Hi All,
Because of the side effects, I would prefer to have palliative treatment from the onset.
I wanted to find out if there are some on the forum who had radiation and or chemo and would you do it again or just have chemo. (Keep in mind I would need and consider radiation on the neck/spine as the cancer destroyed C6 and C7). In addition, I would need chemo for the rest, that's what I would want to avoid.
Also, are some on the forum who after diagnosis thought to forego treatment and thus have chosen palliative care/treatment from the onset and stayed with it or changed their mind later on. If so, how is the process going and would you do it again or do you regret it? Yes, I know about the various stages of multiple myeloma.
I didn't write the foregoing to limit responses. All replies are appreciated. Nothing is more helpful than firsthand accounts and suggestions and ideas from those who battle multiple myeloma. I am grateful to all of you will write or have written before. Be assured I have read lots of posts before I introduced myself; see my post here:
https://myelomabeacon.org/forum/concerned-about-radiation-chemo-side-effects-t1615.html
Forums
Re: Palliative treatment from the onset?
I too did not want treatment but when bone lesions progressed, I began a course of chemo, (Doxil, Dex and subcutaneous Velcade twice a week for two weeks each month). In addition, I get Zometa monthly.
My fear and apprehension was unwarranted. I've had three rounds of chemo and my M spike has decreased 96 % to 0.3. I have had only mild side effects, i.e. manageable constipation and manageable insomnia for two days following each treatment. I have more energy than ever and live a very physically active life.
It is our personal decision how we want to manage this disease. If you decide not to have chemo, that is your choice. I support decisions each of us make and would NEVER tell someone what they should do. You must do whatever feels right for you. Just don't let fear of chemo or radiation dictate your decision. I wish you the best.
My fear and apprehension was unwarranted. I've had three rounds of chemo and my M spike has decreased 96 % to 0.3. I have had only mild side effects, i.e. manageable constipation and manageable insomnia for two days following each treatment. I have more energy than ever and live a very physically active life.
It is our personal decision how we want to manage this disease. If you decide not to have chemo, that is your choice. I support decisions each of us make and would NEVER tell someone what they should do. You must do whatever feels right for you. Just don't let fear of chemo or radiation dictate your decision. I wish you the best.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Palliative treatment from the onset?
Palliative care (from Latin palliare, to cloak) is an area of healthcare that focuses on relieving and preventing the suffering of patients.
Shortly after I was diagnosed I went into kidney failure and my back hurt so much I could hardly get in and out of the car, much less drive, and using the bathroom was difficult despite the morphine pain killers I was given. My doctors told me the best way to relieve the pain was to get rid of the root cause, the disease. Treat the disease and the pain will subside or go away. Do not treat and it will get worse.
They were right. A few weeks after starting dexamethasone and Velcade, the back pain disappeared completely. The treatment only made the pain better. I found fatigue and weight loss from chemo to be a more significant issue than pain. Later during treatment I developed peripheral neuropathy from Velcade, which hit me significantly harder than most. Even with significant pain in the legs from peripheral neuropathy, I feel I am much better off, and still alive, and in had less pain, than I would have been not receiving treatment to rid me of the disease and only receiving treatment to relieve the symptoms. Treating the disease for me was the best palliative care.
Sometimes I think people feel are afraid that chemo and radiation will cause great suffering and pain because a lot of people write about their experiences going through it to share with others, while people write less about experiences of not being treated, or what they are experiencing when treatment does not work, which is probably a lot worse. An easier choice may seem to avoid that and not fight the cancer and only be relieved for the discomfort and symptoms from the cancer.
I do not understand this as, from what I have seen, as cancer progresses for many there is only so much that can be done to relieve the pain and suffering. I think it can be naïve to think that, by not going through chemo and radiation, one is avoiding pain and suffering.
Having said all that, I am fairly young to have myeloma. I also can understand that for those who develop myeloma at an older age and may have existing significant health issues and a deteriorated quality of life, a decision to not go through chemo and radiation and let the disease run its course may be the best decision for them.
