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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori
What diagnosis brought you to a BMT?
How has it impacted your life and that of your caregiver?
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Had my appointment and seemed to go okay. Taking me off Darzalex so a bit worried about that but was only monthly so maybe not an issue.
I agree with you! Have a bone marrow biopsy under anesthesia is the only way t to go. ☺️ Are you still having weekly blood tests and infusions?
I was for the past 16 months but after missing one because of a trip to FL my platelets actually improved. Hematologist suggested I come every other week. which is fine with me. Platelets are staying around 120. It took over a year to get them above 40. I was beginning to wonder if the Cancer & Hematology Center saw me as a cash cow. Medicare EOB's showed weekly cost of $47K. Glad I have private insurance which picks up everything Medicare doesn't pay.
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1 ReactionAm a bit down today. Wish I felt better and think it is that no change in my rib issues. Still somewhat tender and always aware of it. Revlimid has DVTs as a side effect and more prevalent in those with MM. Always worried and not good for me.
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1 Reaction@tml, I am a liver and kidney transplant recipient and I am very familiar with down days and the stress of wondering and worrying. I have had my share of miserable days of ugly side effects, too. I just felt like I wanted to drop in and say that I hope that you will begin to feel better soon.
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4 ReactionsHi @tml ugh, down days are the pits. Especially after you had a relatively positive week on your new meds and a feeling of hope on the horizon. It’s ok to allow yourself to feel less than perky but I’m going to encourage you to keep pushing forward! Just don’t get caught in that downward spiral again. You know what I’m going to say, right? You have to stay positive. I’m a real nag when it comes to that. ☺️
I read the side effects of revlimid too and I can see where you’d be concerned about DVTs. But it looks like it’s more prevalent with MM patients who are taking dexamethasone, a steroid medication. Are you on a prescription for steroids right now? That’s another question for your doctor. They may suggest a blood thinner while you’re taking it to avoid any possibility of blood clots.
Because you’re a patient at Mayo, you have a patient portal where you can contact your doctor or his NP. This is the doctor who prescribed the Revlimid, right? It’s easy to send off a note to them to ask about a blood thinner, if it’s safe for you to take one or advised in your case. Or check with your new local doctor. Don’t be hesitant to ask questions. 🙂 Part of their treatment for you is also dealing with your emotional state, to help avoid anxiety and worry.
I also know it’s really hard when you’re dealing with pain on daily basis. It saps your energy. Did you mention the rib tenderness to your doctor? It’s pretty common to have bone pain with MM so have you been offered any suggestions for pain management?
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3 ReactionsKidney and liver! So happy to know you were able to have the transplant! I guess besides all the drugs it is the waiting. It is too soon for me to know if anything is working. Most days I am okay…I am sure that was true with you. I so want a stem cell transplant and it just seems so far away…
I am also on dexamethasone and have had a DVT about 5 years ago. Have a blood thinner that is subcutaneous but have to give it to myself. Looked at video on how to do that but afraid of doing it wrong. I guess will try tomorrow. Wearing compression socks but perhaps not enough.
My husband says take to next appointment but that is not until Thursday, I was fine and now this. Every new thing is an added stressor after I was so happy to have the Revlimid. I will not even know it is working until April 7th and if no improvement, not sure if I can cope.
Just ups and downs and mostly down right now. Am trying not to seem stressed to my husband but it is very hard to try and seem fine when I am really not. Thanks for your support as I need something! I have pain meds and Xanax and Lexapro and nothing seems to matter! I reread the Mayo report and so hope I can really get back to remission but how long? Also lists other meds if these do not work but I need the current ones to work!!! I so need that transplant that I was denied last Fall now they say they would give it to me! Hah!