My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Kidney 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…

Hi @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?

@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.

Am 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.

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.

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?

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 had one as part of my treatment for ITP (autoimmune disease that attacks blood platelets) and cold agglutin disease. It was done as outpatient surgery. I insisted on being unconscious and never felt a thing and had no after pain or other issues. The biopsy confirmed the initial diagnosis and helped my hematologist determine a plan of treatment.

Having all your other blood numbers looking good is a plus. You’re going into this under favorable conditions. You sound very health conscious so I can really relate to how it feels to have the rug pulled out from under you with this unexpected MM diagnosis. We’ve done everything to stay healthy and yet our immune system let us down. The good news is, we get a chance at a reboot. 🙂

So I hope you get some positive feedback from the doctor today. Be calm and don’t bring up the past failed treatment. Rehashing the past just eats up precious appointment time. Organize your thoughts on paper so that you can click right down that list. I think now that you have a week of treatment behind you and better emotionally, you’ll be able to have a more confident chat with this doctor.
Ok, right now though, my big question is why are you missing and not eating the Talenti Gelato???

Now I read those Atkins treats not so healthy. Well guess should have read before saw in grocery! Oh well dark chocolate is better and only have a few so…alway something! So miss my Talenti Gelato! Sigh!