Multiple Myeloma: Come introduce yourself and let's talk

You can definitely take part in both groups @ozys.

Thanks for joining the MM group @user_ch3a1e07f. We look forward to getting to know more about you. Would you like to start by telling the group the type of treatment and follow-up you’ve had. What conerns do you have and what gives you joy?

Our trips to Mayo are coordinated by a very accommodating Myeloma doctor’s office at Mayo, Dr. John Lust to be exact
always works with me and my schedule to work out a best time for us to make the trip. It is about the patient and their
needs at Mayo, not the other way around. One does have a choice about their health care, a rarity in today’s system.

Hi,

I have mm. Was identified 1 1/2 years ago. I responded very well to velcade, dex and rev, And although I have been in near remission, lambda 24 and kappa ,61 and no presence of monoclonal light chains in urine for 10 months, the progression of lesions has not stopped. I have had numerous side effects. : adrenal gland insufficiency, skin that is like tissue paper requiring visits to the Wound Clinic , constant discomfort and pain, more lesions requiring radiation,etc.
My motto is “this cancer is one that keeps on giving”.

I live in a MAJOR city and am not shy about changing docs. I am ‘fairly informed’ and belong to a marvelous support group. I am sorry I sound like Debbie Downer, but this cancer is a true pain BUT I am alive and a survivor.

That’s all folks

I want to stay in the Multiple Myeloma Group also, need to hear how other patients are doing and anything new that they might be experiencing. The caregiver page is alright,
also, ozys

Thank you Colleen for moving me to the Multiple Myeloma group.

Welcome to Connect @ozys. You’ll notice that I moved your message to this forum where other members are talking about living with multiple myeloma. I think @totopeg @mehz4802 @scmsable @user_ch3a1e07f @mamaellie @larryfairtax and @jan52241 will all appreciate hearing about your and your husband’s journey living with MM 10 years and counting.

Like Scott, I also invite you to check out the Caregivers group here on Connect.

How does the coordination of care work in between trips to Mayo?

Hello @ozys. I am Scott and I, too, am a caregiver. My spouse had brain cancer and the doctors at Mayo, Rochester were awesome for her too. Always listening and adjusting for over 14 years.

As a fellow caregiver you might find the discussion group here on Connect for caregivers of interest. You can click here to see the topics currently being discussed and you can always start a new one if you want.

You can just click this link https://connect.mayoclinic.org/group/caregivers/?tab=discussions

Peace and strength!

I am a caregiver to my husband who was diagnosed with Multiple Myeloma 10 years ago. We made the trip to Mayo Clinic in Rochester, Minn.
and got expert advice on how to proceed. He started on Revlimid in March of 08, 11 months later he went into remission for four years and again, in
2013 we went on Revlimid again and his numbers have stayed almost normal for three years. With so many new drugs coming on line, there will be
other drugs available when he needs them. Yes, it is possible to live with this disease and do fairly well. It is a long haul and if he needs an update
in medication, we will make another trip to Rochester and go on from there for a long time. Always get a second opinion if you have this malady.

Thanks for the message and info @totopeg. It reminds me that we haven’t heard from @mehz4802 and @jan52241 for a while. How are you doing?