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MZ (@mehz4802)

Multiple Myeloma

Blood Cancers & Disorders | Last Active: Dec 28, 2020 | Replies (165)

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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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Replies to "Hi, I have mm. Was identified 1 1/2 years ago. I responded very well to velcade,..."

@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.

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

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.

OMG, mamaellie, you have one of the most complicated diseases in that the remedy is hard to take and the dex makes
invested in J & J a long time ago. he got blisters on his feet and no-one seemed to know what caused them, more bandaging
and finally they healed and now they are back., probably a drug reaction. He is on Revlimid and hasn’t taken anything else so far
and has survived 10 years, so there is hope for you. Just hang in there and don’t worry about being a little upset with the meds and what mm has done to you. Your are a survivor and each day is one more day to celebrate
Take good care of yourself and know you are not in this alone.
Ozys (caretaker)

@mamaellie
Hi there! When I first read your post, you made a statement about mm being "the gift that keeps on giving", and that couldn't be more true to my experience! At the time, you certainly had a few issues on the table. Of note was near remission, but continuing to deal with progressive lesions, and I wonder how you are doing these days. Do you mind offering an update?
Nancy

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.

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!