100 Days Post-Transplant
Achievement Unlocked!
It’s been a while since I’ve written anything for Plucky Day! I think my last post was at the 50 day mark of being in the hospital for my transplant. I had a home leave for that weekend which Heather wrote about. I was finally discharged after nearly ten weeks in the hospital, on day 58 post-transplant.
I’ve been at home now for six weeks, returning to Queen Mary Hospital twice a week for long, all-day visits to the Transplant Out-Patient Clinic. These have generally been every Monday and Thursday and they include blood tests, IV medications, and visits with the doctor. These twice weekly trips to the hospital have been difficult, as Heather wrote about here. They are marginally improving as we figure out the new rhythm and schedule.
I am eating a lot better, but having no weight gain, nor muscle mass gain. I’m doing exercises every day, and eating a lot of protein rich foods, but little to show for it. Because I’ve lost so much weight, I am cold in every room and even outside in Hong Kong’s hot, humid weather. Heather and I are constantly battling for the air-con remotes as she is perpetually hot, while I am always freezing. I wear a jacket all the time.
To give you a picture of the extreme weight loss I’ve had, during the four rounds of chemotherapy, after my first diagnosis on Christmas Eve last year, I lost about 20 pounds (9kg) over the course of about 6 months (putting me at an “ideal” weight, I was happy with staying at). But during the transplant, I lost an additional 40 pounds (18kg) in 1 month! This was when I had the extreme mucositis and couldn’t eat anything. I was put on IV nutrients during this time and even with consuming almost nothing by mouth had severe gastrointestinal issues. The biggest concern we have now is eating, gaining weight, gaining strength and muscle. It has been very slow going.
Due to my immunocompromised state, I still must avoid all public spaces and wear a mask whenever I leave the house. When I go outside, I need to wear long sleeves, long pants, a hat, and sunglasses, all in an effort to avoid cataracts and skin issues caused by the sun. I must avoid public transit and take a taxi everywhere I go, which has only been back and forth to the hospital.
Three days ago, on day 97 post-transplant, I had my sixth bone marrow biopsy. This is a very painful and unpleasant experience, which gives me anxiety for several days leading up to it, peaking as they prepare for the extraction. But this is a necessary test for the labs, as it tells us how much of the disease is still in my body at the molecular level. My last test results, taken while I was still in the hospital, showed the cancer cells were “undetectable”! (Heather mentioned in this post as well, if you didn’t catch it). This is a milestone and a big cause for celebration, but the bone marrow biopsy must be repeated quarterly for the next two years, which means I have six more to go. Yay.
The other thing they are checking during this most recent bone marrow extraction is a chimerism analysis, which will determine how much of the bone marrow is made up of the donor stem cells (Benjamin’s) vs how much are the host cells (mine). The result we want is 100% donor, 0% host. My cells have the Philadelphia Chromosome mutation, which only know how to make cancer cells at an uncontrollable level. If the result is mixed, or host dominant, then the doctors will have to do more treatments. We will learn more about that when the day comes, but our hope and prayer is that it never does. May Ben’s cells prevail!
Being 100 days post-transplant brings a few new evaluations from my medical team. One of them is to see if my medications need to be adjusted. Since I’ve not had any new signs of Graft vs Host Disease (GVHD), they will begin to slowly taper down the dosage of the many immunosuppressive drugs I take. This will hopefully allow my brand new cells to begin building up a brand new immune system which will be able to help fight off infections. It’s done slowly so my new immune system won’t immediately start fighting the transplanted cells and flare up the GVHD. It’s a delicate balance.
Here’s the latest news from my appointment yesterday:
- I no longer need the four hour IV treatment which was making our Mondays and Thursdays six to eight hour ordeals at the hospital.
- I now only need to go to the hospital one day a week, on Thursdays.
- I can alternate each week between the much closer Princess Margaret Hospital, where I’ll only have a blood draw, and Queen Mary Hospital, where I’ll have a blood draw and then an appointment with my transplant doctor.
- In addition to slowly lowering the immunosuppressive medications, they are adding back in the TKI inhibitor drug I was taking before the transplant. This is the one that suppresses the Philadelphia Chromosome mutation. I’ll be taking a lower dose and will only take it two days a week to start. This and the medication I take for the Graft vs. Host Disease are not covered by the government subsidy, so we now have two drugs to pay for out of pocket every two weeks. We are so grateful for the contributions we receive through Plucky Day, Buy Me A Coffee, or directly, as they go right toward paying for these medications which keep this disease at bay.
- My blood levels and organ functions are doing ok, which is why the change to one day a week at the hospital and the shift in dosage for my medications.
On a not so good note, yesterday at the hospital my back was hurting quite bad. It only got worse after getting home. Then there was a pain in my sternum area, which we determined was gastrointestinal in nature. After eating dinner, taking my medicine, and going to bed, I violently vomited everything back up, which strained my weak abdominal muscles. I was awake most of the night running back to the toilet. Today I’ve had more pain in my abdomen and caution while trying to figure out what to eat. There’s also a new rash showing up on my feet, legs, and head, which might be nothing, or it could be more GVHD. When I had just a few spots on my feet, the doctor said it wasn’t a concern. But how do we know when it does become a concern? It’s something we are learning.
Because there’s yet another typhoon coming to Hong Kong this weekend which could make getting to the hospital a challenge, we have to make a decision soon about whether I should head over to A&E (E.R.) to get checked out. This will likely mean being admitted for observation due to my status as a transplant patient. It’s always hard to know what to do, but having spent more of 2025 in the hospital than out of the hospital, I’m not anxious to go back in if I don’t have to.
To conclude this 100 Day Post-Transplant post: you can see we have had some good news and some concerning news. This journey is not linear and is prone to setbacks. But your constant words of encouragement, reaching out with physical mail, private messages, Facebook and Instagram posts, comments on the posts directly on this website, and even anonymous drops of Cinnabon on our doorstep have meant the world to both Heather and myself. You are all amazing and it really helps us get through the long difficult journey. We love you all and continue to be lifted up by your messages. Thank you.
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