1. < Blood Cancers & Disorders

Multiple Myeloma: Come introduce yourself and let's talk

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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kandc317 | @kandc317 | Jan 23, 2020
In reply to @larsmayo "I just spent a half hour posting a reply and was disconnected so I’ll try again...." + (show)
@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

REPLY
lisal64 | @lisal64 | Jan 24, 2020
In reply to @mamaellie "Hi, I have mm. Was identified 1 1/2 years ago. I responded very well to velcade,..." + (show)
@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

Jump to this post

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.

REPLY
lisal64 | @lisal64 | Jan 24, 2020
In reply to @mamaellie "Hi, I have mm. Was identified 1 1/2 years ago. I responded very well to velcade,..." + (show)
@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

Jump to this post

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!

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 12, 2020

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?

REPLY
lakegirl409 | @lakegirl409 | Jun 3, 2020

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.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 3, 2020
In reply to @lakegirl409 "Here is an excellent resource for any cancer pt: NCCN (National Comprehensive Cancer Network) guidelines for..." + (show)
@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.

Jump to this post

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

REPLY
1 reply
lakegirl409 | @lakegirl409 | Jun 4, 2020
In reply to @johnbishop "Hello @lakegirl409, Welcome to Mayo Clinic Connect. I see that you wanted to post a link..." + (show)
@johnbishop

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

Jump to this post

Thanks so very much. I think the community will find it an excellent resource thats not widely known.

REPLY
lkzvlk | @lkzvlk | Jun 26, 2020
In reply to @ozys "Hi everyone on diet: My husband has such an aversion to food, I am lucky to..." + (show)
@ozys

Hi everyone on diet:
My husband has such an aversion to food, I am lucky to get him to eat at all. So since he really needs the protein and the doc's do not
want him to lose weight, our solution is a steak once a week, if I am lucky. He doesn't like a lot of the things that he used to eat. When the veggies are in for the summer, that is an option. We live in Northern Michigan and do not have the fresh gardens here, all is shipped in and not always that good. Melons are about the only thing he will eat now, so use pineapple, and (mandarins) This is a
challenge for all those on chemotherapy and dexamethosone. which really screws up the taste buds, plus my husband had a lifetime
of radiation therapy for the sinus cancer which they thought existed without a biopsy in 07. The radiation was done at a local hospital
and God Bless Mayo who we finally got to see and they corrected all the bad stuff but we're left with the very limited appetite. Such is
the life of a cancer patient who happens to get the wrong prescription.
So glad everything is working for you and losing weight is always a good thing, I just did it since I knew the caring was going to get
more intense as time goes by, only veggies, chicken and chocolate for me and I have lost 30lbs and feel great, so can relate to the
healthy eating thing.
Ozys

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I am new here but I am going though clinical study for smoldering multiple myeloma. For. protein I take ensure plus. There are plant based shakes I try different ones. I do try to eat regular food but these help when my appetite is not the best.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 26, 2020
In reply to @lkzvlk "I am new here but I am going though clinical study for smoldering multiple myeloma. For...." + (show)
@lkzvlk

I am new here but I am going though clinical study for smoldering multiple myeloma. For. protein I take ensure plus. There are plant based shakes I try different ones. I do try to eat regular food but these help when my appetite is not the best.

Jump to this post

Hi @lkzvlk, Welcome to Connect. Thank you for sharing what helps you with protein intake when your appetite is not the best. Are you able to share what clinical study you are in for smoldering multiple myeloma?

REPLY
1 reply
lkzvlk | @lkzvlk | Jun 26, 2020
In reply to @johnbishop "Hi @lkzvlk, Welcome to Connect. Thank you for sharing what helps you with protein intake when..." + (show)
@johnbishop

Hi @lkzvlk, Welcome to Connect. Thank you for sharing what helps you with protein intake when your appetite is not the best. Are you able to share what clinical study you are in for smoldering multiple myeloma?

Jump to this post

It is though the multiple myeloma association at Mayo clinic Rochester Mn and four other hospitals. To get on it (if they have openings). Cancer will come around 2 years after the smouldering starts. Average is 5 years. Same drugs used for cancer treatment. 2 year study. Follow for 10 years. Of course the have other tests and qualification. They have some info on the mayo clinic site.

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