› Forums › General Melanoma Community › NO IDEA HOW TO MAKE THIS DECISION….ANY THOUGHTS MUCH APPRECIATED
- This topic has 39 replies, 6 voices, and was last updated 8 years, 2 months ago by
jamieth29.
- Post
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- January 26, 2016 at 1:45 am
Hi to everyone,
Many of you have responded in the past to some of my posted regarding treatment options for stage 3B……
I now feel like I have a decision to make and no idea how i am going to make it.
Quick recap: Recurrent 3B…..2 intransit/local recurrences….one 11/14 and one 11/15….
Vaccine Trial Spring 2015 after 1 st recurrence
Just completed (1/12/16) high dose radiation…..5 treatments…by the way, side effects VERY mild and now bad…..
Radiation for local control…thought being since both recurrences were in the same place, maybe this would do it …but of course we know it had no benefit for distant spread.
So of course my main concern at this point is what is the best option to prevent further recurrence and obvously distant mets?
Current MED ONC-
NYU- ANNA Pavlcik- whom I adore- will not give me IPI due to microscopic colitis from Vaccine trail…it reseovled on its won and never needed steroids, but as a result she will not give IPI even at 3mg…..she is reccomending Leukine now that I have compelted radiation.
MSK- Mike Postow- not inclined to offer IPI……
U PENN- I met with Lynn Shcucter last week…she feels IPI at 3 mg is the way to go, and feels my risk of ANOTHER recurrence is 50% or better…including distant mets….Pavlick never acts as if she thinks its quite that doom and gloom. Schucter seems to think she can manage any side effects and at the first sign of anything we would stop it…even if i only got one dose in, or maybe would get all 4…..
She was kind enough to call Dr. Pavlick and discuss with her….to explain her point of view……and mine…
Dr. Schucter knows that i am leaning towards doing something more aggressive…..I cant help but think that IF this does come back that i wont be able to live with myself……wondering why i didnt do something more agressive than leukine when i had the chance. (BUT i would hate to leave dr. Pavlick)
I know some will say it has almost the same chance of working if it does come back, but i think that is game changer…then having to live witht knowing you are now stage IV, something all of us hope to prevent.
I am scheduled to see Dr. Pavlick on Monday…..Dr. Schucter gave me her thoughts on waht i should say to dr. pavlick…
Just curious to hear anyone else's opinions….TOP DOCs with completely different opinions.
Schcuter said to me" I hate when we put patients in this position"…no wrong answer, but all differing opinions.
Thoughts friends?
THANKS!
Jenny
- Replies
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- January 26, 2016 at 1:46 am
TYPO-
re: radiation, side effects very mild AND NOT BAD!!!!!!
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- January 26, 2016 at 2:13 am
Hi Jenny,
I feel for your confusion. You have responded to me before and may recall that we are in a similar situation. I did the ipi at 3mg and progressed but still same stage. I was able to manage that medicine without any major side effects but many do have significant side effects. That being said the dr. are getting so much better at managing them that the risk may be less than when it was first tried at stage 3.
At the end of the day you have to decide what you can live with. Can you watch and wait and be okay with a recurrence should it happen? It is a very reasonable course of action. However, if you feel that you will always kick yourself for not trying anything and everything than thats another situation all together.
Whatever you decide is the right decision for you and you have to go forward without any regrets.
I will be sending positive thoughts and prayers your way and wish you the best with this, too common, terrible decision.
Good luck!
Nancy
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- January 26, 2016 at 2:58 pm
Hi nancy- thanks for your response…..I know I cant just watch and wait, so in my case the options I have are Leukine and or IPI at 3, witching doctors (though I am still going to see if my current one will give me IPI if I tell her I want to take the more aggresive approach)
Such tough decisions…if I remembe correclty you are now going to start radiation and Interferon…..
I just completed radiation, and all side effects have been very mild…mine was on the neck and all i've had is a bad sore throat with some swallowing problems (though much improved now) and a minor rash that itches…..
I was prepared for so much worse based on waht I'd read so i feel fortunate…..i had the hi dose regimen, 5 treatments over 2 1/2 weeks…..
I hope yours will be similar with minimal side effects…….
Interferon, well your know thats a controversial subject amongst this group…I hope you will tolerate as best as possible.
I'll know more "officall" after i see my Doc on modnay, followed by cat scnas..hopefully everything will still be clear…and then I'll have to make the decision on Leukine or IPI 3mg….
