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.

@ozys

Hi:
We are using a lot of fruit also, but hubby is not able to exercise, too weak. The problem we are having is that he doesn’t want to eat meat and that is what he really needs right now, so I have been keeping nuts beside his chair as a snack and I think that helps a little. Otherwise, the ten years that he
has survived is a really good thing. All in all,with the new drugs, one can live a fairly decent life.
Take care, Ozys

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You might be interested in reading and adding to this discussion on Connect:

– Healthy diets for cancer patients http://mayocl.in/208vukD

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Thank you! Is there a nutritionist at Mayo 56St Phoenix?

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@ozys

Hi:
We are using a lot of fruit also, but hubby is not able to exercise, too weak. The problem we are having is that he doesn’t want to eat meat and that is what he really needs right now, so I have been keeping nuts beside his chair as a snack and I think that helps a little. Otherwise, the ten years that he
has survived is a really good thing. All in all,with the new drugs, one can live a fairly decent life.
Take care, Ozys

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Hi everyone on diet:
My husband has such an aversion to food, I am lucky to get him to eat at all. So since he really needs the protein and the doc’s do not
want him to lose weight, our solution is a steak once a week, if I am lucky. He doesn’t like a lot of the things that he used to eat. When the veggies are in for the summer, that is an option. We live in Northern Michigan and do not have the fresh gardens here, all is shipped in and not always that good. Melons are about the only thing he will eat now, so use pineapple, and (mandarins) This is a
challenge for all those on chemotherapy and dexamethosone. which really screws up the taste buds, plus my husband had a lifetime
of radiation therapy for the sinus cancer which they thought existed without a biopsy in 07. The radiation was done at a local hospital
and God Bless Mayo who we finally got to see and they corrected all the bad stuff but we’re left with the very limited appetite. Such is
the life of a cancer patient who happens to get the wrong prescription.
So glad everything is working for you and losing weight is always a good thing, I just did it since I knew the caring was going to get
more intense as time goes by, only veggies, chicken and chocolate for me and I have lost 30lbs and feel great, so can relate to the
healthy eating thing.
Ozys

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@ozys

Hi:
We are using a lot of fruit also, but hubby is not able to exercise, too weak. The problem we are having is that he doesn’t want to eat meat and that is what he really needs right now, so I have been keeping nuts beside his chair as a snack and I think that helps a little. Otherwise, the ten years that he
has survived is a really good thing. All in all,with the new drugs, one can live a fairly decent life.
Take care, Ozys

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It was interesting to me to read your post. My wife’s tastes for foods and appetite were a constant yo-yo and like trying to fit jello in a balloon! Most days it just didn’t work no matter what I tried! ­čÖé

Foods she loved all her life suddenly were off limits. Others would sound good to her, but by the time I cooked them she couldn’t make herself eat them and often the mere aromas were off-putting to her.

Kind of felt like juggling, but never knowing what it was I was trying to keep in the air — or on the menu.

Strength and peace,

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I was told to take calcium and 5000mg of Vitamin D every day. Unfortunately, it nauseates me so I only take it once a week. I am surprised you are not having MRI’s quarterly to check for lesions.

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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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Hello Ozys,

I take velcade weekly at the hospital . Injection/shot in the hip alternating sides each week. First I do labs. If labs are good, then velcade. Then once a month I do major labs consisting of 4-5 tubes of blood. Whose counting. + a 24 hour urine. The monthly labs include lambda and kappa #’s. Others I know do Velcade every other week.

I have been doing this for 1 1/2 years.

Ellen

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Thanks a lot mamaellen, I live in an area that has a lot of snow in winter and I am worried about driving if we have to go like every other day,
but once a week would be fairly easy to work out with caregivers and the weather. Sounds like you are doing well, and you probably will be
going into remission pretty soon. Hubby has been in once and very close the second time which is this time which is now going on for three
years. He has not failed rev/dex yet so am looking at the next drug for him, which VA says he will have to go for a while until they approve
pomalidimide So there is always something to think about and how to go about the next move.
Take care and hang in there,
Always love to hear good news from mm survivors,
Ozys

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Hello Ozys,

Glad to learn you are a planner. It is always better to be ahead of the game. Good for you. A year before I was identified with mm I was identified with breast cancer, I was a total basket case and did not begin any research till I was in radiation.. When I was told I had mm, I did get a bit upset, just a little
B I T (ha). I began immediately reading, learning the language/terms, contacting Mayo, Dana Farber and MD Anderson with questions and finding a support group. Within 3 weeks I was making demands to begin treatment and requesting tests on top of what the doc was ordering. I could not let what happened to me with the breast happen with mm.

For the past 11 months, I have been a hair’s breath from remission. But even when that happens, I haVE DECIDED to continue with chemo.

It is wonderful your husband has you.

Ellen

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@user_ch3a1e07f

Thank you! Is there a nutritionist at Mayo 56St Phoenix?

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Indeed there is. Marcia Larson, RDN, is the nutritionist in the cancer center at the Phoenix campus of Mayo Clinic. You can book an appointment directly or ask your doctor or PA/NP to order a consult with her.

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@user_ch3a1e07f

Thank you! Is there a nutritionist at Mayo 56St Phoenix?

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Hi Colleen:
Who is the nutritionist at Mayo, Rochester and is there a way that person could help with my husbands’ need for more protein
in his diet? Right now with winter coming, our time frame for getting over to Rochester from here is something that will have to
wait until Spring, which is usually when we take the trip.
Thanks for your help.
Ozys

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This is my first post, and see that I can identify with a number of you who are both caretaker and patient. I was diagnosed with MM 12 years ago at Mayo Clinic, after being followed by our local cancer treatment center for a year with MGUS. My local hematologist works with my Mayo doctor, and actually called Mayo as soon as my labs indicated a need for treatment this past spring before he called me. On Dex, Revlimid and Velcade with Valacyclovir twice a day since June, I am very close to remission already. Annual trips to Mayo and local frequent visits over the years have included MRIs, Skeletal Surveys, and labs every 3-4 months. In treatment, I have significant fatigue, partly in response to anemia. Appetite is non-existent, and eating is functional, and memory is giving us reason to laugh a lot. (“I want to tell you something.” “What’s that?” “I don’t know.”) If I get hungry for something, I had better have it fast, because in very short order I could be totally turned off by even the thought of it. And nothing tastes like “normal” to me, if it even has any taste at all. But I have never had one moment of fear or worry, have had no doubt that I will beat this, and know God has this in His hands. The 12 years “waiting” for a need for treatment gave me many opportunities for service through our church, and I have no doubt there are more opportunities waiting for easier days. We will somehow make it to Mayo in January (from PA) and trust safe travels. My spinal surgeries and current lumbar collapse/bulging disks, and crushed nerves seem to be a greater concern to us at this time. Monthly Zometa will hopefully get bone to the point that surgery will be possible this coming year. Meanwhile, Dex is a great help with managing pain levels, so all is good. I can only wish all of you could experience the peace my husband and I have had all this time.

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