Want to talk about Multiple Myeloma: Anyone else?

Posted by Frazer 1 @frazer1, Apr 11, 2012

Asking anyone who is going thru this experience to share any pro's or con's of this disease. As of now I'm in MGUS, will find our next week if it has progress to Smoldering Myeloma.

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@vgen

At this point i dont see anything good about this disease the morphine is cutting thru the pain. Making my sister very groggy but still has pain. She’s supposed to hit the button every time she wants a dose of pain medication but she cant focus on anything but her pain. Doctor wont give fentanyl patches unless she cant tolerate the morphine. Which I’d say by the time it touches the pain she’ll be comatose..she went into hospital alert but in extreme pain. Now she stares off into space. She can’t see so blind and still in level 9 pain..i will see what’s next..for pain relief. Thanks for listening..

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That’s horrible. They need to figure out how to address her pain without snowing her so she can’t be alert to her surroundings.
Keep barking up the physician food chain. They can’t just let her suffer.
My husband’s oncologist (died of colon cancer in 96) told me that being a cancer patient is a horrible thing but nothing feels as helpless as being that person’s caretaker. When he said it I blew him off because I was in warrior mode, but once that responsibility lifted I recognized the toll it had taken on me.
Be kind to yourself. This is hard work.

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@vgen

At this point i dont see anything good about this disease the morphine is cutting thru the pain. Making my sister very groggy but still has pain. She’s supposed to hit the button every time she wants a dose of pain medication but she cant focus on anything but her pain. Doctor wont give fentanyl patches unless she cant tolerate the morphine. Which I’d say by the time it touches the pain she’ll be comatose..she went into hospital alert but in extreme pain. Now she stares off into space. She can’t see so blind and still in level 9 pain..i will see what’s next..for pain relief. Thanks for listening..

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Errrr....I think the fact that she is requiring so much morphine and is still at a level 9 for pain states pretty darn clearly that the morphine ISN'T WORKING FOR HER PAIN, thereby meeting their criteria for approving Fentenyl for pain relief. On top of that, morphine is known to decrease respiration which leads to another set of problems. I think her doctors need to have her despair shoved down their throats if that is what is needed for them to have even a little bit of empathy. MM bone pain can be agonizing after a new fracture, uncomfortable about one month into the two month healing time, and annoyingly uncomfortable after that. No bending, lifting, or twisting helps to prevent new fractures. She is lucky she has a sister advocating for her....

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Fight and best of luck getting some treatment!

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@cgirl0721

Mrs. Oakley, your post has given given me so much hope to know that MM can be managed for years. I know it has not been easy for your husband or you but, he’s still here after 12 years. She’s on the treat for 3-4 months and she’ll get assessment in a few weeks about transplant options. We don’t know what that means yet for her treatment or disease. Is this the normal next step.? Does chemo get her to remission without transplant? How is your husband’s quality of life through all of this. Is he able to continue to do some of the things that he normally enjoys? How did he tolerate revlimid? I seen some challenges with this drug. Would you send the link for the IMF that you mentioned.

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Congratulations on your long myeloma survivals. I am a 30 year myeloma survivor. My short YouTube lessons learned by my caregiver and me are at https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysg

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@jimbond48

Congratulations on your long myeloma survivals. I am a 30 year myeloma survivor. My short YouTube lessons learned by my caregiver and me are at https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysg

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Thanks Jim. Congratulations on your 30 year survival!!!

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@khnielsen

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

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@khnielsen Thank you for this awesome “playbook” for living and dealing with MM. I copy and pasted your words of wisdom and have sent them to my father who was recently diagnosed with MM. He is currently in his 1st month of VRD treatment and is hopeful to be healthy enough for a SCT in November at Mayo. Thank you for your thoughtful description of a “day in the life of…” an MM patient. Wishing
(-and praying😊) for your continued health! Many, many thanks!!!!

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I have gotten a second opinion on my ET treatment from a Dr. in a nearby city. I am following his treatment, which differs from the treatment prescribed by original provider in my city. I have a scheduled appt. with original provider coming up and I’m not sure if I should even go. It’s awkward now! I don’t want to totally cut them off, because they are closer, but I’m not following their recommended protocols. What to do?

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I was diagnosed almost 2 years ago and have go through chemo for 5 months and then a stem cell transplant in May 2021 then on maintenance chemo

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@deajay

I was diagnosed almost 2 years ago and have go through chemo for 5 months and then a stem cell transplant in May 2021 then on maintenance chemo

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@deajay Welcome to Mayo Clinic Connect. You said you have had a stem cell transplant. Congratulations! Where was this done, and how are you feeling these days?
Ginger

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Hi all, I was diagnosed with MM back in March this year. After 5 months if immunotherapy, my MM which is stage 3 kappa light chain is under control with almost normal test result. Next step is to go thru stem cell transplant end of October. Anyone can share their experience with stem cell transplant while going thru it and how successful it has been since dine please.

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