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Considering only supportive treatment
Hello. I am newly diagnosed, stage 3, tumor on my upper spine, a lesion farther down the spine and one on hip. Pain radiates down right arm, but has been better on immediate high dose dexamethasone. Adjusting to diagnosis--actually rather stunned! At this time, I feel only supportive care makes sense. The question is: Do I want to give up my highly analytical computer job due to chemo brain? Do I want to stop doing the things I want to do because I'm sick from chemo? The treatments sound like a terrible way to spend the remaining time I have. Also, the high costs of treatment and constantly sitting in doctor's offices don't sound very appealing. Will I leave my family without any financial support in the future because I spent all the money keeping myself alive a few more months? I have not seen many people writing who are not interested in receiving chemo. The doctors seem to assume that all patients want chemo and have not asked me what's important to me. Can anyone out there give me any information on their experiences of refusing treatment. Thanks so much. All the best to all of you. Thank you for your stories.
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Patiently - Name: Patiently
- When were you/they diagnosed?: May 2012
- Age at diagnosis: 63
Re: Considering only supportive treatment
hI Patiently, Thanks for sharing your story! A diagnosis such as multiple myeloma is quite overwhelming at first...even three years later, it still bothers me sometimes! You don't say where you live, but there does appear to be financial support for patients in many places. Probably you need time to think this over, and need to consult with very knowledgeable haematological oncologists and/or multiple myeloma specialists in order to find out what treatments would be available for you. Many patients come into treatment with similar health issues, and manage to get through it. Really best wishes to you!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Considering only supportive treatment
Hi Patiently!
You write:
"The question is: Do I want to give up my highly analytical computer job due to chemo brain? Do I want to stop doing the things I want to do because I'm sick from chemo? The treatments sound like a terrible way to spend the remaining time I have. Also, the high costs of treatment and constantly sitting in doctor's offices don't sound very appealing. Will I leave my family without any financial support in the future because I spent all the money keeping myself alive a few more months? I have not seen many people writing who are not interested in receiving chemo. The doctors seem to assume that all patients want chemo and have not asked me what's important to me. Can anyone out there give me any information on their experiences of refusing treatment."
I suspect no one wants to give up doing the things they want due to chemo brain or being ill. OTOH, what type of illness do you think comes with multiple myeloma therapy and you may not have chemo brain and have to give up your highly analytic computer job. Will that make a difference to you?
I agree sitting in MD's offices is not appealing but what amount of time do you believe this constitutes? A few hours one or two days a week or even monthly? What is your understanding of the time commitment for therapy. Have you explored that in an analytic way to know just what it actually means? As far as high costs go, yes it is very expensive and hopeful the health insurance you have earned on your computer job will cover most of those costs, if not there are several other medical assistant programs available. Leaving financial support for your family is important to all of us and that can be worked out with a financial planner.
Physicians offer what they have learned will extend life based on that being a presumptive goal of all patients. Doctors often know that patients also have quality of life (QOL) as a concern, and it is important that you raise that issue with your physician and explore ways to maximize QOL goals in terms of the therapy you select.
Sorry, but I don't have information on refusing any/all treatment outright, but I have declined to submit to specific therapies when I believed the risks outweighed the benefits based on QOL being a priority.
I empathize with you completely in terms of why have more days alive if they are spent suffering from side effects or bedridden due to toxic effects of therapy. I choose to decline those outcome choices.
You can too.
multiple myeloma as far as cancers go has therapy that is far less toxic than for numerous other solid tumors and hematologic cancers. Typically, there is no hair loss, nausea/vomiting/mouth sores.Only you though will get to determine whether the benefits outweigh any risks you may perceive.
Has your physician recommended a specific therapy for you yet? If so, it will be easier for most folks here at the Beacon to respond to what you can expect in terms of chemo brain or adverse events that make daily life challenging while at the same time sharing how therapy impacts their QOL.
In the end though, the choice is highly personal ...and I think if truth be told nary one of us were jumping up and down and saying 'pick me' or volunteering for therapy when initially given the therapeutic choices....but after all is said and done, each individual chooses what they believe makes them happiest and provides the most quality of life for them.
Good Luck Patiently!!