Shortly after I was diagnosed I went into kidney failure and my back hurt so much I could hardly get in and out of the car, much less drive, and using the bathroom was difficult despite the morphine pain killers I was given. My doctors told me the best way to relieve the pain was to get rid of the root cause, the disease. Treat the disease and the pain will subside or go away. Do not treat and it will get worse.
They were right. A few weeks after starting dexamethasone and Velcade, the back pain disappeared completely. The treatment only made the pain better. I found fatigue and weight loss from chemo to be a more significant issue than pain. Later during treatment I developed peripheral neuropathy from Velcade, which hit me significantly harder than most. Even with significant pain in the legs from peripheral neuropathy, I feel I am much better off, and still alive, and in had less pain, than I would have been not receiving treatment to rid me of the disease and only receiving treatment to relieve the symptoms. Treating the disease for me was the best palliative care.
Sometimes I think people feel are afraid that chemo and radiation will cause great suffering and pain because a lot of people write about their experiences going through it to share with others, while people write less about experiences of not being treated, or what they are experiencing when treatment does not work, which is probably a lot worse. An easier choice may seem to avoid that and not fight the cancer and only be relieved for the discomfort and symptoms from the cancer.
I do not understand this as, from what I have seen, as cancer progresses for many there is only so much that can be done to relieve the pain and suffering. I think it can be naïve to think that, by not going through chemo and radiation, one is avoiding pain and suffering.
Having said all that, I am fairly young to have myeloma. I also can understand that for those who develop myeloma at an older age and may have existing significant health issues and a deteriorated quality of life, a decision to not go through chemo and radiation and let the disease run its course may be the best decision for them.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Palliative treatment from the onset?
Be aware that the "chemo" used for multiple myeloma is very different than the chemo one usually associates with cancer (hair falling out, severe nausea, etc).
When my husband was on Revlimid, Velcade, and dex, he had minimal side effects. The only time he had "traditional" chemo was for a few days before his stem cell transplant. Then he did go through a week of being pretty sick.
It is now almost 2 years later. He is on only Revlimid, and feels totally normal (healthy).
I'm glad you asked this question because I think many of your fears are going to be quieted by the responses you are going to get.
When my husband was on Revlimid, Velcade, and dex, he had minimal side effects. The only time he had "traditional" chemo was for a few days before his stem cell transplant. Then he did go through a week of being pretty sick.
It is now almost 2 years later. He is on only Revlimid, and feels totally normal (healthy).
I'm glad you asked this question because I think many of your fears are going to be quieted by the responses you are going to get.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Palliative treatment from the onset?
For me, palliative care was never an option I considered. I had been sick for 3 weeks, dizzy, no appetite, fatigued, flu-like feeling. I had just retired and wanted to enjoy this stage of my life, so when I was diagnosed, I wanted to do chemo right away. After a couple of treatments I no longer felt sick, started feeling good again, had a few side effects (bad headaches mostly) but those subsided. One permanent side effect from the Velcade was peripheral neuropathy and leg pain. The pain is mostly managed by Oxycontin, and doesn't prevent me from being active. In fact, if I sit still for too long the stiffness in my legs and knees gets worse.
I also had a stem cell transplant with heavy chemo beforehand and that made me sick for a couple of weeks (I was hospitalized for the procedure) with nausea and diarrhea. Also lost my hair. That was 2 months ago and I'm feeling very good now, but I'm not sure I would go through the transplant again. I have the early stages of myeloma, no bone lesions or organs affected, just the bone marrow. I'll have staging labs done in a few weeks to find out where I stand with this disease. I will possibly take maintenance chemo (a pill once a week).
All of this was done to extend my remission time. How long that will be is anyone's guess, but I'm being optimistic about it. When the myeloma comes back enough to cause problems, I may prefer palliative care at that time.
All the best to you. It's not an easy decision to make regardless of how you choose.
