Autologous & Allogeneic Stem Cell Transplants

Experiences of Waldenstrom's Macroglobulinemia Patients

|   Home   |   Bill Cohagan - Early 2014    |   Jeff Atlin - Early 2012 & Late 2013    |   Jacques Millette - Fall, 2011   |   Frank Citrone, Jr - Summer, 2006    |

Patient: Bill Cohagan - from Texas; transplant at Mayo in Rochester, MN (Early 2014)

Age: 68

Doc/Facility: Dr. Francis Buadi (Mayo)/Mayo Clinic, Rochester, MN

Email: billcohagan@hotmail.com


AUTOLOGOUS TRANSPLANT EXPERIENCE

Thursday, 13 March, 2014

Mayo Tranplant Update

For those of you reading this on IWMF-Talk I am saddened by the report of the passing of Jeff Atlin - whose postings inspired me to report my transplant experiences to the wmstemcell blog. I encountered some difficulties shortly after transplant and have had a difficult time getting motivated to get back to posting reports of my progress - but this sad news of Jeff has jarred me into getting back to that blog. In short, I was discharged from Mayo and returned home to Austin last Friday. I'm feeling well, although I have zero energy and zero stamina thus far. I am going to try to pick up my blog as of last posting and to recount my subsequent experiences - hopefully in the next few days.

Saturday, 01 March, 2014

Quick Update #2

I'm doing OK, but still very low energy. May go home Friday.

Saturday, 22 February, 2014

Quick Update #1

Just discharged from ICU, doing ok. Will blog it soon.

Wednesday, 12 February, 2014

Too Many Pills?: Day 1

Paraphrasing the Emperor in Amadeus, I find that perhaps I've got too many pills now. At age 68 you might imagine I already have lots of pills, morning and evening -- and you'd be right. In preparation for my fast approaching nadir on my blood counts. Here are my prescription meds now:(http://sdrv.ms/1cxqBZ8)

These don't include a bunch of over-the-counter drugs I normally take. The new drugs are pretty much protection from bacterial, fungal, viral infections as well as nausea meds should I need them. Clearly I'll need a larger pill organizer.

On a related topic, while getting my chemo in the hospital I noticed an interesting card on the wall in the bathroom. This should convey the nature of the chemo drugs they were using. A bit scary: (http://sdrv.ms/1cxqvAy)

My energy level is down a bit today and I'm feeling a bit "off", but nothing I can put my finger on. Foods already are beginning to taste different -- and generally not in a good way.

I now have a standing 9:10am appointment at Transplant Station 94 where they take my vitals, interview me to see if I'm having problems, etc. Starting Saturday we'll meet with a nutritionist and we'll have to keep a log of all I eat and drink. They monitor this to make sure I'm getting enough protein and carbs -- which are necessary for recovery as the bone marrow gets repopulated.

Tuesday, 11 February, 2014

Lift Off (Creamed Corn?): Day 0

Today, Tuesday, was transplant day and it went very well as far as I can tell.

Day began with IV Fluids starting around 6:30 am, with the transplant starting at 11:30. Transplant finished around 12:30. They told me that my breath would start smelling like creamed corn, but that I wouldn't be able to smell it. They were right on both counts. Also they told me that the freezing process will have killed some red blood cells that will end up as red in my urine. That hasn't happened yet. They also confirmed my suspicions that my tennis line calls will be awesome following this procedure; i.e., no change at all.

I am now back on IV fluids for the next 4 hours, after which I'll be discharged and will return to GOL. Daily visits to Station 94 for labs will begin tomorrow and continue until I can come home. Probably another 3 weeks.

My original stem cell collection was over 3 days; thus they collected 3 bags each with varying cell counts. Apparently behind the scenes they took the total contents and created 7 smaller bags of roughly the same cell count. I *think* this is because they want to thaw them out one at a time, rather than thawing one big bag at the beginning. That would let the cell bags warm up too much. So, using the 7 bag approach, they're warming the next bag while I'm receiving the current one. Each bag took 5 -10 minutes.

Cells have been stored in a pair of special vaults at separate sites -- separated I assume to avoid a single point of failure. If one of the cryo tanks failed I'd still have enough to proceed using cells from the other location. The 7 bags were stored at -300F using liquid Nitrogen. The "warm up" involves transferring them to dry ice to bring them up to -40F. Finally they put them in something like a double boiler to get them up to room temp.

