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.

@packgb19

Does anyone here know some with Multiple Myeloma?

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Hello @packgb19. I'd like to add my welcome to @jcather's. You may also notice I moved your discussion and combined it with an existing discussion of the same title. I did this so you could meet many of the other members who have posted about living with Multiple Myeloma here on Connect so they could have a chance to see your message and help answer questions and so you could also read through some of their posts as well. If you are replying by email, you can simply click on VIEW & REPLY to see where the post now is and to read through some of the previous posts.

@packgb19, if you are comfortable sharing, were you recently diagnosed with multiple myeloma? Do you have specific concerns you'd like to ask the community?

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Does anyone here know some with Multiple Myeloma?

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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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@ozys

Hi Jan52241 Yes, we were on a hugh dosage of Vitamin D every day and then the doctor wanted him to back off to 400units a day which is working
a little. We haven’t been out to Mayo for a while and I think because my hubby is an older patient and doing so well on Rev/dex with very low numbers,
they really don’t want to do more right now. We have to go locally to a hematologist until we can get over to Mayo.
I am interested in learning more about velcade? Is it given in a clinic and what it is the delivery system, how often and so forth. We may be headed
in that direction in future and we really don’t know anything about that drug?
So any help would be appreciated.
Ozys

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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.

Liked by auntieoakley

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I am glad to hear that slower is working better for you. Less side effects means being able to stay the course. Prayers are with you.

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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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@1nan

I was diagnosed with MM in 2004 yet didn't start treatment until June 2016. I was diagnosed at Mayo and followed there as well as with my local hematologist/oncologist. If you think I might be of some help, please feel free to reach out to me. Your path has been more difficult than has been mine. I an in PA.

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Hi Nancy, my mum was diagnosed SMM. Noticed that your treatment started after 12 years of diagnosis. Would you please tell me why the doctor started treatment after 12years? Thank you

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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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Mum was recently diagnosed after a compression fracture on her spine after a fall.

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@blessing19

Mum was recently diagnosed after a compression fracture on her spine after a fall.

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Thanks for sharing that information, @blessing19. How is she being treated now that she has this diagnosis?

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@hopeful33250

Thanks for sharing that information, @blessing19. How is she being treated now that she has this diagnosis?

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She does not have any treatment now. Her K/L ratio is 50. IgA is 22, upper limit is 4. Her blood calcium is borderline. BMB shows 26% of abnormal cells. No other symptoms. Local Doc wants to wait and watch. I really want to get a second opinion at Mayo. But mum can’t travel now due to fracture. We live in Australia.

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@blessing19

She does not have any treatment now. Her K/L ratio is 50. IgA is 22, upper limit is 4. Her blood calcium is borderline. BMB shows 26% of abnormal cells. No other symptoms. Local Doc wants to wait and watch. I really want to get a second opinion at Mayo. But mum can’t travel now due to fracture. We live in Australia.

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Hello @blessing19

Perhaps when she is more recovered from the fracture she can travel and get a second opinion. How old is your mom? Is your mom seeing an oncologist who specializes in this?

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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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@hopeful33250 Thank you for posting this, Theresa. I wonder if there is a transcript of this that I can order somewhere? I was diagnosed with MGUS/low-level non-Hodgkins lymphoma in November 2017. Bloodwork showed an escalation of symptoms in June this year. After repeat bone marrow and kidney biopsies, scans and more lab work, I was handed a diagnosis of smoldering multiple myeloma on Nov 15, about 5 weeks ago. I am on the wait-and-see protocol, especially since there is an underlying ultra-rare kidney disease that we are dealing with also. Each day is a gift, and i would love to find out where my case is on the spectrum for proclivity to advance to active myeloma.
Ginger

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@blessing19

She does not have any treatment now. Her K/L ratio is 50. IgA is 22, upper limit is 4. Her blood calcium is borderline. BMB shows 26% of abnormal cells. No other symptoms. Local Doc wants to wait and watch. I really want to get a second opinion at Mayo. But mum can’t travel now due to fracture. We live in Australia.

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Even if she can’t travel to Mayo, I would encourage you to get a second opinion, did they do a scan to see if this is causing holes in her bones. If she was diagnosed because of a fracture, this would be a concern. If there is bone damage occurring this would indicate active disease.

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@blessing19

Hi Nancy, my mum was diagnosed SMM. Noticed that your treatment started after 12 years of diagnosis. Would you please tell me why the doctor started treatment after 12years? Thank you

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Hi! First, I hope you are having a happy time of celebrating the season holiday. To us it is Merry Christmas.
As for onset of treatment, the every 3 month check of labs made the decision. My Mayo doctor said that when the M Spike reached 3.2 he would start treatment. Over the years I just dealt with whatever health issues surfaced and didn't worry about MM. My position was that I refused to be held hostage by fear, especially fear of something that might never happen. Routine was get labs, see local oncologist/hematoligist, put MM on "back burner" and keep living life. We made annual trips to Mayo, our "vacations"! When benchmark was hit my response was, "Ok, let's do this". And my 2 doctors started working together. So glad I didn't waste the beautiful 12 years with worry. Does this help?

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@gingerw

@hopeful33250 Thank you for posting this, Theresa. I wonder if there is a transcript of this that I can order somewhere? I was diagnosed with MGUS/low-level non-Hodgkins lymphoma in November 2017. Bloodwork showed an escalation of symptoms in June this year. After repeat bone marrow and kidney biopsies, scans and more lab work, I was handed a diagnosis of smoldering multiple myeloma on Nov 15, about 5 weeks ago. I am on the wait-and-see protocol, especially since there is an underlying ultra-rare kidney disease that we are dealing with also. Each day is a gift, and i would love to find out where my case is on the spectrum for proclivity to advance to active myeloma.
Ginger

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I can certainly understand your wanting to know where you are on the spectrum for this to advance to active myeloma, @gingerw. Regarding a transcript of this video, let's ask @colleenyoung if that is possible and how you would get a copy of it.

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