Autologous Stem Cell Transplants

Experiences of Waldenstrom's Macroglobulinemia Patients

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Patient: Frank Citrone, Jr (Summer, 2006)

Age: 51

Doc/Facility: Massachusetts General Hospital


(Postscript): Fri, 14 Oct, 2011

(Day +1953 - 5 years!) It is now five years and four plus months post transplant (I was 51 at the time of transplant).

In summary my reason for undergoing an ASCT was not Waldenstrom’s in itself.

My IGM when I began treatment to clean up my bone marrow for a harvest was 2900. I suffered from anemia, fatigue and frequent sinus infections. Waldenstrom’s was problematic for me only in that it was the cause of my amyloidosis.

So, based on my reasons for having an ASCT, the procedure has been a success. Today, my bone marrow is now producing less overall proteins and certainly less of the ‘bad’ proteins. It is the opinion of all my doctors (3 oncologists/hematologists and 1 nephrologist) that my amyloidosis is dormant, clearing the way for my most pressing need – a kidney transplant.

My latest number are:

White blood cells:3.5 (norm is 4.5 - 11)
Hematocrit:34.3 (norm is 41 – 53)
Platelets:99K (norm is 140K - 450K)
Red Blood Cells3.76 (norm is 4.1 - 5.6)
Hemoglobin12 (norm is 12.5 -17.0)
IGM246 (norm is 40 - 230)
IGG822 (norm is 70 - 1600)
IGA53 (norm is 70 - 400)

I do continue to have problems with my immune system, whereby from time to time, my WBC and platelets plummet. This may be a separate issue, unrelated to my WM.

My next adventure will be a kidney transplant, scheduled for November 15th of this year. My wife, Carol, is the donor.

As an aside, my staph infection (MSRA) which I contracted during my transplant (PIC line insertion) has gone away on its own!

Thu, 20 Jul, 2006

(Day +41) I had my weekly checkup yesterday. My blood counts continue to improve:

White blood cells:6.8 to 9.1 (norm is 4.5 - 11)
Hematocrit:29.8 to 33.6 (norm is 41 – 53)
Platelets:88K to 126K (norm is 140K - 450K)

For the most part, my immune system is close to being back to normal, although I was given a pneumonia vaccination which is something I may be prone to in the future.

My oncologist gave me the OK to return to work, but advised me to take it easy and watch out for fatigue.

My weight continues to hover in the 170 – 175 range with slight puffiness around the ankles.

My blood pressure is beginning to show some improvement (130 over 90).

Fri, 07 Jul, 2006

(Day +28) Lost 2 more pounds yesterday – that’s 16 since I’ve been home. I’m still at 181 and have some lingering puffiness in my ankles and lower shins.

My temp has been normal for the last 2 days. I called my nephrologist today to express concern over my blood pressure. He called in a prescription for Norvasc. Just what I needed , another pill to take!

Thu, 06 Jul, 2006

(Day +27) I had my weekly checkup today. My blood counts look great:

White blood cells:4.5 to 6.8 (norm is 4.5 - 11)
Hematocrit:26 to 29.8 (norm is 41 – 53)
Platelets:72K to 88 (norm is 140K - 450K)

The arenesp shot obviously had a positive effect on my hematocrit. My oncologist was so pleased that my next appointment is in 2 weeks.

On the way home Carol and I walked (albeit slowly) around Jamaica Pond. Once I arrived home, I took a long nap.

Wed, 05 Jul, 2006

(Day +26) Although it’s been like watching grass grow, I’m beginning to feel stronger each day. I no longer get winded easily.

Tue, 04 Jul, 2006

(Day +25) Over the past several days, my blood pressure has worrisome (150 – 160 over 100 –110). Losing all this fluid has not helped.

Mon, 03 Jul, 2006

(Day +24) Lost 1 more pound yesterday. That makes 6 in the last 3 days – 11 since I’ve been home.

