Multiple Myeloma: Come introduce yourself and let's talk

Welcome @1nan. Thank you for sharing your story here. Are the spinal and nerve issue related to MM or a separate issue? I can imagine that this complicates travel. Have you used Mayo Clinic concierge travel services when traveling to Rochester? http://mayocl.in/21nM5T6

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.

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

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.

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

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

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

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

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.

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! 🙂

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,