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

@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.

@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.

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 thank you so much. I am close to Jacksonville, as I live in Tallahassee so I think my oncologist was referring me there.
I definitely would need to get some help since I am single and have no family. I am very nervous about this option and was hoping my onc would do a watch and wait if I go into remission. He wants to get the referral stated though fo a bmt. I just had my mid chemo pet scan with a deauville score of two so that is positive. I’m more anxious of how I’m going to pay bills and who I can get to help me as far as being a caregiver for a bit.

@sissyhand, having a consultation with a BMT specialist doesn’t commit you to the precedure. It would be good for you to learn more about the option to see if it’s necessary at this time. If you’re having a positive response to your treatment, with a lower potential for recurrence, then maybe talk this over with your oncologist about deferring the BMT.

I mentioned earlier, that talking with a BMT social worker can be very helpful to work through some of the practical challenges that come along with a bone marrow transplant. There is a lengthy recovery time of 6-12 months and the need for a dedicated caregiver. One of our members @katgob was in a similar situation where she didn’t have any one person who could fill the role of caregiver. But she was able to make arrangements to recover at a friend’s home and then return to her own home. Often, the logistics, with some faniggling, can be worked through.
There’s also some great information through National Bone Marrow Transplant Link. There are podcasts, publications and information for people pre and post transplant. Here is the link:
https://www.nbmtlink.org/
Look on the menu and check out Publications. There is info on financial guides per state.

If you are close to Jacksonville I would highly suggest Mayo Clinic. Having the deep bench of specialists with a larger teaching/research hosptial/clinic is important.

Do your kids live nearby who could give a hand if needed??

@loribmt well, there you go. In short, it sucks. I found the 28 day hospital stay the worst part. Constant interrupting. The alarms on fluids are a nightmare. It's just major discomfort really. Not painful just a mental trip. You'll make it.

Hi, @dar123 Welcome to Mayo Connect. Congratulations on your bone marrow transplant. Sounds like you’ve gotten through the more challenging early days. My experience was a little different with being an out-patient at Mayo-Rochester. I had to return to the clinic daily but thankfully not confined to a hospital room. That would get old pretty quickly! But you made it!
If you don’t mind sharing a little more about yourself, what was the diagnosis that led you to a bone marrow transplant? How long ago was the transplant? Was it an allo or auto?

@loribmt good morning. Acute ML (something) leukemia. (It's early). Anyway, I was finally diagnosed with about 2 weeks left. Spent a month at Mayo immediately. I don't think few thought I'd make it. I could see it in their face. But, I did. Spent next 9 months or so as out patient. Once we got me practically cancer free I got the stem cells. Got em from a young German man. I'm about 60 days post. Doing great. Some rejection. Have an irritating rash. Steroids help. Start my weight lifting program today. Self inflicted. I have little muscle left. Was very strong a year ago. Cancer seems to love muscle. That should cover it.

Good morning,@dar123. You and I share a similar story with AML, lengthy hospital stays to get it under control and then our BMT journey! AML, Acute myelogenous leukemia (or acute myeloid leukemia) can be a real bear to wrestle into submission. ☺️.
At +60 days you’re more than halfway to the infamous
Day 100. It sounds as though you’re doing very well. A little gvhd is actually a good sign that your new immune system is taking its job seriously.
As you’ve already found out the confinement in the hospital and the initial recovery period of the BMT can take a toll on the body with muscle loss. Weight lifting is a great way to regain stamina, muscle and bone mass. Slow and steady wins this race though. You’re still early in recovery and some of the process can’t be rushed. With your determination you’ll be amazed at how well your body will respond to even light to moderate exercise, along with walking! Core exercises are important as well.

At 71, I’m 6+ years post BMT, super active with daily strength training and walking 6+ miles everyday…I feel like I’m in my 20s/30s. Another friend of mine, @g4c, 2.5 years post BMT recently hiked several mountain trails. One at 14,065 feet elevation. Talk about determination and grit! So hang in there, @dar123. I know you’re feeling rather weak right now, but you should see steady improvements over the rest of this challenging first year.
Are you in Rochester?