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Re: Palliative treatment from the onset?
Hi Kate, I hope you continue with treatments since lots of patients do manage quite well even though they got off to a rocky start with myeloma. Would you be considering having an auto stem cell transplant? I am just wondering since I think that if you were radiation could inhibit the collection of your stem cells..am not a doctor but have heard that! You would have to verify that .. but anyways, I hope you stop the spread of the myeloma soon and then get better quality of life too.
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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: Palliative treatment from the onset?
i was 47 when diagnosed, between stages 2 and 3, with multiple myeloma. I had been feeling tired and had a bump on my head that never went down. Exrays revealed lesions, blood tests confirmed myeloma. At the outset i never considered just palliative due to my age and the ages of my children. I was treated aggresively and have had a stem cell transplant and 4 additional therapies.
Now, there is little left for me to try and my M spike is increasing. The chemo i am on, Velcade, Cyclophosphamide and dex, is not working and i am finding it harder and harder to rebound from the weekly treatment. We will try melphalan next, and i am praying for a clinical trial.
I have now investigaged palliative, and know at some point i will tire of fighting. i can understand those who do not want to put toxins in their bodies, it is true, and it is hard sometimes. For me, i have had 5 great years and would like more but there is a part of me that is starting to say, enough. When that day will come I dont know.
What i do know is that every person has to shape their journey and make the decisions that feel right for them. What is important is to love them regardless of what they decide. Each person has the right to choose. Palliative is a viable option for some people and the care given there is second to none.
Sometimes those of us on chemo realize that the name of the game is buying time, till the next treatment option becomes available. Multiple myeloma is one of those cancers that has a lot of new things coming, if that is the route you want to take, as i have. I do not have any regrets in my decision
Now, there is little left for me to try and my M spike is increasing. The chemo i am on, Velcade, Cyclophosphamide and dex, is not working and i am finding it harder and harder to rebound from the weekly treatment. We will try melphalan next, and i am praying for a clinical trial.
I have now investigaged palliative, and know at some point i will tire of fighting. i can understand those who do not want to put toxins in their bodies, it is true, and it is hard sometimes. For me, i have had 5 great years and would like more but there is a part of me that is starting to say, enough. When that day will come I dont know.
What i do know is that every person has to shape their journey and make the decisions that feel right for them. What is important is to love them regardless of what they decide. Each person has the right to choose. Palliative is a viable option for some people and the care given there is second to none.
Sometimes those of us on chemo realize that the name of the game is buying time, till the next treatment option becomes available. Multiple myeloma is one of those cancers that has a lot of new things coming, if that is the route you want to take, as i have. I do not have any regrets in my decision
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Kathy in Canada
Re: Palliative treatment from the onset?
Hi Kathy in Canada,
We used to live next to the US/Canadian Border Crossing on US 93 which takes you to Kalispell, Mt. Great country.
Yes, if I would have been 47 at time of diagnosis I would not even have the questions I now have. I hope very much that you can find some medication(s) that your body will respond to.
I am glad that you also are at peace to go palliative if needed. I am at peace myself, that's why I am not overexcited in rushing to get the radiology done this minute. If I do "the stuff", then probably the radiation first to hopefully prevent new bone-loss next to the 2 vertebrae which were already destroyed and prevent a new spinal court compression. One steel plate is enough for me. The bone pain, the compression and the neuropathy were 10x worse than the neurosurgery I had.
My daughter wants me to come to Florida. She lives super close to MD Anderson and says they have so much more expertise than my hematologist/oncologist. Yet, he said none of his MMpatients has died so far. (Maybe he only has 1 or 2). I need to ask him. I had opined to him that if that's the case than he has a better record than the honchos from the big cancer centers and asked him if he had published any papers. The answer was no! But he said, he can get me in touch with some of his patients and I told him I would appreciate that. Let's see.
Anyway, I appreciate your input and want to wait to get a few more rest results before I decide what to do and when.
We used to live next to the US/Canadian Border Crossing on US 93 which takes you to Kalispell, Mt. Great country.
Yes, if I would have been 47 at time of diagnosis I would not even have the questions I now have. I hope very much that you can find some medication(s) that your body will respond to.
I am glad that you also are at peace to go palliative if needed. I am at peace myself, that's why I am not overexcited in rushing to get the radiology done this minute. If I do "the stuff", then probably the radiation first to hopefully prevent new bone-loss next to the 2 vertebrae which were already destroyed and prevent a new spinal court compression. One steel plate is enough for me. The bone pain, the compression and the neuropathy were 10x worse than the neurosurgery I had.