Here's the dry ice thaw stage: (http://sdrv.ms/NzlrpY)

And the "double boiler" stage: (http://sdrv.ms/NzlDWk)

And the final stage:()

I had to mask up every time they changed bags, but in between I just pulled it down as seen in the photo.

I think I'll probably be feeling bad by day 4 and that will persist until "engraftment"; i.e., when my newly generated bone marrow begins producing white cells, etc. That can take a week or two.

BTW I now have another birthday, Day 0: (http://sdrv.ms/NzpXEX)

Monday, 10 February, 2014

Chemo Done: Day -1

Have been somewhat chemo fogged since start of chemo on Day -6. As previously reported my first round was Carmustine and I got a slight headache later in the day. Days -5 thru -2 were long chemo days. In the mornings I got Etoposide followed by Cytarabine with a repeat run in the evening. So about 3+ hours of chemo twice per day. After the second day I suffered a bit of nausea and so they put me on some antiemetic drugs. Overall I think I had 3 or 4 times when I felt nauseous, but the meds helped and they passed quickly.

Today, my final round I got ~1 hour infusion of Melphalan. No immediate side effects from that. Tomorrow I get the transplant during a full day starting with 4 hours of fluid IV, ~1 hour infusing my stored stem cells, then another 4 hours of fluid IV. The transplant infusion will happen around 10:00am.

I am type 2 diabetic and so required a little extra care after taking the Dexamethasone on days -6 and today, day -1. In the past I could control my glucose lever adequately with a pill, but not after the Dex. So, I have been getting periodic insulin shots. This is temporary and the nurses say I can go back to my pill once I come back to GOL tomorrow.

During his rounds this morning I got to meet Dr. Ansell, a name I've heard on the IWMF-Talk list fairly often. He gave me the thumbs up for tomorrows transplant.

Lynn visits me daily and we've walked quite a bit around the hospital and down to the tunnels. The staff really encourage this sort of activity. A couple of times we've just caught the shuttle back to GOL where I could spend my time between treatments -- but always back to hospital by 7:00. She is also doing some watercolor paintings. This is the GOL library room: (http://sdrv.ms/1bOYGa8)

I'm hoping to have a few comfortable days before the chemo catches up and the white counts are down near zero. I think this is predicted for ~ Day +8. That's when I'll need a buzz cut as well.

Speaking of buzz cut, I also suffered a little acne right about the time chemo started, but it's cleared up now. I'm guessing it was due to Neupogen shots maybe? Had I timed it better (to happen with my buzz cut) I might have been able to enroll in the local high school, 1950's version.

Wednesday, 05 February, 2014

First Chemo - and Changed Day Numbering: Day -6

Until today the only reference point in time was the date I started this adventure, 1/19/14 at which point we couldn't predict the actual date of transplant. With today's chemo I'm now in countdown mode and the reference point is "Day 0" on Tuesday 2/11. So my numbering scheme from now on will be relative day 0.

We arrived at Methodist Hospital at 8:00am via the morning shuttle from GOL and admission took only about 5 minutes as they already had all my insurance info, Mayo ID#, etc. My assigned room is only a few steps away from an adjacent station where I reported daily for eval after my Neupogen shots last week -- so no trouble finding where to report.

I got settled in to my room and various nurses, nurse assistants, and my physician's assistant came by to introduce themselves and (of course) to check my name and birthday. The transplant department is arranged radially. There is a large circular nurses station at the hub and the rooms are the pie shaped "spokes" of the layout. So, the nurses, etc. can get to any of the rooms quickly (and in fact do arrive quickly if you push the bedside button.)

Here's my room: (http://sdrv.ms/1kWTy6k)

And the central nurses station: (http://sdrv.ms/1kWTGD2)

Today's chemo started around 10:00 am and consisted of a 2 hour infusion of Carmustine, a mustard gas related drug! (see http://en.wikipedia.org/wiki/Carmustine), preceded by a dose of Dexamethasone (see http://en.wikipedia.org/wiki/Dexamethasone) The Dex is a steroid that will apparently play havoc with my blood sugars (I'm type 2 diabetic) so they have me carb counting and are administering insulin by injection as necessary. I'll be able to go back on my regular oral med after chemo.

I was warned at the beginning that I might get a headache, but only got a very slight headache beginning just before I was done. Later they said it was because Carmustine is alcohol based. I said that, for the headache, I'd prefer to have had Jack Daniels.