You write:
"The question is: Do I want to give up my highly analytical computer job due to chemo brain? Do I want to stop doing the things I want to do because I'm sick from chemo? The treatments sound like a terrible way to spend the remaining time I have. Also, the high costs of treatment and constantly sitting in doctor's offices don't sound very appealing. Will I leave my family without any financial support in the future because I spent all the money keeping myself alive a few more months? I have not seen many people writing who are not interested in receiving chemo. The doctors seem to assume that all patients want chemo and have not asked me what's important to me. Can anyone out there give me any information on their experiences of refusing treatment."
I suspect no one wants to give up doing the things they want due to chemo brain or being ill. OTOH, what type of illness do you think comes with multiple myeloma therapy and you may not have chemo brain and have to give up your highly analytic computer job. Will that make a difference to you?
I agree sitting in MD's offices is not appealing but what amount of time do you believe this constitutes? A few hours one or two days a week or even monthly? What is your understanding of the time commitment for therapy. Have you explored that in an analytic way to know just what it actually means? As far as high costs go, yes it is very expensive and hopeful the health insurance you have earned on your computer job will cover most of those costs, if not there are several other medical assistant programs available. Leaving financial support for your family is important to all of us and that can be worked out with a financial planner.
Physicians offer what they have learned will extend life based on that being a presumptive goal of all patients. Doctors often know that patients also have quality of life (QOL) as a concern, and it is important that you raise that issue with your physician and explore ways to maximize QOL goals in terms of the therapy you select.
Sorry, but I don't have information on refusing any/all treatment outright, but I have declined to submit to specific therapies when I believed the risks outweighed the benefits based on QOL being a priority.
I empathize with you completely in terms of why have more days alive if they are spent suffering from side effects or bedridden due to toxic effects of therapy. I choose to decline those outcome choices.
You can too.
multiple myeloma as far as cancers go has therapy that is far less toxic than for numerous other solid tumors and hematologic cancers. Typically, there is no hair loss, nausea/vomiting/mouth sores.Only you though will get to determine whether the benefits outweigh any risks you may perceive.
Has your physician recommended a specific therapy for you yet? If so, it will be easier for most folks here at the Beacon to respond to what you can expect in terms of chemo brain or adverse events that make daily life challenging while at the same time sharing how therapy impacts their QOL.
In the end though, the choice is highly personal ...and I think if truth be told nary one of us were jumping up and down and saying 'pick me' or volunteering for therapy when initially given the therapeutic choices....but after all is said and done, each individual chooses what they believe makes them happiest and provides the most quality of life for them.
Good Luck Patiently!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Considering only supportive treatment
Patiently:
The staging in Multiple Myeloma does not carry the same weight regarding prognosis as staging in other cancers does. Many patients with the same or worse situations have come out much better health-wise. Therefore you need not give up. Even if you have to leave your computer job temporarily because of the side effects of the therapy, you can always pick it up afterwards, albeit in an out-of-workplace setting. Working on projects independently is one of the many benefits of working as an IT professional. I agree with Nancy that you should give it some time before making a decision one way or another.
The staging in Multiple Myeloma does not carry the same weight regarding prognosis as staging in other cancers does. Many patients with the same or worse situations have come out much better health-wise. Therefore you need not give up. Even if you have to leave your computer job temporarily because of the side effects of the therapy, you can always pick it up afterwards, albeit in an out-of-workplace setting. Working on projects independently is one of the many benefits of working as an IT professional. I agree with Nancy that you should give it some time before making a decision one way or another.
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Ben S.
Re: Considering only supportive treatment
Hi Patiently,
I think you may be jumping the gun a bit, only because you don't know that much about Multiple Myeloma yet. It seems as if you gave yourself a 'brief sentence' - and don't give yourself enough hope or credit. Having multiple myeloma now is TOTALLY different than if you had it 10 and 15 years ago. Over all, the treatments are very tolerable and the life spans have nearly tripled.
My father got diagnosed at 77 years old, with bone damage in hip/pelvic area and a compression fracture of the spine. I bascially wrote it off in my head as a death sentence - i was totally wrong. After a couple of rough months, he made a complete turnaround and lives a totally normal life. He responded very well to treatment and his multiple myeloma has been stable this whole time - with no relapse as of yet. This was over four and a half YEARS ago - he is now near his 82nd birthday.
