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

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.

@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

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 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

I need to but Darzalex worked so well that if the spot on my rib had been discovered I would not be in this situation and yet I need to let that go. I guess on 4/7 I will know a little. Guess either up, down or the same!!! Hoping for down but guess will have to face whatever it i. Was not going to look at my latest but for some reason gave me a printout with it all and the nurse said he added the ones from the week before! Nice of him but…

I know dialysis is very hard! Another relative donated a kidney so she was able to get off but she did not have all the other complications that you had!!! Bile duct, liver! What a miracle!!!!

Never though of doing a journal! Typically me. I now am wondering if my sister in law would have gotten better care or a better outcome at Mayo. Second guessing again!!!

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!!!

@tml, You could call but not sure that a voice mail will be answered until tomorrow. However, you could call to find out if someone is covering on the weekend and a phone number is provided. Peace of mind is certainly worth the call.
I have not had the meds and the side effects you describe, and I am happy that Lori, who has already traveled this journey, is offering the support from her experience.
I know that you are worried about today, tomorrow, and the next days. When I was at endstage liver failure, possible bile duct cancer, and on dialysis for acute kidney failure, my survival secret was that I absolutely had to live for the moment. That could be a brief moment, an hour, or a day. I dared not think about tomorrow and all the things that might be ahead, and made a decision to focus on one positive thing - anything - each day. It became a blessing hunt , and when I began to look for blessings, I found that I could block out some of the negativity and doubts that haunted me. I even began to keep a list. On one dark dreary day, I celebrated a tiny ray of sunshine that popped thru the clouds and it uplifted my mood. Even the the shadows on the ceiling as the wind blew the tree branches in the beam of the street light became my blessing on sleepless nights because I was able to be like a child and let my imagination go wild with the shapes and rhythm of the shadows. Sometimes it even put me to sleep!
I'm getting off topic, But i want you to know that you re not alone. Have you considered beginning a journal that includes blessings that you experience?
I also would encourage you to call your doctor in the morning of you don't get in touch with someone today. He might want to see you before Thursday.
Be easy on yourself. If there is a couch in a sunny window curl up for a nap.
Hugs.

At this point you can’t focus on side effects of these powerful drugs. The meds have to be stronger than the cancer. The list of drugs I’ve been on were staggering and potentially lethal. But my husband and I joked about “Better living through chemistry” (my husband is a chemical engineer). I have a newfound respect for big pharma. Without the science, research and drugs I wouldn’t be here. I’m now cancer free and off all my meds. Though you never could have convinced me 3 years ago that I’d ever feel normal again. Will you give the drugs a chance?