Hi All,
As you can tell I am a new member. Late December 2012 I had to be hospitalized and a cervical corpectomy was performed. Two of my cervical vertebras (C6 and C7) had been destroyed by the cancer and the surgeon replaced those with bone from my hip and now I have a steel plate from C5 to T1. This very rare neck tumor compressed my spinal cord, caused neuropathy and affected my voice box a bit. I felt like new-born after the surgery and am PAIN-FREE since. The tumor was diagnosed as Plasmacytoma. Meanwhile we know that I have multiple myeloma. The surgeon stated that due to the location of the tumor he could only get 80 to 90 percent out and suggested radiation. If it would come back aggressively, I could again face paralysis from the head down - not to speak of the horrible back pains I experienced prior to diagnosis.
My son in law died of cancer and I saw him wither away while on chemo. A friend of mine has leukemia. She said, she doesn't know what normal is anymore. So I am neither a friend of radiation nor chemo. I would prefer to just go palliative but think I need to do something about the neck in short order. 10 treatments of a low dose of radiation were suggested WITHOUT any side effects (maybe a little difficulty in swallowing). Thereafter I need to decide if I want chemo for the rest or just let nature take its course. Since chemo is systemic, I asked the radiologist/oncologist if I could just have chemo for all and he said that this was possible. Are there some on the forum who didn't get very sick on chemo? I searched for radiation and the forum stated "no results". Quite a few people I talked to cautioned me strongly against radiation. Did any of you have radiation or have some more in depth information than what I can find on the net?
ANY input/suggestions would be appreciated as I am very hesitant to have either treatment done. I'm a female and 67 years old and I absolutely prefer quality over quantity at this stage of my life. My husband is supportive, regardless of the choice.
Forums
Re: Concerned about radiation/chemo side effects
Hi, Kate,
I guess it would be fair to say that there are so many different reactions to chemo that the decision is a difficult one to make. I have the double whammy of multiple myeloma/Amyloidosis, both of which are treated with similar combination of meds. I have never had radiation, however, had pre stem cell transplant treatment with a combination of Velcade,Revlimid and dexamethasone, which I tolerated fairly well. Prior to the transplant I received one high dose melphalen infusion which wiped me out! I really felt the effects at that point and almost five months later still recovering.
During those five months, I had another hospitalization and some other stutter steps in recuperation. I also believe in quality of life rather than quantity. With that being said I can honestly say I wouldn't trade the last few months for anything. I was able to spend some quality holidays with my family and I truly believe that it has helped all of us appreciate and prioritize the really important things in life.
I will be continuing maintenance therapy and take one day at a time. Some days are not so great but the good days I really try to make great. Best of luck in your decision, know its a tough one to make.
I guess it would be fair to say that there are so many different reactions to chemo that the decision is a difficult one to make. I have the double whammy of multiple myeloma/Amyloidosis, both of which are treated with similar combination of meds. I have never had radiation, however, had pre stem cell transplant treatment with a combination of Velcade,Revlimid and dexamethasone, which I tolerated fairly well. Prior to the transplant I received one high dose melphalen infusion which wiped me out! I really felt the effects at that point and almost five months later still recovering.
During those five months, I had another hospitalization and some other stutter steps in recuperation. I also believe in quality of life rather than quantity. With that being said I can honestly say I wouldn't trade the last few months for anything. I was able to spend some quality holidays with my family and I truly believe that it has helped all of us appreciate and prioritize the really important things in life.
I will be continuing maintenance therapy and take one day at a time. Some days are not so great but the good days I really try to make great. Best of luck in your decision, know its a tough one to make.
-
lindagc - Name: linda
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Concerned about radiation/chemo side effects
HI Kate, I am sorry to hear about the terrible time you have had with multiple myeloma thus far, but it is good to know how surgeries and radiation have helped you so far.
