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

@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

Did the MM cause your kidney issue? I know that it often does kidney damage before diagnosed. I was and am lucky that so far I do not have that situation but was told I know have T8 damage which is affecting my spine and rib cage. I have 25 mgs of Revlimid so hoping you are right and it is working when fatigued! I have done some 2 and 3 mile walks when it was warmer. I think they are trying to get it down with 40 grams of dexamethasone also and Velcade. I was on it last year through September so hope still working. I guess I need to be more patient!!! I hope that you can have a transplant! My husband’s brother in law was a match for Bernie and all went well there. I see they now seem to do a lot of swaps so that more can receive. I seem to be okay with appetite and no rash yet. Maybe I am tolerating it okay. I am at day 10 so about halfway in my first round. I know being so anxious is bad so I will try to follow your example! The down side is I am always checking my pulse! That is actually how I was diagnosed as thought having a heart issue but MM found. Actually used my DVT to get a CT scan. Last year at this time I was blissfully unaware I had this. Happier days!!! I need to think they will come again!!!

@tml No, the kidney issue was diagnosed formally in 2015, MM wasn't until 2018. We double checked it also, to be sure MM wasn't part of the issue. Because of the MM and nature of the rare kidney disease [only 50 people in the world diagnosed with it!] I am not a candidate for transplant. Working on holding on to function as long as I can before needing to start dialysis, which I will be on rest of my life.

Patience is difficult when you are anxious, isn't it? I certainly can relate to that! You need to give the medications your doctor has chosen, a chance to work. Make sure that you are writing down questions you have for the next appointment. My doctor always looks at my notebook and asks me about anything listed there, what questions I have. He takes his time so I don't leave his office feeling like something was missed.

Happier days are ahead of you, definitely. Great way to approach it all, and life in general.
Ginger

Only 50 people! How incredible and then MM as well!!! You are amazing! Maybe they will have more options in time! That is what my sister keeps saying.

No cure yet for our MM yet. Maybe someday. Hope so! Sooner rather than later!

Guess things get bad as my meds wear off. I need to better manage this. Thanks for all the encouragement. I will try…

@tml, How are you feeling since we last spoke a few days ago? I know from my experience that day to day changes do happen. Did you contact your doctor or are you going to wait until Thursday as scheduled?

Well did the Enoxaparin injection so decided not to wait as Revlimid and Dexamethasone do increase my chances, think it is 10% and with my luck lately not worth the gamble! My husband did it although with lots of cringing! He know says he is ready to wear the stethoscope!!! Halfway through my first go round of Revlimid. I guess I need to call the Mayo Pharmacy to get the next doses shipped soon. Feeling okay today although as others have mentioned, these drugs make one tired, tired, tired! Despite the horrors of chemotherapy, am actually looking forward to having a transplant date! If only…!!!

Geez now not know!

You are off three years? Was it MM? I cannot imagine being off them but hope and pray that us possible. Was it the transplant and guess you are checked periodically?