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

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.

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…

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.

My husband is at post-transplant day +148. He is still having to have magnesium and hydration twice a week. He is being slowly transitioned from tacrolimus to Jakafi and weaned off the steroids. Hopefully, being off the tacrolimus will restore his kidney function and magnesium levels and the Jakafi will control the GVHD without bringing his blood counts down too much.

It is hard to believe that 313 days have passed since his diagnosis. 2024 was a blurr.

caregiver2. Thank you for posting. Dang the gvhd. Briefly last week the dr said he may put me back on tacro. Those Drs and nurse in the transplant unit strive to cure. We show them our side effects will keep them on their toes.

I am 284 days post-transplant and Oct 2, 2023, was my diagnosis day. I almost forget i am a transplant patient most days. Last week the CMV in my blood, that fabulous thing that can cause herpes, shingles and those things showed.218. Nothing has been detected in 9 months. My liver enzymes were up too. Yesterday i had a one week follow up. They put me back on ursodiol 3 times a day to protect my liver. My nurse asked if I have ever had pain in my gallbladder. I said scans have shone a few stones, but no pain. Things looked a bit better, so hopefully the ursodiol will help. as to the CMV, there is another pill beside acyclovir. Valcyte. The CMV blood test takes at least an extra day. My nurse said do not worry as these changes have solutions. My next visit is in 2 weeks, if the CMV remains detectable she will check with the Dr. to change the pill.
I told her i was in a zoom meeting for breastcancer.org and suddenly realized i was thinking about cancer returning and all that. Since I arrived her in connect it is amazing to see how time has passed and i have 6 plus months of walking daily and water, water and more water. OOPS! My creatinine was up to .95. I knew it. I must drink 80 plus. I was having a cup of tea or another coffee this week and i realized it replaced water. Not intentionally, but it did.

Hi @caregiverx2 Welcome to the new year! I hope this one is much less eventful for you and your husband! My drama year was 2019 and you’re right, it just goes by in a blur. So much came flying at us starting in January! Phew!

Tacro can decrease blood flow through the kidneys. I was on Tacrolimus for 2.5 years, though at a much lower trough level, for a gvhd issue. It started impacting my kidney function but after I was finally able to stop the med, the numbers improved significantly. So fingers crossed this will be the change for the better in your husband as well. Sorry to hear he’s still having the magnesium infusions. That takes time out of the day, doesn’t it! Can you do the magnesium bulb at home or does he need to go in to an infusion center?

How is his gvhd? Is he still dealing with the rash?

Hi Kat! I’m curious as to why your doctor wants you back on Tacro? Are you having any symptoms of gvhd?

Interesting that CMV numbers are starting to creep up. We’re happy campers as long as it’s < 35 or non-detect. 😅 This will be a good test of your new immune system to see if it kicks in to tamp that virus back down into dormancy. I was alerted that CMV did come along with my donor cells. Previously there was no evidence of this in my body. So the doctor watched closely with every blood test. About 2 months post transplant, the numbers started to edge upwards. The NP wanted to start me on another anti-viral. My doctor said to wait. So we waited and tested in another week. It was up in the 200s. Then next week, it was back in the non-detect area!! My new immune system recognized its old enemy and snuffed it out! Do you know if you had CMV previously or was this an added gift from your donor?

I love the comment from your nurse! “Do not worry as these changes have solutions.” Yes!! They do! ☺️
You’re doing so well in your recovery and always such a joy to see your encouraging updates! 😍 Hugs!