Of course everyone should do what they feel is right for them, but i'll just say for now - explore all the possibilites first. You might be surprised!
Good luck.
Deb
I think you may be jumping the gun a bit, only because you don't know that much about Multiple Myeloma yet. It seems as if you gave yourself a 'brief sentence' - and don't give yourself enough hope or credit. Having multiple myeloma now is TOTALLY different than if you had it 10 and 15 years ago. Over all, the treatments are very tolerable and the life spans have nearly tripled.
My father got diagnosed at 77 years old, with bone damage in hip/pelvic area and a compression fracture of the spine. I bascially wrote it off in my head as a death sentence - i was totally wrong. After a couple of rough months, he made a complete turnaround and lives a totally normal life. He responded very well to treatment and his multiple myeloma has been stable this whole time - with no relapse as of yet. This was over four and a half YEARS ago - he is now near his 82nd birthday.
Of course everyone should do what they feel is right for them, but i'll just say for now - explore all the possibilites first. You might be surprised!
Good luck.
Deb
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DebJr.
Re: Considering only supportive treatment
Thanks so much for your thoughts. Lots of thinking and adjusting to do. You are generous to give me your advice and I appreciate it.
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Patiently - Name: Patiently
- When were you/they diagnosed?: May 2012
- Age at diagnosis: 63
Re: Considering only supportive treatment
Dear Patiently, it is true what Ben says. The "stage" of multiple myeloma is quite irrelevant to your treatment outcome prognosis. It is more to do with chromosome abnormalities that may make you resistant to current novel therapy drugs or those used in SCTs. I would urge you to begin the process of looking at all your options. Novel therapy chemotherapy to manage your disease. SCT to treat your disease, either a single or tandem. A research facility or a multiple myeloma specialist found locally.
Not treating would not be an option generally for a newly diagnosed patient, as you can gain life expectancy and while altered, a general decent QOL, depending on how you respond and your treatment choices.
My husband was 48 at the time of diagnosis, a telecom engineer. He worked throughout his tandem transplants in Arkansas and continues to work in excess of a 40 hour week. It is not something everyone should or even wants to do, but it makes him happy so I have been supportive. He is continuing on a 3 year maintenance chemo therapy protocol which will end in December and has managed to work around the side effects of fatigue and peripheral neuropathy quite well. I hope this helps in your consideration to further investigate what is available to you. Good luck.
Not treating would not be an option generally for a newly diagnosed patient, as you can gain life expectancy and while altered, a general decent QOL, depending on how you respond and your treatment choices.
My husband was 48 at the time of diagnosis, a telecom engineer. He worked throughout his tandem transplants in Arkansas and continues to work in excess of a 40 hour week. It is not something everyone should or even wants to do, but it makes him happy so I have been supportive. He is continuing on a 3 year maintenance chemo therapy protocol which will end in December and has managed to work around the side effects of fatigue and peripheral neuropathy quite well. I hope this helps in your consideration to further investigate what is available to you. Good luck.
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habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: Considering only supportive treatment
Patiently,
Sorry to hear about your diagnosis. Everyone above has made great points. In 2012 Myeloma patients have therapy choices that can accomodate any patient. I did the most intensive therapy available one year ago - Allogeneic transplant. I jog, lift weights and I am back working one year later. My life is very similar to what it was prior to diagnosis. The NIH published a study about 5 year plus survivors of Allo transplants that said this:
"These results show that 5 or more years after T cell-depleted HSCT for hematologic malignancy most individuals survive disease free with an excellent performance status, preserved physical and psychological health, and excellent HRQL."
