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.

I can’t speak to whether your doctor is right or not, but it sounds like you are the type of person who requires more information and you should have access to it. Sounds like a second opinion, preferable at a world class clinic, would help put your mind at ease or let you know how you should be managing this.

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Thank you.

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@mehz4802

Thank you.

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I forgot to include this link to the US News site for finding the best hospital near you. I don’t think that it ranks individual doctors but it does give their background and associations. Might help.

http://health.usnews.com/best-hospitals/rankings/cancer

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Hi @mehz4802 – your doctor should have discussed the stage of your MM with you. If not, that’s information you need and that you’ll want to ask questions about. @johnwburns has a wonderful point that a 2nd opinion is wise in the case of cancer to not only learn more information and get an accurate diagnosis, but also for peace of mind.

Mayo Clinic offers a guide to Multiple Myeloma that has specific questions to ask, which may be helpful: http://www.mayoclinic.org/diseases-conditions/multiple-myeloma/basics/preparing-for-your-appointment/con-20026607

The Multiple Myeloma Research Foundation may be another source for information: https://www.themmrf.org

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Right now, I’m doing 3 month blood panels. I have to go and have a ct scan of my humerus and have another bone marrow aspiration. The biggest issue I am having right now is trying to help my husband understand that myeloma is a cancer and even though I still feel pretty normal and don’t show and outward signs of illness he still doesn’t get it. I recently had a severe respiratory infection and ended up in the ER. The doctor that treated me was smart. Blood was taken but my white count was in the normal range. She looked at my records and saw smoldering myeloma and treated me with a strong course of antibiotics. My question is, if I do have an infection, are my white blood cells going to rise to attack the infection?

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@mehz4802 – welcome to Connect. In addition to @johnwburns @caretothepeople and @jan52241, I’d like to bring a few more Connect members to this discussion about multiple myeloma. @scmsable @user_ch3a1e07f @mamaellie @totopeg @larryfairtax can you share with MZ what type of treatment and follow-up you’ve had?

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I am a three year survivor of Multiple Myeloma. I receive injections of Velcade every 2 weeks, with 8 mg of Dexamethasone. Velcade is my second chemo drug. Good news is, there is always a new drug! Some ups and downs during this 3 year period. We were going to try a bone marrow transplant, but that did not go well for me. Right now my numbers look good, so I have a lot to be thankful for. I have wonderful doctors and family support which is key. If your doc is not listening to you, find one who will.

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Thanks for the message and info @totopeg. It reminds me that we haven’t heard from @mehz4802 and @jan52241 for a while. How are you doing?

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I am a caregiver to my husband who was diagnosed with Multiple Myeloma 10 years ago. We made the trip to Mayo Clinic in Rochester, Minn.
and got expert advice on how to proceed. He started on Revlimid in March of 08, 11 months later he went into remission for four years and again, in
2013 we went on Revlimid again and his numbers have stayed almost normal for three years. With so many new drugs coming on line, there will be
other drugs available when he needs them. Yes, it is possible to live with this disease and do fairly well. It is a long haul and if he needs an update
in medication, we will make another trip to Rochester and go on from there for a long time. Always get a second opinion if you have this malady.

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@ozys

I am a caregiver to my husband who was diagnosed with Multiple Myeloma 10 years ago. We made the trip to Mayo Clinic in Rochester, Minn.
and got expert advice on how to proceed. He started on Revlimid in March of 08, 11 months later he went into remission for four years and again, in
2013 we went on Revlimid again and his numbers have stayed almost normal for three years. With so many new drugs coming on line, there will be
other drugs available when he needs them. Yes, it is possible to live with this disease and do fairly well. It is a long haul and if he needs an update
in medication, we will make another trip to Rochester and go on from there for a long time. Always get a second opinion if you have this malady.

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Hello @ozys. I am Scott and I, too, am a caregiver. My spouse had brain cancer and the doctors at Mayo, Rochester were awesome for her too. Always listening and adjusting for over 14 years.

As a fellow caregiver you might find the discussion group here on Connect for caregivers of interest. You can click here to see the topics currently being discussed and you can always start a new one if you want.

You can just click this link https://connect.mayoclinic.org/group/caregivers/?tab=discussions

Peace and strength!

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@ozys

I am a caregiver to my husband who was diagnosed with Multiple Myeloma 10 years ago. We made the trip to Mayo Clinic in Rochester, Minn.
and got expert advice on how to proceed. He started on Revlimid in March of 08, 11 months later he went into remission for four years and again, in
2013 we went on Revlimid again and his numbers have stayed almost normal for three years. With so many new drugs coming on line, there will be
other drugs available when he needs them. Yes, it is possible to live with this disease and do fairly well. It is a long haul and if he needs an update
in medication, we will make another trip to Rochester and go on from there for a long time. Always get a second opinion if you have this malady.

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Welcome to Connect @ozys. You’ll notice that I moved your message to this forum where other members are talking about living with multiple myeloma. I think @totopeg @mehz4802 @scmsable @user_ch3a1e07f @mamaellie @larryfairtax and @jan52241 will all appreciate hearing about your and your husband’s journey living with MM 10 years and counting.

Like Scott, I also invite you to check out the Caregivers group here on Connect.

How does the coordination of care work in between trips to Mayo?

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@ozys

I am a caregiver to my husband who was diagnosed with Multiple Myeloma 10 years ago. We made the trip to Mayo Clinic in Rochester, Minn.
and got expert advice on how to proceed. He started on Revlimid in March of 08, 11 months later he went into remission for four years and again, in
2013 we went on Revlimid again and his numbers have stayed almost normal for three years. With so many new drugs coming on line, there will be
other drugs available when he needs them. Yes, it is possible to live with this disease and do fairly well. It is a long haul and if he needs an update
in medication, we will make another trip to Rochester and go on from there for a long time. Always get a second opinion if you have this malady.

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Thank you Colleen for moving me to the Multiple Myeloma group.

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I want to stay in the Multiple Myeloma Group also, need to hear how other patients are doing and anything new that they might be experiencing. The caregiver page is alright,
also, ozys

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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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@ozys

I am a caregiver to my husband who was diagnosed with Multiple Myeloma 10 years ago. We made the trip to Mayo Clinic in Rochester, Minn.
and got expert advice on how to proceed. He started on Revlimid in March of 08, 11 months later he went into remission for four years and again, in
2013 we went on Revlimid again and his numbers have stayed almost normal for three years. With so many new drugs coming on line, there will be
other drugs available when he needs them. Yes, it is possible to live with this disease and do fairly well. It is a long haul and if he needs an update
in medication, we will make another trip to Rochester and go on from there for a long time. Always get a second opinion if you have this malady.

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Our trips to Mayo are coordinated by a very accommodating Myeloma doctor’s office at Mayo, Dr. John Lust to be exact
always works with me and my schedule to work out a best time for us to make the trip. It is about the patient and their
needs at Mayo, not the other way around. One does have a choice about their health care, a rarity in today’s system.

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