After chemo I had lunch in my room (a good omelet.) Lynn and I then went for a walk in the tunnels -- about 1.5 miles. My chest was still sore (but better) but otherwise the walk felt good.

So, all in all, the day went well as I tolerated the first chemo drug. No more Carmustine however; beginning Thursday (Day -5) I'll have infusions of Etoposide and Cytarabine and that continues through Day -2. I now have to wear a mask whenever I leave the room.

Wednesday, 05 February, 2014

Surgery: Day 15

Tuesday began early with a 6:00am check-in at the Methodist Hospital (attached to Mayo Clinic) for my Hickman "installation" (my word) or "placement" (their word.) I got a LOT of practice spelling my full name, reciting my birthday, etc. I understand the need for this perfectly, but it is still tempting to report them to the Department of Redundancy Department.

The nurse also had us sit through a video about caring for the Hickman, although since I'm in-patient Lynn probably won't have to deal with it. Basically you have to visually inspect it daily and flush it with a heparin syringe. The dressing gets changed weekly -- and of course I must keep it and the surrounding skin very clean. I am able to shower without problems - but haven't tried it yet.

They also reviewed hand washing discipline. My approaching immune system dive (see http://en.wikipedia.org/wiki/Neutropenia) is good motivation. Strangely, this is an intended consequence since the chemo's job is to wipe out the blood making marrow (to be replaced via the transplant next week.) Hopefully it'll take only about a week following transplant to "engraft" forming new marrow and restarting my immune system.

Around 8:15 they rolled me into the operating room and shortly thereafter starting the "twilight" drip to put me under. I have some vague recollection of attempting to carry on a conversation with the operating team through my O2 mask. No idea what the topic was and I'm hoping they don't report ME to some Department!

Was able to leave the hospital around 10:30am and we then went down to the cafeteria. I was hoping for a breakfast, but they were serving lunch -- so I went to the coffee shop and had some (good) espresso and a scone. One silver lining of the transplant is they want you to have calories (and of course protein.) I think there might have been some protein hidden away somewhere in that scone -- but to be safe I had an omelet on returning to GOL shortly thereafter.

Didn't do much the rest of the day as I was pretty sore. The new catheter area wasn't too bad, but the spot where they removed my old port was pretty sore. Nothing that required pain meds, but it kept me moving slowly and carefully so as not to stretch any muscle/tissue on my chest -- so no turning my head just using my neck.

Tomorrow I'll be admitted to the hospital and have my first of six days of chemo.

Tuesday, 04 February, 2014

One More Hoop: Day 14

Monday was, medically speaking, pretty tame. I had to report for blood work anytime between 8:00am and noon. Lab results for this constitute the last hoop to jump through before the process proceeds. These results were reviewed during all this afternoon's meetings -- and I'm still good to go.

Starting at 2:00pm we began a series of meetings at the transplant center. First we met with the Transplant Coordinator who again reviewed all of the steps going forward and gave us another opportunity for questions. Following this we met with the PA who would monitor me when admitted to the hospital tomorrow. More review, more opportunities for questions. (She's also a "dog person" so the conversation was eventually redirected to things dog.)

Then we met with the surgeon who would be installing my Hickman catheter Tuesday. She went over the whole procedure and again solicited questions from us. To recapitulate, she will install the device in my chest, it'll remain there for a while, then it'll come out. I observed that this is pretty much what the creature in Alien whispered in its victims' ear.

Finally we met with Dr. Buadi, who provided some more detail as to what was about to happen (and what has already happened.) When pressed he did confess that it was one of his nurses who vetoed his plan that would have saved my existing port. Although I wish it had worked out I'm reassured that my doc will listen to his nurses!

One thing we discussed which was quite reassuring for me was my long(ish) term prognosis. Of course, for now, there is no cure form Waldenstroms, but treatments are effective and can keep it at bay for a long time. I already knew that, but my problem is the secondary Amyloidosis which is much more threatening. While slow moving, it's generally pretty serious when it becomes symptomatic -- due to amyloid deposits in various organs building up over time. This is what landed me in the ER twice last year resulting in two colon surgeries.

So, what I've learned is that as long as my IgM blood protein stays in a safe range ("controlled" by treating WM) the Amyloidosis will also be kept at bay. So, going forward, my situation will differ from other "Wallies" in that I'll probably be treated based on the numbers rather than on the symptoms. Not so bad, all things considered -- particularly given the recent advances in treatment. All in all, good news.

