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

Guess I could call on their voicemail line. Although think the weekend one just says go to the ER. Not sure this rises to that level. The days seem just interminable. I could do a crossword but too much sitting as is reading. Because no one can see the internal damage, the expectation is that I am somehow still the same as before. Will try to do it soon. Guess it is easy enough. How long did you have to do it? I expect all through these Revlimid cycles. Hope you have a wonderful day!!!

Good morning, @tml I’m away from my computer all day today, so I’ll going to be brief but will be back early this evening.
Because the possibility of a DVT is really bugging you and you have experience with those, I really urge to to start giving yourself the blood thinner. Watch the video again with a clear mind of, “I can do this!!” I had to give it to myself daily for many months. It’s easy peasy and almost impossible to mess up if you just watch the video.
Just find your navel, then on either side of it, grab a bunch of belly fat. I was super skrawny at the time and still managed to find a good grab. Right in the center of the squished part, put the little needle and give it a push. The needle is very thin gauge and not very long at all. It doesn’t hurt because you’re putting it in the pinched fatty tissue. It is normal to have slight bruising if you see that. So don’t panic. You’ve got this, gurl!! And that will be one stressor of the table! Keep up the compression socks too, especially if sitting for long periods. Take that med!! By doing so you’re being proactive. ☺️.

As far as the Mayo report and wondering how long you’ll be in remission. Stop worrying about what-ifs! Focus on the today, get through each day one at a time. It’s trite but true. Also, listen to your gut. I know your husband is your caregiver but if you need guidance from your doctor/team between appointments, don’t hesitate. This is you, this is your body and life. So again, be proactive. ☺️
Will you promise to give the blood thinner a try?

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!

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.

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.

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.