Sun, 02 Jul, 2006

(Day +23) I increased my lasix medication on Friday and the extra fluid I have been carrying is finally starting to come off. When I first came home from MGH I was carrying 15 extra pounds. I’ve lost 5 pounds over the last 2 days. This fluid loss has allowed me to sleep better which is huge.

Sat, 01 Jul, 2006

(Day +22) My hair has stopped falling out; I’m pretty much bald now. I was able to keep some of my eyebrows. Hopefully my hair will start growing back soon.

Fri, 30 Jun, 2006

(Day +21) My temp continues to stay a tad above normal. For most of the day it is normal, but hits the low 90’s once a day.

Thu, 29 Jun, 2006

(Day +20) Today was my last vancomycin infusion – thank God!

I had a doctor’s appointment at 10:30. Blood was drawn for 24 hour cultures to ensure that my vencomycin infusions were successful in eliminating my staph infection.

My latest blood test showed my counts at:

White blood cells:10.7 to 4.5 (norm is 4.5 - 11)
Hematocrit:27.7 to 26 (norm is 41 – 53)
Platelets:52K to 72 (norm is 140K - 450K)

I was given a shot of aranesp to help prod my ‘pokey’ red blood cells along. My PICC line was removed which was a quite a relief.

Wed, 28 Jun, 2006

(Day +19) Day 30 (Sunday, July 9) and Day 100 (Sunday, September 17) are red letter days in my treatment.

On day 30, many of the restrictions I’m currently under will be lifted.

On or about Day 100, I will be tested to see if this procedure worked. My blood and bone marrow (yeah, a bone marrow biopsy!) will be done

Tue, 27 Jun, 2006

(Day +18) Thanks to everyone who has called, sent cards and posted entries in my guest log. It is your thoughts and prayers that keep my attitude positive and inspire me to ‘keep on punchin’

Mon, 26 Jun, 2006

(Day +17) Sorry, I have not been very faithful at keeping my log up to date. I feel like sleeping most of the time, although I feel great when I force myself to get out and go for a walk.

Sun, 25 Jun, 2006

(Day +16)

Friday: I had a doctor’s appointment today at 10:30. My counts are still going in the right direction:

White blood cells:17.2 to 10.7 (norm is 4.5 - 11)
Hematocrit:24.2 to 27.7 (norm is 41 – 53)
Platelets:27K to 52K (norm is 140K - 450K)

I was given another prescription for lasix to help eliminate the extra fluid I am carrying.

I received an IVIG infusion to bolster my immune system. We finally left to go home at 7:30.

Saturday: Today was an uneventful day. My hair is now coming out in huge clumps. I am seeing visitors but for short periods of time before I feel the need to sleep.

Sunday: After today’s vancomycin infusion, I’m halfway there – 4 more to go. I can then have my line taken out. I went for another walk today, almost a mile. At this point in time, I am still battling a low grade fever. I am carrying an extra 10 pounds of fluid. My headaches are gone which is a huge relief.

Thu, 22 Jun, 2006

(Day +13) It’s great to be sleeping in my own bed.

I’m eating much better at home.

A nurse came to get me started on my home infusions. I will be giving myself vancomycin infusions at home for the next 8 days. No more nurses taking my vitals throughout the night!

I went for a 1 mile walk.

Wed, 21 Jun, 2006

(Day +12) Today I’m going home!!!

I showered early and received my vancomycin infusion.

My counts continue to climb, with the exception of hematocrit, which is holding steady.

White blood cells:5.6 to 17.2 (norm is 4.5 - 11)
Hematocrit:26.2 to 24.2 (norm is 41 – 53)
Platelets:20K to 27K (norm is 140K - 450K)

I was given a bag of red blood to bolster my hematocrit.

Carol came at around noon and we left for home at 2.

My mother cooked me macaroni and meatballs for dinner. I ate better than I had in a couple of weeks.

Tue, 20 Jun, 2006

(Day +11) Today is my 15th day here.