Another nice Mayo touch: all of these meetings took ~ 3 hours, but Lynn and I remained in the same room the entire time -- they came to us. Wow, try *that* at your neighborhood clinic!

Finally, the highlight of our day. Feeling good and wanting to move around a bit before being admitted to the hospital, we decided to walk back to GOL via the Mayo tunnels. As we entered I caught sight of an older man who looked familiar. As we caught up I overhead him talking to a colleague and immediately recognized his voice. It was Dr. Robert Kyle, the doc who has presented at so many of the Waldenstroms Ed Forums (and elsewhere as I understand it.) (see http://www.mayo.edu/research/discoverys-edge/robert-kyle-md-multiple-myeloma -pioneer).

I've never attended, but have watched many of the videos. Eventually, we caught up and spoke with him briefly -- thanking him for all his work and educational efforts. He was very friendly and open (as you'd expect if you've seen his presentations.) He was carrying a briefcase the size of a Volkswagen!

Tuesday morning I report at 6:00am for the catheter surgery.

Tuesday, 04 February, 2014

An Aside: Day 14

Later I'll report on today's activities. Now, I'd just like to point out that I'm distributing this diary (or blog, or .) to a couple of different audiences. First, it's going out to family and friends, but it's also going out to the community of Waldenstroms patients on IWMF-talk and to http://www.pitt.edu/~pld7/wmstemcell/.

I mention this because I include some stuff that, for friends and family, might be "oversharing"; i.e., too much about the medical stuff. OTOH, for you other patients out there I might confuse you by throwing in a name as though you would know who I'm talking about.

So, sorry about that.

Mon, 03 February, 2014

GOL: Day 13

Sunday is my last "day off" so I thought I'd report on the Gift of Life Transplant House. You can read all about it at http://www.gift-of-life.org. Our experience here has been uniformly good. Every patient is here with a caregiver (a requirement.) You can't "book" a room in the normal sense; rather you request a room and when the time comes you'll get a room if one is available. Obviously they can't predict when folks will leave -- so couldn't really be any other way.

There are actually two buildings -- across the street from one another. We're in the "new" building (2009). Before they actually accept you, you must be interviewed and agree to their terms, mostly regarding following the rules relevant to living among a bunch of immunosuppressed people. Lynn describes it as a combination of summer camp, outward bound, and a monastery. There are about 80 of us here.

Rooms are nice, about the size of a small hotel room. There's a closet, chest of drawers, and a small "hutch" with shelves to use as a desk; one regular chair and a pretty nice recliner chair. Fairly large bathroom (wheelchair friendly) with a shower, but no tub. Construction is very high quality and very solid. One outstanding feature for me is the excellent quality wireless throughout the building, unlike most free wireless service you find in hotels and coffee shops. We have no problems streaming a Netflix movie for instance. (No TV's allowed in rooms, but computers are OK.) Next to each room's door you'll find a small plaque. Here's ours: (http://sdrv.ms/1dWEP58)

There are a couple of large kitchens with a common utility area in between. You and your caregiver are responsible for the cooking and cleanup. Dishes have to be hand washed and put through a sterilizer. You can eat only in the adjacent dining room -- not in the kitchen or anywhere else. After eating you must wipe down the table and chairs used with a disinfectant spray. You buy your own groceries although some items (salt, pepper, paper towels, etc.) are supplied by GOL.

Here's a short video clip of the dining room on our second night -- when the Mennonites came to serenade: http://sdrv.ms/MOAhbN. (See http://en.wikipedia.org/wiki/Mennonite for more. Very nice folks.)

Most of the social interactions occur in the dining room, at least for us. There's a lot of information sharing, experience sharing, etc. which is very helpful. For example, it's very comforting when about to undergo a transplant to chat with someone back on their 1 year checkup from the same procedure.

When you enter the building you must first go to the coat room, remove coat and shoes and put on slippers (or "inside shoes"). I generally wear a cardigan and bedroom slippers while in the building and therefore refer to the coat room as the "Mister Rogers" room.

