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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@auntieoakley

@mountain009 , this page is has a lot of survivors. I will tell you, my husband was diagnosed with advanced disease in 2010, and still has a decent quality of life. Are you comfortable sharing some of your story here?

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https://youtu.be/jMy1H6m-Lk0 This 30 minute video interview gives key aspects of my 29+ myeloma survival.

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@jimbond48

https://youtu.be/jMy1H6m-Lk0 This 30 minute video interview gives key aspects of my 29+ myeloma survival.

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I absolutely loved the conversation about do we fight this thing or do the bucket list? My husband shouted out from behind me, “BOTH”.
I love your story. Thank you for sharing it. We had the honor of meeting Mike Katz at one of the myeloma seminars by the International myeloma foundation, he was a 26 or 27 years at that time. That really created a lot of hope for us at that time when we were not really given any here locally. Then we went to Mayo and found our amazing oncologist just 150 miles away. Now he is only about 70 miles. We are truly blessed.

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@auntieoakley

@mountain009 , this page is has a lot of survivors. I will tell you, my husband was diagnosed with advanced disease in 2010, and still has a decent quality of life. Are you comfortable sharing some of your story here?

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Chris ………… i dont have any of mine since i am new at MM but just anxiety………thanks. thanks for sharing your husbands story. will surely do as i progress. I hear there is no known cure for MM presently but prepare to live a good life.

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@mountain009

Chris ………… i dont have any of mine since i am new at MM but just anxiety………thanks. thanks for sharing your husbands story. will surely do as i progress. I hear there is no known cure for MM presently but prepare to live a good life.

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There are many tools in the box to treat MM, i think you can plan for some quality as well as quantity. The IMF has a whole section of great information for the newly diagnosed, I will post a link. Are you in an area with a large medical center? Have you looked up the IMF?
https://www.myeloma.org/multiple-myeloma/multiple-myeloma-diagnosis

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Member Spotlights feature interviews with fellow Mayo Clinic Connect members. It's an opportunity to learn more about members you’ve connected with and some you haven’t met yet.

I know many of you in the multiple myeloma discussions have exchanged posts with auntieoakley, so I thought you'd like to see today's featured Spotlight:
– I shall pass this way but once: Meet @auntieoakley https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/i-shall-pass-this-way-but-once-meet-auntieoakley/

Nominate a member to be featured. See more Member Spotlights here https://connect.mayoclinic.org/blog/about-connect/tab/newsfeed/

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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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Hi Larry, I too have MM now almost 2 years. Angie

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@lisal64

I was on Velcade for 4 cycles, with Rev. 14 days on/7 days off. And DeX 40 mg/week. I had terrible neuropathy in hands and feet, the 1st week, and a rash to lower legs and feet, and some high fever for like three days, in the evenings. The 2nd week, my Hematologist held the Velcade, and continued it again on the 3rd week, at the same dose, so I was told. Had less neuropathy, no rash, and no more fevers from it. Was told, my body went into shock during induction. I recieved it in very slow sub Q injections, once a week. The injection sites would be red, then turn brown, and scaly, then resolve.

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Hi Lisa I also have MM now almost 2 years. I have neuropathy in my feet no pain just numb. drives me crazy. Since no pain not much to do about it, oh well I don't feel too bad I'm on Revlimid only. Hope your doing well!! Angie

