› Forums › General Melanoma Community › Treatment Decision and Scan Update
- This topic has 96 replies, 11 voices, and was last updated 8 years, 2 months ago by
jenny22.
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- February 17, 2016 at 4:42 pm
Hi all-
It seems like many of us had or are having scans right about now…..such anxiety provoking times.
I had mine yesterday, and am beyond thrilled to report all are clear…(Neck, Chest, Abdominal/Pelvic and Brain MRI) ….I am not sure why but I felt much more anxious and worried about these than past scans…I guess due to a 2nd recurrence……ANYWAY they are now behind me, and THANKFULLY all ok.
Now, on to another subject….one some might say can be a bit controversial….As many of you know I have been trying make a decision on what adjuvant treatment i will have. For some, too much information is not always good, but for me I find it imperative to make the best decision I can make given the available information at the time.
I want to prefice this by saying many have said " There is no WRONG answer"…and that appears to be true.
Here is my recap…maybe some of this info can or will be helpful to others trying to make similar decisions.
Most of you know I have seen 3 expert melanoma oncologists….After the 1st recurrence I particiated in a Vaccine Trial (CDX 1401 NY eso 1) After recent 2nd recurrence I had and just completed hi dose radiation on neck for local control)
Have seen:
MSK- Micheal Postow
NYU- my current ONC, Anna Pavlick
UPENN- Lynn Schucter
All from well respected and top notch institutions.
Neither MSK nor NYU is recommending IPI in the adjuvant setting for me. Dr. Schucter is recommendnig IPI at 3mg.
PLEASE know I am only writing all this for informational purposes, and by no means as an opinion for those making their own decisions.
MSK has told me they are not offering IPI (at any dose) in the adjuvant setting (not just for me, but in general) …..based on its approval and data at 10mg….and the toxitcity at 10mg….when i asked about using IPI at 3mg, he repeated that the data are not out yet (pending ecog 1609) and there are not any confirmed data showing its benefit at 3mg.
NYU- pretty much same as above…..
I know most here will think Leukine, may be useless, but Pavlick has reasons from her own clinical experience that there is SOME benefit, and with more mild toxicity. Also interesting is that they just submitted abstracts for upcoming ASCO, reveiwing MANY years of different vaccine trials (all varying types but all with NY ESO 1)..showing that patients who had partcipated had improved outcomes…and those who had recurrences had more local recurrences rather than distant….cant wait to read the offical release of this info at upcoming Asco. She also said she sees simlar results in her patients who've taken leukine. Sooooo, this may be controversial on this site (aka: Interfeon), but i think worthy of her experince. I do realize though that there are no studies confiming the benefits of leukine….BUT in my case since IPI is off the table, I feel like this makes sense.
I also asked if all 3Bs are created equal and both MSK and NYU told me NO, and why they feel I should do better than 3Bs overall.
I guess my point here is that EACH of is different, and our disease has its own nuances that make treatment plans so individual. I know the immediate thought is to do the most aggessive treatment available, but after MUCH research and many DRs appts, i have found that may not always be the right or best approach on an indivual basis…..again, I am only speaking for myself. I have decided NOT to do IPI, and to stay with Dr. Pavlick (whom I adore), and will proceed with the 1 year plan of leukine….I of course hope the Radiation with have done its thing for local control.
These are tough decisions to make, and hopefully it is true, that there is NO WRONG desicion.
Sorry for the long post. Happy to go into more detail for anyone who is interested.
To everyone waiting for scan results this week, I am sending my best in the hopes of only good news.
All the best,
Jenny
- Replies
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- February 17, 2016 at 5:07 pm
Good for you. I hope you get continued results and don't have to bother with much more.
I turned down your choice, but everyone's decision and disease is different. The bad news is that my understanding is that Leukine isn't a fun process. However, individualized side-effects are the norm, so it's hard to say what might happen. However, if it helps, that's no big deal.
The good news is that you'll still have the ipi "bullet" in your chamber in the future. So if after a year, you're in the same spot, then you can consider ipi. And you still have the Anti-PD-1 bullet and the other stuff that they come up with after. Who knows. These are all good things though.
