I think I am in the final stage of losing my sister to multiple myeloma, She was diagnosed with it 21 years ago and has fought this disease every single day. She is in a wheelchair with multiple fractures and just broke her arm on Friday. She had been scheduled to have experimental treatments and was awaiting on insurance approval, that was 9 weeks ago and she has not had any treatment in those nine weeks. They have been giving her blood and because of her constant pain prescribed major pain meds. She sleeps most of the day due to the meds and it appears that she will be unable to have that experimental drugs.
I need to know what to expect in the coming weeks and if anything can be done to help her at this point. I have been so grateful for your support and your forums.
Sharon Mixer
Forums
Re: Final stage of multiple myeloma
Those who are interested in the topic of this forum thread may also be interested in this forum discussion:
"What do people with multiple myeloma die from?" (started June 22, 2014)
"What do people with multiple myeloma die from?" (started June 22, 2014)
Re: Final stage of multiple myeloma
It is remarkable to hear of someone 21 years past diagnosis. We do not hear about such stories much in the myeloma community. I have no new information to share, but I wish you well in your efforts to find some relief and help for your sister.
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BuffaloPat - Name: Pat
- When were you/they diagnosed?: 2003
- Age at diagnosis: 51
Re: Final stage of multiple myeloma
To Buffalo Pat:
I see you are about 8 years past diagnosis. Wonderful for you! Would you mind sharing a bit more of your story? Such as initial treatment, SCT, etc? And, if I may ask, do you have any of the chromosome deletions that are known to affect response to treatments? Thank you.
I see you are about 8 years past diagnosis. Wonderful for you! Would you mind sharing a bit more of your story? Such as initial treatment, SCT, etc? And, if I may ask, do you have any of the chromosome deletions that are known to affect response to treatments? Thank you.
Re: Final stage of multiple myeloma
I am so sorry to hear about your sister ... I too being a 4 year survivor of myeloma would love to hear your sisters journey if you have the time and are up to it. Hang in there.
Carol Smith
Dayton, ohio
Carol Smith
Dayton, ohio
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csmith102 - Name: Carol Smith
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2007
- Age at diagnosis: 46
Re: Final stage of multiple myeloma
I am so sorry, I lost my father to multiple myeloma two years ago. I know this is a very difficult time for you and your family.
We found palliative care to be very helpful in the final stages of my fathers disease. A palliative care doctor was able to prescribe stronger painkillers and anti-anxiety (sedative?) medication that helped my father be more comfortable. He also received blood and platelets as when his blood counts got really low he would have trouble breathing. Controlling his pain from fractures he also had was our top priority.
I wish I could tell you something more helpful ... will be praying for you and your sister.
Tracie
We found palliative care to be very helpful in the final stages of my fathers disease. A palliative care doctor was able to prescribe stronger painkillers and anti-anxiety (sedative?) medication that helped my father be more comfortable. He also received blood and platelets as when his blood counts got really low he would have trouble breathing. Controlling his pain from fractures he also had was our top priority.
I wish I could tell you something more helpful ... will be praying for you and your sister.
Tracie
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rx1997
Re: Final stage of multiple myeloma
Sharon,
Just 12 days ago I lost my sweet mom to multiple myeloma after a one-year struggle, and I am so sorry to hear about your sister's decline. Her 21-year survival is amazing.
It was so hard for me to quit the battle *for* my mom until nearly the end, because I (and she) kept looking for any reason to have hope, but the reasons became fewer and the myeloma was advancing despite treatment.
Please involve hospice as soon as you can (I wish I had sooner), as they are so compassionate and provide you with everything you could possibly need both medically and emotionally -- we had hospice for all of three days and they were wonderful.
My mom also started sleeping more and more, which was a blessing, though, since that was the only time she was really comfortable and not feeling bad or sad. Mom's decline her last week was rapid, primarily an extreme weakening, but fortunately she experienced no pain, although we had the drugs just in case, and her end was so very peaceful.
I pray your sister's next few weeks can also somehow be peaceful and that you will find the strength to make her every day as special as you possibly can. Be strong, as I'm sure you've been all along.
Take good care, MK
Just 12 days ago I lost my sweet mom to multiple myeloma after a one-year struggle, and I am so sorry to hear about your sister's decline. Her 21-year survival is amazing.
It was so hard for me to quit the battle *for* my mom until nearly the end, because I (and she) kept looking for any reason to have hope, but the reasons became fewer and the myeloma was advancing despite treatment.
Please involve hospice as soon as you can (I wish I had sooner), as they are so compassionate and provide you with everything you could possibly need both medically and emotionally -- we had hospice for all of three days and they were wonderful.
My mom also started sleeping more and more, which was a blessing, though, since that was the only time she was really comfortable and not feeling bad or sad. Mom's decline her last week was rapid, primarily an extreme weakening, but fortunately she experienced no pain, although we had the drugs just in case, and her end was so very peaceful.
I pray your sister's next few weeks can also somehow be peaceful and that you will find the strength to make her every day as special as you possibly can. Be strong, as I'm sure you've been all along.
Take good care, MK
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SmileMK - Who do you know with myeloma?: my mom
- When were you/they diagnosed?: October 2010
- Age at diagnosis: 76
Re: Final stage of multiple myeloma
IVe been in the last stage, stage 4 of multiple myeloma for almost ten years. The oncologist said that stage doesn't matter, just response to treatment. When response failed, I got weaker and weaker, lost my appetite, and caught pneumonia. The pneumonia was cured with antibiotics, and new treatments - thalidomide, Revlimid, and Velcade -- have been successful.
I read that the end stage of multiple myeloma can be more peaceful than that of some other diseases. It seems to me to be a kind of fading out of life. Preparing for life in heaven is what I do as I realize that the myeloma is not curable yet. Any physical loss is more bearable if a person develops a spiritual life.
I read that the end stage of multiple myeloma can be more peaceful than that of some other diseases. It seems to me to be a kind of fading out of life. Preparing for life in heaven is what I do as I realize that the myeloma is not curable yet. Any physical loss is more bearable if a person develops a spiritual life.
