My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Lori,

Yes, it is Ursodiol. I am taking it morning/mid/evening. This time i am taking all three pills. Not forgetting the middle one as i did when i was taking it before. My Dr did forget he took me off it.
Yes, the Acyclovir is still am/pm. I have not changed the dose on that.
I truly hope because in most ways i feel great, my next BMB and all its results will be positive. Ultimately, whatever the results, I know my DR. and the transplant team will be ready to assist with anything that may come up.
The fire is 25 minutes from me and both of those areas are places where people i know lived and places i enjoyed visiting. Eaton is near Monrovia where my brother lives. I have been in Alta Dena many times. All of it is so sad. There was nothing any of them could have done to save their homes. Nothing. It may be a sparked Electric line that started it.

Hi Kat! Reading through your reply just now, I’m wondering if the medication your doctor was referring to is Ursodiol. It’s used as a prophylactic drug against liver/gall bladder damage after a bone marrow transplant.
I just want to make sure I’m reading your message correctly about the Acyclovir. It looks like there was a misunderstanding about upping the dosage of that medication. Don’t increase Acyclovir to 3 pills daily without talking to your doctor/NP. I suspect he thought you were still taking Ursodiol and that he’d have you up the dosage on that medication for your liver. I hope you get some clarification before changing your dosages.
I was on Ursodiol for quite a long time, as well as a drug similar to Acyclovir. I took Valacyclovir instead because the Acyclovir affected my liver.

Some patients don’t have any discernible gvhd symptoms. Your bone marrow biopsy, peripheral smear and your chimeric tests will be important as verification of your transplant status. As long as there’s an underlying reaction taking place where your new donor cells are at work protecting you against a relapse of MDS that’s a good indication of a GVL (graft vs leukemia) reaction…which is the goal.
You’re doing so well, Miss Kat. No fretting at this point! I have faith that your biopsy will come out looking impressive. ☺️.
Stay safe from those terrible fires! It’s awful that one of your doctor’s patients lost their home because of that! I can’t even imagine…

It has been a while on this thread. I had my 1-month appointment follow-up
Friday the 10th. Blood pressure 110/71. My white cells went back up. Talking with my sister last month i told her i felt slightly like i had a cold so maybe that caused it. For the last month i have worn a mask most places and
I walked 5-6 miles every day. Drank my 80 plus ozs of water and kept my creatinine at .81. Yet, looks like my liver enzymes went up a bit. Oddly, the doctor asked me how many of this one pill i was taking and i said 2. he said take three. The odd thing is the pill he spoke about for the live/gallbladder i stopped months ago. It was not on my list anymore. I was talking about the pill Acyclovir- An antiviral drug-. It slows the growth and spread of the herpes virus in the body. Acyclovir will not cure herpes, but it can lessen the symptoms of the infection.
That one i take twice a day. AH ha!! This did not come to me until i left. I added it to the portal to let him know. Maybe this pill will help. I am going back this week for a blood test. I never took that pill right the months i took it. I seldom remembered the midday pill. This time I will.
The DR. was an hour late. I was bugged. When he came in, I had learned his regular nurse was out and he had a floater nurse. Plus, he had a patient before me that had just lost his home in one of the fires. I think he said it was his transplant patient 2.5 years down the road of recovery. Sometimes he is hard to hear.
He made notes in my chart. I said i am glad something was not right. He did say he would like me to have some GVHD. Well, it all just reminded me one more time that I am a transplant patient. I had my transplant April 9, 2024. To all of you. Sometimes it is hard for me to believe that i had breast cancer in 2021 and MDS in late 2023. I do not wish gvhd symptoms. I had asked the team from transplant research what if i do not have gvhd? I was told that some people do not.
Lori mentioned things just will happen. My next BMB is not for 3 months. That will let me know if i remain all donor.....
Take each day and add laughter and good times. Drink water (half your body weight in ozs) and exercise.

Wow. caregiverx2- I started reading your post and felt sad. Oh no. Then on you went with the increase of tacro and the steroid and bing...bing... the rash cleared. I hope you will feel reassured with Lori's post.
I love Loris's post. Oh, my goodness. Just what all of us need to hear. I was taking all the usual drugs and one by one the doctor took me off them. Vaccines began after my 6 mos. 2 -4 every time i have an appointment. My next ones on Jan 10th. The drugs i am on are acyclovir. Bactrim on Sat/Sun. Letrozole from the breast cancer.
For me, the research test had me off taco at 80 days. What i like reading in Lori's posts are the way she describes what is going on in our bodies. I am day 257. I am a bone marrow transplant patient having had MDS.
Mayo Clinic gives us mentors and other patients who describe what may happen or could happen in a safe, nurturing way.