Hang in there. You make the best choices for yourself that you can and it looks like you really did your homework. Plus, the other options aren't out of play regardless, so it sounds like a good plan.
Best of luck!
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- February 17, 2016 at 5:07 pm
Good for you. I hope you get continued results and don't have to bother with much more.
I turned down your choice, but everyone's decision and disease is different. The bad news is that my understanding is that Leukine isn't a fun process. However, individualized side-effects are the norm, so it's hard to say what might happen. However, if it helps, that's no big deal.
The good news is that you'll still have the ipi "bullet" in your chamber in the future. So if after a year, you're in the same spot, then you can consider ipi. And you still have the Anti-PD-1 bullet and the other stuff that they come up with after. Who knows. These are all good things though.
Hang in there. You make the best choices for yourself that you can and it looks like you really did your homework. Plus, the other options aren't out of play regardless, so it sounds like a good plan.
Best of luck!
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- February 17, 2016 at 6:37 pm
Thanks Justin- I too hope I wont have to "bother with much more"….you are correct about still having the IPI and or PD1 bullets in my arsenal (of course hoping not to need them)….but based on my bout with colitis post vaccine trial it seems that IPI at any dose for me is not the right thing right now…Should things change or worsen then of course those risks become more reasonable to take.
So for now I'll keep my fingers crossed that the Leukine side effects are minmal or at least tolerable……and obviously hope for no additional recurrences…
Best to you !!!!!!
Jenny
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- February 17, 2016 at 6:37 pm
Thanks Justin- I too hope I wont have to "bother with much more"….you are correct about still having the IPI and or PD1 bullets in my arsenal (of course hoping not to need them)….but based on my bout with colitis post vaccine trial it seems that IPI at any dose for me is not the right thing right now…Should things change or worsen then of course those risks become more reasonable to take.
So for now I'll keep my fingers crossed that the Leukine side effects are minmal or at least tolerable……and obviously hope for no additional recurrences…
Best to you !!!!!!
Jenny
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- February 17, 2016 at 6:37 pm
Thanks Justin- I too hope I wont have to "bother with much more"….you are correct about still having the IPI and or PD1 bullets in my arsenal (of course hoping not to need them)….but based on my bout with colitis post vaccine trial it seems that IPI at any dose for me is not the right thing right now…Should things change or worsen then of course those risks become more reasonable to take.
So for now I'll keep my fingers crossed that the Leukine side effects are minmal or at least tolerable……and obviously hope for no additional recurrences…
Best to you !!!!!!
Jenny
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- February 17, 2016 at 5:07 pm
Good for you. I hope you get continued results and don't have to bother with much more.
I turned down your choice, but everyone's decision and disease is different. The bad news is that my understanding is that Leukine isn't a fun process. However, individualized side-effects are the norm, so it's hard to say what might happen. However, if it helps, that's no big deal.
The good news is that you'll still have the ipi "bullet" in your chamber in the future. So if after a year, you're in the same spot, then you can consider ipi. And you still have the Anti-PD-1 bullet and the other stuff that they come up with after. Who knows. These are all good things though.
Hang in there. You make the best choices for yourself that you can and it looks like you really did your homework. Plus, the other options aren't out of play regardless, so it sounds like a good plan.
Best of luck!
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- February 17, 2016 at 5:29 pm
Very happy to see you've got a good scan result. My suggestion is to give yourself a break and enjoy at least one week and forget anything about it.
All the best!
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- February 17, 2016 at 6:33 pm
Hi Jenny so glad scans come back great for you , I cannot comment on what you decide in treatment next due I am a later stage than you. You seem to have a good consultant and do what feels best for you. Chill have a glass or two and then make a choice.
So pleased for you
scooby123❤️
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- February 17, 2016 at 6:33 pm
Hi Jenny so glad scans come back great for you , I cannot comment on what you decide in treatment next due I am a later stage than you. You seem to have a good consultant and do what feels best for you. Chill have a glass or two and then make a choice.
So pleased for you
scooby123❤️
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- February 17, 2016 at 6:33 pm
Hi Jenny so glad scans come back great for you , I cannot comment on what you decide in treatment next due I am a later stage than you. You seem to have a good consultant and do what feels best for you. Chill have a glass or two and then make a choice.
