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

Ah ha. My second CMV is 336. I got the message a new test result was in and i went right in to see the result. As i was typing a note in the portal, my NP Hannah called. She just got it and knew i would have a question. I am going back in Jan 31st, so if i hit the magic number of 500, my body may get the other pill. My donor fellows' cells are slow moving in there. Does he like shingles, chicken pox and herpes? Geez guy!! There just could be people in my neighborhood stores with any one of these illnesses as any time. Being honest, I have not worn the mask 100%. This is my reminder.

meg1685
City of Hope nurses got me a huge glass of ice cubes and a cup of popsicles and told me during the chemo to keep my mouth frozen. Keep it full of something cold and it will stop that chemo from taking hold in my mouth. I never had cold sores. Not a one.

Yes, I originally had the knee high. The original dr never said different. When i still had a swollen ankle after 6 months on Eliquis and another thinner, I asked for a referral to the vein specialist. It was there I was told surgery was not needed for my DVT but I needed to wear a thigh high stocking as the DVT is on the back of my right thigh. I was also sent to be fitted for the right size.

I will try putting my leg up daily. I sit for my workday, walk a lot, but do not raise my legs as you suggested. I have found that without seeing certain drs, this issue never was taken about in the hematology department. It is about blood in hematology, so i added in the portal after my visit about this DVT.

And yes......
So yes, there are those little reminders from time to time that let us know we’re not 100 percent our former selves…life as a chimera, eh? 😅

My CMV results have not been posted. Looks like that department had a couple days off!!

Hello! I'm searching older posts trying to find what it was that prevented the chemo from giving you mouth sores, as you said - but I can't find it! Would you mind saying what that was again? I am starting with the whole transplant journey later this week, starting with mobilization chemo on Saturday. My biggest concern at the moment is that damnable mucositis! So when I saw your comment above, I latched on. Thanks for your help!!

Hi Kat, if it’s any consolation, my liver numbers still tend to fluctuate even 5.5 years later. My doctor suspects gvhd too but since there is no steady upward trend and often the numbers retreat, we’re just keeping any eye on things and riding it out. Tacro is a possibility in the future if numbers change. So yes, there are those little reminders from time to time that let us know we’re not 100 percent our former selves…life as a chimera, eh? 😅

CMV, along with other latent viruses is usually part of the pre-transplant testing. So somewhere in your bio is the list of pre-existing conditions pre-transplant. In theory we lose most of our immunity to preexisting illnesses. Such as measles. I had those when I was a child and had antibodies in my system. They were still detected after transplant but since the efficacy of those antibodies couldn’t be tested I still needed the vaccinations. I didn’t have CMV but my donor did and so I received that latent virus along with the stem cells. But as predicted, since the donor cells and CMV were old buddies, it didn’t take long for my new immune system to wag a finger of smite and knock those bad guys back to immunity prison. LOL.
However, if there is ever a time when our immune system is weakened with another illness, the CMV can start emerging. So this may be what you are seeing. You’ve mentioned you’ve been tired and feeling like you’re coming down with something and that may be all it takes to have the CMV tiptoeing about on little cat’s paws. Rest, eat healthy fruits/veggies and proteins and limited stresses for a while.
I know! It can feel like backsliding but it’s not! There are days when we get wake up calls to slow down. That’s difficult when we’re otherwise feeling on top of the world. But we have to listen to our bodies. They are well informed, capable healing machines and we need to heed their warnings. 😅

So sorry about that pesky DVT. The stockings are a pain in the biscuits to wear, especially if it’s hot outside. Do you need to wear the thigh high variety? I have some really nice calf-sleeves/compression socks. They’re so comfy and look like cute knee socks but with a little extra oomph built in. Graduating tightness from the ankles on up to the knee but they don’t cut. Also, if your ankles are swelling besides walking 200 steps every hour try elevating your legs over your heart for a while. I had varicose veins from my former job and did have Sclerotherapy, which worked fantastically. But I still make sure I don’t relapse. So daily, I lie on the sofa and swing my legs up to the back rest. Then read a book or watch a movie for 30 minutes. It does help to keep any swelling in check.
Sending a hug from the frigid south! Yes, I said south. LOL It’s minus 23 degrees back home in Wisconsin right now. But down here on the gulf we’re expecting 23 degrees and SNOW tomorrow!! What the heck!! I’ll have my camera ready to snap photos of snow on the palm trees. Poor lizards aren’t going to be happy!

OMG. I wrote a post and then my browser said it was updated. Really!!!
I did not go on tacro yet as my liver numbers went down a bit and i am back on Ursodiol. I will not go back for 2 weeks in order to let the numbers do what they will. I love the idea that my new immune system needs to come into play here.
As to the CMV test, this is the 1st time anything has been detected. 218. It had been a month since my last blood test and visit. I was thinking was i around anyone who is sick. It is cold so a mask inside is necessary and there are sneezing and sniffling people everywhere. I have not got the number from the Jan 17th blood test, so we shall see if my new immune system said, "get out".
As to if I had the CMV in me, i just do not know. I had strep throat twice in my late teens and early 20's, colds and basic things like that. Shingles in 2016. Nothing that required blood tests. The Red Cross only for over 30 years got my blood and platelets. I need to go back and look at a blood test at COH before my transplant. See what i did not know to look for in March of 2024.
My nurse Hannah is an NP. She is very good. She also said your numbers are good and i look good. My hands were a bit red and my cheeks. I said i think it is the cold day. After Friday all is good.
No GVHD, but my DVT clot is still there. I have not been wearing my thigh high stocking. I wear it and it works. I had just looked at my legs together and realized my ankle was swollen again. Dang. The stocking helps so I must wear it. I did not Sat/Sun. Monday am it will be on.

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!

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?

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.

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.