It is now safe to say (without jinxing myself) that I have avoided oral mucositis, the dreaded mouth sores.

Last night I experienced night sweats. I was told that this might occur until my temp normalizes.

I just received some great news. I’m going home tomorrow! I’ve been taking one day at a time and trying not to get my hopes up. I am now at the point in my recovery where it will do me more harm than good to stay here.

This morning’s blood counts were:

White blood cells:1.2 to 5.6 (norm is 4.5 - 11)
Hematocrit:24.7 to 26.2 (norm is 41 – 53)
Platelets:25K to 20K (norm is 140K - 450K)

I had a new PICC line put into my left arm. An XRAY was taken to ensure that it was inserted properly.

A critical care nurse gave Carol and I a lesson on how to infuse antibiotics. I will have to take vancomycin infusions until June 29.

I went for another walk today and went outside for a few minutes.

The nurse practitioner came in to give me my discharge instructions.

Carol, Angela and Phil visited today.

Mon, 19 Jun, 2006

(Day +10) I was warned that this would happen; today my hair began falling out. No big deal.

This morning’s blood counts were:

White blood cells:<.2 to 1.2 (norm is 4.5 - 11)
Hematocrit:24.6 to 24.7 (norm is 41 – 53)
Platelets:27K to 25K (norm is 140K - 450K)

My counts are definitely on the upswing.

On Mondays, all patients in the transplant unit receive chest XRAYS and I got mine at 10:30.

Today I was allowed to leave my room. Freedom at last! I was required to wear gloves, a mask and gown. Rob and I walked down to the lounge and hung out for a bit before returning to the room.

My temp continues to remain ‘close to normal’. The highest reading was 99.9.

Cultures continue to be negative.

Carol, Rob and Russ visited today.

Sun, 18 Jun, 2006

(Day +9) Happy Father’s Day, Dad. Not a day goes by that I don’t think of you.

This mornings blood counts were:

White blood cells:<0.1 to .2 (norm is 4.5 - 11)
Hematocrit:27.7 to 24.6 (norm is 41 – 53)
Platelets:19K to 27K (norm is 140K - 450K)

I hope that my white counts have now bottomed out and that this is the beginning of an upward trend. My temp continued to normalize today (98.6 to 99.8).

My doctors were concerned that the swelling in my right arm may have been caused by a blood clot. An ultrasound was done and proved to be negative.

I am now waiting for my blood counts to improve in order to go home. Once home, I must continue to receive Vancomycin through a new PICC line to finish treating my staph infection. So far, blood cultures taken since Friday have come back negative.

Carol, Alex, Mandy and Nick visited today.

Sat, 17 Jun, 2006

(Day +8) Happy Father’s Day, Dad. Not a day goes by that I don’t think of you.

I received another bag of platelets today. My blood was tested an hour after this transfusion and showed my platelets at 27K.

This mornings blood counts were:

White blood cells:<0.1(norm is 4.5 - 11)
Hematocrit:23.7 to 27.7 (norm is 41 – 53)
Platelets:20K to 19K(norm is 140K - 450K)

My temp was a little lower today (99.8 – 100.3)

Although the swelling in my right arm has gone down some, only my left arm is now used for lines.

I’m starting to get my appetite back and ate 3 meals.

According to my oncologists, my body continues to tolerate side effects better than most patients.

Carol, my Mom, Angela, Mike and Laura visited today.

Fri, 16 Jun, 2006

(Day +7) Today was a very eventful day. Results came back from the blood cultures showing the presence of a staph infection. Some swelling was observed in my right arm and my PICC line was removed as a precaution. In it’s place IV lines were inserted into each arm.

This mornings blood counts were:

White blood cells:<0.1(norm is 4.5 - 11)
Hematocrit:25.3 to 23.7 (norm is 41 – 53)
Platelets:28K to 20K(norm is 140K - 450K)

Because of these low counts I received one Platelet and 2 red blood cell infusions. I was given an echocardiogram to determine whether or not the staph infection had affected my heart. Results were negative. Today the nausea is better and I am able to eat a little. Temp still hangin’ in there (100.3 – 101.8).

