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To chemo or not chemo


#1

I had a SS tumor removed from my right elbow. I had 25 days of radiation on the tumor before they removed it. The docs got great clean margins and they felt it was contained yet they say I need chemo. Will or can chemo make me worse or hasten my demise or what? Help, I need input please! Thx


#2

Though there is not strong evidence through studies that adjuvant chemo therapy after sarcoma reduces the chance of metastasis or local recurrence, I would be inclined to do it anyway. I chose not to, and now wish that I had. I'm guessing they want to use AIM (adriamycin ifosfamide mesna). Though this can be pretty harsh, I would still do it. I don't think you will regret doing it, even if the cancer comes back. If you don't do it however, and then it comes back you may regret it. I know that i do. It's really a personal choice though, and you can find qualified Sarcoma oncologists that won't recommend doing chemo, and others that will. Where are you being treated by the way?


#3

Here is a recent article that suggests several potential benefits of doing chemotherapy:

http://www.ncbi.nlm.nih.gov/pubmed/22297839


#4

Hi , based on my research I think that it is worthwhile doing it. I wrote some notes on my blog here http://getbetterget.blogspot.co.nz/2010/12/chemo-or-not-chemo-that-… plus look in the comments for some useful links posted by others.


#5

Hi, My son had Synovial in his knee. The doctors said the best prognosis is always to amputate. My son did not, until the cancer came back and then he amputated. He always regretted the decision and he suffered a lot more because of this. Radiation and chemo do not work on this cancer. All of the articles state that chemo and radiation is adjuviante. Another word for just in case. He had seven rounds of the strongest chemo available and 35 rounds of radiation. You will live just as long with out it and have a better quality of life. The cancer normally returns within five years at the intial site and in the lungs. I recommend going to the Gerson treatment center in San Diego. This is organic and will build your body up.My son also tried a vaccine made from a large tumor that was removed from his medial steinum. This was done in Texas Mary Crowley. He went to Sloan Kettering and all they recommend is chemo. even when they do maps they still slip the chemo in even though its not necessary. I would look to Europe they have better treatments. Best wishes for your life, stay close to God and pray. My son went to be with the Lord last march , he was 28. I would say amputate the arm. No chemo.


#6

Surprised they didn't do chemo with the radiation, before and after the surgury.

The chemo wont kill you, another tumor may. My sons tumor was just above the left elbow. surgury was Jan. 2009, He was back on the ice, playing hockey that Oct. His last MRI & CT scan were this past Jan. and all is good. Three months of chemo before, w/month of radiation, three monthe of chemo post surgury. How old are you?


#7

I had synovial sarcoma in March 2008, in my left arm just above my elbow, closer to my tricep. My doctor at the time pretty much said that its a coin flip as to the effectiveness. Synovial, unlike many other kinds of sarcoma does respond to chemo. He didn't give me much of a choice so I had 6 rounds of chemo. Yes it sucked, but I figured if I hadn't done it and it came back than that would have been even worse!


#8

Hi. This is popey79 the guy who wrote the chemo or not to Chemo? Thx for your response. The issue I have is that I had 5, yes five surgeons who removed my tumor, gave me the ulna nerve transplant along with medial. Nerve work and an artery dissection. This tumor grew to the size of a softball (includes swelling) in 4 days. I immediately had an attempted surgery turned into a biopsy. I started radiation soon there after and went through 25 RT sessions. The doctors and I were crystal clear that if there was
ANY doubt about metastasis or clear margins they were to take the arm, no questions, period. We had brachey therapy set up, they said it was not needed. Needless to say that we are quite pleased with my treatment so far!! They’ve been great. Now, the chemo. I mean I’m hospitaliized once every two years for reactions to medicines, I mean anaphylactic shock stuff! So what the heck is a POISON going to do to me? The nice
Thing about this cancer, at least in My case, it grows so fast that I’ll be able to catch it quick. I’ll know within hours or days if it starts to grow because it’s SO hard a d SO fast. Since they were initially VERY successful with the RT and the unreal surgery, wouldn’t you have doubt about chemo when the chemo could kill me and it does not improve your odds that much. I dont know what to do. I will sleep on it. Thx for listening!
Best wishes and great health,
S

Drake said:

Though there is not strong evidence through studies that adjuvant chemo therapy after sarcoma reduces the chance of metastasis or local recurrence, I would be inclined to do it anyway. I chose not to, and now wish that I had. I’m guessing they want to use AIM (adriamycin ifosfamide mesna). Though this can be pretty harsh, I would still do it. I don’t think you will regret doing it, even if the cancer comes back. If you don’t do it however, and then it comes back you may regret it. I know that i do. It’s really a personal choice though, and you can find qualified Sarcoma oncologists that won’t recommend doing chemo, and others that will. Where are you being treated by the way?


