› Forums › General Melanoma Community › Post Surgery Treatment Plan
- This topic has 18 replies, 5 voices, and was last updated 11 years, 7 months ago by
UrsulaZ.
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- October 17, 2013 at 3:23 am
I met with the Radiation oncologist today and I meet with the melanoma oncologist tomorrow.
Stage IIIB Paratidectomy / Neck Dissection 3 weeks ago…2 nodes and parotid gland positive.
1st step Radiation 5x/week for 6 weeks…..starting next week.
I will see what the medical side has in store for me tomorrow when i go.
But can anyone tell me about experience with radiation?
Interested in side effects and if it was given with systemic treatment to follow )(ie yervoy trial or interferon) or is it in place of other treatment etc?
was it effective etc?
I guess no matter what i will know the plan tomorrow.
Thanks
Matt
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- October 17, 2013 at 1:07 pm
I dont have anything to offer inregards to what you are going through currently ( had chest radiation 11 years ago for breast cancer treatment… too different from what you will be doing) BUT… wanted to wish you well and hope you are healing up from your recent surgery and feeling better about having a plan going forward. To me the days of not knowing are some of the most challenging. Once we know the plan.. we can move forward 🙂
Just wanted to offer some encouragement this morning and let you know we are pulling for you!
Tina
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- October 17, 2013 at 1:07 pm
I dont have anything to offer inregards to what you are going through currently ( had chest radiation 11 years ago for breast cancer treatment… too different from what you will be doing) BUT… wanted to wish you well and hope you are healing up from your recent surgery and feeling better about having a plan going forward. To me the days of not knowing are some of the most challenging. Once we know the plan.. we can move forward 🙂
Just wanted to offer some encouragement this morning and let you know we are pulling for you!
Tina
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- October 17, 2013 at 8:00 pm
Matt,
I had a very similar surgery to yours in May of 2012. I followed it up with radiation and then with interferon. The radiation wasn't too bad, I didn't have much of an appetite while I got it. I can't grow a beard on that side anymore. I remember there was some sunburn like pain and then some shedding of that skin and some pretty bad throat irritation and some nasty mucous but overall it wasn't too bad.
I would say go for the Ipi trial. I just finished up my 4th dose of that a month ago and it was a walk in the park compared to Interferon.
Best of luck! And hope you have a good support team at home to help you through the next few months.
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- October 17, 2013 at 8:00 pm
Matt,
I had a very similar surgery to yours in May of 2012. I followed it up with radiation and then with interferon. The radiation wasn't too bad, I didn't have much of an appetite while I got it. I can't grow a beard on that side anymore. I remember there was some sunburn like pain and then some shedding of that skin and some pretty bad throat irritation and some nasty mucous but overall it wasn't too bad.
I would say go for the Ipi trial. I just finished up my 4th dose of that a month ago and it was a walk in the park compared to Interferon.
Best of luck! And hope you have a good support team at home to help you through the next few months.
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- October 17, 2013 at 8:25 pm
My son had radiation and it was not too bad, he was just tired and dryness of skin and flaking (under his arm)
I agree with the person above and go with the Ipi trial
my son did a year of interfern and a month after he stopped his pet scan showed 3 more spots plus a small 2m in his brain
he did 4 weeks of total brain radiation and just finished his 2nd dose of Ipi, side effects not too bad yet.
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- October 17, 2013 at 8:25 pm
My son had radiation and it was not too bad, he was just tired and dryness of skin and flaking (under his arm)
I agree with the person above and go with the Ipi trial
my son did a year of interfern and a month after he stopped his pet scan showed 3 more spots plus a small 2m in his brain
he did 4 weeks of total brain radiation and just finished his 2nd dose of Ipi, side effects not too bad yet.
-
- October 17, 2013 at 8:25 pm
My son had radiation and it was not too bad, he was just tired and dryness of skin and flaking (under his arm)
I agree with the person above and go with the Ipi trial
my son did a year of interfern and a month after he stopped his pet scan showed 3 more spots plus a small 2m in his brain
he did 4 weeks of total brain radiation and just finished his 2nd dose of Ipi, side effects not too bad yet.
-
- October 18, 2013 at 2:12 am
Great info….so beyond radiation…was interferon bad?
I met medical oncologist today at City Of Hope and he does not support interferon at all and has no trials…said that i should do radiation at City Of Hope and he would contact UCLA for
IPI trial vs interferon
and
Veumerafenib (SP) (Zelboraf) vs placebo
I am BRAF positive…so I may have 2 trial options…plus radiation or no trilas and just radiation etc.