Not sure what will come to me between now and then, but we'll see…
thanks again for the note, all good thoughts coming your way from here!
Best,
jenny.
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- January 26, 2016 at 2:58 pm
Hi nancy- thanks for your response…..I know I cant just watch and wait, so in my case the options I have are Leukine and or IPI at 3, witching doctors (though I am still going to see if my current one will give me IPI if I tell her I want to take the more aggresive approach)
Such tough decisions…if I remembe correclty you are now going to start radiation and Interferon…..
I just completed radiation, and all side effects have been very mild…mine was on the neck and all i've had is a bad sore throat with some swallowing problems (though much improved now) and a minor rash that itches…..
I was prepared for so much worse based on waht I'd read so i feel fortunate…..i had the hi dose regimen, 5 treatments over 2 1/2 weeks…..
I hope yours will be similar with minimal side effects…….
Interferon, well your know thats a controversial subject amongst this group…I hope you will tolerate as best as possible.
I'll know more "officall" after i see my Doc on modnay, followed by cat scnas..hopefully everything will still be clear…and then I'll have to make the decision on Leukine or IPI 3mg….
Not sure what will come to me between now and then, but we'll see…
thanks again for the note, all good thoughts coming your way from here!
Best,
jenny.
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- January 26, 2016 at 2:58 pm
Hi nancy- thanks for your response…..I know I cant just watch and wait, so in my case the options I have are Leukine and or IPI at 3, witching doctors (though I am still going to see if my current one will give me IPI if I tell her I want to take the more aggresive approach)
Such tough decisions…if I remembe correclty you are now going to start radiation and Interferon…..
I just completed radiation, and all side effects have been very mild…mine was on the neck and all i've had is a bad sore throat with some swallowing problems (though much improved now) and a minor rash that itches…..
I was prepared for so much worse based on waht I'd read so i feel fortunate…..i had the hi dose regimen, 5 treatments over 2 1/2 weeks…..
I hope yours will be similar with minimal side effects…….
Interferon, well your know thats a controversial subject amongst this group…I hope you will tolerate as best as possible.
I'll know more "officall" after i see my Doc on modnay, followed by cat scnas..hopefully everything will still be clear…and then I'll have to make the decision on Leukine or IPI 3mg….
Not sure what will come to me between now and then, but we'll see…
thanks again for the note, all good thoughts coming your way from here!
Best,
jenny.
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- January 26, 2016 at 2:13 am
Hi Jenny,
I feel for your confusion. You have responded to me before and may recall that we are in a similar situation. I did the ipi at 3mg and progressed but still same stage. I was able to manage that medicine without any major side effects but many do have significant side effects. That being said the dr. are getting so much better at managing them that the risk may be less than when it was first tried at stage 3.
At the end of the day you have to decide what you can live with. Can you watch and wait and be okay with a recurrence should it happen? It is a very reasonable course of action. However, if you feel that you will always kick yourself for not trying anything and everything than thats another situation all together.
Whatever you decide is the right decision for you and you have to go forward without any regrets.
I will be sending positive thoughts and prayers your way and wish you the best with this, too common, terrible decision.
Good luck!
Nancy
-
- January 26, 2016 at 2:13 am
Hi Jenny,
I feel for your confusion. You have responded to me before and may recall that we are in a similar situation. I did the ipi at 3mg and progressed but still same stage. I was able to manage that medicine without any major side effects but many do have significant side effects. That being said the dr. are getting so much better at managing them that the risk may be less than when it was first tried at stage 3.
At the end of the day you have to decide what you can live with. Can you watch and wait and be okay with a recurrence should it happen? It is a very reasonable course of action. However, if you feel that you will always kick yourself for not trying anything and everything than thats another situation all together.
Whatever you decide is the right decision for you and you have to go forward without any regrets.
I will be sending positive thoughts and prayers your way and wish you the best with this, too common, terrible decision.
Good luck!