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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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Prior to diagnosis, I became increasingly fatigued for the last 12-15 months. I had also been sick more and more, for the year prior. I thought it was my age, (54), and working night shift for 9 years at a stressful job, with 12 hour shifts. In January, 2019, I had an upper respiratory infection and sinusitis. I developed left posterior rib pain, which I contributed to coughing. I seemed to never get over my illness. One seemed to bleed into the next one. One co-worker had even commented "Lisa, you are always sick". I had laughed, and told her I was just getting old.
In February, and March, 2019, I began some long overdue dental work. This included some deep cleaning-descaling of upper and lower teeth. The day after I had had this done on upper teeth, I had a rapid onset, severe head cold. This quickly developed into new onset asthma as well. Later that week, I finally went to my PCP. They ordered a chest x-ray, but no Labs, as I did not have any fever. The chest x-ray was abnormal, and suggested a chest CT. I was treated aggressively for the asthma and respiratory infection. 12 days later I had a chest CT. My lungs had cleared up from treatment, but they saw multiple lytic lesions on my thoracic and lumbar spine, suggestive of MM.
Thus, I had multiple lab work done, and was referred to a hematologist. I got my official MM diagnosis on June 20, 2019. My PCP was confounded, because my initial labs did not look that bad. My BMB, in June showed 40% MM. Skeletal study and PET, showed multiple, active lytic lesions throughout my skeleton, including my skull, spine, pelvis, hip, upper legs, and upper arms. My Transplant Hemotologist, at Mayo, agreed that I had had MM for a while, due to my heavy bone involvement. MM is not a cancer that is routinely screened for. 28 years ago, as a nursing student, my Med Surge text book had one big paragraph in it, about MM. Fatigue, in reased illnesses, and occasional sporatic pain in back, hip, ankle, were the only symptoms I had. I am a nurse, so I really though it was age, being post menopausal, working night shift, and just part of getting older.

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@ancopau1998

Hi Lisa I also have MM now almost 2 years. I have neuropathy in my feet no pain just numb. drives me crazy. Since no pain not much to do about it, oh well I don't feel too bad I'm on Revlimid only. Hope your doing well!! Angie

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@ancopau1998 Let me welcome you to Mayo Clinic Connect! I see you have posted in a couple of different conversations here today, good for you for jumping right in!

Like you, I am a multiple myeloma patient, taking Revlimid 21 days on, 7 days off. Along with a weekly dose of Dexamethasone and SMZ TMP for antibiotics. Since I also deal with a rare kidney disease [not related to the myeloma] my oncologist decided we would go very slow in treatment in order to not stress the kidneys any more than necessary. What dose do you take for the Revlimid, if I may ask?

Neuropathy is the pits, isn't it? I have it in my left foot, mostly just numb, same as you! It's hard to remember to step out with my right foot, since it is way too easy to lose my balance with a numb foot! Do you have that problem, too?

How long have you been in treatment? How were you diagnosed?
Ginger

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@lisal64

Prior to diagnosis, I became increasingly fatigued for the last 12-15 months. I had also been sick more and more, for the year prior. I thought it was my age, (54), and working night shift for 9 years at a stressful job, with 12 hour shifts. In January, 2019, I had an upper respiratory infection and sinusitis. I developed left posterior rib pain, which I contributed to coughing. I seemed to never get over my illness. One seemed to bleed into the next one. One co-worker had even commented "Lisa, you are always sick". I had laughed, and told her I was just getting old.
In February, and March, 2019, I began some long overdue dental work. This included some deep cleaning-descaling of upper and lower teeth. The day after I had had this done on upper teeth, I had a rapid onset, severe head cold. This quickly developed into new onset asthma as well. Later that week, I finally went to my PCP. They ordered a chest x-ray, but no Labs, as I did not have any fever. The chest x-ray was abnormal, and suggested a chest CT. I was treated aggressively for the asthma and respiratory infection. 12 days later I had a chest CT. My lungs had cleared up from treatment, but they saw multiple lytic lesions on my thoracic and lumbar spine, suggestive of MM.
Thus, I had multiple lab work done, and was referred to a hematologist. I got my official MM diagnosis on June 20, 2019. My PCP was confounded, because my initial labs did not look that bad. My BMB, in June showed 40% MM. Skeletal study and PET, showed multiple, active lytic lesions throughout my skeleton, including my skull, spine, pelvis, hip, upper legs, and upper arms. My Transplant Hemotologist, at Mayo, agreed that I had had MM for a while, due to my heavy bone involvement. MM is not a cancer that is routinely screened for. 28 years ago, as a nursing student, my Med Surge text book had one big paragraph in it, about MM. Fatigue, in reased illnesses, and occasional sporatic pain in back, hip, ankle, were the only symptoms I had. I am a nurse, so I really though it was age, being post menopausal, working night shift, and just part of getting older.

