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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

My inpatient stem cell transplant journey, so far

by JimsKayak on Mon Aug 17, 2015 4:27 pm

I was diagnosed with multiple myeloma in August 2014. I underwent 7 cycles of Revlimid, Velcade, and dexamethasone (RVD), and one of carfilzomib (Kyprolis). My second bone marrow biopsy showed about 15% plasma cells. My local oncologist decided that I would go "straight" for a stem cell transplant (SCT). Like many others, I felt slightly "railroaded" into it, but after consideration, I decided that it was the best treatment available at this time. I expect some dissension :)

"Straight" to the procedure turned out to be a long process. I decided to have it done at A Famous University Hospital's Cancer Center, about 60 miles (100 km) from me, instead of the local hospital's "mother ship". 150 miles (240 km) away. Changing hospitals is a chore. I should have already mentioned that I had a "cardiac episode" in December, which resulted in the implantation of a stent. The oncologists were concerned about my fitness to withstand the transplant procedure, and this resulted in a barrage of appointments and tests. By the time I got a "Pass", and everything in order, it was July before I was on the schedule. The hospital's SCT specialist was slightly alarmed that I hadn't had any maintenance chemo since February. I hope it didn't matter. For some reason, I have a strong intuitive sense that I haven't relapsed much if at all.

My stem cell collection went well. I had shots of Neupogen for three days, but my cell count was still inadequate. Then I was given one shot of Mozobil, and my WBC count zoomed up to a whopping 87! They proceeded with the collection, and gave 7.7 million cells in 5 hours. I was to understand that it is less usual to get an adequate collection in one session.

It was an odd but painless procedure. The weirdest part was actually sitting in one position for five hours. I don't even do that in bed (light sleeper!). I felt "odd" in an indescribable way for about a day – "tingly" is as close as I can describe it. While I know that a collection and a transplant are two different things, the success of the collection gave me a burst of confidence.

It was decided that I would be an inpatient for the entire procedure. I spent 13 nights in the hospital.

On Days -2 and -1, melphalan. It seemed easy enough to take initially, and I managed not to have any cardiac issues. On Day 0, I received the little bag, resembling tomato soup, with my stem cells.

The side effects of melphalan started on about Day +2. While I was pumped with intravenous anti-nausea meds, I still had constant "butterflies", and lost interest in (most) foods. I had never realized the important role of taste buds! Mine weren't damaged much by the chemo, and they directed my eating habits. Everything that tasted good – mainly sweets and ice cream – stayed down, and everything that was tasteless came back up. I had to get over deep-seated conditioning to "clean my plate".

The fatigue started around Day +3. It was mainly a "body" thing. I'd plop down on the bed, and not want to move, even to pick up a book. (Gross Alert) The thing that got me off the bed was diarrhea. I spent a day in Depends. :oops:

On Day +5, my hair started falling out in earnest. I happy to report that only about 80% of the hair on my head fell out, and I kept most of my body hair.

My WBC and neutrophils climbed steadily, but my platelet count, which had sunk to an abysmal 7, was much slower. I ended up receiving 3 transfusions of platelets.

So, for the rest of my stay, my blood counts rose, and side effects gradually subsided.

I am mainly writing this to say that the SCT procedure does not always have to be that bad. I realize that I was blessed to go through it fairly easily. My sincerest sympathy to everyone who's had a tougher time with this. Of every side effect I've had, I've had it worse from something else. I've had worse fatigue from the flu, worse gastro problems from viruses, and I don't need all that hair, anyway :D

Faith, Hope, Courage! :)

JimsKayak

Re: My inpatient stem cell transplant journey, so far

by Rhonda on Tue Aug 18, 2015 6:34 am

Hi

It is very encouraging to hear your SCT was for the most part uneventful. I want to thank you for shar­ing your story. I will be having mine this week. Mine will be outpatient, I think I would be a little more at ease if it was inpatient, but I have a good caretaker.

I wish you much success in the days, months, and years ahead.

Take care,
Rhonda

Rhonda
Who do you know with myeloma?: myself
When were you/they diagnosed?: September 2014
Age at diagnosis: 54

Re: My inpatient stem cell transplant journey, so far

by gardengirl on Tue Aug 18, 2015 11:35 am

Thank you for sharing, JimsKayak. Rhonda, best wishes to you and please try to share as well. I see the specialist tomorrow and make my final decision about whether to proceed with SCT, and the more stories that are posted, the more comforting it is!!! (I will try to do the same.)

gardengirl
Name: gardengirl
Who do you know with myeloma?: Me
When were you/they diagnosed?: Nov. 2013
Age at diagnosis: 47


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