Carol, Alex, John and Loren visited today.

Thu, 15 Jun, 2006

(Day +6) Posting from Frank's wife: I will try to fill in for Frank today, as this not been his best day. Upset stomach, nausea, vomiting, diarrhea and lack of appetite have all set in. He has a fever today between 100.6 to 101.7. Blood and urine cultures and a chest xray were done. IV antibiotics, vancomycin and maxipime were begun.

Frank’s reiki healer Susie came and performed reiki with him. She is wonderful,thank you, Susie.

Frank’s was started on IV fluids to stay ahead of dehydration.. Of course he continues to look at the bright side and states he will get through this.

Frank’s blood continues to spiral:

White blood cells:.1 to <.1 (norm is 4.5 - 11)
Hematocrit:25.3 to 25.3 (norm is 41 – 53)
Platelets:45Kto 28K (norm is 140K - 450K)

Alex and Brittany came in to visit in the PM.

Wed, 14 Jun, 2006

(Day +5) Been here for 8 days now. You know what time does when you’re having fun!

My blood continues to spiral:

White blood cells:2.5 to .1 (norm is 4.5 - 11)
Hematocrit:26.1 to 25.3 (norm is 41 – 53)
Platelets:69K to 45K (norm is 140K - 450K)

I was told that I could ride the stationary bike at the lowest resistance level and did 25 minutes. My energy level is still pretty good, but I must take extra care to wash my hands frequently. I am now without an immune system and anyone with as much as a sniffle should not come in to see me. I was told to switch over to a ‘swab’ like toothbrush to eliminate any possibility of bleeding.

High doses of melphalan can cause oral mucositis which is characterized by swelling, ulcerations, and, in some severe cases, bleeding of the mouth and throat. This inflammation, which is painful, can limit food intake and sometimes make talking difficult.

To help prevent this, MGH’s protocol is:

  1. Take clotrimazole lozenges 4 times daily
  2. Use sterile water to brush my teeth with
  3. Gargle with sodium chloride 4 times daily
  4. Gargle with chlorhexidine gluconate twice daily.

So far (knock on wood) oral mucositis has not been an issue.

Rob, Tom, Carol, Jane, Ed and Anne came in to visit today.

Tue, 13 Jun, 2006

(Day +4) My counts continued to fall over the last 24 hours:

White blood cells:10.8 to 2.5
Hematocrit:26.8 to 26.1
Platelets:104K to 69K

No attack of the monster sternum last night – thank you Mylanta and percocet. I’m back on zofran again which seems to help my feeling nauseas and hungry at the same time.

Another uneventful day. Did my obligatory 25 minutes on the stationary bike. I will not be allowed to use the stationary bike if my platelets drop below 50K.

I was asked if I would allow a doctor to come in with a group of residents and students to examine me. I agreed to this – I think I was their featured case of the week. Anything I can do to help the cause.

Trudi and Carol kept me company today.

Mon, 12 Jun, 2006

(Day +3) My counts have finally started dropping:

White blood cells:20.8 to 10.8
Hematocrit:28.1 to 26.8
Platelets:141K to 104K

I know that the roof could fall in at any moment, but I have had so few side effects that today I asked one of my doctors if they really gave me chemo!

My stomach has begun acting up a bit, but I’ll save you the gory details. Pretty uneventful day. Did about 25 minutes on the stationary bike.

The care that I have received here has been outstanding. I have purposely decided not to mention names for fear of leaving someone out. My nurses, doctors, chaplains, physical therapist, resident, etc. have all proven to be competent, dedicated health care professionals.

In an attempt to get ahead of potential sternum pain tonight, the game plan is to take Mylanta and percocet around 8 PM.