Nancy
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- January 26, 2016 at 2:32 am
May want to look at this..
https://clinicaltrials.gov/ct2/show/NCT02656706?term=bms-936558&%3Brcv_d=14&%3Bshow_rss=Y
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- January 26, 2016 at 2:32 am
May want to look at this..
https://clinicaltrials.gov/ct2/show/NCT02656706?term=bms-936558&%3Brcv_d=14&%3Bshow_rss=Y
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- January 26, 2016 at 2:32 am
May want to look at this..
https://clinicaltrials.gov/ct2/show/NCT02656706?term=bms-936558&%3Brcv_d=14&%3Bshow_rss=Y
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- January 26, 2016 at 3:00 pm
Hi Eric-
THank you so much for sending that link…..where did you find that rial? I havent seen ANYTHING like that anywhere…i wish it were being offered at more than that one institution, but it sounds interesting….not yet recruiting I may give them a call.
Tough decisions ….thanks again for your respsone!
jenny
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- January 26, 2016 at 3:00 pm
Hi Eric-
THank you so much for sending that link…..where did you find that rial? I havent seen ANYTHING like that anywhere…i wish it were being offered at more than that one institution, but it sounds interesting….not yet recruiting I may give them a call.
Tough decisions ….thanks again for your respsone!
jenny
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- January 26, 2016 at 3:00 pm
Hi Eric-
THank you so much for sending that link…..where did you find that rial? I havent seen ANYTHING like that anywhere…i wish it were being offered at more than that one institution, but it sounds interesting….not yet recruiting I may give them a call.
Tough decisions ….thanks again for your respsone!
jenny
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- January 26, 2016 at 4:24 am
Jenny,
It is such a hard decision i know. I think whatever you decide you have to convince yourself it was the best decision you could make at the time…because it was. Your well informed and have done your homework. Nobody knows what the right answer is its a roll of the dice. No matter what happens you have done what you could and are going to make the best decision with what we have to work with. Good thoughts and stay positive as you can.
Jamie -
- January 26, 2016 at 4:24 am
Jenny,
It is such a hard decision i know. I think whatever you decide you have to convince yourself it was the best decision you could make at the time…because it was. Your well informed and have done your homework. Nobody knows what the right answer is its a roll of the dice. No matter what happens you have done what you could and are going to make the best decision with what we have to work with. Good thoughts and stay positive as you can.
Jamie -
- January 26, 2016 at 4:24 am
Jenny,
It is such a hard decision i know. I think whatever you decide you have to convince yourself it was the best decision you could make at the time…because it was. Your well informed and have done your homework. Nobody knows what the right answer is its a roll of the dice. No matter what happens you have done what you could and are going to make the best decision with what we have to work with. Good thoughts and stay positive as you can.
Jamie-
- January 26, 2016 at 2:48 pm
thank you jamie- I know al of what you said is accurate….just hoping that someonne would have some thoughts……what would you do?
I know it a personal decision, but such a tough one!
How are you doing? Anything new in your next steps?
Thanks again for the good thoughts!
Jenny
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- January 26, 2016 at 2:48 pm
thank you jamie- I know al of what you said is accurate….just hoping that someonne would have some thoughts……what would you do?
I know it a personal decision, but such a tough one!
How are you doing? Anything new in your next steps?
Thanks again for the good thoughts!
Jenny
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- January 26, 2016 at 3:27 pm
I am still unsure what i am going to do myself. I’m in Chicago now having my leg checked over by plastic surgeon. Doing well and already walking about 2 miles per day. My Local doctor did put in for nivo but he was pretty sure insurance will deny it. If they do i think my next step is a scan and mri then decide on ipi. Right now I’m leaning a little towards not taking it. One of the reasons is i did braf as the neo adjuvant thing so I’m hoping maybe that did the trick, problem is the 1 lymph node still had small amount of disease. The area of my leg where i had all the reccurance issues they found no disease. There was disease on my leg for sure when i started braf. I just feel like i scratched and clawed my way to where i am and also like you dont want the doubt in the back if my head if i progress. The other thing i think about is that pd1 have shown better efficacy as front line treatment before ipi. It makes me wonder if i did ipi now if it would hurt my chances of responding to pd1 or pd1/ipi combo. Nobody knows and it sucks. Still a lot of thinking to do on my end but will decide in the next 2-3weeks. Hopefully scans come out clear been 4.5 months since i had one. -
- January 26, 2016 at 3:27 pm