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- October 18, 2013 at 2:12 am
Great info….so beyond radiation…was interferon bad?
I met medical oncologist today at City Of Hope and he does not support interferon at all and has no trials…said that i should do radiation at City Of Hope and he would contact UCLA for
IPI trial vs interferon
and
Veumerafenib (SP) (Zelboraf) vs placebo
I am BRAF positive…so I may have 2 trial options…plus radiation or no trilas and just radiation etc.
-
- October 18, 2013 at 2:12 am
Great info….so beyond radiation…was interferon bad?
I met medical oncologist today at City Of Hope and he does not support interferon at all and has no trials…said that i should do radiation at City Of Hope and he would contact UCLA for
IPI trial vs interferon
and
Veumerafenib (SP) (Zelboraf) vs placebo
I am BRAF positive…so I may have 2 trial options…plus radiation or no trilas and just radiation etc.
-
- October 18, 2013 at 3:04 pm
Interferon is very difficult I think for most people. I have been on quite a few different treatments and it was the most difficult of any in regards to side effects. I know everyone is different, but my Onc did say it affects most people like that regardless of age,etc. It also has indeed become controversal in terms of its effectiveness. Definitely one to do lots of homework about before making a choice. But…. the choice has to be what you are most comfortable with when everything is said and done. Amazing to actually have options…not too many years ago there were none!
Best to you as you figure your way,
Tina
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- October 18, 2013 at 3:04 pm
Interferon is very difficult I think for most people. I have been on quite a few different treatments and it was the most difficult of any in regards to side effects. I know everyone is different, but my Onc did say it affects most people like that regardless of age,etc. It also has indeed become controversal in terms of its effectiveness. Definitely one to do lots of homework about before making a choice. But…. the choice has to be what you are most comfortable with when everything is said and done. Amazing to actually have options…not too many years ago there were none!
Best to you as you figure your way,
Tina
-
- October 18, 2013 at 3:04 pm
Interferon is very difficult I think for most people. I have been on quite a few different treatments and it was the most difficult of any in regards to side effects. I know everyone is different, but my Onc did say it affects most people like that regardless of age,etc. It also has indeed become controversal in terms of its effectiveness. Definitely one to do lots of homework about before making a choice. But…. the choice has to be what you are most comfortable with when everything is said and done. Amazing to actually have options…not too many years ago there were none!
Best to you as you figure your way,
Tina
-
- October 17, 2013 at 8:00 pm
Matt,
I had a very similar surgery to yours in May of 2012. I followed it up with radiation and then with interferon. The radiation wasn't too bad, I didn't have much of an appetite while I got it. I can't grow a beard on that side anymore. I remember there was some sunburn like pain and then some shedding of that skin and some pretty bad throat irritation and some nasty mucous but overall it wasn't too bad.
I would say go for the Ipi trial. I just finished up my 4th dose of that a month ago and it was a walk in the park compared to Interferon.
Best of luck! And hope you have a good support team at home to help you through the next few months.
-
- October 17, 2013 at 1:07 pm
I dont have anything to offer inregards to what you are going through currently ( had chest radiation 11 years ago for breast cancer treatment… too different from what you will be doing) BUT… wanted to wish you well and hope you are healing up from your recent surgery and feeling better about having a plan going forward. To me the days of not knowing are some of the most challenging. Once we know the plan.. we can move forward 🙂
Just wanted to offer some encouragement this morning and let you know we are pulling for you!
Tina
-
- October 18, 2013 at 4:32 pm
hello Matt,
When I was at stage IIIB last year, I had lymphadenectomy followed by radiation and Interferon.
Differences in our cases are (1) the location (mine was on my upper thigh, and so the lymph nodes removed were in my inguinal region & abdomen), and (2) the BRAF status (I am BRAF negative).
Radiation was a walk in the park while it was happening — it was like a mild sunburn. But I was a bit unprepared for the depth of skin peeling & pain as a delayed reaction (maybe a couple of weeks after the radiation was done?). But: it was temporary.
I saw (and continue to see) Dr. Jedd Wolchok at Memorial Sloan-Kettering.
When I saw him at the stage IIIB stage, I was keen to do ANYTHING, anything I could do. I wanted active, aggressive treatment.
He was polite about my keenness to try Interferon, but expressed his skepticism about its effectiveness.
I was also keen to get my hands on Yervoy at that time (why would I wait until stage 4?!). His comment was that for stage 3 patients, Yervoy seemed to have maximum toxicitity with minimal effectiveness. (He was heavily involved in the Yervoy trials before it was FDA-approved, so his opinion had real weight with me).