My daughter wants me to come to Florida. She lives super close to MD Anderson and says they have so much more expertise than my hematologist/oncologist. Yet, he said none of his MMpatients has died so far. (Maybe he only has 1 or 2). I need to ask him. I had opined to him that if that's the case than he has a better record than the honchos from the big cancer centers and asked him if he had published any papers. The answer was no! But he said, he can get me in touch with some of his patients and I told him I would appreciate that. Let's see.
Anyway, I appreciate your input and want to wait to get a few more rest results before I decide what to do and when.
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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 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.
As one person replied the chemos for multiple myeloma are not the same as those given to others. My guess is you wont experience what your son in law went thru. I too had been medication free for the 64 years of my life before diagnosis. The only supplement i took was Vit C with D. i was never sick and was the healthiest 64 yr old I knew. The healthier you are the better you will tolerate the treatment protocol. I am now on meds to prevent getting some of the side effects of treatment. I too viewed meds and chemos as toxins so it was most difficult to enter the world of medicine and chemos. i exercise a lot and visualize the chemo targeting the multiple myeloma cells, bypassing my healthy cells the then the exerciing flushing the toxins out n flushing out of my sysytem, leaving my healhy cells in tact. my oncologist says studies show that those that exercise when on chemo get better response and tlerate the chemo better. So far so good. i'm had no damage to the healthy cells, kidneys etc. and they told me yesteraday, i am the star responder .Find yourself a good onclogist that you can work with, take on a positive attitude that the treatment will work and keep living. it was not easy for me to enter this new normal but we do eventually adjust.
> 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.
As one person replied the chemos for multiple myeloma are not the same as those given to others. My guess is you wont experience what your son in law went thru. I too had been medication free for the 64 years of my life before diagnosis. The only supplement i took was Vit C with D. i was never sick and was the healthiest 64 yr old I knew. The healthier you are the better you will tolerate the treatment protocol. I am now on meds to prevent getting some of the side effects of treatment. I too viewed meds and chemos as toxins so it was most difficult to enter the world of medicine and chemos. i exercise a lot and visualize the chemo targeting the multiple myeloma cells, bypassing my healthy cells the then the exerciing flushing the toxins out n flushing out of my sysytem, leaving my healhy cells in tact. my oncologist says studies show that those that exercise when on chemo get better response and tlerate the chemo better. So far so good. i'm had no damage to the healthy cells, kidneys etc. and they told me yesteraday, i am the star responder .Find yourself a good onclogist that you can work with, take on a positive attitude that the treatment will work and keep living. it was not easy for me to enter this new normal but we do eventually adjust.
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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?
Wow. What a question. I ask myself that question all the time. I had Velcade and Dex as induction therapy. The Velcade gave me Grade 4 PN and it was terrible and I still have to take 16mg of hydromorphone each day. Then Radiation, then Revlimid, then a ASCT that sapped all my energy away. So now the only way I feel my feet and legs is by pain and I function each day like a Zombie, because I am so tired and weak. But I do keep busy.
So, would I do it all over again? At times I think to myself and say NO, but other times I think that if I hadn't went through all of this and died early, would I have been regretting the fact that I refused the treatments on my death bed. It is just human nature to survive and I think most people like myself would opt for the best chance for a longer life.
My Best and God Bless
So, would I do it all over again? At times I think to myself and say NO, but other times I think that if I hadn't went through all of this and died early, would I have been regretting the fact that I refused the treatments on my death bed. It is just human nature to survive and I think most people like myself would opt for the best chance for a longer life.
My Best and God Bless
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Palliative treatment from the onset?
Hi Toridon,
Thanks for letting me know that you also were medication free. One of my habits is to read a lot, think a lot, question a lot and then make a decision. Last time it was my husband. He had also been medication free for almost all his life and then coronary artery bypass grafting (CABG) x 5 and the angiogram had only shown 3 arteries .... hmmm
He was on 13 meds when he left the operating room and had drama/surgery induced diabetes.
Three months later he was off all medications (one of them had a 2 year half life, yes 24 months and was black box labeled by the FDA). He is on a vitamin/supplement protocol that we worked out ourselves by studying 2 time Nobel Laureate Linus Pauling's work and suggestions, plus a good diet. It's 20 months since surgery and he is doing so well that his cardiologist referred him to his primary doctor 5 months after surgery. Yet he told him 2 weeks after surgery he will have to take such and such for the rest of his life. My husband smiled and said: "watch us".
I'm frustrated that my body gave in to something that cannot be "controlled" in a similar way as according to my opinion we are talking apples and oranges if we were to compare. So, because of that I am grateful for all the responses I am getting.