Carol, Russ, Mike and Jimmy kept me company today.

Sun, 11 Jun, 2006

(Day +2) Another great night and finally some sunshine. Last night I dreamt that I escaped from my room, had a great dinner in downtown Boston and snuck back before bedtime.

Although I haven’t lost my appetite, chemotherapy has destroyed my tastes buds and food just doesn’t taste the same. My blood counts are still stable.

My mother, cousin Tom, brother-in-law Rich, mother-in-law and Mandy kept me company today. Visitors usually stay until they become bored out of their minds. Carol and I watched “Two For The Money”.

Right before bedtime, I experienced severe pain in my sternum which I’ve had before as a side effect of neupogen. It went away after about 20 minutes.

Sat, 10 Jun, 2006

(Day +1) I slept great last night.

The chemo I was given on my first 2 days has destroyed all my bone marrow. It didn’t affect my existing blood; that will begin dropping over the next few days. New blood will not be produced in my body until my stem cells engraft and create new bone marrow.

Same schedule as always, although I added 30 minutes on the bike.

I had my first bout of nausea which quickly passed. I am now taking zofran every 8 hours to stay ahead of this.

I was given my first daily infusion of neupogen which should 1.) stimulate white blood cell production, thereby helping to ward off infection and 2.) help my stem cells engraft faster.

Below my window I had a great view of the dedication ceremony for the three new "Teddy Ebersol's Red Sox Fields." Teddy, who would have turned 16 today, was the son of NBC Sports Chairman, Dick Ebersol and actress Susan St. James.

I was visited by Carol, Alex, Nick, and my friends Bruce, Mike and Laura.

It was another good day!

Fri, 9 Jun, 2006

(Day 0) The percocet did the trick last night. I did have to get up several times during the night as my kidneys began kicking in by removing some of the fluid that has been pumped into me over the last couple of days. Fortunately I was able to fall back to sleep each time.

Pretty much the same morning routine; vitals at 5, breakfast at 8 and doctors at 9. My nephrologist came to visit re: my potassium level. He wasn’t as concerned as the oncologists but suggested I do a better job at sticking to my low potassium diet. The Kayexalate did drop my potassium level to 5.2.

After showering, I was given pre-meds for my transplant (tylenol, benedryl and a steroid, hydrocortisone.)

My stem cells were delivered in 3 frozen bags at 11. Each bag was thawed out in warm water in time to be mounted.

I was told that I would need 2 million stem cells for a transplant. I harvested 4.82 million. Half or 2.41 million cells were in the 3 bags. Basically the 4.82 was split in half, so I received a little more than the 2 million.

The transplant itself was somewhat anti-climatic. I was told that I might feel a slight tickle in my throat and chest, which I did. Typically any reaction during an autologous transplant results from the chemical used to preserve the stem cells.

Typically during the transplant, the preservative can make the patient 'smell funny'. Some say it smells like garlic, others corn. Carol thought I took on a fishy smell.

After the transplant, my blood pressure, heart rate and temp were monitored for another half hour. Carol and I then watched the first episode of 24, season 2 (we’re catching up). Next, it was time for a nap (the benedryl).

After Carol left, my dear friends Paul & Trudi, my sister Angela, her husband Phillip and my niece April stopped by. I watched the end of the Sox game (another V) and called it a night.

Thu, 8 Jun, 2006

(Day -1) Today is called a day of rest – no chemo today. I slept a little better last night, but not much. I tried Ambien which didn’t seem to help much. I think I’ll try something different tonight. I was awoken at 5:45 for blood work and vitals. I fell back to sleep and was awoken for breakfast at 7:45. Next the doctors came by for their rounds.

Although most side effects from the chemo typically appear around day 4 (4 days after transplant), it is encouraging that I’ve experienced none so far. I’m constipated and I’ve gained some weight from all the fluid they’ve been pumping into me. My white blood cells skyrocketed last night from 3,000 to 11,000, (normal range 4,800 to 10,800) but this increase could have been caused by the decadron, which has happened to me before.