HRQL is Health Related Quality of Life.
http://www.ncbi.nlm.nih.gov/pubmed/20302959
OTOH a Myeloma patient can go with an all oral route with Myeloma therapy and continue to lead a fairly normal lifestyle. One 70 year old patient has been using pomalidomide for the last four years and his goal is to run marathons in all 50 states. Here is a link to his inspirational site.
http://myelomahope.blogspot.com/
The previous poster Habubrat also has a very informative site that is a great help to any newly diagnosed patient.
http://www.loripuente.com/
Mark
Sorry to hear about your diagnosis. Everyone above has made great points. In 2012 Myeloma patients have therapy choices that can accomodate any patient. I did the most intensive therapy available one year ago - Allogeneic transplant. I jog, lift weights and I am back working one year later. My life is very similar to what it was prior to diagnosis. The NIH published a study about 5 year plus survivors of Allo transplants that said this:
"These results show that 5 or more years after T cell-depleted HSCT for hematologic malignancy most individuals survive disease free with an excellent performance status, preserved physical and psychological health, and excellent HRQL."
HRQL is Health Related Quality of Life.
http://www.ncbi.nlm.nih.gov/pubmed/20302959
OTOH a Myeloma patient can go with an all oral route with Myeloma therapy and continue to lead a fairly normal lifestyle. One 70 year old patient has been using pomalidomide for the last four years and his goal is to run marathons in all 50 states. Here is a link to his inspirational site.
http://myelomahope.blogspot.com/
The previous poster Habubrat also has a very informative site that is a great help to any newly diagnosed patient.
http://www.loripuente.com/
Mark
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Mark
Re: Considering only supportive treatment
Dear Patiently:
You have received a lot of great advice and suggestions. I would only add that my husband was diagnosed over 8 years ago at age 52. It was devasting news as you well know. However, he read everything he could get his hands on. The internet is a great resource and talked with several people in the Winship Clinic. He devised the treatment plans that best suited him and our lifestyle. My husband worked every day even during his stay in the hospital during 2 stem cell treatments and numerous complications that cropped up along the way. Even the last very agressive treatment they did on him last November that kept him hospitalized for 47 days didn't stop him from working. He was a product manager for an international manufacturing and import business. With the use of cell phones and laptops one can continue to work and provide for their families for a very long time. Yes, there are many inconvenient occurances but overall I feel my husband was able to lead a pretty good life in spite of it all. We traveled when he was feeling up to it. Just this past July we went to Quebec and then down the coast of Maine and had a wonderful time. He passed away January of this year. As a family member I'm telling you that you much do whatever you can to live and keep a bright outlook on life. There are new and improved treatments being developed every year and who knows, you might just be the one that receives the cure!! My husband's oncologist told him from the beginning that is was his job to keep him alive until a cure can be found. We fell a little bit short but maybe you won't. Think about it. Learn about it. Keep communicating with people just as you have here. Best of luck to you.
Eva Barnes
You have received a lot of great advice and suggestions. I would only add that my husband was diagnosed over 8 years ago at age 52. It was devasting news as you well know. However, he read everything he could get his hands on. The internet is a great resource and talked with several people in the Winship Clinic. He devised the treatment plans that best suited him and our lifestyle. My husband worked every day even during his stay in the hospital during 2 stem cell treatments and numerous complications that cropped up along the way. Even the last very agressive treatment they did on him last November that kept him hospitalized for 47 days didn't stop him from working. He was a product manager for an international manufacturing and import business. With the use of cell phones and laptops one can continue to work and provide for their families for a very long time. Yes, there are many inconvenient occurances but overall I feel my husband was able to lead a pretty good life in spite of it all. We traveled when he was feeling up to it. Just this past July we went to Quebec and then down the coast of Maine and had a wonderful time. He passed away January of this year. As a family member I'm telling you that you much do whatever you can to live and keep a bright outlook on life. There are new and improved treatments being developed every year and who knows, you might just be the one that receives the cure!! My husband's oncologist told him from the beginning that is was his job to keep him alive until a cure can be found. We fell a little bit short but maybe you won't. Think about it. Learn about it. Keep communicating with people just as you have here. Best of luck to you.
Eva Barnes
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diamonds585 - Name: Eva
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: October, 2003
- Age at diagnosis: 52
Re: Considering only supportive treatment
My first reaction when diagnoised with multiple myeloma was to forego treatment. It was all so overwhelming, but I quickIy found that treatment was needed to improve my quality of life. I suffered two spinal compression fractures before I was diagnosed, and intense bone pain. Since beginning treatment, I feel so much better and am still working. Just my thoughts.
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DebitCPA
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