I am still unsure what i am going to do myself. I’m in Chicago now having my leg checked over by plastic surgeon. Doing well and already walking about 2 miles per day. My Local doctor did put in for nivo but he was pretty sure insurance will deny it. If they do i think my next step is a scan and mri then decide on ipi. Right now I’m leaning a little towards not taking it. One of the reasons is i did braf as the neo adjuvant thing so I’m hoping maybe that did the trick, problem is the 1 lymph node still had small amount of disease. The area of my leg where i had all the reccurance issues they found no disease. There was disease on my leg for sure when i started braf. I just feel like i scratched and clawed my way to where i am and also like you dont want the doubt in the back if my head if i progress. The other thing i think about is that pd1 have shown better efficacy as front line treatment before ipi. It makes me wonder if i did ipi now if it would hurt my chances of responding to pd1 or pd1/ipi combo. Nobody knows and it sucks. Still a lot of thinking to do on my end but will decide in the next 2-3weeks. Hopefully scans come out clear been 4.5 months since i had one. -
- January 26, 2016 at 3:27 pm
I am still unsure what i am going to do myself. I’m in Chicago now having my leg checked over by plastic surgeon. Doing well and already walking about 2 miles per day. My Local doctor did put in for nivo but he was pretty sure insurance will deny it. If they do i think my next step is a scan and mri then decide on ipi. Right now I’m leaning a little towards not taking it. One of the reasons is i did braf as the neo adjuvant thing so I’m hoping maybe that did the trick, problem is the 1 lymph node still had small amount of disease. The area of my leg where i had all the reccurance issues they found no disease. There was disease on my leg for sure when i started braf. I just feel like i scratched and clawed my way to where i am and also like you dont want the doubt in the back if my head if i progress. The other thing i think about is that pd1 have shown better efficacy as front line treatment before ipi. It makes me wonder if i did ipi now if it would hurt my chances of responding to pd1 or pd1/ipi combo. Nobody knows and it sucks. Still a lot of thinking to do on my end but will decide in the next 2-3weeks. Hopefully scans come out clear been 4.5 months since i had one. -
- January 26, 2016 at 2:48 pm
thank you jamie- I know al of what you said is accurate….just hoping that someonne would have some thoughts……what would you do?
I know it a personal decision, but such a tough one!
How are you doing? Anything new in your next steps?
Thanks again for the good thoughts!
Jenny
-
- January 26, 2016 at 9:28 pm
Jenny,
I can only comment on what I did… at stage 3B you really do not have to do anythying other than watch and wait. I was 3C a few years ago and chose the watch and wait approach. My rationale was simple – if I have no measurable disease and I start a treatment, how do I know if it is working? Were the potential side effects of various treatments worth it if I had no measureable disease? If I progressed to stage 4 anyway, would I need to find a new treatment?
Ultimately, I did progress to stage 4 but I continue to be NED 2+ years following surgery so I am fortunate. I am following the same mindset at stage 4 as I did at stage 3 so I am not currently undergoing any treatment. I know you have some tough choices so hang in there.
Kevin
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- January 26, 2016 at 9:28 pm
Jenny,
I can only comment on what I did… at stage 3B you really do not have to do anythying other than watch and wait. I was 3C a few years ago and chose the watch and wait approach. My rationale was simple – if I have no measurable disease and I start a treatment, how do I know if it is working? Were the potential side effects of various treatments worth it if I had no measureable disease? If I progressed to stage 4 anyway, would I need to find a new treatment?
Ultimately, I did progress to stage 4 but I continue to be NED 2+ years following surgery so I am fortunate. I am following the same mindset at stage 4 as I did at stage 3 so I am not currently undergoing any treatment. I know you have some tough choices so hang in there.
Kevin
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- January 28, 2016 at 4:15 pm
Jenny, you've gotten good suggestions from others. I'll just add that I've been a patient of Dr. Schuchter's since my Stage IV diagnosis in 2013. I can't say enough great things about Dr. Schuchter and her team (including their ability to manage side effects, including colitis). I also understand that Dr. Pavlick is very good. Good luck.
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- January 28, 2016 at 4:15 pm
Jenny, you've gotten good suggestions from others. I'll just add that I've been a patient of Dr. Schuchter's since my Stage IV diagnosis in 2013. I can't say enough great things about Dr. Schuchter and her team (including their ability to manage side effects, including colitis). I also understand that Dr. Pavlick is very good. Good luck.
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- January 28, 2016 at 9:29 pm
Hi MAt- THanks for writng..I had thought about sending you a PM to ask your thoughts on Dr. Schucter….
I have been very impressed with her both times I've seen her.
It would be hard to leave Pavlick, (and her wonderful team) but if she really holds her ground and wont offer anything other than Leukine I may have to.