So pleased for you
scooby123❤️
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- February 17, 2016 at 7:00 pm
Jenny, so happy scans went well for you. I agree with everyone else…you decided now take some time off of thinking and enjoy life. As you and I have talked about before I think once you have made your choice you just invest yourself 100% in that choice and don’t look back. -
- February 17, 2016 at 7:00 pm
Jenny, so happy scans went well for you. I agree with everyone else…you decided now take some time off of thinking and enjoy life. As you and I have talked about before I think once you have made your choice you just invest yourself 100% in that choice and don’t look back. -
- February 17, 2016 at 7:00 pm
Jenny, so happy scans went well for you. I agree with everyone else…you decided now take some time off of thinking and enjoy life. As you and I have talked about before I think once you have made your choice you just invest yourself 100% in that choice and don’t look back.-
- February 17, 2016 at 7:28 pm
Hi Jamie-
Thank you……I plan to…..trying to plan few fun things to do….Pavlick said something to me along those lines yesterday…I dont remember her exact words but they were soemthing like , "If I keep you alive and save your life, then you better LIVE IT"…not exactly those words but that meaning.
Hopefully the Leukine treatment wont be too bad and in some way will have some benefit !!!!!
And hoping same for you…..think about you often, and REALLY hoping for good results with SRS and Nivo.
Tks again Jamie!
jenny
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- February 17, 2016 at 7:28 pm
Hi Jamie-
Thank you……I plan to…..trying to plan few fun things to do….Pavlick said something to me along those lines yesterday…I dont remember her exact words but they were soemthing like , "If I keep you alive and save your life, then you better LIVE IT"…not exactly those words but that meaning.
Hopefully the Leukine treatment wont be too bad and in some way will have some benefit !!!!!
And hoping same for you…..think about you often, and REALLY hoping for good results with SRS and Nivo.
Tks again Jamie!
jenny
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- February 17, 2016 at 7:28 pm
Hi Jamie-
Thank you……I plan to…..trying to plan few fun things to do….Pavlick said something to me along those lines yesterday…I dont remember her exact words but they were soemthing like , "If I keep you alive and save your life, then you better LIVE IT"…not exactly those words but that meaning.
Hopefully the Leukine treatment wont be too bad and in some way will have some benefit !!!!!
And hoping same for you…..think about you often, and REALLY hoping for good results with SRS and Nivo.
Tks again Jamie!
jenny
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- February 17, 2016 at 8:06 pm
Jenny! CONGRATULATIONS!!! I mean that to apply both to your wonderful scans AND making your decision. I know you have dedicated loads of time into research and I am thrilled that you have now reached a decision. Please do relax and enjoy the time you have now. You have much to celebrate: clean scans (Woo Hoo!) and a treatment plan in place. Life is good!
Cheers!
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- February 17, 2016 at 8:21 pm
Hi Maggie-
Thanks for the congrats…..and your enthusiasm. It feels good to have it behind me. Looks like I'll be on a 4 month scan schedule (maybe even 6) so dont have to worry about that for another few months.
Regarding my treatment plan, who knows if its the "right decision", but its the one I've made, and will hope for the best, and hope for minimal side effects.
Now, lets hope for some good news for you AND your brother….and that you gain some benefit from "double teaming" each others Doctors.
Keep in touch…I'll post more after I start treatments…
TKS again Maggie!
All the best
Jenny
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- February 17, 2016 at 8:21 pm
Hi Maggie-
Thanks for the congrats…..and your enthusiasm. It feels good to have it behind me. Looks like I'll be on a 4 month scan schedule (maybe even 6) so dont have to worry about that for another few months.
Regarding my treatment plan, who knows if its the "right decision", but its the one I've made, and will hope for the best, and hope for minimal side effects.
Now, lets hope for some good news for you AND your brother….and that you gain some benefit from "double teaming" each others Doctors.
Keep in touch…I'll post more after I start treatments…
TKS again Maggie!