Donna
I also had a stem cell transplant with heavy chemo beforehand and that made me sick for a couple of weeks (I was hospitalized for the procedure) with nausea and diarrhea. Also lost my hair. That was 2 months ago and I'm feeling very good now, but I'm not sure I would go through the transplant again. I have the early stages of myeloma, no bone lesions or organs affected, just the bone marrow. I'll have staging labs done in a few weeks to find out where I stand with this disease. I will possibly take maintenance chemo (a pill once a week).
All of this was done to extend my remission time. How long that will be is anyone's guess, but I'm being optimistic about it. When the myeloma comes back enough to cause problems, I may prefer palliative care at that time.
All the best to you. It's not an easy decision to make regardless of how you choose.
Donna
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rosecitylady - Name: rosecitylady
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 61
Re: Palliative treatment from the onset?
toridon wrote:
....You must do whatever feels right for you. .Just don't let fear of chemo or radiation dictate your decision.. i wish you the best...
Hi toridon,
Your post is very encouraging. It's not that I'm afraid, but I'm still too hung up on what transpired with my son-in-law during his cancer treatment. My 2nd hang-up is that, practically throughout my life, I have been medication free, and the thought of putting poison into my body is somehow disturbing to me. But having my bones destroyed is even more disturbing and probably more painful.
Thank you for taking the time to reply.
....You must do whatever feels right for you. .Just don't let fear of chemo or radiation dictate your decision.. i wish you the best...
Hi toridon,
Your post is very encouraging. It's not that I'm afraid, but I'm still too hung up on what transpired with my son-in-law during his cancer treatment. My 2nd hang-up is that, practically throughout my life, I have been medication free, and the thought of putting poison into my body is somehow disturbing to me. But having my bones destroyed is even more disturbing and probably more painful.
Thank you for taking the time to reply.
Last edited by Kate on Tue Jan 29, 2013 6:24 pm, edited 1 time in total.
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Palliative treatment from the onset?
Hello Eric,
Thank you so much for your time in giving me your perspective regarding palliative care vs. chemo. I know what real pain is. Not knowing what I was dealing with, doctors sent me to physical therapy for my back pain until I refused to continue. During that time, I put up with horrific shoulder and back pain as well as neck pain and being unable to lay down comfortably or sleep at night - without medication.
Meanwhile, the 6th and 7th cervical vertebrae were "eaten up" by the cancer, and I had a severe case of neuropathy. So, to clarify, I'm not afraid of pain, but my thinking went more along the lines of: Why go through all the side effects that chemo causes when this treatment only extends my life a few extra months (I am not a candidate for stem cell transplant).
>Having said all that, I am fairly young to have myeloma. I also can understand that for those who develop myeloma at an older age and may have existing significant health issues and a deteriorated quality of life, a decision to not go through chemo and radiation and let the disease run its course may be the best decision for them>
Yes, you are not only fairly young, but remind me a lot of my son in law; especially as one of my favorite pics of him was the one (like you posted) on the bike with his helmet on. Fortunately, aside from multiple myeloma, I'm in excellent health -- perfect blood pressure, perfect this and that .... except for ...
>That was 2 months ago and I'm feeling very good now but I'm not sure I would go through the transplant again.>
Again Eric I am grateful for your contribution. I am leaning more to rethinking my "palliative care" position. I am waiting for a few more test results and will make up my mind then. Certainly, for sure, I will have to do something about the "left over cancer" from the neck surgery.
Thank you so much for your time in giving me your perspective regarding palliative care vs. chemo. I know what real pain is. Not knowing what I was dealing with, doctors sent me to physical therapy for my back pain until I refused to continue. During that time, I put up with horrific shoulder and back pain as well as neck pain and being unable to lay down comfortably or sleep at night - without medication.
Meanwhile, the 6th and 7th cervical vertebrae were "eaten up" by the cancer, and I had a severe case of neuropathy. So, to clarify, I'm not afraid of pain, but my thinking went more along the lines of: Why go through all the side effects that chemo causes when this treatment only extends my life a few extra months (I am not a candidate for stem cell transplant).