I'm sure there are dissenting opinions on that, and it sounds as though you are seeking them out!
I was only able to tolerate the Interferon for four months, as it knocked me flat with depression and fatigue — I just couldn't function, and it didn't seem worth the minimal possibility of itts effectiveness.
But others have found it easier to tolerate — and some have been NED since interferon, so who knows! Everyone's melanoma seems so incredibly individual.
I have since progressed to stage IV, and am now on a combo trial of Yervoy and Nivolumab (an anti-PD-1 agent). But I don't regret my decision to try radiation and Interferon (nor do I regret my decision to stop Interferon when I coudln't handle it anymore!)
Good luck to you!
-Ursula
(ursulasmelanomablog.wordpress.com)
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- October 18, 2013 at 4:32 pm
hello Matt,
When I was at stage IIIB last year, I had lymphadenectomy followed by radiation and Interferon.
Differences in our cases are (1) the location (mine was on my upper thigh, and so the lymph nodes removed were in my inguinal region & abdomen), and (2) the BRAF status (I am BRAF negative).
Radiation was a walk in the park while it was happening — it was like a mild sunburn. But I was a bit unprepared for the depth of skin peeling & pain as a delayed reaction (maybe a couple of weeks after the radiation was done?). But: it was temporary.
I saw (and continue to see) Dr. Jedd Wolchok at Memorial Sloan-Kettering.
When I saw him at the stage IIIB stage, I was keen to do ANYTHING, anything I could do. I wanted active, aggressive treatment.
He was polite about my keenness to try Interferon, but expressed his skepticism about its effectiveness.
I was also keen to get my hands on Yervoy at that time (why would I wait until stage 4?!). His comment was that for stage 3 patients, Yervoy seemed to have maximum toxicitity with minimal effectiveness. (He was heavily involved in the Yervoy trials before it was FDA-approved, so his opinion had real weight with me).
I'm sure there are dissenting opinions on that, and it sounds as though you are seeking them out!
I was only able to tolerate the Interferon for four months, as it knocked me flat with depression and fatigue — I just couldn't function, and it didn't seem worth the minimal possibility of itts effectiveness.
But others have found it easier to tolerate — and some have been NED since interferon, so who knows! Everyone's melanoma seems so incredibly individual.
I have since progressed to stage IV, and am now on a combo trial of Yervoy and Nivolumab (an anti-PD-1 agent). But I don't regret my decision to try radiation and Interferon (nor do I regret my decision to stop Interferon when I coudln't handle it anymore!)
Good luck to you!
-Ursula
(ursulasmelanomablog.wordpress.com)
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- October 18, 2013 at 4:32 pm
hello Matt,
When I was at stage IIIB last year, I had lymphadenectomy followed by radiation and Interferon.
Differences in our cases are (1) the location (mine was on my upper thigh, and so the lymph nodes removed were in my inguinal region & abdomen), and (2) the BRAF status (I am BRAF negative).
Radiation was a walk in the park while it was happening — it was like a mild sunburn. But I was a bit unprepared for the depth of skin peeling & pain as a delayed reaction (maybe a couple of weeks after the radiation was done?). But: it was temporary.
I saw (and continue to see) Dr. Jedd Wolchok at Memorial Sloan-Kettering.
When I saw him at the stage IIIB stage, I was keen to do ANYTHING, anything I could do. I wanted active, aggressive treatment.
He was polite about my keenness to try Interferon, but expressed his skepticism about its effectiveness.
I was also keen to get my hands on Yervoy at that time (why would I wait until stage 4?!). His comment was that for stage 3 patients, Yervoy seemed to have maximum toxicitity with minimal effectiveness. (He was heavily involved in the Yervoy trials before it was FDA-approved, so his opinion had real weight with me).
I'm sure there are dissenting opinions on that, and it sounds as though you are seeking them out!
I was only able to tolerate the Interferon for four months, as it knocked me flat with depression and fatigue — I just couldn't function, and it didn't seem worth the minimal possibility of itts effectiveness.
But others have found it easier to tolerate — and some have been NED since interferon, so who knows! Everyone's melanoma seems so incredibly individual.
I have since progressed to stage IV, and am now on a combo trial of Yervoy and Nivolumab (an anti-PD-1 agent). But I don't regret my decision to try radiation and Interferon (nor do I regret my decision to stop Interferon when I coudln't handle it anymore!)
Good luck to you!
-Ursula
(ursulasmelanomablog.wordpress.com)
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