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

Lori,
I love your husband's fun definition. I posted in the other thread i am 100% donor and now a Y chromosome at 6 months, so I am a man my doctor said!!!
Also, the vaccines, so far nothing!!! I woke up, had a cup of coffee and headed out to what i found was a 3-mile walk. I was told the side effects I may get, but by God, my fellow and i said no way. My blood pressure yesterday was 106/66 at my visit. Almost always low, but lower.
One more thing, my sister stopped by with my cat, in her live forever cedar box. That bag i am not opening yet.
I asked my sister if she is having any treatments beyond her chemo for the ovarian cancer. She said no, nothing. She is using food, holistic and integrative medicine ideas. I wanted to know to possibly understand her more. This sort of site may be something she never accepts, for me, it is a chance for each of us, to ease the road for another by sharing our experience, strength and hope. This means listening to all points of view.

Hi @mary612. I’d meant to check in with you and Dane this weekend so I’m thrilled to see an update! 4 months already? My gosh, time just seems to be flying at the speed of life! How’s your little grandson doing? He’s 4 months too, just like his grandpop!

Wow, I’m sorry to hear about the blood clot. That was unexpected and I’m sure pretty frightening…a complication he didn’t need! The food/nausea balancing act is a tough one. That was always my bugaboo too. No appetite, the thought of food was so off-putting. If Dane is not comfortable with the Marinol I wonder if he could opt for some cbd/thc gummies from a reputable company. Might be something to ask his transplant doctor if it’s ok for him to try. They weren’t available when I could have used them. But a person whom I’m mentoring locally, while going through her AML treatments, is using gummies. While she still has some nausea she is able to eat and maintain her weight through chemo! That’s a huge plus for keeping healthy. Anyway, thought I’d toss that information out for you. Might not be allowed because of potential interference with meds.

Thanks for asking…My 5+ year follow-up was super and my leash now got lengthened to 1 year intervals with 6 mo blood work! That’s a huge leap forward. I’d been at 6 month returns to Mayo for follow-ups for quite some time. And blood work every 2-3 months. So this was a lovely graduation for me and a great chat with my transplant doctor. We both felt I was ready for this interval now.

I also had a really special treat of being able to meet in person with @dwolden and her husband who are at Mayo while he undergoes his recovery from a recent BMT there. It’s rare that we mentors have that opportunity. So all in all, my trip to the Mother Ship in Rochester was positive and very fulfilling. We left Rochester and headed up to Minneapolis to spend 4 days with our daughter. It was whirlwind week filled with happy surprises along the way. But also, it served as a reminder of how incredibly fortunate I am, as we all are, to have received a second chance at life. Without the BMT, I’d have been dust for over 4+ years already.
The autumn colors are glorious right now. Here are 2 pics I took yesterday! Mother Nature’s Crayola Box. She brought out the 120 count crayon box this year! LOL.

How are your arms this morning after all those vaccines? I remember the day after feeling like I was whacked with a baseball bat on both arms. But it was short lived and round two wasn’t nearly as memorable. You’re turning into such a young grown up. Hehe. Your new immune system is maturing Nicole. Soon, you’ll be an adult…again. 😅.

It is quite amazing that we can switch our blood types, isn’t it? I’m also now 100% of my male donor’s DNA in my blood. That is what we want…showing we no longer have our old, defective immune system at the controls for our health. So basically about 15% is our donor’s DNA with our bone marrow/blood cells. The other 85% is still us in body and soul! ☺️ We are chimeras, having 2 sets of DNA. Though I’ve mentioned before my husband prefers the definition (in Greek mythology) of a fire-breathing female monster with a lion's head, a goat's body, and a serpent's tail! 😂 Ah well, either way we’re magical creatures…walking miracles.

Thanks for the positive update, Kat!

mary612- 4 months. Having AML, the medical team is right on top of what may be needed next. You are so right that each of us needs our own meds sometimes. Blood clots are crazy. I had never had surgery till i did for BC and I ended up with a DVT on the back of my right thigh. It is still not gone 2 years later.
Marinol sounds like a drug others may love, but it is good your husband said no thanks, let's try something else. High is not my thing!!!
I spoke with my older sibling in person yesterday and she said she declined the Lynparza treatment that i took. She is not on any maintenance drug. To me, she was talking about the healthy way she lives. To another family member she said she is scared the cancer will come back. Me. It does not serve her for me to too the horn of the medicine i have had in my 2 journeys. It is not my journey. My journey like Mary612 says about her husband- Today I begin a brand-new day. For me, it is to head outside now for my morning walk.
A sunrise and sunshine await.