>Having said all that, I am fairly young to have myeloma. I also can understand that for those who develop myeloma at an older age and may have existing significant health issues and a deteriorated quality of life, a decision to not go through chemo and radiation and let the disease run its course may be the best decision for them>
Yes, you are not only fairly young, but remind me a lot of my son in law; especially as one of my favorite pics of him was the one (like you posted) on the bike with his helmet on. Fortunately, aside from multiple myeloma, I'm in excellent health -- perfect blood pressure, perfect this and that .... except for ...
>That was 2 months ago and I'm feeling very good now but I'm not sure I would go through the transplant again.>
Again Eric I am grateful for your contribution. I am leaning more to rethinking my "palliative care" position. I am waiting for a few more test results and will make up my mind then. Certainly, for sure, I will have to do something about the "left over cancer" from the neck surgery.
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Palliative treatment from the onset?
Hello rumnting,
Thanks for your reply. It will certainly help me to lean away from the palliative care - at least for right now.
Thanks for your reply. It will certainly help me to lean away from the palliative care - at least for right now.
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Palliative treatment from the onset?
Hi Donna,
>For me, palliative care was never an option I considered. I had been sick for 3 weeks, dizzy, no appetite, fatigued, flu-like feeling. I had just retired and wanted to enjoy this stage of my life so when I was diagnosed I wanted to do chemo right away.>
Well, maybe I am too spoiled in retiring and never having been sick. My husband and I had retired in 1982 and we lived the good and simple life. No, not very rich, but very frugal. So, like I said in an earlier post, my husband and I had a great life until multiple myeloma entered my life. Also, with the two destroyed vertebrae (I had an autograft from hip bones) and now more lytic lesions, I don't think my prognosis is that good.
I just want to be up-to-date and be prepared as well as informed when I have to make the decision for chemo. In fact, I probably should take the radiation therapy right now for my neck; on the other hand I could wait and do chemo first - that's according to doctors ???
>For me, palliative care was never an option I considered. I had been sick for 3 weeks, dizzy, no appetite, fatigued, flu-like feeling. I had just retired and wanted to enjoy this stage of my life so when I was diagnosed I wanted to do chemo right away.>
Well, maybe I am too spoiled in retiring and never having been sick. My husband and I had retired in 1982 and we lived the good and simple life. No, not very rich, but very frugal. So, like I said in an earlier post, my husband and I had a great life until multiple myeloma entered my life. Also, with the two destroyed vertebrae (I had an autograft from hip bones) and now more lytic lesions, I don't think my prognosis is that good.
I just want to be up-to-date and be prepared as well as informed when I have to make the decision for chemo. In fact, I probably should take the radiation therapy right now for my neck; on the other hand I could wait and do chemo first - that's according to doctors ???
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Palliative treatment from the onset?
Hi Kate.
I know a man who is in his 60's and had a couple of his spinal vertebrae destroyed before he was diagnosed with multiple myeloma. He is now 4 inches shorter and said they rebuilt his vertebrae with something man made and he had the stem cell replacement (bone marrow transplant) March 2012. He said it was very painful.
I will be 56 this spring and, like you, have been incredibly healthy all my life. It was such a shock to hear that I had cancer last May 2012, because I felt great - I had no symptoms that I could feel. I had a couple of years of abnormal blood test results, so I went in to my general practitioner and she immediately got me in to a nephrologist.
My nephrologist did many tests, but finally did a biopsy of my kidney (sent off to Mayo Clinic to be evaluated) and found that my kidneys had been 75% destroyed by light chains - which are a by product of the cancerous plasma cells in multiple myeloma. He immediately put me on a "renal diet" (which I will be on for the rest of my life) and basically said I had to stop the multiple myeloma in order to save what was left of my kidneys.
So, I know how hard it is to choose to take chemo (which is poison, you are right). Taking the chemo in the summer and fall made me feel worse than I had felt - the dex made me puffy and I didn't feel mentally clear. Then I went to Denver for the bone marrow transplant (BMT) Oct 31 and came home mid December.
