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

Too old to have transplant. No stem cell either😔

Lori and all,
I believe most transplant hospitals have a team that works together. I received a call from a nurse in that department who was checking on me!! She saw i was doing well and asked by a out the Tacro. What was I taking now and when was it ending. She also covered the other drug i was talking day 5-100. Itt is the anti-rejection drug that was paired with the Tacro. Well, she said in the past the drug i take from 5-100 days used to only be given when you had GVHD symptoms. Sometime ago they started giving it for most of the 100- day period. I am going to ask my RN if she knows how long COH has one this.
I asked the transplant nurse about GVHD. I said I have not had any symptoms and if I do not, does that mean I could get them later? She said no, some people never get them! You might be one who does not. On my 100th day after transplant, July 18th, I will have my BMB. We will see how much of my donor is part of me.
This journey if nothing else is a daily thing. My blood work stayed about the same. More water is helping my kidneys!! Seems water is good for all of us with these transplants. Flush out the meds and keep the kidneys from over working.

I am day 89 past transplant. Crazy. Coming out of the hospital on April 29th, I had no idea how the day-to-day would go. I was given guidance here on this site from Lori and others who shared. Lori lays it all out for the new people waking up to knowing they have MDS or leukemia and wanting to know what will happen. I got to hear about my pre-testing to qualify for my BMT and the hospital and the process many transplant departments use for a bone marrow transplant. All the info was more relevant as it was from someone who walked through the procedure themselves. The booklet I received and the nurse and social worker I talked to had talked from a procedural perspective. Here I got feelings. What would likely take place and how to take it a day at a time. Real experiences like fatigue, nausea and more. To always keep the nurses and the morning visiting Dr. posted. They cannot take action if they do not know.
Just for right know, I have had good results, I am being weaned off a drug I took twice a day since transplant. Also, the other drug I got day 5- 100 has 11 days to go. That 2nd drug used to only be given when a patient had GVHD. Now it is given day 5-100. I was in a research study that gave me the other pill. Both pills to lessen the chance of GVHD. My transplant nurse recently told me that not everyone gets GVHD. My Dr. says they might want me to get something, so my body can fight it off.
Mysisster and brother have been caring for my cats the 95 days i have been out of my house. I picked up my car a couple weeks ago and saw my cat looked like she had fleas. Scratching. It came to pass that she is deeply infested. One flea shot did not work completely as she had mats all across her tummy. OH MY! I tried to work on it, but realized i could cut her. Tomorrow at 9:30 my sister is taking her to the vet. My girl Hazel needs to be shaved. I am thinking and hoping the vet clears the fleas off and trims her, but not entirely. I do have a 2nd cat who also will need the vet likely, but not till i get home. I will ask my sister to help me take him. I do hope my Hazel is going to be ok. She is 12.5 years.
What i know for sure is, i could not have had my transplant without my friend letting me stay with her. I also needed by brother and sister to do the best they could with my house and 2 gatos. I feel blessed to be good today, and hopefully my 100-day Bone Marrow Biopsy will have the results we want. The donor remaining a close to 100% as possible in my marrow.
BMT lets us look at life with the possibility there is a lot more still to come.

Thank you for this post. It is very helpful to hear about your experience as we are heading into stem cell transplant for my husband. Hope all continues to go well for you medically and your kitties get you back soon.

