Reduced intensity BMT

Hi @drawlings0803. Boy oh boy, your doctor is sure a ray of sunshine! LOL
Most everyone I know over the age of 60, who has had a BMT, has received the reduced intensity pre-conditioning. While it’s not a picnic on the shore, the conditioning is crucial to eliminating any cancer cells and preparing our bone marrow for the new cells which will be arriving.
So don’t let the term “reduced intensity” alarm you. As we age, we’re not able to process drugs and such through our kidneys and liver as easily or rapidly as when we were younger. This protocol has been researched and refined over the years to benefit our age group! So you’re reaping the benefit of studies with patients who have gone before you.

As for relapse…of course, life holds no guarantees. BUT, and it’s a big but…there are additonal things that may be done if your doctor sees early signs that could lead to a possible relapse. After you receive the stem cells, you’ll have many frequent follow-up appoints. Your doctor will check what’s called chimerism after about 30 days. (And periodically every few months after) That is a percentage of your DNA in relation to your donor’s DNA. There will be two numbers. You’re doctor will watch to see that they are, ideally, 100% Donor - 0% recipient (you). That shows the success of the graft. (The graft is the stem cells. You are the host or recipient)

With the newly infused cells you’ll be on an anti-rejection medication such as Tacrolimus. The new cells will be very aggressive within the first few months of the transplant. So they need to have that level of excitement curtailed a bit. The medications work well to do that! Gradually that is tapered until you are off the meds.
I’m sure you’ve heard of graft vs host disease. If your new cells are too aggressive and not held in check they can start attacking the host…that’s you. Eventually, because your new immune system will be adaptive, it starts recognizing the proteins of your body and eventually the two will play well together. It can take a little time. Longer in some than others…we’re all unique.

Here’s the big BUT…if there are signs of the graft not being very robust and your numbers are not 100/0%, from my understanding, your doctor may have several potential options.
The first thing usually considered is the reduction in the dosage of the anti-rejection med. That will allow the cells to become more responsive, making the graft more robust.
If that fails to get the intended result, they may do a DLI (donor lymphocyte infusion) to “boost” the new immune system. This means getting more cells from the donor. Or in my case, at the time of my transplant, my doctor held a certain quantity to be frozen should I need it.
Having a 2nd bone marrow transplant has also been done with patients who relapse.
Some higher risk patients may also receive post transplant maintenance chemo for a period of time, just to make sure. Like belts and suspenders. That reduces the risk for relapse.
But more frequenlty, the first time is a charm and patients are rewarded with all their hard work with a 2nd chance of life.

The options listed above are from conversations with my doctor during my BMT journey. You might want to ask your doctor about them.

When you get to a point in your MDS when medication fails, there are not a lot of options there either. Having the BMT, can offer the only potential cure.
How did I do? Are you feeling a little more encouraged? ☺️

Oh wowza Lori thank you SO much! Yes, I feel much better! I know the Dr wants to be transparent, but the way he presented it to me made me feel really scared, almost like relapse was more than likely to happen. Geesh!
I spoke with my first hematologist on Thursday; he has a softer demeanor. I reminded him that they are telling patients this information all day long. They need to remember that the patient is hearing it for the first time. He agreed.
Thank you for an excellent explanation of the transplant process. Really really great information! And so good to know how well things are monitored after the transplant.
I’m sure I’ll be back with more concerns in the next couple of weeks, or maybe just looking for a shoulder.
Hugs!
Diane

Lori said it so beautifully. She helped me last April as i started my BMT journey and opened my syes to how the whole process would unfold. We are here for you. This is a beautiful place to ask any single question you have as many of us have walked this road.

Thank you! I’m so glad I found this group.