I feel great now. I am about 70 days from my transplant and I am not 100% back to my old self, but I am probably 90%. I walk on a treadmill 30 min every morning and do exercises at home 3 times a week to get stronger. The doctor will start me on low dose Revlimid Feb 17, I have neuropathy in my feet from the Velcade - I walk like I have club feet first thing in the morning, but then they loosen up.
My quality of life is very good right now. I wear a hat around the house and wear a wig when I go to work ( I work from about 10-4 right now) but I am just starting to grow peach fuzz.
I know what you mean about wondering if it is worth the chemo and BMT to live a couple more years. My transplant coordinator told me that the average length of remission after a BMT (or SCT) is 2 years. That sounded pretty depressing. But I do feel good right now, and I am grateful to have a couple more years of life.
I think it is important to accept that we are mortal - no one lives forever, and our future (those of us with multiple myeloma) is more cloudy than most. But life seems sweeter and the little things do not bother me as much as they used to. I am very excited to spend some time with my grandchildren this spring and summer - I have not been allowed to go see them (they live out of town), nor go to church nor go see my mother at the nursing home, because of the flu and norovirus this year.
My grandmother got leukemia when she was 69, though, and she chose no chemo or radiation. She said, "if it is my time to go, it is my time to go". She only lived about 7 months after she was diagnosed.
God Bless you and guide your decision.
C
I know a man who is in his 60's and had a couple of his spinal vertebrae destroyed before he was diagnosed with multiple myeloma. He is now 4 inches shorter and said they rebuilt his vertebrae with something man made and he had the stem cell replacement (bone marrow transplant) March 2012. He said it was very painful.
I will be 56 this spring and, like you, have been incredibly healthy all my life. It was such a shock to hear that I had cancer last May 2012, because I felt great - I had no symptoms that I could feel. I had a couple of years of abnormal blood test results, so I went in to my general practitioner and she immediately got me in to a nephrologist.
My nephrologist did many tests, but finally did a biopsy of my kidney (sent off to Mayo Clinic to be evaluated) and found that my kidneys had been 75% destroyed by light chains - which are a by product of the cancerous plasma cells in multiple myeloma. He immediately put me on a "renal diet" (which I will be on for the rest of my life) and basically said I had to stop the multiple myeloma in order to save what was left of my kidneys.
So, I know how hard it is to choose to take chemo (which is poison, you are right). Taking the chemo in the summer and fall made me feel worse than I had felt - the dex made me puffy and I didn't feel mentally clear. Then I went to Denver for the bone marrow transplant (BMT) Oct 31 and came home mid December.
I feel great now. I am about 70 days from my transplant and I am not 100% back to my old self, but I am probably 90%. I walk on a treadmill 30 min every morning and do exercises at home 3 times a week to get stronger. The doctor will start me on low dose Revlimid Feb 17, I have neuropathy in my feet from the Velcade - I walk like I have club feet first thing in the morning, but then they loosen up.
My quality of life is very good right now. I wear a hat around the house and wear a wig when I go to work ( I work from about 10-4 right now) but I am just starting to grow peach fuzz.
I know what you mean about wondering if it is worth the chemo and BMT to live a couple more years. My transplant coordinator told me that the average length of remission after a BMT (or SCT) is 2 years. That sounded pretty depressing. But I do feel good right now, and I am grateful to have a couple more years of life.
I think it is important to accept that we are mortal - no one lives forever, and our future (those of us with multiple myeloma) is more cloudy than most. But life seems sweeter and the little things do not bother me as much as they used to. I am very excited to spend some time with my grandchildren this spring and summer - I have not been allowed to go see them (they live out of town), nor go to church nor go see my mother at the nursing home, because of the flu and norovirus this year.
My grandmother got leukemia when she was 69, though, and she chose no chemo or radiation. She said, "if it is my time to go, it is my time to go". She only lived about 7 months after she was diagnosed.
God Bless you and guide your decision.
C
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
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