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@lisal64 .. Actually, yours seems to be a rather typical story. The part many folks don't realize is that MM is a branch of the cancer group, so anything under that in the string must be seen as cancer of a particular type. I have MM>Amyloidosis>Gelsolin>and others will eventually be added to the string. The Dental work gives a clue to Gelsolin (Finnish Amyloidosis), and some other stuff. Gelsolin (GSN) attacks the ACTIN web which holds together every cell of the living organism. That means you. I have about 300 other hits in my genome that I know of that are dangerous in some way. Just do not allow yourself to become comfortable with a diagnosis which leaves no room for additional issues. I would suggest you make yourself comfortable with http://www.OMIM.org, http://www.HPO.org, and other National Institutes of Health internet sites. They have a world of technical and non-technical stuff. A good genetics counselor is worth their cost. oldkarl

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@gingerw

@ancopau1998 Let me welcome you to Mayo Clinic Connect! I see you have posted in a couple of different conversations here today, good for you for jumping right in!

Like you, I am a multiple myeloma patient, taking Revlimid 21 days on, 7 days off. Along with a weekly dose of Dexamethasone and SMZ TMP for antibiotics. Since I also deal with a rare kidney disease [not related to the myeloma] my oncologist decided we would go very slow in treatment in order to not stress the kidneys any more than necessary. What dose do you take for the Revlimid, if I may ask?

Neuropathy is the pits, isn't it? I have it in my left foot, mostly just numb, same as you! It's hard to remember to step out with my right foot, since it is way too easy to lose my balance with a numb foot! Do you have that problem, too?

How long have you been in treatment? How were you diagnosed?
Ginger

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Hi Ginger, I had a total knee done in 2016 and in 2019 it got infected and they had to take out everything and had no knee for 6 months. Infection was gone and then they put the knee back in and I then had to see my Kidney Dr. and that's when he did tests and from there a BMB and WaLa Multiple Myeloma. My kidneys are bad from diabetes and stay the same GFR around 30. So on Valentines Day I will have MM for 2 years. I did have slight numb feet from diabetes but it has gotten much worse. I'm only on Revlimid now for about 9 months 5mg. Those numbers kappa Light Chain are kind of staying good. I was on the antibiotic SMZ but my Kidney Dr. wanted me off. I just seen my Oncologist today and she is going to talk to him and let me know.
As far as the neuropathy iI have it in both feet so it does not matter which foot goes in front of the other. I hope you are doing well, you sound just like me. Hope to stay in touch!! have Great Holidays!!

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@ancopau1998

Hi Ginger, I had a total knee done in 2016 and in 2019 it got infected and they had to take out everything and had no knee for 6 months. Infection was gone and then they put the knee back in and I then had to see my Kidney Dr. and that's when he did tests and from there a BMB and WaLa Multiple Myeloma. My kidneys are bad from diabetes and stay the same GFR around 30. So on Valentines Day I will have MM for 2 years. I did have slight numb feet from diabetes but it has gotten much worse. I'm only on Revlimid now for about 9 months 5mg. Those numbers kappa Light Chain are kind of staying good. I was on the antibiotic SMZ but my Kidney Dr. wanted me off. I just seen my Oncologist today and she is going to talk to him and let me know.
As far as the neuropathy iI have it in both feet so it does not matter which foot goes in front of the other. I hope you are doing well, you sound just like me. Hope to stay in touch!! have Great Holidays!!

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Hi Angie, I'd like to add my welcome. Are you currently on chemo for multiple myeloma? How does this affect your kidney care?

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