It would be scary though, to think that she feels SO STRONGLY against giving it me, and that I may do it anyway…though Shucter says side effects at 3mg vs 10mg are much better.
Will see how Monday appt goes…..
Thanks again,
jenny
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- January 28, 2016 at 9:29 pm
Hi MAt- THanks for writng..I had thought about sending you a PM to ask your thoughts on Dr. Schucter….
I have been very impressed with her both times I've seen her.
It would be hard to leave Pavlick, (and her wonderful team) but if she really holds her ground and wont offer anything other than Leukine I may have to.
It would be scary though, to think that she feels SO STRONGLY against giving it me, and that I may do it anyway…though Shucter says side effects at 3mg vs 10mg are much better.
Will see how Monday appt goes…..
Thanks again,
jenny
-
- January 28, 2016 at 9:29 pm
Hi MAt- THanks for writng..I had thought about sending you a PM to ask your thoughts on Dr. Schucter….
I have been very impressed with her both times I've seen her.
It would be hard to leave Pavlick, (and her wonderful team) but if she really holds her ground and wont offer anything other than Leukine I may have to.
It would be scary though, to think that she feels SO STRONGLY against giving it me, and that I may do it anyway…though Shucter says side effects at 3mg vs 10mg are much better.
Will see how Monday appt goes…..
Thanks again,
jenny
-
- January 28, 2016 at 4:15 pm
Jenny, you've gotten good suggestions from others. I'll just add that I've been a patient of Dr. Schuchter's since my Stage IV diagnosis in 2013. I can't say enough great things about Dr. Schuchter and her team (including their ability to manage side effects, including colitis). I also understand that Dr. Pavlick is very good. Good luck.
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- January 28, 2016 at 9:24 pm
Kevin-
Thanks for the note…..your logic makes perfect sense……BUT, i think so much of this is based on ones own "risk tolerance"….almost like being in the stock market these days….I may be more conservative there however…..
I guess after 2 reccurrences, thankfully still local, I feel like i have to do something more agressive….not sure how i would feel if it came back again, (local or distant)….my guess is I would be asking myself why I didnt do the IPI….of course things go in a number of directions….no real way to know whats best.
And wiht Jamies news aobut getting NIVO for adjuvant Stage III , though C not B, I am interested so see what other options may exist.
I'll know more after my appt on Modnay, but thanks so much writing.
Jenny
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- January 28, 2016 at 9:24 pm
Kevin-
Thanks for the note…..your logic makes perfect sense……BUT, i think so much of this is based on ones own "risk tolerance"….almost like being in the stock market these days….I may be more conservative there however…..
I guess after 2 reccurrences, thankfully still local, I feel like i have to do something more agressive….not sure how i would feel if it came back again, (local or distant)….my guess is I would be asking myself why I didnt do the IPI….of course things go in a number of directions….no real way to know whats best.
And wiht Jamies news aobut getting NIVO for adjuvant Stage III , though C not B, I am interested so see what other options may exist.
I'll know more after my appt on Modnay, but thanks so much writing.
Jenny
-
- January 28, 2016 at 9:24 pm
Kevin-
Thanks for the note…..your logic makes perfect sense……BUT, i think so much of this is based on ones own "risk tolerance"….almost like being in the stock market these days….I may be more conservative there however…..
I guess after 2 reccurrences, thankfully still local, I feel like i have to do something more agressive….not sure how i would feel if it came back again, (local or distant)….my guess is I would be asking myself why I didnt do the IPI….of course things go in a number of directions….no real way to know whats best.
And wiht Jamies news aobut getting NIVO for adjuvant Stage III , though C not B, I am interested so see what other options may exist.
I'll know more after my appt on Modnay, but thanks so much writing.
Jenny
-
- January 26, 2016 at 9:28 pm
Jenny,
I can only comment on what I did… at stage 3B you really do not have to do anythying other than watch and wait. I was 3C a few years ago and chose the watch and wait approach. My rationale was simple – if I have no measurable disease and I start a treatment, how do I know if it is working? Were the potential side effects of various treatments worth it if I had no measureable disease? If I progressed to stage 4 anyway, would I need to find a new treatment?
Ultimately, I did progress to stage 4 but I continue to be NED 2+ years following surgery so I am fortunate. I am following the same mindset at stage 4 as I did at stage 3 so I am not currently undergoing any treatment. I know you have some tough choices so hang in there.
Kevin
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