Good morning, @katgob! You remain the ideal model for how this is all supposed to play out from the transplant side of things. The trial you’re in for preventing serious GVHD side effects could be a game changer for many bmt patients. Those of us getting the transplant do need some GVH reaction. That’s the premise behind the transplant and receiving a new immune system from a donor.
Essentially, our old immune systems were defective in recognizing cancer cells for AML, MDS or a host of other blood or bone marrow conditions. The new system should recognize any newly emerging cancer cells from our past condition. When this reaction happens it’s called graft vs tumor effect. So it’s important that there is some reaction taking place. We just need to be mindful of any symptoms or changes in our health and report those to the BMT team for monitoring because small things can get out of control quickly in the first few months

Aw, I’m so sorry about your cat having fleas! That’s horrible and the thing is, if they are in the house, that will take a lot of work to eradicate completely. Diatomaceous earth sprinkled around on furniture and carpets, rubbed in and let sit for a few days kills the fleas. The DE has to be vacuumed and repeated every few days until there are no more sign of fleas. The eggs can lie dormant for years and are activated by heat, such as people walking on the floors, dogs, cats lying on them or even the beater bar of a vacuum can activate. The diatomaceous earth is a desiccant so it dries the eggs and also the sharpness of the diatoms cracks the shells killing fleas and their eggs. LOL yes, this is from experience. My golden loved to lie around on the patio. An over abundance of bunnies one year brought fleas the gift of fleas. Ughhhh!
I can’t believe you’re on day 89 already!! As always, thank you for your updates and spreading the encouragement for others who are about to embark on a stem cell transplant. Sending an air hug!

Day 90!
Cat to the vet and fleas did all the ugly stuff to her. She had a blood test to, so like ours, I hope her results are manageable. She is 12 1/2 years old. Thank you for the info too. I am going to google it and see where i can get it! We have not had fleas for 30 years in my house. Me being away with two visiting siblings meant no one caught it!! But one of them brought them in on their shoes!!!

For sure my Hematology Dr wants some issue to come up and I expect he will have something up his sleeve if my donor is still 100% or near that for my BMB. I will be on the lookout as i go home on the 18th or the 19th. Crazy!
I was really bugged that my NP was a floater, so I am getting a new one. They cover others on maternity leave. She has just been kind and attentive. I met the new NP and she knows to check my past history so she can talk to me knowing some past history. I met her Friday and asked her to do this for me.

Well, I got news from my sister, that my cat died early this morning. Honestly, what a way to start the day. I am day 91. My sister who called me is the one who had ovarian cancer. In my journey through this MDS, this is my roughest part so far. I could not be with my cats and sadly, they did not get the attention they usually got from me. I realize in our lives, that some things happen that we can never know or plan for. Our bodies have issues. Cancer and so much to walk through.
Some people find it odd when people say their pets are like family. My Hazel cat was a fluffy white girl with one blue and one green eye. Only a 10 pounder, up until I left for treatment, my other fluffy cat chased her. I had a cat video camera, so i have watched her and the other cat Simba get to be more friends.
My caregiver reminded me i am not supposed to be around pets just now. To anyone who has pets, give them an extra bit of love today.

Aww, my dear I’m so sorry for your loss. What a beautiful cat! Lookit that sweet face. My heart is breaking for you, @katgob. I truly understand the emotional bond we have with our pets. They are a source of unconditional love and leave a hole in our hearts 100 times their size when they pass away.
This has to be even more stressful for you knowing that you couldn’t be there for her. Your caregiver is right, you really shouldn’t be around pets right now. They are a source of bacteria that should be avoided during your early days of transplant, especially not cleaning a litter box. I hope your sister will spend some more quality time with your other kitty because she will surely miss her little buddy.
Sending you a gentle hug, my friend. 😢

I’m so sorry for your loss. After my BMT, I missed my furry babies so much. When I did get to go home, my dog didn’t want anything to do with me. My feelings were so hurt because all I wanted was to love on her. My cats were so happy to see me. Eventually, my dog came around. Pets are family and plus they are good for your mental health while you are recovering. Lots of hugs to you and keep the faith.

@katgob Good morning, I am so very sorry for your loss. I understand your grief and know how deeply it is felt. It is painful and difficult, especially at this time in your life. I hope you can take a wee bit of comfort from the years of love and comfort you gave each other. You are a good cat mom. What a beautiful girl she was! You will see your other sweet kitty soon. Sending hugs….