), a horrendous cough and some mild night fevers.

I went on the Phase II clinical trial for Velcade in January, 2003, which I took for 55 weeks (18 cycles). My Hgb was 8.0 (80) and IgM topped out at 7660 (76.60) when I started. It worked quite well for me although many people get PN from it, some quite severely, I didn't, and it lasted 18 months before I was treated again. In April 2004, about three months after completing the Velcade, I harvested my stem cells for a transplant at some time in the future.

I next started treatment in the fall of 2005 with R+CVP, with Igm at 3760 (37.60) and Hgb of 81 (8.1). They had to drop the V (vincristin) due to severe neuropathy in my face and worsening PN in my feet and hands. I also had a horrendous time with the Rituxan during infusions, but took in for the full 8 rounds that were scheduled. The R+CP worked great for me while I was taking it, and works well for many people, but within 2 months of finishing it, my IgM rebounded back to 5440 (54.40) and my Hgb crashed from the mid 120's (12's) to 81 (8.1), and my first blood transfusion. I then went on F+C in Oct / Nov of 2006 to May of 2007. This worked great for me - the only serious issue was the slow recovery of the WBC and neutriphyls. I didn't need treatment again until I started R+FC in October 2010, which I took for 4 cycles until April 2011 (and was still having problems with Rituxan). On Oct 7, 2010, just before staring the R+FC, my Hgb was 74 (7.4), WBC's 2.3, Neuts 1.2, and IgM 2510 (25.10) with an M-spike of 17.5. In May 2011 my Hgb was 114 (11.4). WBC's 0.8, neuts .77, and IgM 0.84 with an M-spike so low it couldn't be quantified.

Over the past 5 months I have been hospitalized 4 times with fevers that were presumably caused by bacterial infections, although no pathenogens were ever identified. This has never happened to me before over the 13 years I've had WM. My WBC's and neuts are still extremely low (under 1.0 and 0.50 respectively for each hospital visit). I am now on Neupogen twice a week to see if we can boost them up.

My oncologist wanted me to pursue a transplant in October 2010, but the disease needed to be brought under control first. She (Dr Chen, who is one of the best know WM experts in Canada) presented my case to the transplant team at Princess Margaret Hospital in Toronto. She was surprised when they came back a recommended an allo transplant instead of a auto. Their thinking was that I am young (58), healthy and without co-morbidities, and have had more than 3 lines of prior treatment. We checked my siblings, but none were a match.

Since last fall (2010) we have been discussing the transplant. Yes, I could ride out my current "remission" and see how long I might get, but the best time to do a transplant is when you are the healthiest with the least possible disease burden. You can't get a better M-spike measurement than "unquantifiable". My onc feels that it is a matter of time before we will be forced into a transplant, and who knows what shape I may be in at that time - what co-morbidities may have developed, etc. We do know what my condition is now.

Because of the risks in an allo, and the fact that I already have my stem cells on ice, we have elected to go with the ASCT. My wife is extremely nervous about any kind of transplant. I start with the final doctor appointments next week to enusre my heart, lungs and dental are all ok to proceed.

Information about Waldenstrom's Macroglobulinemia