Hi all!
Checking in and hoping @loribmt you had an excellent doctor visit recently. 🙏

Happy to hear the updates from several others on this thread. ‘One day at a time’ soldiers we all are. 😊

Today is the 4 month anniversary of rebirth for my husband.
He is stable after one cycle of post SCT maintenance treatment, except for the new DVT in his jugular vein in his neck that showed up a couple weeks ago. He was on Elequis blood thinner when it happened. They immediately switched him to 2 injections of lovanox every day. It’s painful and will take quite some time to resolve. The docs don’t know what caused it other than he had his tunnel catheter removed from his chest (same side as the DVT) a couple weeks prior. This is his third blood clot since being diagnosed in January this year. He has no history of clotting. He also can’t quite start gaining weight yet. He is eating but the monthly maintenance chemo doesn’t do him
any favors because of the nausea. He was prescribed Marinol, a marijuana derivative. But that made him feel a bit high and he didn’t like the feeling. 😮
And so we go, living one day, one step at a time. Next BMB will be in Nov after another cycle of maintenance chemo next week.

The leukemia doc has suggested she may start him on Onureg only starting next month (as opposed to Azacitadine plus veneticlax which he is taking now). My understanding was a that maintenance chemo for high risk AML is not a one size fits all and is very much up to each individual and their medical team to determine best treatment as tolerated. More unknown territory. More uncertainty. I’m keeping the faith.

Hope everyone sees some sunshine and fall colors today.

Today i was given 4 vaccines. I now visit every 3 weeks. Day 165. Red and white cells dipping under the low, b ut the doctor is not worried. He clicks through all the screen, updates my chart. Not much chart with me until he said your donor is still 100% you now have a Y chromosome. You are male!!!! So I said is that good? He said is perfect, what we went to have happen!!! He said do i see you in 3 weeks. I said you tell me. If it is 3 weeks, then 3 weeks it is.
Vaccines VIS Tetanus, Diphtheria, Pertussis (Tdap), Haemophilus influenzas type b, Pneumococcal, VIS Hepatitis A Vaccine
I left and forgot to make my appointment. I need to call early Monday. October 1st. I think the Drs main NP was out. He was 1 hour late to see me and was moving room to room. I enjoy the NP to cover the small things. Men do not chat the same way. Doctors for sure. Oh, my creatinine was .90. Keep drinking 120 oz. or more.
Enjoy your weekend a day at a time.

caregiversx2- A getting better update. Regular visits with the medical team allow for quicker replies to this darn side effects. I have learned to not say that never happens to me. Tremors no, but ready how it stops your husband from using utensils to eat or drink is tough to read. And those kidneys!!!!! I am day 183 I think and my creatinine as been my red flag on nearly every visit. From 30 days after transplant that number has been watched. I can see my Dr. telling me then "You are killing your kidneys! Yikes!!!!! The medications we take as Lori said. My Tacro ended 2 or 3 months ago but I was given Bactrim to replace the awful tasting Mepron. Well, that affects my kidneys. Being blunt, no yellow pee!! As close to clear as i can get, as that is a good sign!
What this has taught me is i likely never drank enough water for my kidneys. I drink 120 oz or more of just water every day. I had 3 hydration days two weeks ago because my creatinine level was up to 146.

Thank God for all good results, those kidneys. We must save our kidneys, and our medical team will find a way to assist us find a solution that works for us.

Good morning, @caregiverx2! The half-way home mark or, the half-way TO home mark! ☺️ Either way, it’s a small milestone considering the trepidation of those earlier weeks, right? It’s a slow but steady recovery to that second chance at life.

I’m so sorry to see your husband still has the tremors so badly. Has the doctor talked about reducing the tacro? What is your husband’s Tacrolimus trough? I seem to recall that if my trough rose above 7.5 my tremors would worsen considerably. Tacro levels in the body can be affected by other meds, which was usually the culprit in my fluctuating level. Tacro can also impact the kidneys so if your husband’s kidney numbers are off, that might be a consideration.

Wishing him well on the kidney function test today…only good news allowed. ☺️. Thank you for the update! Sending an air-hug!

Today is Day +49. We are almost half-way home. All of his tests look great except for kidney function today. His hand tremors seem worse and makes eating difficult.

You are incredible xx
Always positive
I admire you greatly….from a distance xxxx💖