My potassium level has risen to 5.9. The normal range for potassium is 3.5 - 5. Although my level is typically high, I was given some Kayexalate to help reduce this.

I rode the stationary bike which is in my room for about 40 minutes today. In the evening Carol, Mandy, Mandy’s friend (and our second daughter) Andrea, my mother and my God Daughter Danielle all came in to visit at different times. I finished off the evening by watching Mr. Schilling beat the Yanks.

I’m taking a percocet to help me sleep tonight.

Wed, 7 Jun, 2006

(Day -2) The saline solution finished at 1:30 AM. I had trouble sleeping during my first night – no surprise. I probably slept for an hour before I was awoken at 5 for blood work. I got in another couple of hours before my doctors came in for their morning rounds. I took my first shower here, which was fairly regimented – 4 different face cloths and towels for different segments of my body, Betasept (antiseptic surgical scrub) to clean with.

I next had a PICC (peripherally inserted central catheter) line inserted for future infusions and blood work. An IV nurse inserted it into a large vein in my arm and guided it in until it was just above my heart. An XRAY was then taken to ensure that it had been properly inserted.

At around 6 PM this line was used for my second day of chemo - 329 ml of melphalan. Once melphalan is prepared in the pharmacy, infusion must be started within one hour before it ‘becomes unstable’. Makes me wonder exactly what is dripping into me! The saline solution should be totally infused by 10. Carol and Nick spent the early evening hours with me; Jimmy D. took the late shift.

Tues, 6 Jun, 2006

(Day -3) The hospital called last evening to request that we call before heading in. When we called around 8 AM, we were told to call back as a bed would not be ready until sometime in the afternoon. When we called back, we were told that a bed would be ready between 2:30 and 3. We arrived at the hospital and as soon as I settled into room 1428A (around 3 PM) a line was inserted in my arm to draw blood.

Since I arrived later than anticipated, chemo would also be administered later. At 9:30, I received saline solution to hydrate along with 20 ml of Decadron, a steroid which would make it easier to tolerate any side effects from the chemo. At 10 PM my nurse began the melphalan (chemo) drip. When it ended at 11 PM, the rest of the saline was started again. Estimated completion time is 1:30 AM. I had plenty of company today. Carol and the kids and Angela and Philip were here to visit. Pre-chemo visitors must were rubber gloves – after my first infusion, gloves and a mask. Today is day – 3 in hospital lingo. Day 0 is transplant day (Friday 6/9).

Mon, 5 Jun, 2006

A stem cell transplant (SCT) is a major undertaking and should not be taken lightly. When I began evaluating whether an SCT was right for me, I took many things into consideration. Waldenstrom's Macroglobulinemia (WM) is problematic for me in that it is the root cause of my real problem, amyloidosis. Amyloidosis has already affected my kidneys and has the tendency to attack other internal organs (heart, lungs, etc.,). My goal is to control amyloidosis by putting WM into remission.

So in my mind I basically had 3 options:

  1. Do Nothing: This would, in effect, be analogous to rolling the dice and hoping that amyloidosis would stay dormant and not further attack any of my internal organs.
  2. More Chemo: I’ve undergone 3 different types of chemo over the last 2 years in an attempt to put WM into remission. My last treatment with Campath nearly put me into remission. More chemo (Campath?) may have been an option, but one cannot do chemo forever. The long term effects of chemo are not totally known.
  3. Stem Cell Transplant: I’m relatively young and in good health. My internal organs are operating well enough (yes, even my kidneys) to withstand the rigors of an SCT. The goal obviously is to go into total remission for a number of years. Should WM return (and I’m told that it will), hopefully by then there will be newer and more effective treatments with fewer side effects.

For me, options 1 and 2 were too risky. Only option 3 made sense.

Information about Waldenstrom's Macroglobulinemia