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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@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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Thanks for joining the MM group @user_ch3a1e07f. We look forward to getting to know more about you. Would you like to start by telling the group the type of treatment and follow-up you’ve had. What conerns do you have and what gives you joy?

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@ozys

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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You can definitely take part in both groups @ozys.

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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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@mamaellie, no need to apologize. We all need a place where we can talk about the realities of cancer without judgement or fear of being a Debbie Downer.

Do you get good wound care? What extra precautions do you take with such fragile skin? I’d be interesred in hearimg what tactics others use.

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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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Hi,

I get excellent wound care. Had no idea there was such a service prior to my experiences. The only extra precautions I take is to stand further back from my car door when I am opening it. I have learned how dangerous Kraft cheese bags can be. I have also learned not to take produce containers for granted. All my wounds have been caused by the least expected things except for last week my dog, who was resting with me on the couch, for some reason was startled and jumped off the couch. She got me with her hind foot and put a deep gouge into my calf. Now that would have been expected no matter who was there. The bleeding was a lot and took 20 minutes to get under control. Went to the Immediate Care Clinic because I had never dealt with an injury like that before and I had to ensure it was cleaned properly to prevent infection. I was put on anti biotics for a week and sent to the wound Care clinic for follow up. This has been going on for over a year and I have learned what to do to care for myself after the many visits I had last June – October at the wound care clinic. I never would have thought that the dex would cause such problems.
My skin opens so easily, I carry a first Aide Kit in the car. MM Just keeps on giving.

That is why these forums are so important. The docs do not tell us everything and sometimes they might not even know this is a side effect.

Ellen

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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 agree that this kind of patient experience information is exactly why forums like Mayo Clinic Connect are so important. Wound care is a big topic of education among healthcare professionals. Entire conferences are dedicated to the subject. But as laymen, we tend to think of wound in the military sense – a wounded soldier – and images of battle injuries come to mind.

Ellen, I really appreciate your detailed response how the side effect of multiple myeloma of thin skin has affected you, and how protecting against skin injury is a constant in your day-to-day routine.

I wonder if anyone else in this MM group is dealing with this as well.

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