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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 7 hours ago | Replies (578)Comment receiving replies
After reading your story I am heartened as you went through so much! I can imagine that it was incredibly difficult and also needing a donor! I do need to think of the positive things instead of wishing myself in the past making different decisions as I am where I am. I will try to do the shot soon. I have tried to list some things I should do to feel better! Get my hair cut perhaps. I do need to focus on what is good. I keep comparing to my first round of medications that were very minimal. I am at this point way luckier thanks my sister in law who had several kidney transplants. She had type 1 diabetes but it was the heart surgery that she did not survive. So many on this site have had huge problems that they have surmounted and I know it can be done. I just need to stop my out if control brain! I will think of all if you now!!!
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@tml I am also a multiple myeloma patient, and have been following your posts, along with those of @loribmt and @rosemarya. Here is my current story:
Since last August 2021 my oncologist put me on a very low-dose Revlimid [5 mg 21 days on, 7 off cycle]+ dexamethasone [20 mgs once a week] +SMZTMP [anti-bacterial 3 times a week]. I was already on low dose aspirin once a day, which is acting as a blood thinner for me. I have a rare kidney disease, and am Stage 4 close to Stage 5 at 18% kidney function. My doctor chose to go with a very low dose in order to not attack my kidneys right away. My mm is IgM kappa type, and the numbers are slowly coming down on this low dose. We could add another medication called Ninlaro, but it would hasten kidney failure in my case.
I am on round 8 now, and as my doctor says, "it is a marathon, not a sprint".
Yes, we look fine from the outside. No hair loss. If you need support from your husband, he may also be waiting for you to honestly talk to him. Do what you can physically; it will help you feel like you are beating this!
Side effects are possible with any medication for any condition, just remember that! I do get a slight "Revlimid rash" on my lower legs, and the gastric upset, and loss of appetite [could be from the Revlimid, could be from the kidney disease]. Getting out to walk and keeping active helps with the DVT threat, besides lifting my mood when the fatigue comes. You can turn your thinking around by approaching the idea of the "down" days and fatigue as a sign that your body is responding favorably to the Revlimid. How about giving that a try?
Writing out your thoughts, your fears, will go a long way to easing your mind. Here is a link to a discussion I started on journaling. Let's get it going again, what do you say? https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/ Getting things down by using your computer into a word document, or on pen-and-paper, may clear your mind. I personally like the portability of writing things out long-hand, and seeing how my writing style changes depending on my mood. What you say is just for you, so no need for grammar, or spelling, or specific train-of-thought. I look forward to hearing about your experience with this.
Ginger