Thanks for letting me know that you also were medication free. One of my habits is to read a lot, think a lot, question a lot and then make a decision. Last time it was my husband. He had also been medication free for almost all his life and then coronary artery bypass grafting (CABG) x 5 and the angiogram had only shown 3 arteries .... hmmm
He was on 13 meds when he left the operating room and had drama/surgery induced diabetes.Three months later he was off all medications (one of them had a 2 year half life, yes 24 months and was black box labeled by the FDA). He is on a vitamin/supplement protocol that we worked out ourselves by studying 2 time Nobel Laureate Linus Pauling's work and suggestions, plus a good diet. It's 20 months since surgery and he is doing so well that his cardiologist referred him to his primary doctor 5 months after surgery. Yet he told him 2 weeks after surgery he will have to take such and such for the rest of his life. My husband smiled and said: "watch us".
I'm frustrated that my body gave in to something that cannot be "controlled" in a similar way as according to my opinion we are talking apples and oranges if we were to compare. So, because of that I am grateful for all the responses I am getting.
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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 George,
>Wow. What a question. I ask myself that question all the time. I had Velcade and Dex as induction therapy. The Velcade gave me Grade 4 PN and it was terrible and I still have to take 16mg of hydromorphone each day. Then Radiation, then Revlimid, then a ASCT that sapped all my energy away. So now the only way I feel my feet and legs is by pain and I function each day like a Zombie, because I am so tired and weak. >
Thank you so very much for your reply. Revlimid, Velcade and Dex is what the doctor wants to give me and I wasn't hot on it because I had READ about the side effects of each. And PN I don't want to see, hear or smell. I went through that and was even sent to a P.T. when (by then) two of my neck-bones had already been destroyed, plus....
I really don't know what to say, George. Your treatment appears to be not beneficial but then only you are the judge of: is it worth it or not and you seem to cope with it your way. All I can say is that a friend of a friend's oncologist got cancer himself and wow, all of a sudden the one who didn't even want to know alternative treatment is seeking it out. Enough said! No, not!
In fact, someone had said they will never find a cure for cancer, it's big business. A cure will always be 20 years in front of us.
I know some of you might say now, but they are getting more and more novel medications. To that many will say, yes, and that's the way it will stay.
>Wow. What a question. I ask myself that question all the time. I had Velcade and Dex as induction therapy. The Velcade gave me Grade 4 PN and it was terrible and I still have to take 16mg of hydromorphone each day. Then Radiation, then Revlimid, then a ASCT that sapped all my energy away. So now the only way I feel my feet and legs is by pain and I function each day like a Zombie, because I am so tired and weak. >
Thank you so very much for your reply. Revlimid, Velcade and Dex is what the doctor wants to give me and I wasn't hot on it because I had READ about the side effects of each. And PN I don't want to see, hear or smell. I went through that and was even sent to a P.T. when (by then) two of my neck-bones had already been destroyed, plus....
I really don't know what to say, George. Your treatment appears to be not beneficial but then only you are the judge of: is it worth it or not and you seem to cope with it your way. All I can say is that a friend of a friend's oncologist got cancer himself and wow, all of a sudden the one who didn't even want to know alternative treatment is seeking it out. Enough said! No, not!
In fact, someone had said they will never find a cure for cancer, it's big business. A cure will always be 20 years in front of us.
I know some of you might say now, but they are getting more and more novel medications. To that many will say, yes, and that's the way it will stay.
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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?
Aloha Kate,
Thank-you for asking the question. I started my chemo this week and have been struggling with the question of whether I am doing the right thing. The other folks' responses here have helped to make me comfortable with my decision.
I too have been drug free (other than recreational) most of my adult life. This was a hell of a decision to me also. I can see here by everybody's posts that the stages of our lives and our disease are important factors. For me, two young boys made the decision for me.
Thanks to all of you who posted your replies here. I am little less afraid today.
Good luck in your treatment!
Aloha
Tom
Thank-you for asking the question. I started my chemo this week and have been struggling with the question of whether I am doing the right thing. The other folks' responses here have helped to make me comfortable with my decision.
I too have been drug free (other than recreational) most of my adult life. This was a hell of a decision to me also. I can see here by everybody's posts that the stages of our lives and our disease are important factors. For me, two young boys made the decision for me.
Thanks to all of you who posted your replies here. I am little less afraid today.
Good luck in your treatment!
Aloha
Tom
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tscshale - Name: Tom
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 04/12
- Age at diagnosis: 49
Re: Palliative treatment from the onset?
Kate wrote:
> Hi All,
>
> Because of the side effects, I would prefer to have palliative treatment
> from the onset.
Twenty years ago I watched (was the caretaker for) my husband as he went through sheer hell with chemotherapy, surgery and radiation for neck cancer. Between the cancer and the treatment for it, he became unable to swallow, and he spent his last nine months on a feeding tube directly through the abdominal wall into the stomach; on oxygen, unable to move, in constant pain.