In regards to chemotherapies I wouldn't assume that they will be really difficult to tolerate. There are several differerent types of treatment available, from proteasome inhibitors, to immunolodatory agents (sp), and more. Not all of them will cause intolerable side effects. With Myeloma we do have some medications that are very effective but that are quite specific to destroying the myeloma tumour cells.
There is lots of information on the Beacon site about treatments, and also if you email the International Myeloma Foundation (IMF), they can send you a whole series of booklets, or email them to you. I think that you have already gone through a lot of treatments, and that what might be prescribed next wouldn't be so bad. Also, are you seeing a myeloma specialist...you probably need to discuss your options with someone who is very knowledgeable about myeloma.
In regards to chemotherapies I wouldn't assume that they will be really difficult to tolerate. There are several differerent types of treatment available, from proteasome inhibitors, to immunolodatory agents (sp), and more. Not all of them will cause intolerable side effects. With Myeloma we do have some medications that are very effective but that are quite specific to destroying the myeloma tumour cells.
There is lots of information on the Beacon site about treatments, and also if you email the International Myeloma Foundation (IMF), they can send you a whole series of booklets, or email them to you. I think that you have already gone through a lot of treatments, and that what might be prescribed next wouldn't be so bad. Also, are you seeing a myeloma specialist...you probably need to discuss your options with someone who is very knowledgeable about myeloma.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Concerned about radiation/chemo side effects
Sorry, I re-read your post and you have NOT had radiation. I haven't had radiation myself but many others have, so maybe someone else can comment on that! I have had several types of chemotherapies though, and they helped me out a lot!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Concerned about radiation/chemo side effects
Hi all,
Thank you lindacg and Nancy for your insightful replies. Yes, Nancy, as of yet I had neither treatment. Next, I want to apologize. I should have posted most of my introductory post under "personal stories" and the rest under "treatments and side effects." (I think I will post a modified copy of this under "treatments...")
Anyway, I did a poor job in getting my point across. The main objective of my post was this: I wanted to find out if there are some on the forum who had radiation and or chemo and would they do it again or just have chemo. (keep in mind I would need radiation on the neck/spine).
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?
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.
Thank you lindacg and Nancy for your insightful replies. Yes, Nancy, as of yet I had neither treatment. Next, I want to apologize. I should have posted most of my introductory post under "personal stories" and the rest under "treatments and side effects." (I think I will post a modified copy of this under "treatments...")
Anyway, I did a poor job in getting my point across. The main objective of my post was this: I wanted to find out if there are some on the forum who had radiation and or chemo and would they do it again or just have chemo. (keep in mind I would need radiation on the neck/spine).
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?
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.
-
Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Concerned about radiation/chemo side effects
This is a copy of my post to the same question in the Treatments and Side Effects forum.
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 some 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 was 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 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 relive 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.
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 some 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 was 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 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 relive 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.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Concerned about radiation/chemo side effects
Hi Kate-
Your diagnosis and initial therapy sounds almost identical to my own. If you are going to get cancer, the stage and treatability of your myeloma is better than most.
The most important aspect of your situation is that a single plasmacytoma indicates that you are in an early stage of multiple myeloma. And early stage translates into longer life. Low dose radiation will cause relatively minor side effects probably such as dry mouth and swallowing problems but I think the risk/reward is worth it.
As for chemotherapy, I would give strong consideration to one of the chemo regimens currently in use to put you in remission. Curcumin has been shown to both increase the efficacy of Revlimid/Thalidomide as well as reduce the risk of side effects. If your multiple myeloma is at an early stage, like your radiation, you should consider low dose of whatever chemo regimen that you choose to further reduce this risk of negative side effects. Since you mention palliative care, high QOL and fear of side effects, you may benefit from reading the NYT's article linked below talking about palliative chemotherapy for a breast cancer patient looking for a high QOL..
http://opinionator.blogs.nytimes.com/2013/01/19/when-the-patient-knows-best/
Curcumin, vitamin D3, omega-3, plus lifestyle practices such as moderate exercise, nutrition, etc. may also increase the efficacy of your low dose chemo/radiation as well as reduce side effects.
