Want to talk about Multiple Myeloma: Anyone else?

Posted by Frazer 1 @frazer1, Apr 11, 2012

Asking anyone who is going thru this experience to share any pro's or con's of this disease. As of now I'm in MGUS, will find our next week if it has progress to Smoldering Myeloma.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | Mar 23, 2022

In reply to @lisal64 "They have Mayo in Arizona. I see an MM specialist at Mayo, Jacksonville, FL. It is..." + (show)

Hi Lisa! Been a while since we’ve had a chance to catch up. Wow, you’re coming up on your 2 year check already? Congratulations! I’ll be on my 3rd birthday in June. We’ll celebrate together…with my imaginary glass of champagne. Still no alcohol for me but I have lovely bottle of Welch’s grape juice in the fridge. 😅

I was happy to see you here in the MM group and just referred a newly diagnosed member (@tml ) to you, who is getting started with Revlimid and might be having a SCT coming up. Since I didn’t have an auto transplant, maybe you can give her a little more information about what she may expect in the future.
How are your grandkids and that little puppy who is now fully grown?

lisal64 | @lisal64 | Mar 23, 2022

In reply to @islander123 "I have been diagnosed with MM stage 1. I am considering treatment at Mayo Clinic. The..." + (show)

They have Mayo in Arizona. I see an MM specialist at Mayo, Jacksonville, FL. It is a 2 1/2 hour drive from our home in South Georgia. We even drove it for Chemo, once a week (3 wk on/1 wk off), for 4 months. I had my SCT there, too. They are all wonderful, at Mayo. They have great organization, and communicatin skills down pat! And the professionalism can't be beat, in my opinion. It was worth every mile. I go back in June for my 2 year re-check.

Lori, Volunteer Mentor | @loribmt | Mar 22, 2022

In reply to @tml "Well we did the injection so guess that is ever day now. I have a bit..." + (show)

Good morning. I happened to see the post about your injection in the transplant group first and responded there. So here’s the link to that one.☺️ I’m happy you took the plunge! Yay!! https://connect.mayoclinic.org/comment/691878/
OMG you’re not a wimp!! This is a lot to go through. You’ll get to be a pro about blood work soon enough. You can always ask me. 🙃

tml | @tml | Mar 22, 2022

In reply to @loribmt "I am in remission from AML. ☺️ Coming up on 3 years post allogenic transplant. (An..." + (show)

Well we did the injection so guess that is ever day now. I have a bit more pinchable skin than you so seemed to go okay although did sting a bit. Certainly better than having a DVT and/or PE!!! Halfway through my first Revlimid cycle so guess will know in early April although will be afraid to look at the results!!! I am such a wimp! Thanks for your encouragement. All the posts are so helpful in understanding how to get the right care and help oneself!!!

tml | @tml | Mar 10, 2022

In reply to @gingerw "@tml What milligram level of Revlimid are you being prescribed? Also, I forgot which form of..." + (show)

I have IgG Kappa and will be on 25 grams.
I have a q deletion that seems to make it more difficult to stay in remission.

tml | @tml | Mar 10, 2022

In reply to @loribmt "I am in remission from AML. ☺️ Coming up on 3 years post allogenic transplant. (An..." + (show)

Sorry thought I had done that but must have typed in the one below!!!

tml | @tml | Mar 10, 2022

In reply to @loribmt "I am in remission from AML. ☺️ Coming up on 3 years post allogenic transplant. (An..." + (show)

Thanks so much. I hope I can get back to remission. I need to focus on that but always find my mind trying to go back and change things! Thinking having the Revlimid will help if it works quickly. That sounds wonderful but I worry I will not be able to have a transplant. My local provider said I was in remission but not a candidate for it. Mayo said I could but the longer it takes to get to remission the harder it will be. My sister warned me it would not be easy because of the chemo and I know it does not always result in remission but I sure want that chance. I worry that the damage I now have plus the second round of chemo will add to making it harder. It was 5 months to get to remission last year. Worry it will take way longer now.

Ginger, Volunteer Mentor | @gingerw | Mar 10, 2022

In reply to @tml "Looks like coming tomorrow by 12. Mayo’s pharmacy is great! Hope begins to work fast as..." + (show)

@tml What milligram level of Revlimid are you being prescribed? Also, I forgot which form of multiple myeloma you have? I have IgM Kappa.
Ginger

Lori, Volunteer Mentor | @loribmt | Mar 10, 2022

In reply to @tml "Yes I will! Cannot wait! I guess you are in remission?" + (show)

I am in remission from AML. ☺️ Coming up on 3 years post allogenic transplant. (An unrelated donor). My doctor said that AML seldom relapses past 22 months with a successful transplant and I’m at 33 so we’re all pretty optimistic.
That’s why I’m so honored to be able to help and offer encouragement to anyone else who might be facing a blood cancer and a stem cell transplant. Every day is a gift and it’s worth fighting for. So hang in there! I’ll be with here for you every step of the way.
May I ask you a little favor? I don’t want to miss your messages to me, so when you respond to one of my replies, please tap the reply button right under my posting then I’ll get a notice directly. Or, you can simply type @loribmt in any message and I’ll get a message. That works for anyone you want to reply to in their message.
Again, I’m so happy that your new medication will arrive tomorrow! Hope it a bottle, right? 🙂

tml | @tml | Mar 10, 2022

Yes I will! Cannot wait! I guess you are in remission?

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