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

Hi @sissyhand, Welcome to Connect. You’re certainly going through a huge medical event right now and it’s understandable to feel overwhelmed. Especially if you’re being recommended for a BMT or CAR-T Therapy following your treatments for what I think is Follicular Lymphoma? I read in a previous comment that you have FL.

If you do require one of those treatments there are different protocols depending where you have the procedure done. If you are an ‘in-patient’ for 6 or so weeks, then having an immediate caregiver 24/7 isn’t usually necessary during that time. But you be expected to have someone (relative/friend) who can be called should the need arise for errands, consults, that type of time. Some facilities are out-patient but you need to lodge nearby with a caregiver 24/7 for a period of time. That can be more of a challenge for some people.
The best place to start is with the social worker at whatever clinic or hospital you choose for the procedure. A larger teaching/research hospital who do many of these transplants is preferred.

You mentioned Mayo…which would be an excellent choice. Which campus are you considering?

@loribmt I am in a similar situation. I am completing my chemo around the end/first of the year (and my mid cycle pet scan was positive-Deauville score of 2). My onc wants me to do a BMT and is placing a referral. I am worried and anxious because I am divorced with two kids and no living family other than my kids, so am not sure who I could get as a caregiver. All the thoughts are going through my head (I have bills, mortgage, etc) and not sure how I can do this as I have no help. I guess I will need to just go to the consult and discuss my concerns and fears and see what Mayo suggests. This is all so overwhelming.

@kally38 I understand and was just informed by my onc he wants to start the referral process for a BMT (I have FL). I am 48 and divorced with two kids, no living relatives other than my children so am scared and anxious about so many things (paying bills, not having support or caregiver, etc). I am almost done with chemotherapy and will have radiation, but am so nervous about other options if BMT does not work out.

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/
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/
You mentioned the Azacitidine is no longer working. Has your hematologist oncologist suggested a new treatment option?