All the best
Jenny
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- February 17, 2016 at 8:21 pm
Hi Maggie-
Thanks for the congrats…..and your enthusiasm. It feels good to have it behind me. Looks like I'll be on a 4 month scan schedule (maybe even 6) so dont have to worry about that for another few months.
Regarding my treatment plan, who knows if its the "right decision", but its the one I've made, and will hope for the best, and hope for minimal side effects.
Now, lets hope for some good news for you AND your brother….and that you gain some benefit from "double teaming" each others Doctors.
Keep in touch…I'll post more after I start treatments…
TKS again Maggie!
All the best
Jenny
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- February 17, 2016 at 8:06 pm
Jenny! CONGRATULATIONS!!! I mean that to apply both to your wonderful scans AND making your decision. I know you have dedicated loads of time into research and I am thrilled that you have now reached a decision. Please do relax and enjoy the time you have now. You have much to celebrate: clean scans (Woo Hoo!) and a treatment plan in place. Life is good!
Cheers!
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- February 17, 2016 at 8:06 pm
Jenny! CONGRATULATIONS!!! I mean that to apply both to your wonderful scans AND making your decision. I know you have dedicated loads of time into research and I am thrilled that you have now reached a decision. Please do relax and enjoy the time you have now. You have much to celebrate: clean scans (Woo Hoo!) and a treatment plan in place. Life is good!
Cheers!
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- February 17, 2016 at 9:58 pm
Yay!! So happy to hear this Jenny! Also glad you have come to a decision regarding treatment. As my dad has started his treatment I feel much more relaxed, so does he. Decision making is such an additional stressor in this process. Congrats!!Annie
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- February 17, 2016 at 9:58 pm
Yay!! So happy to hear this Jenny! Also glad you have come to a decision regarding treatment. As my dad has started his treatment I feel much more relaxed, so does he. Decision making is such an additional stressor in this process. Congrats!!Annie
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- February 17, 2016 at 9:58 pm
Yay!! So happy to hear this Jenny! Also glad you have come to a decision regarding treatment. As my dad has started his treatment I feel much more relaxed, so does he. Decision making is such an additional stressor in this process. Congrats!!Annie
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- February 18, 2016 at 5:36 pm
Thanks Annie……you are right, as if the disease iteslf isnt enough stress , having to make our own treatment decisions just creates an added burden.
As I've said in my previous posts, who knows what the "right desicion" is, but mine is made now…..
So, ONWARD I go.
Thanks for your note, and best to you and your DAD!!!!!
jenny
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- February 18, 2016 at 5:36 pm
Thanks Annie……you are right, as if the disease iteslf isnt enough stress , having to make our own treatment decisions just creates an added burden.
As I've said in my previous posts, who knows what the "right desicion" is, but mine is made now…..
So, ONWARD I go.
Thanks for your note, and best to you and your DAD!!!!!
jenny
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- February 18, 2016 at 5:36 pm
Thanks Annie……you are right, as if the disease iteslf isnt enough stress , having to make our own treatment decisions just creates an added burden.
As I've said in my previous posts, who knows what the "right desicion" is, but mine is made now…..
So, ONWARD I go.
Thanks for your note, and best to you and your DAD!!!!!
jenny
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- February 18, 2016 at 4:54 am
Congrats on the scan Jenny!
As for treatment that is such a personal decision. You did your due diligence. There is rarely only one path, there are many. What is important is finding a path that feels right to you. And you found it, so that is a good thing!
Best wishes – Paul
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- February 18, 2016 at 5:39 pm
Thanks PAUL….and as of today, same to you!!!!!!
Treatment decisions are not fun in the melanoma world, but we all have to make them…so, i am done and ready to go…..who knows how things will turn out, but i am going to try and take it one scan, and one day at a time!!! ( I'm really not very good at that, but i am going to try!!!!)
Again, congrats and best to you!
jenny
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- February 18, 2016 at 5:39 pm
Thanks PAUL….and as of today, same to you!!!!!!
Treatment decisions are not fun in the melanoma world, but we all have to make them…so, i am done and ready to go…..who knows how things will turn out, but i am going to try and take it one scan, and one day at a time!!! ( I'm really not very good at that, but i am going to try!!!!)
