Connect
← Return to My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Discussion
My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 2 days ago | Replies (549)Comment receiving replies
Wow, y’all are so inspiring. I was Diagnosed with Sytemic Amyloidosis AL. It is not a cancer they say. But a rare blood disorder 1 in 9000 people. Lucky me🥴! I also have Hypertrophic obstructive cardiomyopathy. Both cause obstruction. the amyloid seems to like my heart the best. I get dizzy upon standing. Get tired fast. Have been known to pass out when least expected.
I was on Camzyos for 5 months before they suspected something else was wrong. ( the camzyos and this amyloid, I believe created a war inside my body)
I went to Mayo Clinic in Minnesota @ the end of FEB. where they confirmed my diagnosis. I came home and got with an oncologist here close to home where I started chemo on April 12
I get to for weekly shots for 3-6 months depending on how my Light chain numbers look and how I react to the chemo shots( in my belly)
They are cleaning me up for a Stem Cell Transplant. Which I thought would be @ OU medical center but was said to me they want me where I have a hemotolgist/oncologist already familiar with my case( Minnesota) anyways I was told they would harvest my (baby blood and do a couple days of chemo the put my baby blood back in for growth, I would be in isolation for 2weeks. Then had to stay close (20 minutes away) for 2 months.
Thank you for sharing your stories.
It’s nice to know that other people share the same stuff ( even though it’s different) hope that makes sense.
Thank you listening.
Replies to "Wow, y’all are so inspiring. I was Diagnosed with Sytemic Amyloidosis AL. It is not a..."
Connect
Hi @soonerfan, Mayo Rochester is my home away from home! So I’m very happy to hear that’s where you’ll be having your stem cell transplant. You’ll be in amazing hands there!
It sounds as though you’ll be using your own cells which makes the journey a bit easier on you. The recovery time is much faster than if having to use a donor’s cells.
We’ve had several members who have had what’s referred to as an autogenic stem cell transplant…using their own cells. You’ve already got the gist of what will happen when you’re finally ready to start the process. You’ll be receiving some injections at the clinic to ramp up your blood production. When the numbers are appropriate you’ll have your cells harvested. That’s very much like donating blood except stem cells will be culled out of the blood as it recycles back to your body. Those cells will then be frozen until you’re ready for transplantation.
Next you’ll have the preconditioning chemo which will basically clean your bone marrow of residual disease. When that’s over, you’ll be infused with your saved blood cells. It’s the same as a blood transfusion and takes about 20 minutes. Pretty anti-climactic considering the hoopla leading up to the event. 😉.
The cells circulate through your blood stream and then like magic, the stem cells know exactly where to go into the bone marrow to set up housekeeping again! It takes some time to recover but so worth the effort in the end!
I mentioned earlier about other members having autologous transplant. This was written by @jstpeachey last summer as she went through the procedure in Mayo-Phoenix. You might like to read through this discussion too.
https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/
Since you’re still in treatment back home you’ve got time to prepare. I know this can all sound daunting with so much planning and things to consider. Do you have any specific questions you’d like to ask?