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MZ (@mehz4802)

Multiple Myeloma

Blood Cancers & Disorders | Last Active: Dec 28, 2020 | Replies (165)

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@1nan

This is my first post, and see that I can identify with a number of you who are both caretaker and patient. I was diagnosed with MM 12 years ago at Mayo Clinic, after being followed by our local cancer treatment center for a year with MGUS. My local hematologist works with my Mayo doctor, and actually called Mayo as soon as my labs indicated a need for treatment this past spring before he called me. On Dex, Revlimid and Velcade with Valacyclovir twice a day since June, I am very close to remission already. Annual trips to Mayo and local frequent visits over the years have included MRIs, Skeletal Surveys, and labs every 3-4 months. In treatment, I have significant fatigue, partly in response to anemia. Appetite is non-existent, and eating is functional, and memory is giving us reason to laugh a lot. (“I want to tell you something.” “What’s that?” “I don’t know.”) If I get hungry for something, I had better have it fast, because in very short order I could be totally turned off by even the thought of it. And nothing tastes like “normal” to me, if it even has any taste at all. But I have never had one moment of fear or worry, have had no doubt that I will beat this, and know God has this in His hands. The 12 years “waiting” for a need for treatment gave me many opportunities for service through our church, and I have no doubt there are more opportunities waiting for easier days. We will somehow make it to Mayo in January (from PA) and trust safe travels. My spinal surgeries and current lumbar collapse/bulging disks, and crushed nerves seem to be a greater concern to us at this time. Monthly Zometa will hopefully get bone to the point that surgery will be possible this coming year. Meanwhile, Dex is a great help with managing pain levels, so all is good. I can only wish all of you could experience the peace my husband and I have had all this time.

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Replies to "This is my first post, and see that I can identify with a number of you..."

Hello 1nan, I too have MM. I was diagnosed with MGUS in 2007 and also did the wait and watch thing until 07/2013 when I
needed to start treatment. You’re fortunate to be doing so well with Velcade, dex and Rev. I didn’t do well with Velcade or Rev.
I then went to Kyprolis and now I’m on Daratumumab, dex and Pomalyst. It’s going well so I’m grateful. I too, have found great
hope and peace in my relationship with God. I can’t imagine going through this without Him.
Thanks for sharing and I wish you the best!
Linda

Thank you, Linda. Keeping the “wait and watch” on the back burner of my mind all those years allowed me to live life and ignore whatever the future held in store. Nothing is worth the worry that would have kept me from living a wonderful life. Good wishes for continued treatment success.
Nancy

Hello1nan:
Your journey is like my husbands in the fact that he had a plasmacytoma first and then went into full blown MM. He has survived for
10 years with rev/dex off and on over the years. We just don’t think about him having cancer and do the best we can to go on with
life. He has been in remission once and is near remission again, so each day he enjoys his time with family, Doesn’t want to eat
and is very tired all the time, sleeps a lot but is in good humor except on dex day, then watch out!!! We don’t do a lot of worrying
and go about our daily routine, even went out to eat with family last night. Don’t do a lot of meds either. Only a pain med every day
to ease back pain and once that was regulated, now doing much better. Good luck and you will live another 12 years to do God’s
work.
Ozys

It sounds like your husband has had a rough road, but with you at his side, he is blessed. As for another 12 years, since I had my 75th birthday last summer, I’ll consider that a good life! Believe me, life is good, and I appreciate all I receive. Thank you for recognizing what is so important to me. I have been given many gifts and skills and life experiences over the years, and it is wonderful to have opportunity to use it all.
Nancy