Again, congrats and best to you!
jenny
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- February 18, 2016 at 5:39 pm
Thanks PAUL….and as of today, same to you!!!!!!
Treatment decisions are not fun in the melanoma world, but we all have to make them…so, i am done and ready to go…..who knows how things will turn out, but i am going to try and take it one scan, and one day at a time!!! ( I'm really not very good at that, but i am going to try!!!!)
Again, congrats and best to you!
jenny
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- February 18, 2016 at 4:54 am
Congrats on the scan Jenny!
As for treatment that is such a personal decision. You did your due diligence. There is rarely only one path, there are many. What is important is finding a path that feels right to you. And you found it, so that is a good thing!
Best wishes – Paul
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- February 18, 2016 at 4:54 am
Congrats on the scan Jenny!
As for treatment that is such a personal decision. You did your due diligence. There is rarely only one path, there are many. What is important is finding a path that feels right to you. And you found it, so that is a good thing!
Best wishes – Paul
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- February 18, 2016 at 2:58 pm
So wonderful to hear of your clear scans, Jenny! Oddly enough, now that more treatment options exist for melanoma, making that decision has become harder. But now that it is made….go for it! Dr. Pavlick has an amazing reputation in melanoma world. Wishing you my best, c
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- February 18, 2016 at 5:43 pm
Hi Celeste-
Thanks for your note…..I was thrilled about my scans, of course!
I know MOST here (or anywhere) dont seem to have anything good to say about Leukine as a stand alone treatment so its a bit of an odd feeling for someone like me who is so data and research driven.
BUT, in this case after my assorted ONC consults, I am just going to follow Pavlicks thoughts and hope for the best.
Are you going to be traveling to NYC now and then to see Dr. Weber? I will now have to see Pavlick once a month while on this treaemnt, so let me know when you may be there…..
As always many thanks!
best,
jenny
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- February 18, 2016 at 5:43 pm
Hi Celeste-
Thanks for your note…..I was thrilled about my scans, of course!
I know MOST here (or anywhere) dont seem to have anything good to say about Leukine as a stand alone treatment so its a bit of an odd feeling for someone like me who is so data and research driven.
BUT, in this case after my assorted ONC consults, I am just going to follow Pavlicks thoughts and hope for the best.
Are you going to be traveling to NYC now and then to see Dr. Weber? I will now have to see Pavlick once a month while on this treaemnt, so let me know when you may be there…..
As always many thanks!
best,
jenny
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- February 18, 2016 at 5:43 pm
Hi Celeste-
Thanks for your note…..I was thrilled about my scans, of course!
I know MOST here (or anywhere) dont seem to have anything good to say about Leukine as a stand alone treatment so its a bit of an odd feeling for someone like me who is so data and research driven.
BUT, in this case after my assorted ONC consults, I am just going to follow Pavlicks thoughts and hope for the best.
Are you going to be traveling to NYC now and then to see Dr. Weber? I will now have to see Pavlick once a month while on this treaemnt, so let me know when you may be there…..
As always many thanks!
best,
jenny
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- February 18, 2016 at 2:58 pm
So wonderful to hear of your clear scans, Jenny! Oddly enough, now that more treatment options exist for melanoma, making that decision has become harder. But now that it is made….go for it! Dr. Pavlick has an amazing reputation in melanoma world. Wishing you my best, c
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- February 18, 2016 at 2:58 pm
So wonderful to hear of your clear scans, Jenny! Oddly enough, now that more treatment options exist for melanoma, making that decision has become harder. But now that it is made….go for it! Dr. Pavlick has an amazing reputation in melanoma world. Wishing you my best, c
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- February 18, 2016 at 5:41 pm
Congrats on the scan news Jenny.
Congrats on the treatment decison also. I know for me the most stressful part of this journey has been the decisions along the way. It's always been such a load off once I finally picked a path and went for it.
Curious on your treatment. Are you doing interferon? Only reason I ask is I thought Leukine therapy and interferon were two different treatments.
Brian
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- February 18, 2016 at 5:52 pm
Hi Brian-
Thanks for the noted and the CONGRATS!!!! Obviously a big relief…until the next one!