Good luck and hang in there.
David Emerson
Your diagnosis and initial therapy sounds almost identical to my own. If you are going to get cancer, the stage and treatability of your myeloma is better than most.
The most important aspect of your situation is that a single plasmacytoma indicates that you are in an early stage of multiple myeloma. And early stage translates into longer life. Low dose radiation will cause relatively minor side effects probably such as dry mouth and swallowing problems but I think the risk/reward is worth it.
As for chemotherapy, I would give strong consideration to one of the chemo regimens currently in use to put you in remission. Curcumin has been shown to both increase the efficacy of Revlimid/Thalidomide as well as reduce the risk of side effects. If your multiple myeloma is at an early stage, like your radiation, you should consider low dose of whatever chemo regimen that you choose to further reduce this risk of negative side effects. Since you mention palliative care, high QOL and fear of side effects, you may benefit from reading the NYT's article linked below talking about palliative chemotherapy for a breast cancer patient looking for a high QOL..
http://opinionator.blogs.nytimes.com/2013/01/19/when-the-patient-knows-best/
Curcumin, vitamin D3, omega-3, plus lifestyle practices such as moderate exercise, nutrition, etc. may also increase the efficacy of your low dose chemo/radiation as well as reduce side effects.
Good luck and hang in there.
David Emerson
Re: Concerned about radiation/chemo side effects
Hi Kate,
I was a similar age to Eric when I was diagnosed and agree with him regards to treatment vs palliative. Before diagnosis the pain in my spine was excruciating at times, my movement was extremely restricted and after one cycle of chemo I found I could move again without pain. You know what it is like to be in pain and then have it alleviated. Am I back to where I was prior to cancer, no and I dont think I will get back there but then my body/life is not the same as it was prior to having children either (mine are gorgeous).
All the best,
Libby
I was a similar age to Eric when I was diagnosed and agree with him regards to treatment vs palliative. Before diagnosis the pain in my spine was excruciating at times, my movement was extremely restricted and after one cycle of chemo I found I could move again without pain. You know what it is like to be in pain and then have it alleviated. Am I back to where I was prior to cancer, no and I dont think I will get back there but then my body/life is not the same as it was prior to having children either (mine are gorgeous).
All the best,
Libby
-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Concerned about radiation/chemo side effects
Hi David,
Thanks for your reply which I really appreciated. Regarding curcumin, I had also thought of using that as I have read quite an interesting article in .pdf format in a foreign language which is very positive on the use and the value of it and listed it as beneficial "just on its own". What brand do you buy and how much do you use with chemo?
I have the xrays and report and the blood tests etc. and will see the doctor for an official diagnosis this week. Of course, I did lots of checking on my own.
My x-ray report states
1. There is at least one lytic lesion in the calvarium and at least one lytic lesion in the proximal left humerus. Multiple other smaller lytic lesions are suspected in the humeri bilaterally although assessment is limited due to osteopenia. These lytic lesions are consistent with multiple myeloma.
2. Sclerotic lesion in the right scapula is of questionable significance and may represent a benign bone island, however an osteoblastic metastatic deposit cannot be excluded.
According to the ISS I appear to be in stage 2 (albumin 3.4, Beta-2 microglobulin 3.2), hopefully; with the D.S. (or considering C.R.A.B.) I could be in stage III.
The decision I still wrestle with is:
1) Do I have radiation first for the "residue of the cancer" from the plasmacytoma which the surgeon removed? or
2) should I have chemo first. As it is systemic it should get the stuff on my neck and everywhere else - right? (someone correct me If I am wrong, please) and then
3) I could always get radiation on my neck afterward if still needed.
I thought radiation for multiple myeloma was for bone pain only and I don't have any where I was operated ???
