Want to talk about Multiple Myeloma: Anyone else?

Sadly when they said I would have a shorter than average remission, I asked why and she said genetic. I thought I can’t do anything about that. Now I know the doctor meant the myeloma DNA not mine. Again I misunderstood. Seeing that DNA and what genes were detected and what is missing was a shock. No wonder it is so difficult to fight!

Wow, Wyom1998, your transplant is just around the corner.

I see you've downloaded @jimbond48's book to your Kindle. What's key takeaway or tip that really resonated for you? Any "a-ha" moments?

Have you also met @loribmt? You might appreciate this related discussion:
- My Bone Marrow Transplant (BMT/SCT) story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

What questions or thoughts do you have as you prepare for the upcoming transplant?

Day 5 after transplant. I chose to go right from collection to transplant,
I'm Tired, bored, nauseous, achy, count on neutrils still 1,300.
I never thought I would want an empty account at -0- in my life.
I really want to start up the other side.

Good morning, @wyom1998 Don’t despair! I know this is a crumby period being only 5 days after transplant. But big, positive changes are coming for you.

In the next week you’ll continue to be in a very low period and not feeling your perkiest. It’s from the conditioning chemo. Remember, it had to clean out your bone marrow to make a squeaky clean home for the newly replanted stem cells collected from you last week. That will cause your body to become neutropenic and at some point in the next week your blood numbers will plummet. You will get your -0- account balance. 🙃

You will continue to be tired, bored, nauseous and achy but then the magic happens! Engraftment. Your numbers will pick up again as your marrow starts producing new blood cells. The white blood cells will rush to the rescue and have you feeling better in no time!

How long will you have to remain near the clinic after transplant?

The estimated stay is 2 weeks. At 64 stage 1 I am praying my aggressive agreement to my care plan will yield positive results.

Oh my gosh, you look great! Look at that happy smile!! Haha no way was I looking that perky 5 days after transplant. You look amazing!

I know it doesn’t feel like it right now but this was a very positive step you took for a longer, healthier life. By the end of your two weeks you’ll be feeling much better, bruises will be gone and energy will slowing make a return. Lucky duck! I had to stay 4 months!

Are you close to the clinic with your lodging? Do you have to return daily for bloodwork?

Oh, dang! Hope you have an ereader or project to keep you busy. I took the shuttle from Minneapolis/St. Paul to rochester. Never knew it would be a long ride! Lots of corn fields. Told a fellow passenger that I thought we were being kidnapped, much to his amusement.

Relax tonight, have your questions handy, something to keep you busy during downtime [even if it is a restful shuteye], be sure you have a couple of layers to change out of if your body temp need coddling. And give your husband a big hug for being there for you, let him know how much this means to you!
Ginger

Should have had a bone marrow right after remission. The disease has progressed way more than even when first diagnosed just in 5 months. Not on the right medication. Ratio has gone from 3 to 5 to 9 to 15 and now 22. This should never have happened. Said not a candidate for bone marrow where I go. Mayo says should have one but I now have to get back to remission I guess. So depressed I cannot bear it. Says referring me back home but to whom? Same players I was going to that denied me a bone marrow. Says will do at Mayo but every day I am losing time znd Hope,

Hi @tml I’m so sorry you’ve gotten this unexpected news. But please, try to remain positive because this doesn’t mean the worst outcome. You have the opportunity to start treatment to get this in remission again, and then have that bone arrow transplant.
I know you’re scared and feeling hopeless. I want you read these words that my transplant nurse whispered in my ear one night that helped bolster me forward. “The only thing stronger than fear is hope!” You need to carry that with you right now because it’s time to be calm and to make good decisions.

Will you tell me more about what you learned at Mayo? Could you have your treatment done at Mayo for the MM? If it’s not practical for you and you need to return home, just so you know, Mayo worked closely with my hematologist/oncologist back home. They made sure I was on the right treatment for my AML and then I went back to Mayo-Rochester for my bone marrow transplant. Will you have the opportunity to speak with someone at Mayo today about treatment options?