Will soon have a Bone Marrow Transplant: What can I expect?

Hi, I realized after my appointment that I never asked him the name of the medication we're waiting on to be approved! I have another appointment on the 15th with his colleague at another campus closer to home when I have my blood drawn from port, so I'll ask him. I'll definitely keep in touch, this is a great forum. Support is so huge. Kerry

Hi Kerry. It sounds like you have a really great doctor who is going the extra mile to save you from needing the transplant. How encouraging it is to see these new medications coming on the market to help patients who aren’t able to have the transplant or tolerate some of the other treatment options! I hope you’ll keep active in the forum and of course, report back about this new medication and how you’re doing. We never know how many lives we impact by sharing our experiences here.
Do you know the name of the medication that’s waiting for approval?

I was told “a really bad case of the flu”. Well, yeah, you could say that! Lots of vomiting and explosive diarrhea, fatigue. I had not mouth sores, but esophageal sores. Very painful. The good news is that you swing back up quite rapidly. One day you’ll be feeling just a bit more alert, less discomfort, less nausea. I’ve also talked to many patients (I lead a myeloma support group, so have talked to hundreds of patients over the years) who weathered the storm with few complications or side effects. You won’t know till you’re in it.

Yes, I'll definitely share any information I can get from the social workers. My Dr just told me he wants to put the transplant on the back burner fur now, I'm doing pretty good and a new pill is being approved by June that he's very hopeful about. I'm happy to wait and see how I do without going through a BMT. Thank you for talking with me, it helps a lot. Kerry

There are so many wonderful success stories so please don’t let fear hold you back. But the lack of a support system is problematic. I’ve been combing my informational sites trying to find a solution for you and another member.

One of the better sites for assisting a caregiver is the National Bone Marrow Transplant link… but haven’t found anything for patients without a caregiver.
https://www.nbmtlink.org/helpful-resources/

The first month is the roughest but you’d still need someone pretty much full time the 2nd month as well.
This article sums up why it is necessary for a caregiver and their roll. https://bmtinfonet.org/transplant-article/role-family-caregiver#:~:text=Most%20transplant%20centers%20will%20not%20allow%20a%20patient,friends%20for%20help%2C%20or%20hire%20a%20temporary%20caregiver.

Hopefully the social worker will have some good suggestions. Will you let me know what you find out? It could be so valuable to other members in the same tight spot.

Thank you, it's nice to hear a success story, I've heard so many difficult ones. My fear is holding me back and my lack of a support system. I just don't have anyone past the first week. I can't be a candidate without one in place. I'll speak with the social worker to see if there are people available that I can afford, but I don't have a lot of hope for that.

Hi @kally38 and welcome to Connect. You’re right, 70 is still young! I just turned 70 and no way do I feel it’s time to throw in the towel. I had a successful stem cell transplant when I was 65. It is a second chance at life and I’m having a blast! Life is a blast as long as we don’t find them in our blood, right? Bad leukemia joke! 😉

There are patients well into their 70s who have successful BMTs. I’ve mentored 2 patients in the past few years (for my local cancer center) who were 75 at the time and breezed through it. They’re still going strong! Many others have been in their late 60s, early 70s. You’re right, it is a challenge on its own and not having a support system further complicates the process. Having a caregiver is a prerequisite for the transplant process.

Another member in our forum is facing a similar situation right now. She needs a SCT but doesn’t have a dedicated caregiver. So she working this out through several friends and relatives to rotate caregiving duties. I wonder if that might be an option for you to consider?

I found some conversations in the forum of other members with MDS that may be helpful for you.

~I’ve been diagnosed and under treatment for MDS
https://connect.mayoclinic.org/discussion/i-have-been-diagnosed-and-under-treatment-for-mds-whag-are-the/

~MDS Treatments other than bone marrow transplant
https://connect.mayoclinic.org/discussion/mds-treatment-options-other-than-bone-marrow-transplant/

You mentioned the Azacitidine is no longer working. Has your hematologist oncologist suggested a new treatment option?

Hello, I've been dealing with Low-risk MDS for over 5 years, and at almost 70, feel I'm not able to manage a donor given BMT. I'm being treated at Yale with Azacitidine after 2 years of clinical trial duo chemo pill started to fail. Before that in the beginning it was just blood transfusions, I've had a lot. I'm praying something is on the horizon to help prolong my life, at 69 almost 70 it seems young and I have 2 children just married and a new granddaughter. My biggest problem is no support system, I'm divorced and live alone. Thank you, Kerry

Hi @martetom, how are you coming along on your transplant schedule? Any firm plans yet?

My son had a stem cell transplant 16 years ago...he was 21 at the time. He went through it fairly well. Lots of fatigue, but no real vomiting, he was given medication to prevent mouth sores. He did not complain of pain. He had a few complications, cmv, gvhd, unexplained fever. Luckily the transplant team was on top of all this. Again the fatigue was the worst....He is now 37 and has done well, and considered cured, yay! (BTW, his prognosis was only 3%, he had relapsed in the brain). Just expect to be very tired. Good luck, and keep us posted and feel free to ask questions.