Multiple Myeloma - has anyone had any personal experiences with it? (pain, chemotherapy)
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I am so sorry and it is so unfortunate that we don't get to choose our end. There are a lot of heartbreaking stories out there about untimely misfortunes of people. We try to make sense of it all but come up short. All we can do is regroup and embrace the person with love when all else fails. That is all we can do.
I am so sorry and it is so unfortunate that we don't get to choose our end. There are a lot of heartbreaking stories out there about untimely misfortunes of people. We try to make sense of it all but come up short. All we can do is regroup and embrace the person with love when all else fails. That is all we can do.
I think my best recommendation is to seek out Smart Patients (smartpatients.com). There's a section for MM and a lot of very knowledgeable patients who share their experiences with others.
You might see the term ASCT, which stands for autologous stem cell transplant. They harvest your healthy cells and reintroduce them at a later time. An autologous stem cell transplant replaces damaged bone marrow after chemotherapy or radiation is given to destroy cancer cells. A side effect of these treatments are that they destroy healthy cells as well. An autologous stem cell transplant replenishes the body with the vital new blood cells needed for life.
There's a lot to learn about this but try not to freak out. You can be very helpful to your sister. Finding an MM specialist with a great track record would be a good start.
I think my best recommendation is to seek out Smart Patients (smartpatients.com). There's a section for MM and a lot of very knowledgeable patients who share their experiences with others.
You might see the term ASCT, which stands for autologous stem cell transplant. They harvest your healthy cells and reintroduce them at a later time. An autologous stem cell transplant replaces damaged bone marrow after chemotherapy or radiation is given to destroy cancer cells. A side effect of these treatments are that they destroy healthy cells as well. An autologous stem cell transplant replenishes the body with the vital new blood cells needed for life.
There's a lot to learn about this but try not to freak out. You can be very helpful to your sister. Finding an MM specialist with a great track record would be a good start.
I wish you both well.
Thank you. I haven't heard of smartpatients.com. I will look into it!
She is already having an autologous stem cell transplant.
She is 5'5" and has already lost 10% of her body weight. She's usually around 100 lbs. She's naturally thing and small boned. Now she in 89 lbs.
Nothing looks good to me.
I do appreciate your advice. Are you in the medical profession?
How old is she? The stem cell transplant requires the killing of her bodies bone marrow which unfortunately can have complications down the road. If the person is young the risk becomes greater over time when the transplant is done at an early age. Over time they develop an higher incidence of leukemia and myelodysplastic syndrome. Some have chosen to delay it until later to minimize that long term risk. That's if one has a choice or not and it seems like there wasn't a choice in her case.
Thank you. I haven't heard of smartpatients.com. I will look into it!
She is already having an autologous stem cell transplant.
She is 5'5" and has already lost 10% of her body weight. She's usually around 100 lbs. She's naturally thing and small boned. Now she in 89 lbs.
Nothing looks good to me.
I do appreciate your advice. Are you in the medical profession?
Nope. But there are others on C-D who either have MM or know a lot more about it than I do.
My sister was recently diagnosed with it. I have read so much online. She is not a black male, overweight, nor has she ever worked in an oil refinery.
It looks like a death sentence to me. It also looks horrible and painful.
Does anyone have any recommendations? Amy experiences? Anything that they can tell me? She lives in the suburbs of NYC. Thank you.
Sheena, my best friend has it. She had a stem cell transplant earlier this year at Robert Wood Johnson in New Brunswick, NJ. Stem cell transplants have greatly jumped the percentage of people with MM who reach the 5-year survival mark.
It is not a cure. She has monthly maintenance chemo, and she had to stay secluded for awhile after the procedure to get her immune system built up. But she came up a few weeks ago to visit me, and she looks great. She tires more easily than she used to, but that is part of it.
Yes, it is painful. It is bone cancer. A pain in her back is what started it off. There was a tumor on her spine. Then it was in her shoulder.
How old is she? The stem cell transplant requires the killing of her bodies bone marrow which unfortunately can have complications down the road. If the person is young the risk becomes greater over time when the transplant is done at an early age. Over time they develop an higher incidence of leukemia and myelodysplastic syndrome. Some have chosen to delay it until later to minimize that long term risk. That's if one has a choice or not and it seems like there wasn't a choice in her case.
I am sorry about that. It is a rough road to travel and we in the blood bank and laboratory tend to travel that road with our patients as a few become regulars for blood products. It was quite a challenge to deal with anti-CD38 treatments used in refractory and relapsed cases. Anti-CD38 causes interference with blood bank type and crossing the patents. it requires special testing that is sent out to reference laboratories which causes delays of at least a day or so.
Granted my view my be more distorted overall because we deal with cases that need medical attention rather than the patients mentioned by the other poster that are doing fine. The stem cell transplant does have a good 5-year survival as mentioned. That's where the age comes in. I haven't come across very young patients in 30's or forties but they do exist out there.
The hope of research is to keep pushing that survival rate further and further and that area has been gaining ground.
I am a prostate cancer survivor and at age 70 it still isn't easy doing a PSA testing every 6 months.
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