#9

I live in western Colorado. Initial tests were done here but I was told to go to St. Joesephs in Denver. I saw Dr. Young. Sharp guy, great surgeon, oozing with talent, deserved "oozing". I had RT at St. Josephs an'd final surgery at St. Lukes, right across the street from St. Joes. Saw oncologist there too. They recomend the same cocktail you stated in your email.Here's the thing. All my life i have had terrible reactions to many drugs. Not just allewrgies...anaphylectic shock...heart has sropped, and I have a very healthy heart. So I have nearly died about 35-45 times in my life (50 yrs now)
from medicine much less the poison they give you during chemo. I've faced so many serious illnesses, prognosis, surgeries, jungle expeditions, extreme mountain climbing and so much more in my life. I have never had fear even close to what I feel about chemo. Heck, I have a 27 inch inscisi0n/scar on my right arm that hurts so bad and I have much, much less use of that arm than before ( I am blessed tho!). When they first told me they would have to take my arm, I was at peace with it. I was put to sleep FOR SURGERY knowing that when I was going to wake up that I would have no arm...I was at peace with that. I woke up with my arm actually some what disappointed because at firsat they were saying how much muscle, nerves, arteries they had to remove and I was wondering "Am I going to have just a numb limb kind of flapping at my side getting hurt all the time? The arm works well and is getting better daily but I was at peace for amputaTING A LIMB AND NOT CHEMO??? SO WHY THE HECK DO I HAVE SO MUCH ANGST ABOUT CHEMO?
popey79 said:

Hi. This is popey79 the guy who wrote the chemo or not to Chemo? Thx for your response. The issue I have is that I had 5, yes five surgeons who removed my tumor, gave me the ulna nerve transplant along with medial. Nerve work and an artery dissection. This tumor grew to the size of a softball (includes swelling) in 4 days. I immediately had an attempted surgery turned into a biopsy. I started radiation soon there after and went through 25 RT sessions. The doctors and I were crystal clear that if there was
ANY doubt about metastasis or clear margins they were to take the arm, no questions, period. We had brachey therapy set up, they said it was not needed. Needless to say that we are quite pleased with my treatment so far!! They've been great. Now, the chemo. I mean I'm hospitaliized once every two years for reactions to medicines, I mean anaphylactic shock stuff! So what the heck is a POISON going to do to me? The nice
Thing about this cancer, at least in My case, it grows so fast that I'll be able to catch it quick. I'll know within hours or days if it starts to grow because it's SO hard a d SO fast. Since they were initially VERY successful with the RT and the unreal surgery, wouldn't you have doubt about chemo when the chemo could kill me and it does not improve your odds that much. I dont know what to do. I will sleep on it. Thx for listening!
Best wishes and great health,
S

Drake said:

Though there is not strong evidence through studies that adjuvant chemo therapy after sarcoma reduces the chance of metastasis or local recurrence, I would be inclined to do it anyway. I chose not to, and now wish that I had. I'm guessing they want to use AIM (adriamycin ifosfamide mesna). Though this can be pretty harsh, I would still do it. I don't think you will regret doing it, even if the cancer comes back. If you don't do it however, and then it comes back you may regret it. I know that i do. It's really a personal choice though, and you can find qualified Sarcoma oncologists that won't recommend doing chemo, and others that will. Where are you being treated by the way?


#10

By the way Popey, do you know what drugs you are allergic to?


#11

I remember feeling much more fearful about chemo than surgery myself, and I don't have a history of bad reactions to drugs. I think no matter how much you analyze the decision, you're going to need to go with your gut feeling about this. If you could get together a list of bad reactions you have had to your Oncologist maybe that would impact his/her recommendation. If you do decide to do AIM, I think you can take some comfort that you would be under very close supervision. And though ifosfomide and adriamycin are toxic I don't know if that is very predictive to you having an allergic reaction. You would also have to take into consideration the other drugs that are taken to control nausea, and low white blood counts as well though. I personally had a much easier time with chemo than I thought I would, but everyone is different. I hope I don't seem unhelpful, but I think you should go with your gut feeling on this. And I think you will have more peace of mind after you have made your decision. Not to be cliche, but often your first instinct is the best one.

popey79 said:

I live in western Colorado. Initial tests were done here but I was told to go to St. Joesephs in Denver. I saw Dr. Young. Sharp guy, great surgeon, oozing with talent, deserved "oozing". I had RT at St. Josephs an'd final surgery at St. Lukes, right across the street from St. Joes. Saw oncologist there too. They recomend the same cocktail you stated in your email.Here's the thing. All my life i have had terrible reactions to many drugs. Not just allewrgies...anaphylectic shock...heart has sropped, and I have a very healthy heart. So I have nearly died about 35-45 times in my life (50 yrs now)
from medicine much less the poison they give you during chemo. I've faced so many serious illnesses, prognosis, surgeries, jungle expeditions, extreme mountain climbing and so much more in my life. I have never had fear even close to what I feel about chemo. Heck, I have a 27 inch inscisi0n/scar on my right arm that hurts so bad and I have much, much less use of that arm than before ( I am blessed tho!). When they first told me they would have to take my arm, I was at peace with it. I was put to sleep FOR SURGERY knowing that when I was going to wake up that I would have no arm...I was at peace with that. I woke up with my arm actually some what disappointed because at firsat they were saying how much muscle, nerves, arteries they had to remove and I was wondering "Am I going to have just a numb limb kind of flapping at my side getting hurt all the time? The arm works well and is getting better daily but I was at peace for amputaTING A LIMB AND NOT CHEMO??? SO WHY THE HECK DO I HAVE SO MUCH ANGST ABOUT CHEMO?
popey79 said:

Hi. This is popey79 the guy who wrote the chemo or not to Chemo? Thx for your response. The issue I have is that I had 5, yes five surgeons who removed my tumor, gave me the ulna nerve transplant along with medial. Nerve work and an artery dissection. This tumor grew to the size of a softball (includes swelling) in 4 days. I immediately had an attempted surgery turned into a biopsy. I started radiation soon there after and went through 25 RT sessions. The doctors and I were crystal clear that if there was
ANY doubt about metastasis or clear margins they were to take the arm, no questions, period. We had brachey therapy set up, they said it was not needed. Needless to say that we are quite pleased with my treatment so far!! They've been great. Now, the chemo. I mean I'm hospitaliized once every two years for reactions to medicines, I mean anaphylactic shock stuff! So what the heck is a POISON going to do to me? The nice
Thing about this cancer, at least in My case, it grows so fast that I'll be able to catch it quick. I'll know within hours or days if it starts to grow because it's SO hard a d SO fast. Since they were initially VERY successful with the RT and the unreal surgery, wouldn't you have doubt about chemo when the chemo could kill me and it does not improve your odds that much. I dont know what to do. I will sleep on it. Thx for listening!
Best wishes and great health,
S

Drake said:

Though there is not strong evidence through studies that adjuvant chemo therapy after sarcoma reduces the chance of metastasis or local recurrence, I would be inclined to do it anyway. I chose not to, and now wish that I had. I'm guessing they want to use AIM (adriamycin ifosfamide mesna). Though this can be pretty harsh, I would still do it. I don't think you will regret doing it, even if the cancer comes back. If you don't do it however, and then it comes back you may regret it. I know that i do. It's really a personal choice though, and you can find qualified Sarcoma oncologists that won't recommend doing chemo, and others that will. Where are you being treated by the way?


#12

I’m so sorry to hear about your son. Thank you for sharing his last years and his struggle. He’s in a better place and he is with God, I have no doubt. I too shall be with Him someday. You know I told the drs that if there was ANY doubt, amputate. They removed a lot of tissue from the arm and we were going to do brachy therapy afterwards…they said there’s no reason to do that because it was so clean. I don’t know what I’m going to do about the chemo! Pray for me during this most important decision. I mean I caught this the first day this tumor started growing! We were all over this from the start. I have a surgical nurse for a wife and we knew something was up by day two! Ahhh!
I will pray for you, for your loss. I can’t imagine the pain you are still going through most likely.
Best wishes and Gods blessings to you and yours,
Popey

Synovialmom said:

Hi, My son had Synovial in his knee. The doctors said the best prognosis is always to amputate. My son did not, until the cancer came back and then he amputated. He always regretted the decision and he suffered a lot more because of this. Radiation and chemo do not work on this cancer. All of the articles state that chemo and radiation is adjuviante. Another word for just in case. He had seven rounds of the strongest chemo available and 35 rounds of radiation. You will live just as long with out it and have a better quality of life. The cancer normally returns within five years at the intial site and in the lungs. I recommend going to the Gerson treatment center in San Diego. This is organic and will build your body up.My son also tried a vaccine made from a large tumor that was removed from his medial steinum. This was done in Texas Mary Crowley. He went to Sloan Kettering and all they recommend is chemo. even when they do maps they still slip the chemo in even though its not necessary. I would look to Europe they have better treatments. Best wishes for your life, stay close to God and pray. My son went to be with the Lord last march , he was 28. I would say amputate the arm. No chemo.