When I mentioned chemo in lieu of radiation to the radiologist, he said that "could be done" but didn't give me ANY MORE info to enable me to think about it and make a decision. Maybe some others were in my boat, or just know the answer, and could advise me or inform me.
I think in lifestyle practice I am way ahead of others. My hubby and I were on the Dr. Esselstyn diet - on our own. That's the one xpresident Clinton is on - ONLY plant based food). Prior to that I was a vegetarian. Since the hospital couldn't accommodate me, well I became somewhat less strict on the diet.
And last but not least, I really, really enjoyed the article that your post linked me too. It was so appropriate for me and my perspective on MY situation.
Kate
Thanks for your reply which I really appreciated. Regarding curcumin, I had also thought of using that as I have read quite an interesting article in .pdf format in a foreign language which is very positive on the use and the value of it and listed it as beneficial "just on its own". What brand do you buy and how much do you use with chemo?
I have the xrays and report and the blood tests etc. and will see the doctor for an official diagnosis this week. Of course, I did lots of checking on my own.
My x-ray report states
1. There is at least one lytic lesion in the calvarium and at least one lytic lesion in the proximal left humerus. Multiple other smaller lytic lesions are suspected in the humeri bilaterally although assessment is limited due to osteopenia. These lytic lesions are consistent with multiple myeloma.
2. Sclerotic lesion in the right scapula is of questionable significance and may represent a benign bone island, however an osteoblastic metastatic deposit cannot be excluded.
According to the ISS I appear to be in stage 2 (albumin 3.4, Beta-2 microglobulin 3.2), hopefully; with the D.S. (or considering C.R.A.B.) I could be in stage III.
The decision I still wrestle with is:
1) Do I have radiation first for the "residue of the cancer" from the plasmacytoma which the surgeon removed? or
2) should I have chemo first. As it is systemic it should get the stuff on my neck and everywhere else - right? (someone correct me If I am wrong, please) and then
3) I could always get radiation on my neck afterward if still needed.
I thought radiation for multiple myeloma was for bone pain only and I don't have any where I was operated ???
When I mentioned chemo in lieu of radiation to the radiologist, he said that "could be done" but didn't give me ANY MORE info to enable me to think about it and make a decision. Maybe some others were in my boat, or just know the answer, and could advise me or inform me.
I think in lifestyle practice I am way ahead of others. My hubby and I were on the Dr. Esselstyn diet - on our own. That's the one xpresident Clinton is on - ONLY plant based food). Prior to that I was a vegetarian. Since the hospital couldn't accommodate me, well I became somewhat less strict on the diet.
And last but not least, I really, really enjoyed the article that your post linked me too. It was so appropriate for me and my perspective on MY situation.
Kate
-
Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Concerned about radiation/chemo side effects
Hi Libby,
I am sure your children are gorgeous by just looking at your picture. Thank you for your encouraging words. I think because I have been pain free since my surgery, I just want to continue to be so and not take any medication. BUT, I have done more research, talked to acquaintances and friends with cancer and I especially take the posts on this forum serious - as we are all on a similar journey with respect to the type of cancer which befriended us.
So, I'm 90 percent trending towards chemo, especially since I talked to a bone marrow transplant nurse ( who incidentally thinks similar to me) who encouraged chemo but not a very aggressive type.
Kate
I am sure your children are gorgeous by just looking at your picture. Thank you for your encouraging words. I think because I have been pain free since my surgery, I just want to continue to be so and not take any medication. BUT, I have done more research, talked to acquaintances and friends with cancer and I especially take the posts on this forum serious - as we are all on a similar journey with respect to the type of cancer which befriended us.
So, I'm 90 percent trending towards chemo, especially since I talked to a bone marrow transplant nurse ( who incidentally thinks similar to me) who encouraged chemo but not a very aggressive type.
Kate
-
Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
12 posts
• Page 1 of 2 • 1, 2
Return to Member Introductions / Personal Stories