I spend a fair amount of time on the "sun porch" on the south side of the second floor. There's a dining table that works well as a computer table and I can look out the windows at the snow covered neighborhood behind the GOL house: (http://sdrv.ms/MUkDvC)

Lynn is doing some watercolors as she was worried about using oils where many folks are oversensitive to various smells due to the chemo and/or transplant process: (http://sdrv.ms/1aXR4UP)

Sat, 01 February, 2014

Days Off: Day 12

Have enjoyed a couple of days off, lounging around and loading up a new laptop as a distraction. Yesterday the weather was decent (~ 18F with sun) and I walked from GOL to Mayo for lunch and coffee. The cafeteria is not great, but certainly better than average institutional food -- and there's a decent coffee shop in one corner with good espresso and scones and plugs for charging the computer. [To clarify the previous ill formed sentence, the scones aren't for charging the computer.]

The ~4 block walk between here and Mayo is mostly underground: (http://sdrv.ms/MLDvg9) We do have to go a couple of blocks on the surface to the nearby employee Healthy Living Center, yet another beautiful structure funded by a grateful patient in 2007. There we enter the tunnel. Lynn has taken advantage of the pause -- and some "decent" weather as well. Yesterday she went to an (indoor) tennis doubles drill and had a good workout. She says the players were very strong. [I guess if you get to the court on snowshoes it builds your stamina.] Today she went to Quarry Park for a guided birding walk -- and saw a bald eagle and one of their nests.

Tonight I was loading my music collection onto the new laptop and as I was moving files around one caught my eye, Austin's Anton Nel playing Schumann's Widmung (composed as a wedding present to his wife Clara in 1840). Ours is a recording of a concert we attended at the Long Center in 2009. If you're interested, sit back and listen to it: http://sdrv.ms/1dVvjzk. If you aren't familiar with Anton, see http://www.antonnel.com/Official_Site_of_Pianist_Anton_Nel/Welcome.html and if he's ever playing anywhere near you -- go hear him!

Tomorrow we're having a SuperBowl party here at GOL and have invested heavily in the football pool. There are still a number of squares open and we're seriously considering putting in a second dollar before kickoff. We've talked about perhaps going out to dinner while we can, but just haven't got around to it. Perhaps Monday night (which will be our last chance for several weeks.) Monday will be busy with classes (and one blood draw) and Tuesday I'll have surgery to install the Hickman catheter. Wednesday we're off to the races and chemo begins. No going out to dinner beyond then -- until my white count nadirs and my "new" bone marrow gets my blood counts back up to the minimums.

Wed, 29 January, 2014

Schedule is Set: Day 10

This morning I got the call from the transplant scheduler office. I get the weekend off, then the process begins on Monday with some blood draws followed be educational meetings with transplant staff and a meeting with the surgeon who will implant my Hickman catheter on Tuesday. That's it Monday & Tuesday. Wed I'll begin chemo which will complete on Monday 2/10. I'll be admitted to the hospital during this time, but as described before will be able to leave the hospital in the afternoons when I'm not strung up to an IV or two.

Tuesday 2/11 will then be "Day 0" for the transplant. It'll be a long day, starting around 5:30am. I'll get 4 hours of IV fluids, then a 1 hour infusion of the stem cells I collected this week. Finally, another 4 hours of IV fluids and then I can go "home" -- to the Transplant House.

My impression is that the week following transplant will be the worst in terms of side effects. I'm hopeful I'll be as lucky with this chemo as previous chemo's, but won't be scheduling any ski jumping for that week.

Speaking of ski jumping, it's snowing hard today in Rochester. It was -21 Tuesday, then warmed up yesterday to +21. It's in the 20's again today, but snow started falling early this morning and is still going.

Tue, 28 January, 2014

Made the Numbers! Day 9

Sunday was the last of my 2 a day Neupogen injections. Sunday morning they tested my blood for CD34 factor (see http://en.wikipedia.org/wiki/CD34). The level of this molecule reflects the number of stem cells circulating in your blood; thus a measure of the success (or not) of the Neupogen growth factor injections. In my case the Sunday measure was 17 -- the threshold was 10 so I was good to go to collection. [I may be misremembering the exact numbers - it's been a long half week!]

Monday started collection with me arriving at the Apheresis department at 7:00 to be hooked up for a 5 hour process of extracting blood (out of my left arm) , separating out the stem cells (via a centrifuge in the machine) and replacing the remainder of the blood back via my right arm.