#13

I started my RT on my 50th b-day! That was 5 months ago.

Marshall Novack said:

Surprised they didn’t do chemo with the radiation, before and after the surgury.

The chemo wont kill you, another tumor may. My sons tumor was just above the left elbow. surgury was Jan. 2009, He was back on the ice, playing hockey that Oct. His last MRI & CT scan were this past Jan. and all is good. Three months of chemo before, w/month of radiation, three monthe of chemo post surgury. How old are you?


#14

Penicillin, sulpha drugs and many more that I dont even know about! I get blood clots from Celebrex & Vioxx, Cipro makes my bones feel like they are being crushed. I’m just scared!

Elodie Espesset said:

By the way Popey, do you know what drugs you are allergic to?


#15

Popey:

I agree with Drake go with your instinct but the most important thing is NO FEAR! and NO REGRETS!

Love and Prayer,!

Synovial Mom


#16

Thank you for your kind words. I also know for sure he is with the Lord. In fact God in a miraculous way let me know exactly when he was entering heaven; I am at total peace and know I will see Nick again . You are in my prayers. All of the suffering will be worth it, in the end. God Bless you, comfort you and give you wisdom and much love for the journey.

SSM



popey79 said:

I'm so sorry to hear about your son. Thank you for sharing his last years and his struggle. He's in a better place and he is with God, I have no doubt. I too shall be with Him someday. You know I told the drs that if there was ANY doubt, amputate. They removed a lot of tissue from the arm and we were going to do brachy therapy afterwards....they said there's no reason to do that because it was so clean. I don't know what I'm going to do about the chemo! Pray for me during this most important decision. I mean I caught this the first day this tumor started growing! We were all over this from the start. I have a surgical nurse for a wife and we knew something was up by day two! Ahhh!
I will pray for you, for your loss. I can't imagine the pain you are still going through most likely.
Best wishes and Gods blessings to you and yours,
Popey

Synovialmom said:

Hi, My son had Synovial in his knee. The doctors said the best prognosis is always to amputate. My son did not, until the cancer came back and then he amputated. He always regretted the decision and he suffered a lot more because of this. Radiation and chemo do not work on this cancer. All of the articles state that chemo and radiation is adjuviante. Another word for just in case. He had seven rounds of the strongest chemo available and 35 rounds of radiation. You will live just as long with out it and have a better quality of life. The cancer normally returns within five years at the intial site and in the lungs. I recommend going to the Gerson treatment center in San Diego. This is organic and will build your body up.My son also tried a vaccine made from a large tumor that was removed from his medial steinum. This was done in Texas Mary Crowley. He went to Sloan Kettering and all they recommend is chemo. even when they do maps they still slip the chemo in even though its not necessary. I would look to Europe they have better treatments. Best wishes for your life, stay close to God and pray. My son went to be with the Lord last march , he was 28. I would say amputate the arm. No chemo.


#17

You'll see Nick again. If I get there before you do, I'll look him up! So sad all of this cancer garbage...se la vi!

Steve
Synovialmom said:

Popey:

I agree with Drake go with your instinct but the most important thing is NO FEAR! and NO REGRETS!

Love and Prayer,!

Synovial Mom


#18

I started my RT on my 50 th b-day I’m still 50. I’m going ahead with the chemo next week I wasn’t going to but I just found out I’m going to be a grandpa so I might want to stick around just a bit longer!!

Marshall Novack said:

Surprised they didn’t do chemo with the radiation, before and after the surgury.

The chemo wont kill you, another tumor may. My sons tumor was just above the left elbow. surgury was Jan. 2009, He was back on the ice, playing hockey that Oct. His last MRI & CT scan were this past Jan. and all is good. Three months of chemo before, w/month of radiation, three monthe of chemo post surgury. How old are you?


#19

Hello Popey, Congratulations that you are going to become a grandpa that is very happy news. I was curios to know how your treatments has been going. I assume that if you have done a cycle already with no adverse events that you must feel pretty relieved. Please write back and let us know.


#20

It is a difficult decision but, if Doctor advises to go for chemo you should consider to go for it. In my case Doctor left the decision to me and after consulting other Doctors I decided not to go for it. However it recurred within few months and also disease spread to lungs. Than I have to take six cycle of chemo and considering Surgery for Lungs.

Best of luck.