Want to talk about Multiple Myeloma: Anyone else?

@papad Welcome to Mayo Clinic Connect!

Here is a conversation within this support group, about BMT and patient stories:
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I am tagging @loribmt, a fellow mentor, who underwent a bone marrow transplant for AML three years ago. I believe it would be a similar experience.
Ginger

We decided to just stay in Rochester since we have an apartment rented. It seems there is always one more test or appt. they want so we will be here.
The fridge at home is empty and the water is off. Don’t really want to go back to getting together with friends again for fear of him catching something else.

My husband was diagnosed in October and will be having BMT in February. We would love to have a conversation if you are willing to talk about your experience.

Patty,
I was diagnosed 1 1/2 yrs. ago and have been through initial treatment and just had stem cell transplant in October.
I have found that you have to be your own advocate if your not getting the response you are looking for. Here are a couple of suggestions:

1- Do your own research as much as you can. The mayo clinc, multiple myeloma .org., American cancer society etc.. This will assist you in arming yourself with some knowledge of the disease.

2- Use this knowledge to ask questions regarding treatment, side effects, next steps. I use to show up to my monthly appointments with the oncologist with a list of questions that I had.

3- I was lucky enough to be able to go to the Mayo Clinic and get a second opinion on treatment and my local team was more than willing to work with them if any suggestions were different for treatment. ( I was happy to find out that they were both on the came page).

4- My biggest issue was that my family doctor failed to diagnose my early symptoms. I assumed all bases were being covered and did not push the issue when I progressively got worse. I was in stage 2 out of 3 by time it was found by a neuro surgeon after multiple fractures in my vertebrae.

Push the issue with your care team. Don’t settle for not being kept informed or receiving the proper treatment. I have been in remission since Nov.2021. Diagnosed in June of 2021.

Feel free to contact me if you need anymore information regarding my journey and any insight I may be able to provide.

Wishing you and your husband the best treatment and recovery possible!

Would love to chat. Just starting this journey with my husband. He was diagnosed in November and he is just finishing his 2nd cycle of treatment. Feeling very frustrated by the lack of communication by the care team. Wondering if you have any advice about how to encourage the team to offer better support.

Thank you in advance for any help you can offer.

Patty

Patty,
I was diagnosed 1 1/2 yrs. ago and have been through initial treatment and just had stem cell transplant in October.
I have found that you have to be your own advocate if your not getting the response you are looking for. Here are a couple of suggestions:

1- Do your own research as much as you can. The mayo clinc, multiple myeloma .org., American cancer society etc.. This will assist you in arming yourself with some knowledge of the disease.

2- Use this knowledge to ask questions regarding treatment, side effects, next steps. I use to show up to my monthly appointments with the oncologist with a list of questions that I had.

3- I was lucky enough to be able to go to the Mayo Clinic and get a second opinion on treatment and my local team was more than willing to work with them if any suggestions were different for treatment. ( I was happy to find out that they were both on the came page).

4- My biggest issue was that my family doctor failed to diagnose my early symptoms. I assumed all bases were being covered and did not push the issue when I progressively got worse. I was in stage 2 out of 3 by time it was found by a neuro surgeon after multiple fractures in my vertebrae.

Push the issue with your care team. Don’t settle for not being kept informed or receiving the proper treatment. I have been in remission since Nov.2021. Diagnosed in June of 2021.

Feel free to contact me if you need anymore information regarding my journey and any insight I may be able to provide.

Wishing you and your husband the best treatment and recovery possible!

Would love to chat. Just starting this journey with my husband. He was diagnosed in November and he is just finishing his 2nd cycle of treatment. Feeling very frustrated by the lack of communication by the care team. Wondering if you have any advice about how to encourage the team to offer better support.

Thank you in advance for any help you can offer.

Patty

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

I am a 30 year myeloma survivor, in remission the last 10 years. I see both an in town oncologist and an out of town myeloma specialist, less frequently. Others do the same. It’s more practical to get routine things done at home, and they are fine collaborating when needed. More is in my book, profits go to Mayo and other charities.
https://arenamanbook.wordpress.com/