[Steve Horwitz]

Steve Horwitz's stem cell transplant experience

by Steve Horwitz on Sun Jun 24, 2018 4:40 pm

To recap, I was diagnosed last November at age 53. I had extremely high calcium levels and some minor back pain. I spent 6 days in the hospital, mostly getting my kidneys right. Thankfully, I came home with no kidney damage. Unfortunately, my diagnosis indicated I have the 17p deletion.

I began a induction regimen of cyclophosphamide (Cytoxan), Velcade, and dexa­meth­a­sone in early December. By early March, my kappa free light chain level was back in the normal range, and a bone marrow biopsy later that month showed no abnormal cells. All were extremely pleased with my response to induction therapy, and so we moved on to the autologous stem cell transplant. I collected in early May (I discussed the harvest in this forum post) and entered the hospital for inpatient treatment on May 29th.

Rather than give a day-by-day description, I’ll just summarize my experience both during treat­ment and in the almost two weeks I’ve been home.

I had read the various other transplant diaries / journals here in the forum and so I was prepared for a range of possi­bilities (see the individual patient transplant forum threads listed at the bottom of this forum post). My hope was that my experience with the induction therapy, in which I had almost no side effects, would be a good predictor of how well I’d tolerate the high-dose melphalan that's part of the transplant process. It turns out, thankfully, that that hope was realized.

The worst of the stem cell transplant for me was about 4 or 5 days (around days +6 to +10) with mild diarrhea and severe fatigue. There was no day on which I wasn’t able to at least get up and walk a few laps around the ward. Most days I was able to walk the equivalent of at least half a mile, if not a full mile, in circles around the ward.

I never really lost my appetite, though some foods worked better than others. Eggs and breakfast generally were winners. The diarrhea was really relatively mild and I ended up taking Imodium (loperamide) only a couple of times. I did have some mild nausea but never vomited, which kept my streak of 45 plus years of not vomiting intact! As others have said, take whatever anti-nausea meds they offer. I did take Compazine (pro­chlor­pera­zine) a number of times and it settled my stomach those times I was feeling a little green.

I also managed to avoid the mouth sores completely, for which I consider myself very fortunate. I think it was the cherry popsicles that I had with melphalan infusions that did the trick. Suck on the ice, use the popsicles. There’s a reason they do that. I also avoided any fevers, though one evening I did get up to 100.8 F (with 101 F, or 38.3 C, being officially a fever that needed treatment).

The only other two bumps in the road were the need for a potassium infusion on several days as well as a platelet infusion at one point.

The one thing I did not expect was just how severe the fatigue would be. I brought a whole stack of books to read, but by about Day +5 or so, I was just too tired to have the focus and con­cen­tra­tion to read anything serious. I watched some TV in the evenings and during the day mostly kept busy on my laptop. Facebook turned out to be just about the level of concentration I was capable of.

My response to the transplant was so good that they ended up releasing me on Day +11 (two weeks). My doctor said “you’re not setting any records, but you are unusual.” Since coming home, I’ve had no problems other than the continuing fatigue, which does seem to be improving slowly day by day.

As of this past Friday, my PICC line is out, my food restrictions have been lifted (other than raw fish), and I’m off all of the medications that were added in the hospital for the transplant. My white count is normal and my reds are just short of normal. I can drive and go out in public, though no large crowds, and I am generally taking it easy for another 2-3 weeks.

I will have one more appointment with the transplant clinic on this coming Friday, then it’s back to my oncologist in a couple of weeks to begin maintenance. I will be back to the transplant clinic monthly for some respiratory therapy to administer medications to prevent pneumonia as I am allergic to sulfa, which is the standard treatment.

I did lose my beard and mustache, and it’s very weird being clean-shaven after 25 years of having that beard. I keep my head shaved, so any hair loss up there was minimal and no one would notice anyway. Still have my eyebrows and eyelashes, though! I should add that I also had no pain issues during the hospital stay or since, other than a slightly sore back from that terrible hospital bed. Bring your own pillows, people.

At home, my recovery has been mostly about recognizing my limits. I like to think in terms of “one big thing per day.” Go grocery shopping. Go out to eat. Go to a doctor’s appointment. One big thing, plus whatever needs to get done in the house that I’m able to do. I am an economics professor and I haven’t had the energy and focus to do any real work yet, other than email corre­spon­dence and light editing of some documents. I’m hoping this week that I can get back to some serious reading and writing. Frankly, I’m just happy I can eat salads again!

