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Multiple Myeloma: Come introduce yourself and let's talk
Blood Cancers & Disorders | Last Active: Feb 13 1:18pm | Replies (220)Comment receiving replies
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.
Replies to "I am a caregiver to my husband who was diagnosed with Multiple Myeloma 10 years ago...."
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?
Thank you Colleen for moving me to the Multiple Myeloma group.
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.
Blessings on your husbands remission!How old was your husband when he was diagnosed? Did he have bone/kidney issues?
I was diagnosed with stage 3 myeloma 31 years ago and visited Mayo 3 times for 2nd opinions between home town treatments. Our lessons learned and strategies are in 4 minute YouTube videos. Search 30 year myeloma survivor patient 007 to view.
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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!