I am going to be doing Leukine….though (as I just wrote in my respsonse to CELESTE) I know most here (or anywhere) wont have much good to say about Leukine as stand alone treatment.
Since IPI is off the table, and as most of us want to do SOMETHING, Pavlick is reccommeidng luekine….her experience with it , is that it has shown some benefits…at least in her patient population.
So, I am going to follow her plan and hope for the best….after seeing 3 top Melanoma epxerts and now have a 2:1 tie breaker opinion on IPI I think its time for me to stop "shopping" around for opinons and make my decision.
Who knows if its the right one…..
Maybe the Radiation will work with regard to the local control (since mine keeps coming back only the same spot)….and hopefully either my own immune system, or some lingering benefit from the vaccine trial, or the upcomnig leukine treatments will keep it from recurring distantly.
I guess we'll see…
Tks again for your note.
Best,
jenny
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- February 18, 2016 at 5:52 pm
Hi Brian-
Thanks for the noted and the CONGRATS!!!! Obviously a big relief…until the next one!
I am going to be doing Leukine….though (as I just wrote in my respsonse to CELESTE) I know most here (or anywhere) wont have much good to say about Leukine as stand alone treatment.
Since IPI is off the table, and as most of us want to do SOMETHING, Pavlick is reccommeidng luekine….her experience with it , is that it has shown some benefits…at least in her patient population.
So, I am going to follow her plan and hope for the best….after seeing 3 top Melanoma epxerts and now have a 2:1 tie breaker opinion on IPI I think its time for me to stop "shopping" around for opinons and make my decision.
Who knows if its the right one…..
Maybe the Radiation will work with regard to the local control (since mine keeps coming back only the same spot)….and hopefully either my own immune system, or some lingering benefit from the vaccine trial, or the upcomnig leukine treatments will keep it from recurring distantly.
I guess we'll see…
Tks again for your note.
Best,
jenny
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- February 18, 2016 at 7:50 pm
Brian, my understanding of leukine is this: It is called sargramostim, GM-CSF, or leukine. It is an immunostimulator most historically used to help patients regrow white cells after after a bone marrow transplant or when they have been depleted by conventional chemo therapy in diseases like leukemia. The addition of GM-CSF has boosted response rates, decreased side effects and is thought to lengthen repsonse duration for some patients when it was combined with ipi. I wrote some about it in this post: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/sargramostim-aka-gm-csf-or-leukine.html
So, you are correct, and for any others who were wondering – leukine is not the same as interferon. And I don't think Jenny is taking interferon in her treatment plan…but was alluding, I assume, to what she considered a similar contraversy…but she would be best to clarify her planned treatment. Hope you are doing well yourself!! celeste
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- February 18, 2016 at 7:50 pm
Brian, my understanding of leukine is this: It is called sargramostim, GM-CSF, or leukine. It is an immunostimulator most historically used to help patients regrow white cells after after a bone marrow transplant or when they have been depleted by conventional chemo therapy in diseases like leukemia. The addition of GM-CSF has boosted response rates, decreased side effects and is thought to lengthen repsonse duration for some patients when it was combined with ipi. I wrote some about it in this post: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/sargramostim-aka-gm-csf-or-leukine.html
So, you are correct, and for any others who were wondering – leukine is not the same as interferon. And I don't think Jenny is taking interferon in her treatment plan…but was alluding, I assume, to what she considered a similar contraversy…but she would be best to clarify her planned treatment. Hope you are doing well yourself!! celeste
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- February 18, 2016 at 7:50 pm
Brian, my understanding of leukine is this: It is called sargramostim, GM-CSF, or leukine. It is an immunostimulator most historically used to help patients regrow white cells after after a bone marrow transplant or when they have been depleted by conventional chemo therapy in diseases like leukemia. The addition of GM-CSF has boosted response rates, decreased side effects and is thought to lengthen repsonse duration for some patients when it was combined with ipi. I wrote some about it in this post: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/sargramostim-aka-gm-csf-or-leukine.html
So, you are correct, and for any others who were wondering – leukine is not the same as interferon. And I don't think Jenny is taking interferon in her treatment plan…but was alluding, I assume, to what she considered a similar contraversy…but she would be best to clarify her planned treatment. Hope you are doing well yourself!! celeste
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- February 18, 2016 at 9:19 pm
Correct Celeste….my reference to the controversy was only that this is not a new or particulary highly touted treatment…..