I decided then that if I ever were told I had cancer, I would decline chemotherapy and simply go with 'palliative care:' that there was no WAY I was going to go through that, not after what Jim went through.
Then last week I was told, officially, that I had Multiple Myeloma, and that I would probably be on chemotherapy for the rest of my life, period. Y'know, I never once considered not doing it? I have no idea what the side effects are going to be; I start in a week, as soon as I get some dental work done.
For some reason, I figure...I've seen the worst. If Jim could handle it with grace, even though he lost his fight, then who am I to give up? There might come a time when I say 'enough is enough...' I don't know. However, that time isn't now.
Surprised the heck out of me, too! After all these years of declaring that I would NOT 'do chemo' (and sincerely meaning it), all of a sudden NOT doing it is unthinkable? I'm not quite certain what that says about me, actually.
Now, I know that my situation is different from yours, as yours is different from everybody else; we are all unique. For instance, my bones are fine, even though I have 75% plasma cell load in my bone marrow and a relatively high M-spike. I'm lucky and I KNOW that. I can't even imagine having to make a decision like this if I were already in great pain from the bone destruction or other organ damage--and I certainly am not going to tell you to 'do' or 'do not.' I'm just telling a story.
> Hi All,
>
> Because of the side effects, I would prefer to have palliative treatment
> from the onset.
Twenty years ago I watched (was the caretaker for) my husband as he went through sheer hell with chemotherapy, surgery and radiation for neck cancer. Between the cancer and the treatment for it, he became unable to swallow, and he spent his last nine months on a feeding tube directly through the abdominal wall into the stomach; on oxygen, unable to move, in constant pain.
I decided then that if I ever were told I had cancer, I would decline chemotherapy and simply go with 'palliative care:' that there was no WAY I was going to go through that, not after what Jim went through.
Then last week I was told, officially, that I had Multiple Myeloma, and that I would probably be on chemotherapy for the rest of my life, period. Y'know, I never once considered not doing it? I have no idea what the side effects are going to be; I start in a week, as soon as I get some dental work done.
For some reason, I figure...I've seen the worst. If Jim could handle it with grace, even though he lost his fight, then who am I to give up? There might come a time when I say 'enough is enough...' I don't know. However, that time isn't now.
Surprised the heck out of me, too! After all these years of declaring that I would NOT 'do chemo' (and sincerely meaning it), all of a sudden NOT doing it is unthinkable? I'm not quite certain what that says about me, actually.
Now, I know that my situation is different from yours, as yours is different from everybody else; we are all unique. For instance, my bones are fine, even though I have 75% plasma cell load in my bone marrow and a relatively high M-spike. I'm lucky and I KNOW that. I can't even imagine having to make a decision like this if I were already in great pain from the bone destruction or other organ damage--and I certainly am not going to tell you to 'do' or 'do not.' I'm just telling a story.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Palliative treatment from the onset?
Hi Dianaiad,
you wrote:
>Surprised the heck out of me, too! After all these years of declaring that I would NOT 'do chemo' (and sincerely meaning it), all of a sudden NOT doing it is unthinkable? I'm not quite certain what that says about me, actually. >
My 45 year old son in law went through chemo, terrible side effects and death four years ago - all to see and be with his two little girls (4 and 6) for another 15 months.
It certainly is not an easy decision. I said the same about both chemo and radiation, then. In my case, however, I had the choice of the vertebrae in the neck getting more cancer or continuing treatment with radiation where the surgeon left off when he gave me bone grafts there. After 10 weeks of mulling it over, I chose radiation (with all possible short/long term side effects) over the horrible pain I had when the plasmacytoma was discovered in my neck.
Now, I still haven't made up my mind on chemo.
Wishing you the best.
Kate
you wrote:
>Surprised the heck out of me, too! After all these years of declaring that I would NOT 'do chemo' (and sincerely meaning it), all of a sudden NOT doing it is unthinkable? I'm not quite certain what that says about me, actually. >
My 45 year old son in law went through chemo, terrible side effects and death four years ago - all to see and be with his two little girls (4 and 6) for another 15 months.
It certainly is not an easy decision. I said the same about both chemo and radiation, then. In my case, however, I had the choice of the vertebrae in the neck getting more cancer or continuing treatment with radiation where the surgeon left off when he gave me bone grafts there. After 10 weeks of mulling it over, I chose radiation (with all possible short/long term side effects) over the horrible pain I had when the plasmacytoma was discovered in my neck.
Now, I still haven't made up my mind on chemo.
Wishing you the best.
Kate
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
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