What’s so special about Allogeneic SCT for Myelofibrosis?
When I learned that I needed a SCT, several people said that a transplant for myelofibrosis (MF) is different than transplants for other leukemias. It was difficult to get clear explanations. But after going through the journey and talking with other MF transplant survivors, we have some observations:
Each journey is different, but there are at least five experiences common among transplants for MF:
1. The timetable for engraftment, chimerism of white cells, and conversion of red cells is much longer than for patients with other leukemias.
Before the transplant, I was given a notebook full of information that included a “Typical 100 day Timeline.” It triggered disappointment and doubt when my progress was VERY far behind. The myelofibrosis causes a lot of damage in the bones and it took several months longer for my donor’s stem cells to make themselves at home and get to work. I also had ABO incompatibility issue which prevented my donor’s A+ reds to overcome my antibodies (I was B- type).
2. Hear the phrase, “This is not entirely unexpected.” several times. Something will occur during the transplant process and throw the healing process off course temporarily. No one with MF sails through unscathed, but we do get through it.
I had liver GvHD that put me in the hospital and also gave me a month on super-steroids that made me psychotic (really!). I also had a mean gall bladder that caused problems and had to be removed. Between the transplant and portal hypertension from the PV-caused thrombosis, they called in a transplant surgeon who has experience with organs wrapped in varices.
3. Depression will occur no matter how smart and strong you are; it’s part of the process. Denial is up to you, but I don’t recommend it. Your entire system is knocked off kilter with the chemo, medications, and continual changes in your body chemistry. All this MUST affect your brain as well.
To those people who are uncomfortable thinking about mental health, I ask: why would you readily accept help for other side effects of the transplant process and it’s assorted medications and choose to suffer unnecessarily with the one organ (the brain) that can help you improve your outcome?
For many of us, this is the first thing in our lives that we aren’t able to push through by sheer will-power. Problems arise with no clear-cut solutions; everything has a trade-off. We have to trust the medical team to decide for us. We also have to be compliant patients and do what they say. Recognizing that we control very little is overwhelmingly frustrating.
4. At least one dance with the steroid devil. The doctors say “a little GvHD is good” because it means the donor cells are establishing their presence. But when it gets too disruptive, the treatment is a course of heavy-duty steroids. You will be able to spot other patients on steroids pretty quickly — the round “moon face,” bloated weight gain, fidgety, insomnia, and cranky/mean personality.
Me and steroids are barely on speaking terms. I take them only when my doctor assures me that there is NO OTHER TREATMENT. Steroids trigger mania in my brain. EVERYONE annoys me, my mind races uncontrollably, I can’t fall asleep, the “wired tired” cycle kicks in (physically exhausted yet cannot fall into restful sleep), I swear, I stomp around, and I cry. I can see it all happening and I am powerless to stop it. Suicide is a side effect of long-term steroid use and I completely understand how it can happen.
During one particularly difficult episode with steroids, I was given Ambien to help me sleep. It helped for awhile, until I started sleepwalking and waking up in the kitchen. Switched to Seroquel, an ‘atypical anti-psychotic drug’ that blocks dopamine and serotonin receptors in the brain. It made a huge difference in making the steroid treatment bearable.
5. You will experience frustration and helplessness like you’ve never felt before. If you like to make plans and get things done, you are in for a most difficult journey. Hopefully you will work through this and experience an awakening that shatters the illusions you so comfortably cling to now. If this doesn’t resonate, you’re not there yet. Don’t worry, you’ll get there!