I am however going to do the LEUKINE as per Dr. Pavlick's reccomendation …in an effort to do something systemic since for me IPI is off the table, at least for now.
I could second this 100 times, but dont want to!
Celeste- Let me know when you'll be at NYU!! Maybe we can connect. OR if you need any help, transportation, or anything….I live in NJ and am happy to help.
tks,
jenny
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- February 18, 2016 at 9:19 pm
Correct Celeste….my reference to the controversy was only that this is not a new or particulary highly touted treatment…..
I am however going to do the LEUKINE as per Dr. Pavlick's reccomendation …in an effort to do something systemic since for me IPI is off the table, at least for now.
I could second this 100 times, but dont want to!
Celeste- Let me know when you'll be at NYU!! Maybe we can connect. OR if you need any help, transportation, or anything….I live in NJ and am happy to help.
tks,
jenny
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- February 18, 2016 at 9:19 pm
Correct Celeste….my reference to the controversy was only that this is not a new or particulary highly touted treatment…..
I am however going to do the LEUKINE as per Dr. Pavlick's reccomendation …in an effort to do something systemic since for me IPI is off the table, at least for now.
I could second this 100 times, but dont want to!
Celeste- Let me know when you'll be at NYU!! Maybe we can connect. OR if you need any help, transportation, or anything….I live in NJ and am happy to help.
tks,
jenny
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- February 18, 2016 at 9:30 pm
UGH, Celeste every time i read this, my 2nd guessing starts…I'd read it before and you can see where WEBER says Leukine alone is almost worthless…this is the stuff that can make any sane person crazy!!!!!
BUT, will stick with pavlick on this and hope it does soemthing…she isn't (nor MSK) reccommending inteferon and IPI not a good option for me..
UGH!!!!!!
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- February 18, 2016 at 9:30 pm
UGH, Celeste every time i read this, my 2nd guessing starts…I'd read it before and you can see where WEBER says Leukine alone is almost worthless…this is the stuff that can make any sane person crazy!!!!!
BUT, will stick with pavlick on this and hope it does soemthing…she isn't (nor MSK) reccommending inteferon and IPI not a good option for me..
UGH!!!!!!
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- February 18, 2016 at 9:30 pm
UGH, Celeste every time i read this, my 2nd guessing starts…I'd read it before and you can see where WEBER says Leukine alone is almost worthless…this is the stuff that can make any sane person crazy!!!!!
BUT, will stick with pavlick on this and hope it does soemthing…she isn't (nor MSK) reccommending inteferon and IPI not a good option for me..
UGH!!!!!!
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- February 18, 2016 at 9:41 pm
I hear you Jenny. In my last decision I consulted four Surgical oncologist and the recommendations were 2 for surgery and 2 against surgery and all were fairly passionate in their recommendation. Lesson learned…. always consult an odd number of melanoma specialist so you have a tie breaker 🙂
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- February 18, 2016 at 9:41 pm
I hear you Jenny. In my last decision I consulted four Surgical oncologist and the recommendations were 2 for surgery and 2 against surgery and all were fairly passionate in their recommendation. Lesson learned…. always consult an odd number of melanoma specialist so you have a tie breaker 🙂
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- February 18, 2016 at 9:41 pm
I hear you Jenny. In my last decision I consulted four Surgical oncologist and the recommendations were 2 for surgery and 2 against surgery and all were fairly passionate in their recommendation. Lesson learned…. always consult an odd number of melanoma specialist so you have a tie breaker 🙂
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- February 18, 2016 at 10:27 pm
No, NO! NO!!!, Jenny. I didn't put that up for you to start re-thinking!!!! It was just some info in case folks didn't know what it was! I can make an argument for and against practically every melanoma treatment out there!!!!! You just have to take the shot that you think is best for you at the time, with the doc that you feel has your best interest at heart. Leukine HAS done some good things. Besides…it is up to the ratties to show us the way on all these things!!! Don't second guess yourself. Breathe. Settle. Go for it!!! Looking forward to meeting you in the Big Apple before too long!!! Celeste
