Multiple Myeloma

Posted by MZ @mehz4802, Jul 27, 2016

I was diagnosed after a bone marrow biopsy as having indolent myeloma 4 years ago. My oncologist says I now have multiple myeloma. I have not been receiving any kind of treatment, just blood tests every 4 mo. followed up by an office visit. The doctor prescribed some iron pills. A friend of mine also has multiple myeloma. She started taking calcium pills and her doctor is seeing some good results. I started taking calcium/vitamin D3 supplements. My primary care doctor diagnosed me with osteopenia (as well as high blood pressure and high cholesterol). My oncologist says that as long as he’s not worried, I should not be worried. But I keep feeling like there must be something that I can do to improve my situation.

@larsmayo

I just spent a half hour posting a reply and was disconnected so I’ll try again. I have MM stage 3. I had just climbed to the base amp of Mt. Everest, 17,600 ft. in September 2018. I was slicing up logs on Nov.1st, 2018 and heard a couple vertebrae pop. I saw a chiropractor who fractured 3 ribs. On Dec. 21st 2018 I was put in the hospital for Kidney Failure only functioning at 6%. Clogged up with the Calcium that my cancer had eaten lesions in my vertebrae. I had a Blood transfusion and Dialysis. I could only walk with a walker. I did Dialysis 3 times a week for all of Jan. 2019. I was lucky that my Kidneys began working again! I then went through 3 cycles of Chemo Therapy. The first couple of cycles were Velcade, Cytoxan, and Dexamethasone. I was lucky to get a grant from the Revlimid Company and did a cycle of; Carfilzameb, Revlimid and Dexamethasone. Aurora could only get the bone cancer to about 40%. By the way, the Celgene Co. charges $18,000 a month for 21pills. Three weeks on of one Revlimid pill and a week off. Lucky I got a year grant! I’ve had 12 fractures in my upper spine an shrunk about 2 inches. The fractures started healing up. I then switched to Froedtert Hospital, Milwaukee, to get a second opinion. They told me about Kyphoplasty and Vertebroplasty. I had the cement put in the L2 vertebrae and immediately got off the Oxycodone every 3 hours. Still on the 125mcg/hr Fentanyl patches. I had a Stem Cell Transplant in July 2019. Got out in 2 weeks and a day. Shortest stay possible for an inpatient Transplant. A rough recovery especially for the first weeks. I still pushed my self to walk a mile of laps every day except for the first 2 days. Now I’m down to only 5% cancer and they give me about 3 more years. I’ve had gene deletions of 17 P before the Stem Cell Transplant. After, they’re seeing 1Q gene deletions. I’ve gained back 5 lbs. of the 20 I lost. Now I’m about 140 lbs and trying to get some muscle back. Thank god for the technology and drugs available. I’m ready to take a vacation! Larry

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Larry, my wife was diagnosed with MM in Sept 2019. She has experienced much the same as you with several vertebral fractures one that was repaired with kyphoplasty. She also is currently working through 4 cycles of velcade cytoxan and dexamethasone. Was there a medical reason for the protocol change?
Our next door neighbor who is a very private person revealed she also has MM that was diagnosed 5 years ago. We've been neighbors for 25 years. Hard to believe there are 2 MMers that close. MM doesn't seem that rare when you consider this fact unless there is an environmental factor involved. Very odd.
Anyway, she was on Revlimid. It worked well for her and she's currently only doing maintenance treatments. I'm interested if my wife might also be better served with this product? Any insight is appreciated.
Thanks

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@mamaellie

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

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Thank you for posting. I am reading older posts. I, too, have paper thin skin on my hands and wrists. I am curious about your adrenal insufficiency. I had a CT of my chest, prior to MM diagnosis in March, 2019. It showed "calcification in one of my adrenal glands, at that time. I have asked my primary doctor, local oncologist, about this several times. Local oncologist only said "it is not cancer". If you don't mind sharing, what are your symptoms of adrenal insufficiency? I have fatique, low motivation, low stamina. It takes me so long to just get anything done some days. I am so sorry you have all of this with MM, too! Best wishes to you.

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@mamaellie

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

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I would like to add that I have had bone lesion progression, after 4 rounds RVD. and am being treated at Mayo Clinic, Jacksonville, now. I am on 2nd 28 day cycle with KPD. I am seeing a MM Specialist at Mayo. Plan is for ASCT, if and when MM is down., and I qualify. We have several similar side effects, it seems. I have Kappa light chain myeloma, have had very little M spike, KLC/Kappa-Lamda ratios. BMB was 40% plasma in June, 2019 and 10% in October, 2019. I worry that my bone lesions are from something else, but have been assured that I have MM. I just realized your post was from 2016. I hope all is well with you!

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