It’s not unusual for weight to fluctuate for many months after a bone marrow transplant. Meds can impact the absorption and metabolism of foods. Grazing throughout the day is good and sometimes necessary. I had a difficult time too and initially my BMT, as well as the dietician, suggested eating anything I could get down that had calories. The foods didn’t always need to be healthy…if weight is too low, opt for calories saying… “We’ll worry about your cholestrol later!”
My go-to was Lactaid Salted Caramel Ice cream. My husband made me smoothies or I’d have little cones. It had protein, fat, carbs…it was all there and palatable. LOL.

You and your husband are doing all the right things. Recovery from a BMT can’t be rushed and I know how frustrating it is to feel like you’re taking two steps back after marching 5 steps forward.

It occurred to me that your husband and @dwolden’s husband, Dave went through their transplants at roughly the same time. He was at Mayo Rochester while you’re down in Florida, if I remember correctly. I bet it might be helpful to trade war stories! David has had his ups and downs with weight as well and of course you, as the caregiver, shoulder the brunt of most of the worry…as does David’s wife, Dorothy.

Hang in there! This gets better with a new, 2nd chance at life ahead. It’s worth the challenges of the early months.
I hope you and your family have a lovely holiday season!
Are you now home?

He is doing okay. His stamina and strength are slowing improving but he is having a hard time maintaining or gaining weight. The steroids also send his blood sugar sky high so he exercises/walks to try to get it down. It is a bad news/good news situation, but it still takes a toll on him.

Hi @caregiverx2, I know this feels a step back in your husband’s recovery, but it’s not! He’s still very early in the transplant journey and gvhd is not unexpected. Even if we have a very close match with our donors, there can still be instances of gvhd. In fact, it’s important to have some level of recognition from our newly implanted cells that they are in control.
In the early months post transplant, the new cells are still getting used to the body where they’ve taken up lodging. They are basically on high alert in this new neighborhood. It can take many months, sometimes years for the cells to recognize and adapt to the many proteins it finds roaming about. It takes time for them to realize they are not all threats that need to be attacked. Until that happens there can be little flare-ups of gvhd, such as the skin rash.

Those little flares get tamped down with a quick snuff of steroids. Or, in the case of your husband, the tacro level is also ramped up to a safe, sustaining level again. This suppresses the over-eager cells until they can temper their assertiveness. 😅 A time out! If it’s any consolation, I was actually on Tacro for 2.5 years. I had a perfect match but “the force was strong with this one” and needed extra time for my new immune system and my body to learn to play well together!
No two of us are alike so we all have our own personal journey along the BMT trail. But we share similarities so it’s good that you brought this out in the forum to talk about.

How’s your husband been feeling otherwise? Is he gaining weight, strength, stamina?

My husband is now at day +123. At day 100 they took him off the voriconazole and planned to taper the tacrolimus. But he broke out in a rash and was diagnosed with GVHD grade 2. He was put on steroids, back on the voriconazole, and they increased the tacrolimus. The rash has cleared up. His ANC dropped back down under 1 again so he had to go back on another medicine. So, instead of taking less drugs, he is taking more now. We see the doctor tomorrow to reassess his plan of care.

Lori,
I also bought the creams at See's Candy. Those would be far more tempting than the mixed box. A friend of mine also brings chocolates for her med team. These they can share.
For work, I just snuck in the one day for a training class we do as i KNEW the student worker hired was not going to get it right. She did not as she arrived 30 minutes late for set up waiting for the babysitter. I then stayed longer to straighten up and all that jazz. The office held their 2nd Christmas event for foster kids and their parents. It is such fun. I wish i could have gone but i only stopped by to take a picture of a couple of the In N Out Staff!!! The training team for that class has a big complainer, so I needed to make sure the class was up and running for her.
Since my white cells had dropped, I figured not to ask the Dr until after January 10th.
If he says good, the numbers are good, then I will ask him.

I had to look up C-diff. That is cruddy. This site keeps me focused on the fact that i am not at 9 months past my transplant. I am not healed. I am healing and must take care every day. I am baking a bunch of sweets for our campus safety guys. This lets me have a few but give all away.
I am taking Friday off to go do something fun in Orange County. Not sure yet, but something outdoors and where Christmas decorations are in abundance.

Thank you…this is not the way I expected to celebrate the holidays this year! Oddly, throughout all the hospitalization, chemo, antibiotics for AML and the transplant I never contracted C-Diff! I was so relieved to have avoided that scourge.
This summer, five years later, is when I got it for the first time! I had a mole removed on the top of my foot in early June. It became infected and required 2 rounds (17 days) of Augmentin and that opened up a whole new world of ‘issues in the nether regions’. 😂.
Treatment got it under control and I’ve had 5 glorious months of denial, thinking maybe I was one of the lucky ducks who wouldn’t have a C-diff relapse. Joke was on me! LOL.
So we’re hunkered down for the duration trying to make lemonade out of lemons…

Have a lovely holiday season! ☺️