Here's what the machine looks like:

http://sdrv.ms/1ff9eOG

It looks a lot like my desk when I'm charging all my devices

My goal for collection (set by my doc at the outset) was 5 million cells. Monday's session yielded only 1.15 million. If you get less than 1.5 the first day they give you an additional shot, Plerixafor (see http://en.wikipedia.org/wiki/Plerixafor). This is the $8000/injection shot. Fortunately my doc was able to get it approved for me. (Thank you to all who are paying in to Medicare!) While the Neupogen stimulates creation of stem cells, Plerixafor works to keep the cells from migrating back to the marrow, thus keeping them in circulation for collection.

Tuesday's collection (another 5 hours hooked up) yielded 2.7 million so apparently the shot works. Wednesday's session brought my total up to 5.01 million so I'm done with collection. Now we wait to hear from the transplant coordinator to see when I'll begin chemo.

I had hoped to avoid losing the chemo port (installed a year ago) and initially had the doc's agreement to do the collection via my arms and the chemo via my existing port. Normally they install a Palindrome catheter which has large enough tubes to handle the negative pressure for extracting blood.

Unfortunately he reconsidered and so I'll have a Hickman catheter (see http://en.wikipedia.org/wiki/Hickman_line) installed the day before chemo. I'll keep this in until I'm ready to come home. The Hickman differs from my existing port in that it is a two "lumen" port. This just means they can give me two meds at a time which otherwise they'd have to give sequentially, doubling the time needed. It's a bit smaller than the Palindrome, but since I've finished cell collection the larger size is not needed.

Fri, 24 January, 2014

Preparation: Day 5, -4F Temp at 7am

[For some of you reading this, the photos will have been filtered out. If you'd like to see them just click on the links of the form http://sdrv.ms/]

Friday was another uneventful day; 8:00am Neupogen injection and another at 2:30pm. In between was another education class reviewing the whole transplant process from cell collection to chemo (and its possible side effects), then transplant and recovery. Given some of the possible side effects I'm calling the first half "stem to stern."

This is at the check-in desk at Transplant Station 9-4 (referred to simply as "94" by everyone): http://sdrv.ms/1eo2BYA

One of the really nice things about Mayo is the generous scattering of grand pianos in the various atriums and lobbies. More often than not there is someone playing and/or singer(s) singing. These are Mayo staff, patients, whoever has the talent and the time to stop for a few moments. It's pretty amazing how good some of them are. The effect it has on one's feelings is also pretty amazing as you stop for a moment between appointments: http://sdrv.ms/1mYoSUr

Thu, 23 January, 2014

Preparation: Day 4, -15F Temp Outside at 7am

Thursday was uneventful, relatively speaking. As I reported Wednesday I'm go for the next phase which consists of neupogen (growth factor) shots, 2 a day for 4 days. Normally these are given just once a day, but due to my Amyloidosis he wants to split the dose with a 6 hour separation. This avoids fluid retention sometimes experienced by Amyloid patients. I had the first two shots today without any apparent side effects or problems.

While in the treatment room waiting for my first shot I observed what appeared to be the world's shortest treadmill -- or perhaps the treadmill for the very old people:

Unfortunately I was so relieved to be through with tests and starting down the road to treatment that I completely forgot a 1:45 appointment today with the psychiatrist. Got a call on my cell at about 2:15 from the desk. Wow did I feel guilty -- Mayo is SO good at being on time that you seldom have to wait for more than a few minutes past your appointment time before being seen. Anyway, they got me in at 3:00 with no problem and she apparently felt I'm not too crazy to proceed.

OK, the picture above is of course a scale, not a treadmill, but

Wed, 22 January, 2014

Testing & Education: Day 3

Wednesday started with a kidney function test which consisted of drinking, waiting, peeing, rinse, repeat. Throw in a couple of blood draws and one injection in the thigh (contrast dye.) This took a couple of hours beginning at 6:45am. The remainder of the day was meetings to educate us on the process ahead.

We first met with the transplant coordinator, a nurse who went over all of my test results, asked some additional questions about my medical history, and outlined what to expect over the next few days. She also talked about the upcoming chemo -- but our later meeting with my hematologist/oncologist changed course a little on the chemo. She also warned that one of the drugs I *might* need during stem cell collection had been initially declined by insurance -- and it costs $8000 per shot!

After lunch we met with Dr. Buadi (hema/onco) and he confirmed that my test results were good for going forward. He set a goal for collection of 5 million cells - with a minimum of 3 million. He also said we would not attempt to collect enough to bank for a possible later transplant since the probability of needing one is so low. There is some risk associated with collection and he doesn't feel it's worth the risk given the statistics. Speaking of statistics, Mayo did 498 SCTs last year!

