I’m fortunate that I was able to recover from this summer’s stem cell transplant much more quickly than my first back in 2011. Part of it was experience; knowing what to expect.
But other factors could help a first timer recover more quickly, too. As promised, here’s a list of tips that could help your stem cell transplant experience go better:
Stay ahead of nausea
Most BMT units use Zofran and Compazine as their base anti-nausea medications. While recovering from my first stem cell transplant four years ago, I was an inpatient. Most of the anti-nausea drugs were administered via IV. When Zofran and Compazine didn’t work, the anti-anxiety drug, Ativan (lorazepam), did the trick. Trouble is, Ativan IV literally knocked me out. I would complain about ongoing nausea, and a nurse would come into my room and deliver an IV push. It worked–and put me to sleep. Everything was reactionary.
In Iowa City this summer, nausea management was all oral. I took Zofran tabs regularly early on and it seemed to help. But good friend and fellow myeloma survivor and blogger, Nick Van Dyk, suggested I try several other oral options. I mentioned them to my pharmacist and nurses in a meeting before getting hit with the first of two IVs of high dose melphalan.
What worked best wasn’t part of the Team’s regular program. And one of the drugs that Nick mentioned simply wasn’t available. But everyone cooperated and I’m convinced it made a big difference in the end.
The first drug we added was granisetron. It seemed to help. The second, olanzapine, was amazing. Small tabs designed to dissolve under your tongue. Olanzapine (Zyprexa), like lorazepam, is an antipsychotic, used to help treat bipolar disorder and anxiety. Because it isn’t primarily used for anti-nausea, it took 10 days for my Team in Iowa to get it approved. But when they did it was a real game changer.
The amazing thing about olanzapine: it worked after I was already nauseas. By using Zofran–and later granisetron–in anticipation of nausea, and olanzapine or lorazepam when I actually experienced nausea, I was able to micro manage my own care.
My advice to anyone preparing for a stem cell transplant is to discuss ways to help minimize nausea with your transplant team upfront. If they insist Zofran and Compazine is enough, push back. Chronic nausea can be debilitating. By minimizing nausea this summer, I was able to eat more, sooner. I slept better. And it was easier to get up and keep moving.
The more you move following your transplant, the faster you’ll recover. I should add before your transplant, too. Working out in preparation of months of relative inactivity can really help. Its all about preserving muscle; not an easy thing to do when you’re laying around all day.
Since I spent part of my time as an outpatient in Iowa, I was able to walk more than if I were trapped on the BMT floor. At Moffitt in 2011, inpatients weren’t allowed to leave the floor. Let’s face it, you can force yourself to walk laps, but its easier to go farther if you aren’t confined to walking up and down a short hallway. In the evenings and on weekends, we were allowed to leave the unit and walk the halls of the hospital, something I couldn’t do in 2011. And when I was an outpatient I could get out and walk outside.
But walking isn’t enough. Work with your physical therapist to incorporate stretching and upper body exercises into your routine. When untethered from my trusty IV pole, I walked with 2 lb dumbbells, doing shoulder presses, curls and raising the weights up at all angles. When stuck with my pole (I was on IV antibiotics several hours a day) I used the safety bar in the hallway for support and did lower body exercises, then used 5 lb dumbbells for upper body work. I tried my first pushups yesterday, 32 days out. Reps of 30 at different angles have shrunk to 10 or 15 slow and difficult pushups at a time. And I don’t recover quickly. But I’ll get it back–a lot faster thanks to the work I did before and during my hospital stay.
There were two exercycles available in the hall. I peddled for 15-20 minutes at a time each day. I still lost five or six lbs of muscle mass during the experience. But I’m convinced my recovery was aided by my efforts; I’m practically back to normal 32 days out, difficulty doing pushups aside.
Eat and drink
Hydration is important. Even if you don’t feel like it, drinking Boost or Ensure throughout the day is a good idea. It doesn’t matter what you eat, as long as you do. Whatever tastes good. Mac and cheese. Oatmeal. I gobbled up great yogurt parfaits the on order cafeteria made.
Ask if you can use Imodium
Fighting diarrhea can be debilitating. It’s hard to get up and get out if you’re afraid to venture away from the toilet. Stay on your transplant team to allow you to use Imodium.
Take advantage of little extras
Most all BMT units offer consults with a pharmacist, a physical therapist and a nutritionist. Use them! At Moffitt, we also had access to therapeutic massage. Both units had someone available to proactively cut your hair. I waited too long this summer; I started noticing clumps of hair falling out in the shower and when I scratched my head. It’s disconcerting losing your hair in clumps.
Men, consider using testosterone supplements
Most any guy going into a stem cell transplant is going to have low testosterone numbers. I understand there are cautions: TV ads offering class action suits against low T replacement manufacturers, mixed data about whether myeloma patients should up their testosterone levels. All I know is I think taking AndroGel helps me feel stronger and maintain a little muscle mass in the face of transplantation and ongoing dex. Which reminds me…
Ask about adding additional drugs to high dose melphalan
It’s never made sense to me. If you’re going to nuke your bone marrow, why just use one drug? What if (as in my case) you have a clone or clones that doesn’t respond well to high dose melphalan? Chances are it weakens even those. So why not do what we did the second transplant: add several other chemotherapy agents to the mix.
I know, I know, medical standard of care dictates high dose melphalan only. Why? Because its always been done that way. Is that a good reason not to try different things? Clinical studies are done one way and it continues the same way on and on.
How can it hurt to add FDA approved drugs like an IMiD you have yet to try (we used thalidomide) and/or Velcade or Kyprolis–with dex of course–for five days before and after high dose melphalan? As I shared before, I think the dex actually helped me feel better early on. UAMS in Arkansas does it. So does Huntsman in Utah, a program developed by my specialist, Dr. Guido Tricot, now at the University of Iowa.
Do your homework
There are a number of good publications that can help you prepare. I’m partial to my 300 page, Stem Cell Transplants from a Patient’s Perspective. In it I interview over 40 auto and allo transplant survivors. They share tips and make suggestions that helped them. Why reinvent the wheel?
That’s a start. I wish stem cell transplantation wasn’t still a necessary part of our therapy. But most all long-lived survivors I know have undergone more than one.
And what about allos? I just heard from a 30 year allo survivor. I’m convinced modified allos (a 10-15% ten year success rate is way too low) using T cell therapy may become a real and hopefully safer option for younger and/or high risk patients. May be too late for me; high tumor burdens–and for some reason patients that have gone through many different lines of therapies, even if tumor burdens are low–make it nearly impossible for the new, fledgling immune system to catch up.
I’m hoping my speedy recovery doesn’t hit any speed bumps. And most importantly, I hope it worked! I’ll know in a month. My best to all of the thousands of patients that will undergo auto SCTs this year.
Feel good and keep smiling! Pat