Hi drawlings803,
I am 61 and had an allogeneic transplant 8 months ago for eosinophilic leukemia using reduced intensity chemo prior to transplant. I also had lupus and a rare immune problem called HLH so they weren’t sure what problems might have arose from those issues, but my transplant went well. So far it has been very successful with 100% donor graft acceptance, no sign of cancer and no GVHD at all. So reduced intensity does not mean reduced success. Also, just because your doctor said there are few options if the transplant doesn’t take, doesn’t mean all doctors will feel that way. It’s tricky with sct because they are so risky that the doctors tend to focus on all the potential bad outcomes so we are fully informed, but the reality is that the sct works for many people and there are usually options and treatments if things don’t go perfectly. It can feel scary but try to focus on “what if it all goes well” instead of the potential scary problems. Easier said than done but I found just asking that question got my mind to focus on happier thoughts, if even for a short time. I wish you all the best.

Thank you so much for your words of encouragement and for sharing your story with me. I love your comment ‘what if all goes well?’ So good to remember! I have a tendency to think of the worst, somehow feeling like if I think that way, it won’t happen. Crazy - I know!
So with the help of this group, I feel less scared, more positive, especially regarding the reduced intensity regimen. Thanks again!

Thank you all for a great conversation. Tacrolimus Sounds like a nightmare of side effects. As I read through the list I wonder how do you have any form of activity while taking this? How long do you take these drugs after a BMT?

Thank you

Look at Tacrolimus as a lifeline. It helps protect you after a BMT by keeping the newly activated, overzealous stem cells subdued during the crucial early months of the stem cell transplant. As a BMT patient you’re carefully monitored and will have frequent blood work to make sure the tacro level in the blood is kept at a specific number called a trough.

Patients who undergo a solid organ transplant such as heart, liver, kidney are on anti-rejection meds generally for life because their body will want to ‘rid itself of the intruder’ which is the organ. In a BMT, our bodies are seen as the intruder. The new immune system is strong and over eager and may attack our bodies. Eventually, given time, most of us have the ability within 3 months or more to be off the tacrolimus. Some take longer. My husband and I used to joke about my new immune system, “the force is strong with this one”. I was on a reduced level of tacro for 2.5 years.

You will be on a number of meds during your time of recovery. Since your current, defective immune system will be completely wiped, you will be vulnerable to infections and illness. Enter the temporary fix of “better living through chemistry”. You’ll be taking an anti-viral med, antibiotics, an anti-fungal, anti-rejection med, usually ursodial for the liver and Protonix to protect your stomach and possible other meds as needed.
This regimen sounds intimidating. It was for me. I explained to transplant doctor upon hearing about the amount of meds I was going to require that I have never had more in my medicine cabinet than Vit D3 or Advil. He told me, that if all goes as planned, by next year at this time, I would be back to Vit D3. Well it took me a little longer but he’s right. I have only one prescription and it’s a very low dose statin.

It’s important to take these meds. Some may have side effects. Early on with Tacro, my hands had quite a tremor. Made my artwork take on a whimsical quality. But gradually my body adapted and with weaning from the meds, all systems returned to normal.

I was also on antibiotics for 2.5 years. No issues at all! Daily, I made sure to eat fat free, non-flavored Greek yogurt making sure it was life culture. I still eat it daily…to make it palatable I put in a small spoon of preserves.

Most of the drugs stop once you have your vaccinations anywhere from 6 months forward from the BMT. Hope this helps! I’m here along with our BMT posse to answer any and all questions for you! Hugs!

Yes yes. Sneaking in a post while i am at work. I had MDS, my tacro ended just before 90 days past transplant.

I too was amazed at the drugs. Lori mentioned all of them. I was diligent in taking all of them. I did not stop them till i was taken off. I felt attached, so when the Dr. would take me off one it would be after a visit and a blood test where numbers were stable so he would say "stop taking this drug". I knew those pills worked as i was not having side effects, infections or anything.
Yikes, a couple times I had just gotten a refill!! If i did not have insurance i would been bugged. A big waste of money. Most pills are refilled every 2 weeks. At 470 or so days past transplant, I have the measle vaccine at 2 years

Thanks Lori & katgob! More excellent information. Knowledge is power. And what I am gathering from this is we will all need these medications. But how long we’ll take them is different for everyone.
As a nurse I’ll admit I’ve been stubborn about meds in past years, thinking I ‘didn’t need them’. 😂
Well, not this time. Trying to be the most compliant patient ever!!