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.

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@1nan

Hi again. I started my first treatment for Kappa MM in June 2016 at age 75. Since then I have been on 5 more protocols. As they stopped being effective, as all eventually do, my local doctor consulted with Mayo doctor and we moved forward. There are so many new treatments for blood cancers that there is reason for high hopes for all of us! You may laugh but I love change. Every change was welcome. Bottom line, all have helped much in the way of managing a chronic disease. You ask if I am in remission. The answer is yes, but the way I got there was pretty much divine. This fall I had 2 major emergency surgeries in 8 days. On learning what was ahead I asked God to take care of all things cancer because I would have my hands full with all things spinal and neurological. Two months later, after no treatment and unimaginable stress, it was time to get labs and restart treatments. We got a Christmas miracle. Against all things reasonable I was in full remission. No myeloma cells in blood or urine. So now we are back to the Mayo plan to ease into maintenance. Please know that there is always a treatment option available these days. Is your mom understanding MM in the way you are, sharing in conversation together what you learn?
Nancy

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@1nan This is such a wonderfully uplifting post to read! Your spirit comes through in your words, along with the joy. Blessings to you!
Ginger

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I suggest a different doctor. Get to the MAYO Clinic, or MDAnderson Houston. There's not that many centers that can do a stem cell transplant and they are usually connected to a university medical center. My husband had a stem cell transplant to gain maybe 10 years of life. The next step is a T Cell procedure that is just this year approved by FDA. Don't mess around with MM. The difference between our original cancer doctor and MDAnderson is like night and day. Social services helped us with discounted apt. rates, cash and emotional support. We were there 2 months. He's 2 years out and so far so good. Blood draws monthly, bone shot in stomach monthly but he'll do that much. Prayers.

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@gingerw

@blessing19 I see there is a ;ink to send them an email. Due to the time difference, you could send them an email and ask if they can help you. There is also a phone number, but I imagine the cost of a phone call right now might be quite a bit. You might also check with Mayo if they have any Mayo Clinic trained doctors now practicing in your corner of the world. That is how i was able to be connected with Mayo Clinic, as I live in a rural area. I travel 115 miles each way to my oncologist, who came from Mayo Clinic!
Ginger

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Thank you for the information! I will send an email to see if there is any Aussie doctor who is trained in Mayo. I also checked that only 4 myeloma drugs are covered by the Aussie Medicare. There are more options in US. Don’t know if it will cost a lot for overseas patients with no insurance.

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@1nan

Hi again. I started my first treatment for Kappa MM in June 2016 at age 75. Since then I have been on 5 more protocols. As they stopped being effective, as all eventually do, my local doctor consulted with Mayo doctor and we moved forward. There are so many new treatments for blood cancers that there is reason for high hopes for all of us! You may laugh but I love change. Every change was welcome. Bottom line, all have helped much in the way of managing a chronic disease. You ask if I am in remission. The answer is yes, but the way I got there was pretty much divine. This fall I had 2 major emergency surgeries in 8 days. On learning what was ahead I asked God to take care of all things cancer because I would have my hands full with all things spinal and neurological. Two months later, after no treatment and unimaginable stress, it was time to get labs and restart treatments. We got a Christmas miracle. Against all things reasonable I was in full remission. No myeloma cells in blood or urine. So now we are back to the Mayo plan to ease into maintenance. Please know that there is always a treatment option available these days. Is your mom understanding MM in the way you are, sharing in conversation together what you learn?
Nancy

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Happy new year Nancy! And thank you for your kind reply. Sorry to hear that you’ve gone through 2 surgeries and hope you are recovering well. Are these injuries caused by myeloma?
I have done some research and noted that there were 7 medicines used to treat myeloma. Only 4 of them are available here. They are pomalyst, Revlimid, Velcade and kyprolis. Don’t seem like a lot of options there, considering that the docs normally use 3 drugs together?
Also was curious how you went into full remission without treatment? Does your doctor know why?
Hope your myeloma stay in full remission for a long long time.

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@gmajudy

I suggest a different doctor. Get to the MAYO Clinic, or MDAnderson Houston. There's not that many centers that can do a stem cell transplant and they are usually connected to a university medical center. My husband had a stem cell transplant to gain maybe 10 years of life. The next step is a T Cell procedure that is just this year approved by FDA. Don't mess around with MM. The difference between our original cancer doctor and MDAnderson is like night and day. Social services helped us with discounted apt. rates, cash and emotional support. We were there 2 months. He's 2 years out and so far so good. Blood draws monthly, bone shot in stomach monthly but he'll do that much. Prayers.

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I know that there is an age limit to do an SCT? Is it 70 in US? Some patients opt out for SCT. I wonder whether it is very physically challenging to go through it? Like the risks of infection, low blood counts during the process.
Would you know if myeloma specialists from MD Anderson sees patients overseas? Ideally via teleconference?
Prayers for your husband.

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@hopeful33250

Hello All

A Youtube video was recently released by Mayo Clinic regarding Multiple Myeloma and the disease progression. I was wondering if any of you had any early symptoms of this disease before the diagnosis came about. After looking at this video will you share your experience of being diagnosed?

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Thanks for sharing the video. The doc mentioned 3 lab tests are used to identify high risk SMM. I wonder what are the 3 tests?

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@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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Hello @greyhoundlady, Welcome to Mayo Clinic Connect. Thank you for sharing your neuropathy story in the Member Neuropathy Journey Stories: What's Yours? discussion – https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/?pg=1#comment-394767. I reponded in the Multiple Myeloma discussion here so that you could meet other members discussing Myeloma. You may also be interested in other neuropathy discussions in the Neuropathy group: https://connect.mayoclinic.org/group/neuropathy/

Have you made any lifestyle changes that have helped your symptoms?

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Here is an excellent resource for any cancer pt: NCCN (National Comprehensive Cancer Network) guidelines for patients
You can google it since I am unable to add the link on this site.

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@lakegirl409

Here is an excellent resource for any cancer pt: NCCN (National Comprehensive Cancer Network) guidelines for patients
You can google it since I am unable to add the link on this site.

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Hello @lakegirl409, Welcome to Mayo Clinic Connect. I see that you wanted to post a link to provide references to your post above. New members cannot post web links for a few days. We do this to protect the community from spammers, i.e., people who join only to post links to sell something, etc. Clearly the link you wished to share is a helpful and useful link for the community. Please allow me to post the link for you. You will be able to post links in a few days.

NCCN (National Comprehensive Cancer Network) Guidelines for Patients: https://www.nccn.org/patients/guidelines/cancers.aspx

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