He will recode the justification for the $8000 shot and try for insurance approval again. He is optimistic it won't be a problem.

Dr. Buadi also explained that, because of my underlying Waldenstroms, I'll be taking a chemo regimen called BEAMS rather than the "normal" drug for Amyloidosis, called Melphalan. This in turn means I'll have to be admitted to the hospital for 5 nights. This is because the drugs are given over several hours several times during the day and evening. When I have several hours during the day free I can have a "pass" to leave the hospital and do whatever. So while it's a disappointment to learn of my stay in the hospital, it's not so bad since I can escape for a while each day.

The side effects of the new chemo are comparable to the original assumed Melphalan chemo. In either case they said the anti-nausea meds are pretty effective these days. Mouth sores are a possibility for a few days and hair loss is a certainty. (Perhaps I can leverage the hair loss and enter some swim meets while on day pass?)

The nurse had earlier explained that the side effects typically don't occur until the week following chemo as there are some surviving cells for the first week. The second week then will be the worst and things should start improving significantly the third week. Unless I misunderstood her, she said I could possible go home at the end of the third week. That would be a Nice Surprise.

Tue, 21 January, 2014

Testing & Education: Day 2

Tuesday was another busy day of testing, starting with a 7:30am Holter Monitor installation. This is a small (iPod sized) device that hangs around your neck on a strap. It is several leads which are stuck to your chest and it monitors your heart for 24 hours. You keep a diary of your activities so they can correlate the heart data with what you were doing at the time.

At 8:00am I had a Pulmonary Test where they test your lung capacity and general breathing abilities -- at rest and after mild exercise (stairsteps.) At 10:00am I met with a nurse from the transplant center who checked out the veins in my arms to determine if they can be used for the stem cell collection. She thinks yes, but if not then they'll have to install a "central line" in my chest, rather like my existing chemo port, but higher capacity. Downside is they'll remove my port.

At 11:20 I had a short visit with the dentist including a wraparound X-Ray. They have to make sure you don't have anything going on with your teeth since any hidden infection could go critical after the transplant when my immune system is down.

At 12:30 was an echocardiogram which took nearly 2 hours -- and last at 2:45 Lynn & I met with the social worker. She gave us a lot of information and asked us a bunch of questions to make sure we knew what was coming and had reasonable expectations.

Lynn had discovered yet another tunnel that starts just a couple of blocks away from GOL that leads to Mayo -- so we walked back to GOL after the last appointment. Wednesday's first appointment is at 6:45am!

Mon, 20 January, 2014

Testing & Education: Day 1 (or day -n)

Monday was day 1 counting from first day of testing, day -n relative to day of transplant (which they call "day 0".) So, if all goes according to plan n=14. Stem cell collection will begin Monday, 1/27, and is scheduled daily for the whole week. It begins every morning and runs 5 hours. Possibly they'll get enough cells in a few days, in which case the schedule will move up accordingly.

So Monday was indeed a full day. Picked up test kit at 8:00am, blood draw at 8:20am, 9:30am bone marrow biopsy, 10:30am chest X-Ray, 11:00am electrocardiogram, then a quick lunch in the cafeteria. Started up again with a 1:15pm full body X-Rays and finished up with a 3:00pm CT scan.

After lunch my wife, Lynn, went to Gift of Life (GOL) Transplant House to interview (and they let us in!) So, after my last test we moved our stuff from the hotel to GOL (which has been the plan all along.) GOL is a very nice facility and very reasonably priced.

So far, so good.

Mon, 20 January, 2014

Introduction & The Transplant Process Begins

I am currently at Mayo Rochester for an SCT, having arrived here on Monday. I've been keeping a daily diary of my experiences which I've been emailing to family and friends and thought I'd start posting here as well. Perhaps it will make the process less mysterious to those of you contemplating this procedure. So, I'll shortly post the logs for the first 3 days. Also, Peter DeNardis has kindly agreed to post these also on the transplant blog site (whose URL escapes me at the moment.) I'm sure he'll chime in with that info.

So, if anyone has any questions I'll be glad to answer as best I can (and as soon as I can - given a pretty hectic schedule.)

BTW, my transplant will follow a slightly different path than those of you with "plain vanilla" WM as I also have Amyloidosis - which is the reason I'm getting the transplant. My doc advises that were it "simply" WM he would not have recommended transplant at this point.



Information about Waldenstrom's Macroglobulinemia