Want to talk about Multiple Myeloma: Anyone else?

May I ask which doctor do you see at Mayo?

They have Mayo in Arizona. I see an MM specialist at Mayo, Jacksonville, FL. It is a 2 1/2 hour drive from our home in South Georgia. We even drove it for Chemo, once a week (3 wk on/1 wk off), for 4 months. I had my SCT there, too. They are all wonderful, at Mayo. They have great organization, and communicatin skills down pat! And the professionalism can't be beat, in my opinion. It was worth every mile. I go back in June for my 2 year re-check.

My husband is on the fast track for his stem cell transplant. This past week he had his apheresis catheter implanted, ouch, and a successful stem harvest. They managed to harvest over 13,000,000 stem cells on the first day! Thankfully we have the weekend off now before the chemo and transplant next week.

He is experiencing intense restless leg syndrome and sleeplessness at the moment. Has anyone had similar problems? Not sleeping is driving him crazy. Any recommendations would be much appreciated.

(oops restless legs syndrome!).

Hi just had apheresis stem cell collection myself. Read a little, picked up that low calcium , and or vitamin D, can cause restless keg- and apheresis can throw those balances out of whack. Phosphorus may also figure in. Ask your doc if you can safely supplement.

Dear Frazer 1 (and any other MM patients, family members, and caregivers),

I am a 58 year old woman who was diagnosed with Multiple Myeloma on June 15th, 2000, only three weeks after graduating with my Master's degree in Counseling (at age 46). I was in the later stages of the disease: I believe Stage B4 would be the correct term? My skull, spine, ribs, upper arms, pelvis, and femurs had tumors. I seriously don't know how I managed to work 20 hours a week and go full-time to graduate school and STILL graduate with a perfect 4.0 (simply bragging here, folks!)

The main point of my reply is the date of my diagnosis....JUNE 15th, 2000... over TWELVE YEARS AGO. And, after having having a double "mini" transplant (my own stem cells and my sister's stem cells) at Fred Hutchinson Cancer Research Center in Seattle, I am STILL IN REMISSION. More good news: last June I went to a reunion weekend at "The Hutch" as we Hutch patients call it, and I met a woman who had had a FULL stem cell donor transplant and SHE was still in remission after FIFTEEN years.

When I was diagnosed in 2000, the blankety-blank hematologist/oncologist (now HE is another other story) informed me I had only eighteen months to two years to live. I wasn't willing to accept that so I started making phone calls to the nearest big medical centers (not being close to the Mayo Clinic). One call led to another and I found out that I had a lot more options than I thought. M.M. wasn't the "terminal" cancer I had been told it was. Yes, there is no specific "cure." But at least I had a chance.

What to expect...it depends...it depends on the specific treatment, on your individual body, and your attitude...and (I can't believe I'm typing this) prayer. Research has shown that patients who were prayed for had statistically significant improvement over patients who weren't prayed for...and these patients were not aware they were receiving organized prayer.

NUMBER ONE: YOU MUST ABSOLUTELY GET ANOTHER OPINION and ADVOCATE FOR YOURSELF. iF you are too ill and/or overwhelmed to do so, assign tasks to your family and friends...doing something for you will aid in their feeling helpless and out-of-control. For example, my brother took care of all the research for me, since "chemo brain" reduced my computer skills to a big fat zero.

NUMBER 2: You need to talk to your oncologist or G.P. about being on blood thinners. It is part of the recommended treatment but one that my blankety blank oncologist didn't bother with and it almost killed me. M.M. patients throw clots. Clots cause pulmonary embolisms. P.E., can kill a person. Watch out for the blood thinner cumadin (warfarin)...I had real problems with it working not enough and then way too much (another near death experience). The "Hutch" put me on daily Lovenox shots, which worked much better with my M.M. body.

NUMBER 3: HYDRATION!!! HYDRATION!!! HYDRATION!!! The Hutch recommended 3 litres of fluids a day (that includes coffee, tea, watermelon, whatever). I couldn't manage to do anywhere near that amount it orally, so for almost two years (due to complications) I had IV. fluids using my central line. I went through 4 months of V.A.D. chemotherapy plus the transplant chemo regimens. Thanks to the fluids, my kidneys are normal! Even though I still need to take meds for other cancer related side-effects (like Addison's Disease) my kidneys are handling all of them! NOTE: My caregiver was a hospital respiratory therapist, very experienced, and she went to war for my fluids. I'll never be able to thank her enough.

