I would like to suggest a forum for older patients, perhaps those 65 and older. I have the impression that most of the people who post are younger than that (all of the columnists seem to be) and experience and recommended treatments do vary based on age. I notice that there are dedicated forums for MGUS and Smoldering Myeloma.
Thank you.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Forum for older patients
I would also find it helpful to have a forum for older adults. My dad was first diagnosed with smoldering multiple myeloma at 78 and is now being treated for stage II at 90 years old.
Re: Forum for older patients
Ginaseah: I am an older patient. I would love to hear more about your father's remarkable and fortunate experience as a survivor. For example, how long did he smolder before being diagnosed with active myeloma? What drug protocol has he been following? How did he handle adverse drug effects? Etc., etc. It is very encouraging to read about people like your father. I realize that every patient is different, still...
Re: Forum for older patients
My dad was first diagnosed with smoldering multiple myeloma 12 years ago when he was 78. At the time I went to a support group meeting and the folks there said that his numbers were so low that he may die of something else before he ever needed treatment. I think his M-spike was 1.something. He was monitored by a hematologist and along the way.
Around 6 years or so later, a complete body x-ray showed pepper pot lesions on his skull. He was living in NY at the time and I was living in Texas at the time, so I don't know a lot about this phase of his treatment.
He moved to Texas 3 years ago, and continued being followed by a hemotologist here. Everything was looking good. Last April he had a bone marrow biopsy and at that time the diagnosis was changed to high-risk MGUS.
My dad had an unrelated surgery this past March and after that his hemoglobin was in the 7's. His primary care doctor sent him out of turn to his hematologist and a new bone marrow biopsy showed stage 2 multiple myeloma. His M-spike was 2.8.
He began treatment in July with dexamethasone once a week and Revlimid 5 mg 21 days on, 7 days off. After 2 rounds his M-spike is down to 1.7. During this course of treatment he has had some bouts of diarrhea, which has gone away with Imodium. He has hardly any appetite and has lost about 20 lbs since April. Just today he had numbness in his left foot and calf and went to the emergency room. No blood clot but probably peripheral neuropathy. So we are just getting started on our journey with full blown multiple myeloma even though an m-spike was found 12 years ago.
I would love to hear about anyone who has started oral chemotherapy treatment at such an advanced age. I really do not see my dad's situation as being fortunate at all. It is very sad for me to see him live to 90 years old and be faced with such a challenging illness.
Around 6 years or so later, a complete body x-ray showed pepper pot lesions on his skull. He was living in NY at the time and I was living in Texas at the time, so I don't know a lot about this phase of his treatment.
He moved to Texas 3 years ago, and continued being followed by a hemotologist here. Everything was looking good. Last April he had a bone marrow biopsy and at that time the diagnosis was changed to high-risk MGUS.
My dad had an unrelated surgery this past March and after that his hemoglobin was in the 7's. His primary care doctor sent him out of turn to his hematologist and a new bone marrow biopsy showed stage 2 multiple myeloma. His M-spike was 2.8.
He began treatment in July with dexamethasone once a week and Revlimid 5 mg 21 days on, 7 days off. After 2 rounds his M-spike is down to 1.7. During this course of treatment he has had some bouts of diarrhea, which has gone away with Imodium. He has hardly any appetite and has lost about 20 lbs since April. Just today he had numbness in his left foot and calf and went to the emergency room. No blood clot but probably peripheral neuropathy. So we are just getting started on our journey with full blown multiple myeloma even though an m-spike was found 12 years ago.
I would love to hear about anyone who has started oral chemotherapy treatment at such an advanced age. I really do not see my dad's situation as being fortunate at all. It is very sad for me to see him live to 90 years old and be faced with such a challenging illness.
Re: Forum for older patients
Ginaseah, First, let me say that I am really sorry that your father, at the age of 90, has to face the misery that is myeloma. Of course he is not fortunate! None of us are. However, in a very great sense he IS fortunate. If I understand correctly, he has been largely asymptomatic for many years and his cancer was detected when he was 78 years old. By that time he had already lived to a good age, had seen his children grow, perhaps he has even seen some grandchildren through their early years. Is that not fortunate?
In my own case, I was diagnosed with MGUS at the beginning of 2009, when I was about 65 years old. Things went well until in 2014 it became clear that I was progressing toward active cancer. It certainly was a blow to the family, but I kept on thinking how fortunate I was that the cancer came later in life, after I had retired from a good career, had a wonderful husband, seen the beautiful places on this planet, seen my children through high school and university, had the opportunity to be a meaningful presence in the lives of my grandchildren. Yes, the disease is a misfortune, but I still think I am more fortunate than so many of the younger people who write in to this forum who are just beginning to raise families, have barely begun their life's adventures. It is in this context and sense that I wrote that your father had a fortunate experience as a survivor. If I survive to the age of 90 it will be a miracle.
I hesitated before writing this because I thought that perhaps I was not reading your note correctly. I imagine that you feel overwhelmed and very sad about your father. I just want to refer you to an essay submitted recently by monthly columnist Sean Murray entitled "Answers to the Name Lucky." He says it all.
I wish you and your father the very best. Hang in there.
In my own case, I was diagnosed with MGUS at the beginning of 2009, when I was about 65 years old. Things went well until in 2014 it became clear that I was progressing toward active cancer. It certainly was a blow to the family, but I kept on thinking how fortunate I was that the cancer came later in life, after I had retired from a good career, had a wonderful husband, seen the beautiful places on this planet, seen my children through high school and university, had the opportunity to be a meaningful presence in the lives of my grandchildren. Yes, the disease is a misfortune, but I still think I am more fortunate than so many of the younger people who write in to this forum who are just beginning to raise families, have barely begun their life's adventures. It is in this context and sense that I wrote that your father had a fortunate experience as a survivor. If I survive to the age of 90 it will be a miracle.
I hesitated before writing this because I thought that perhaps I was not reading your note correctly. I imagine that you feel overwhelmed and very sad about your father. I just want to refer you to an essay submitted recently by monthly columnist Sean Murray entitled "Answers to the Name Lucky." He says it all.
I wish you and your father the very best. Hang in there.
Re: Forum for older patients
It has taken me a while to reply because my dad has been hospitalized for blood clots in the small arteries of his left foot and a number of other issues, the least of which is his multiple myeloma. We have made the decision to switch to palliative care and his hematologists are in approval of that move. He has led a long and full life and we are all grateful for having him for so long with us. We are trying to make him as comfortable as possible. His health has been in decline for the last year and the diagnosis of multiple myeloma and subsequent treatment just added to his other problems.
I have appreciated all that I have learned from the other posters on The Myeloma Beacon. Thank you all. I wish you strength and courage as you face the challenges that multiple myeloma presents. Thank you mrozdav for helping me put things in perspective. I hope that the recent advances in treatment continue and you have many more years to enjoy with your family. That after all is what is truly meaningful in life.
I have appreciated all that I have learned from the other posters on The Myeloma Beacon. Thank you all. I wish you strength and courage as you face the challenges that multiple myeloma presents. Thank you mrozdav for helping me put things in perspective. I hope that the recent advances in treatment continue and you have many more years to enjoy with your family. That after all is what is truly meaningful in life.
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