1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Preparing for Bone Marrow Transplant: My mind is racing

Posted by avaleir @avaleir, Jun 22 8:50pm

I have a Bone Marrow work up coming up soon. They will start the pre-transfusion testing July 9-10. I haven't slept I feel nervous, and my mind is racing like crazy. Anyone else had this happen. Like right after I got the good news.
Ava

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katgob | @katgob | Aug 14 11:04pm
In reply to @louisern "Interesting story! We had a consult at COH and they denied transplant out of hand. Said..." + (show)
@louisern

Interesting story! We had a consult at COH and they denied transplant out of hand. Said Dave was too low risk. Different mutations than what you had and he did not have a malignancy so that my have been the difference. At our initial consult the Mayo doctor said he was not eligible for transplant but could be in the future if mitigating therapies failed and his condition worsened. Well, that happened. He had a "single lineage dysplasia" which affected only his ability to make red blood cells. But you can't live without those so the outcome is eventually deadly. Tried several therapies and only one made any difference but it involved a chemo drug that wiped out his immune system so completely that it was life threatening. He had so many blood transfusions it became difficult to find comparable blood with all the antibodies he developed. Finally when there were no more drugs to try they decided he was eligible for transplant.
Thanks for your story and it's so good to hear you are doing great! Live long and prosper!

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louisern
I think it sometimes about the doctor you see and what you have walked through before. Just possibly for me it was because my blood numbers had a record of continuing to decrease to low levels. Red cells and platelets. I like talking to the RN's and seems for your husband the risks at that time with a transplant outweighed the help. I alos got lucky to accept participating in a research study that i looked at online. Its history. Others had started it and I was a group to add to the statistics. A couple dozen of us were in it. A pill that was given when GVHD symptoms happened, in this study we got it day 5 after transplant to day 100. There is a tacrolimus pill I got to and that one ended or tapered starting day 100 too. Both are antirejection. Fingers crossed i have not had any GVHD.
The transplant nurse called to follow up on me and said some people never get gvhd symptoms. Those can be good, as it gives our new immune system a chance to fight off the germs.
Was Dave treated with the blood transfusions in Hawaii?

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1 reply
caregiverx2 | @caregiverx2 | Aug 16 5:10pm
In reply to @avaleir "Hello all, I am here!! I' been here in the hospital at the Mayo Clini, Jax....." + (show)
@avaleir

Hello all,
I am here!! I' been here in the hospital at the Mayo Clini, Jax.. I'm set for my Transplant this Thursday. I'm getting increased doses of Chemo every two hours. I'm snacking on healthy foods and drinks. That seems to be working to keep any vomiting from happening. My head is no longer racing because the Team here is wonderful. Do worries.

I have housing setup at the Hope Lodge. That portion is all set. Weve had to stay at the Holiday Inn in the area. I've stayed at 3 different holiday inns. Do Note that the two Holiday Inn Express offered free breakfast. But the Holiday Inn did not. However, we needed to add two nights to our stay at the Holiday Inn. Once the front desk found out we were Patients at the Mayo Clinic, they gave us a discount. So, now my husband is here staying in the room at the hospital for the next two nights with me, then he will check in at Hope Lodge.

Food would be a big expense, but now that I'm in the hospital. I'm getting whatever comes with the room. Since I have LapBand, I eat small protons. That leaves a lot of food for my husband able to eat. Also, they've told us after I order my meal, I can order every 45 minutes to the kitchen. Of course, I would never do that. The Hospital unit have nice healthy snacks also. Hope this helps.

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Hi @avaleir
I have been thinking about you. I hope all is going well.

We checked into Mayo Clinic Jacksonville today. They started Dennis' conditioning chemo today. His SCT is scheduled for next Friday. If you hear a booming voice, then see a really tall man, it is probably him. We will be here until about mid September and then we will be at the Hope Lodge.

Patti

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Mentor
Lori, Volunteer Mentor | @loribmt | Aug 30 9:08am
In reply to @avaleir "Hello , y’all! I am post day 11. This week has been a challenge, but the..." + (show)
@avaleir

Hello , y’all! I am post day 11. This week has been a challenge, but the Mayo Team has been here above and beyond. I’m feeling a lot better. I’m back to eating soft foods so far. This Mayo is awesome!!♥️♥️im still waiting for a white blood cells to start mutating!!! Avaleir!!

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Hi Avaleir! You’re coming to the end of your first month post transplant. I’m expecting some of your energy is returning by now. How are you feeling?? Is your appetite better?

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Mentor
Lori, Volunteer Mentor | @loribmt | Aug 30 9:11am
In reply to @clock456 "@avaleir My husband is preparing to go through a Bone Marrow Transplant in Jacksonville as well...." + (show)
@clock456

@avaleir
My husband is preparing to go through a Bone Marrow Transplant in Jacksonville as well. He has high risk B-ALL. We don't have an exact date yet but they are thinking around mid August. His son is his donor and has already donated his cells. We live just outside of Jacksonville but not close enough to be within their criteria for the first 100 days. Do you know where you will be staying yet? We don't have exact dates yet so we can't set any housing up yet. I wish you the best. We have a great team here in Jacksonville.

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Hi @clock456 I wanted to follow up with you to see if your husband has had his stem cell transplant yet or if he’s on the docket? Any update?

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louisern | @louisern | Sep 8 11:10am
In reply to @katgob "louisern I think it sometimes about the doctor you see and what you have walked through..." + (show)
@katgob

louisern
I think it sometimes about the doctor you see and what you have walked through before. Just possibly for me it was because my blood numbers had a record of continuing to decrease to low levels. Red cells and platelets. I like talking to the RN's and seems for your husband the risks at that time with a transplant outweighed the help. I alos got lucky to accept participating in a research study that i looked at online. Its history. Others had started it and I was a group to add to the statistics. A couple dozen of us were in it. A pill that was given when GVHD symptoms happened, in this study we got it day 5 after transplant to day 100. There is a tacrolimus pill I got to and that one ended or tapered starting day 100 too. Both are antirejection. Fingers crossed i have not had any GVHD.
The transplant nurse called to follow up on me and said some people never get gvhd symptoms. Those can be good, as it gives our new immune system a chance to fight off the germs.
Was Dave treated with the blood transfusions in Hawaii?

Jump to this post

Yes Dave had numerous blood transfusions in Hawaii. For about a year he was receiving transfusions every 2 weeks. He became very difficult to crossmatch requiring several days for blood to be shipped in for him as we live in an area without a blood bank. He lived with a hemoglobin around 7.0 for much of that time, which is no kind of a life! He still tried to work but it was difficult to keep a job with the time off required for medical needs.

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