#4 Diet: Yes, I tried the super healthy cancer diets and vitamins and naturopathic supplements. They simple made me throw up. And the nutritionist at the Hutch did educate me on good nutrition, but I was just one of those patients who threw up at the blink of an eye. I got very good at it, and could even knit and barf at the same time! Hey, you HAVE to develop a good sense of humor if you don't already have one. The nutritionist finally said, "Eat anything, whatever you can keep down, and don't stress about it."

#5 Exercise: IF YOU DON'T USE IT, YOU'LL USE IT. Even one or two days down can cause muscle wasting (and blood clots). I tried to walk as much as I could...1/2 to one mile almost every day that I wasn't in the hospital, and then I walked the halls if I could summon up even an ounce of energy. I used a walker, which helped support my back. It was an exercise in courage as well, as it was the last thing I wanted to do. The pool was out because of the transplant issues and central lines.

#6 Support: I tried the local women's cancer group, but I was the only one there without breast cancer. No one could even relate. I didn't even get to talk to and MEET anyone else with MM until over a year after my diagnosis, when I started a support group myself after being discharged from the Hutch (The transplant program is out-patient, but you have to be in the area, within half an hour of the clinic and hospital, and my transplants took about 8 or 9 months.)

That being said, finally getting some support, getting some questions answered, and being able to GIVE support to other patients, was so very, very helpful.

I'm not going to kid you. The M.M. journey is long and arduous...that's the truth. There is no pink ribbon for us, no M.M. "month." (M.M's ribbon is burgandy--not a widely known fact.) While I would be happy to tell you more about my personal experience, side effects they didn't tell me about (or I didn't remember or hear), and the length of time the healing process can take, it would only be that...MY experience. Everyone is different. "It depends" is a phrase you will hear again and again. Just know that I am happy to be available to M.M. patients who are just beginning their journey with this weird disease, or who just need another M.M. survivor to talk to. I am grateful for my counseling skills and grief therapy training as they helped me manage my healing process with a positive attitude and a grateful heart (or so I've been told). And, while general cancer support groups have their place, M.M. is a unique experience. Check with the M.M. Foundation and find a support group close to you. Not a support group person? Feeling too ill to make it to a meeting? Online support and informational telephone "conferences" are also available. Thank Heavens for the Internet!!! And if you would like to message me with questions or you just need to vent, I would be happy to offer anyone (patients, caregivers, family members) the support I so dearly wished someone had offered me and mine way back when.

Stay positive, laugh, and learn to knit or meditate (actually knitting has been found to have the same beneficial effects as meditation)!!!

Karen

Thanks so very much for sharing your info. Very helpful! Hopefully the 6 more chemo treatments bring that M Spike number down. Thanks

@tristram I certainly can understand your thoughts on this. When I was first told about my treatment, and the cost, it was overwhelming. Not to mention stressful! I was told about the BMS patient support and got help there. I have qualified every year, as we are both retired and have fixed incomes. You need to stay on top of things, and I do keep all my paperwork each year in case there is a need to prove anything. This past December, due to calendar and timing, it was a dicey situation to get approval for my next round, and I was ready to pay out of pocket for the co-pay if needed, to get my meds. It was a very stress=filled holiday season, coupled with weather-related delays to get the shipment in!

Here are a couple of websites you can look into, that may be able to give you more information, and some other avenues to pursue. I have not used the Leukemia and Lymphoma Society programs, but people tell me they are helpful. Please let me know if you find any of these useful!
https://www.bmsaccesssupport.bmscustomerconnect.com/patient
https://www.needymeds.org/drug_list.taf?_function=name&name=Revlimid
https://www.lls.org/support-resources/financial-support/patient-aid-program#:~:text=The%20LLS%20Patient%20Aid%20Program,%2C%20housing%2C%20utilities%2C%20etc.
https://www.biomatrixsprx.com/news/support-resources-for-patients-taking-revlimid-lenalidomide-capsules
Ginger