I had a recurrence of acute myeloid leukemia in 2020 and accepted the medical advice to undergo a bone marrow transplant. On June 5, 2020, I received the transplant using a bone marrow donation from a wonderful young lady from Israel.
I consider that day a second kind of birthday. In addition to a new blood life source, I grew new skin, hair and nails. Those were things I could see; it may very well be that internal organs were regenerated. But I’m no doctor, so let’s just stick with the newness of my exterior non-vitals. Wait, skin is vital. So I repeat, I am not a doctor.
I am going on four years since my transplant!
Everyone is different. I wanted to share my own after-effects — four years down the road.
Right after a bone marrow transplant, patients confront the likelihood of graft-versus-host-disease (GVHD), in the blessed event that the body does not reject the donation. GVHD occurs when the donor stem cells (“the graft”) attack healthy cells in the patient (“the host”), causing GVHD. Some of the side effects linger throughout life.
The chance of getting GVHD is 35% to 45% when the donor and recipient are related. Around 60% to 80% of patients experience GVHD when the donor and recipient are not related. I fell into that second category. I found it interesting that men who received analogous donations from women (not related to them) are at the highest risk.
Right after the transplant — up to six months later, patients may experience acute GVHD including rashes, abdominal pain, nausea, vomiting and diarrhea. Check, check and check. I fortunately did not suffer jaundice, although this is another common acute GVHD symptom. Perhaps I had jaundice and people were too polite to tell me I was yellow. I wasn’t looking in the mirror often those days.
Then around three months after transplant, chronic GVHD can set in. I had some of the symptoms earlier than three months including vision changes, white patches inside of the mouth, sensitivity to food, fatigue, muscle weakness and chronic pain. Around the three-month mark, I experienced joint pain and stiffness, continued weight loss, shortness of breath, brittle and prematurely graying hair, loss of body hair and pericarditis (inflammation in the membrane surrounding the heart causing chest pains). Some of it was scary.
So where do I stand now?
I am doing remarkably well! Yet, I have some lingering and possibly lifelong side effects from the transplant.
After shaving my brown hair during the severe hair loss period, my locks never fully grew back. I’ve applied men’s pomade to mold my orangutan fly-away tresses so that they would at least cover my skull, but it didn’t work. Also, the patchy new hair grew back gray. Get this: I dyed my fine gray hair about a year or two after the transplant, and the dye color remains to this day — two years later! Isn’t that peculiar? Anyway, I wear a wig — four years after transplant.
I started with aggressive massaging of my stiff neck and skull during the chronic GVHD phase. I remember being very confused about this new problem until my oncologist explained that onset arthritis is very common. My osteoarthritis symptoms are constant. Since then, I’ve gone in for annual scans showing that my case is worsening, yet I am not yet rheumatoid. Still, 24 hours a day, my neck and upper back bones hurt. I contort my head constantly, hearing the joint “pops.” I can only turn my neck a little bit to the left. There is a part of my skull that feels like it cracked.
I lost underarm hair and most of my body hair at the time of the transplant. My underarm hair never came back. All other body hair is sparse and fine. Not complaining about this one.
My vision has gotten worse. After the transplant at age 56, I’ve had to adjust my lens prescription twice. I am going to get my eyes checked again next week.
I realize that vision changes, gray hair and arthritis are also just part of the aging process. Yet, the issues synced up with the GVHD timeline. I suppose these symptoms are a combination of both.
The good news? Besides no underarm hair, my mood is fantastic. My energy levels are better than they were pre-transplant. And I am cancer fre-e!
I may enjoy a chocolate cake on June 5.
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