The one thing that my transplant clinic “oversold” in the literature was the food issue. I was pre­pared to be on a low-microbial diet for a much longer period of time. Perhaps that’s more the case for allogeneic (donor) stem cell transplant, and they just didn’t make that difference clear in the literature. I’m not complaining, of course, but it’s something worth talking about up front with your transplant team if you have an autologous (own) stem cell transplant.

I think that’s about it. The experience was hardly fun, and at times it was quite unpleasant, especially the fatigue in the hospital. However, for whatever reasons, my experience was decidedly on the easy end of the spectrum. I was told early on that how well patients tolerate their initial treatment regimen is the best predictor of how they’ll tolerate the stem cell transplant, and that younger folks do much better. Both of those appear to be true. I don’t want to have to do this again anytime soon, but if I do need another one, and you could promise me it would be pretty close to this experience, I’d take that offer in a heartbeat.

Now the question is just how well it worked and what it has bought me. I refuse to speculate, but continue to rest my hopes on just how well I’ve done with everything else so far.

I hope this is helpful to those of you looking at an autologous stem cell transplant. If you are relatively young and if you responded well, with few side effects, to the therapy you’ve already had, it’s probably fair to say that you’ll do well in the transplant process.

[GoDucks]

Re: Steve Horwitz's stem cell transplant experience

by GoDucks on Mon Jun 25, 2018 5:00 pm

Good news and glad you're doing well. I had my transplant in November and had a similar experience from the sounds of it. Not terribly horrible, but I wouldn't want to do it again anytime soon. It took me awhile to get past the fatigue and lack of appetite, but honestly, I'm probably healthier now than I've been in quite some time. Best wishes for a continued smooth recovery.

[Mark Pouley]

Re: Steve Horwitz's stem cell transplant experience

by Mark Pouley on Thu Jun 28, 2018 2:53 pm

Great news, Steve. Sounds like we had much the same experience. I'm also "high risk" with del17p. I also think being "healthy" going in is a big factor and, like you did, trying to get up and walk everyday.

Congratulations and good luck on the results.

[Pippy]

Re: Steve Horwitz's stem cell transplant experience

by Pippy on Fri Jun 29, 2018 10:21 am

Congratulations, Steve, and thank you for sharing your experience. I'm glad it was a (mostly) positive experience.

I was 52 last year when I was diagnosed and had a stem cell transplant in October. My ex­peri­ence was similar but considerably rougher on the nausea (which lasted for 2 months) and the fevers in the hospital. But like you, it was a tolerable experience for the hoped-for result. I'm back to running regularly and feel amazing in general. I'm glad you are getting back to "normal" again too.

Good luck to you, and I hope you a lasting remission and good health in the future!

[Steve Horwitz]

Re: Steve Horwitz's stem cell transplant experience

by Steve Horwitz on Wed Aug 29, 2018 6:57 pm

Hi all.

Just a quick update on my progress, as even though I love sharing (mostly) good news with family and friends, this group understands at a different level. September 1 will be Day +63.

My latest blood work indicates that my kappa and lambda levels and my ratio are all within normal ranges and both the kappa and lambda are falling. And today I got a result that made me even happier:

"Normal pattern
No monoclonal proteins detected."

That's the first time since my diagnosis that I've seen those words on a lab report, so that is good news!

I feel great. The fatigue from the transplant is just about all gone. I'm not in any discomfort, and pretty much back to a normal life. I've hired a personal trainer who is kicking my butt and also helping to keep my core and back good and strong. I think those workouts have contributed to a better energy level. I'm still waiting for my beard to grow back and I wish I wouldn't get eaten alive by bugs every time I go out to our garden, but those seem small potatoes in the big picture.

My only negative right now is that it looks like I might be diabetic. Further blood work to confirm it is upcoming, but that's the likely outcome. There's some family history there and this will compli­cate treatment a bit, I imagine, especially if I have go back on steroids. Meanwhile, it's Velcade for maintenance, plus Zometa, and continued hope that we can hold off the return of our nemesis for a good long time.

I don't participate a whole lot here, but this space remains an extremely valuable resource for me. Thanks all.

[GoDucks]

Re: Steve Horwitz's stem cell transplant experience

by GoDucks on Thu Aug 30, 2018 2:15 pm

Good for you! I'm 9 months post transplant and my numbers are not as good, but heading in the right direction. My M-spike has been steady at 0.26 g/dL (2.6 g/l) and my kappa-lambda ratio free light chain levels are almost within range. I feel great and I'm ok if they just stay where they are, but hope to see the M-spike at an undetectable level soon.