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- February 18, 2016 at 10:27 pm
No, NO! NO!!!, Jenny. I didn't put that up for you to start re-thinking!!!! It was just some info in case folks didn't know what it was! I can make an argument for and against practically every melanoma treatment out there!!!!! You just have to take the shot that you think is best for you at the time, with the doc that you feel has your best interest at heart. Leukine HAS done some good things. Besides…it is up to the ratties to show us the way on all these things!!! Don't second guess yourself. Breathe. Settle. Go for it!!! Looking forward to meeting you in the Big Apple before too long!!! Celeste
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- February 18, 2016 at 10:27 pm
No, NO! NO!!!, Jenny. I didn't put that up for you to start re-thinking!!!! It was just some info in case folks didn't know what it was! I can make an argument for and against practically every melanoma treatment out there!!!!! You just have to take the shot that you think is best for you at the time, with the doc that you feel has your best interest at heart. Leukine HAS done some good things. Besides…it is up to the ratties to show us the way on all these things!!! Don't second guess yourself. Breathe. Settle. Go for it!!! Looking forward to meeting you in the Big Apple before too long!!! Celeste
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- February 18, 2016 at 10:48 pm
Thanks Celeste…I know you didnt mean to make me crazy…I can do that just fine on my own! (lol)
As you know I adore Pavlick and really do trust that she has my best interests at heart….
On a serious note though, please do let me know when you'll be in NY….I lived in the city for many years and am happy to offer any help with anything…travel…restaurants….might as well enjoy your visit!
Tks again,
jenny
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- February 18, 2016 at 10:48 pm
Thanks Celeste…I know you didnt mean to make me crazy…I can do that just fine on my own! (lol)
As you know I adore Pavlick and really do trust that she has my best interests at heart….
On a serious note though, please do let me know when you'll be in NY….I lived in the city for many years and am happy to offer any help with anything…travel…restaurants….might as well enjoy your visit!
Tks again,
jenny
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- February 18, 2016 at 10:48 pm
Thanks Celeste…I know you didnt mean to make me crazy…I can do that just fine on my own! (lol)
As you know I adore Pavlick and really do trust that she has my best interests at heart….
On a serious note though, please do let me know when you'll be in NY….I lived in the city for many years and am happy to offer any help with anything…travel…restaurants….might as well enjoy your visit!
Tks again,
jenny
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- February 18, 2016 at 5:52 pm
Hi Brian-
Thanks for the noted and the CONGRATS!!!! Obviously a big relief…until the next one!
I am going to be doing Leukine….though (as I just wrote in my respsonse to CELESTE) I know most here (or anywhere) wont have much good to say about Leukine as stand alone treatment.
Since IPI is off the table, and as most of us want to do SOMETHING, Pavlick is reccommeidng luekine….her experience with it , is that it has shown some benefits…at least in her patient population.
So, I am going to follow her plan and hope for the best….after seeing 3 top Melanoma epxerts and now have a 2:1 tie breaker opinion on IPI I think its time for me to stop "shopping" around for opinons and make my decision.
Who knows if its the right one…..
Maybe the Radiation will work with regard to the local control (since mine keeps coming back only the same spot)….and hopefully either my own immune system, or some lingering benefit from the vaccine trial, or the upcomnig leukine treatments will keep it from recurring distantly.
I guess we'll see…
Tks again for your note.
Best,
jenny
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- February 18, 2016 at 5:41 pm
Congrats on the scan news Jenny.
Congrats on the treatment decison also. I know for me the most stressful part of this journey has been the decisions along the way. It's always been such a load off once I finally picked a path and went for it.
Curious on your treatment. Are you doing interferon? Only reason I ask is I thought Leukine therapy and interferon were two different treatments.
Brian
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- February 18, 2016 at 5:41 pm
Congrats on the scan news Jenny.
Congrats on the treatment decison also. I know for me the most stressful part of this journey has been the decisions along the way. It's always been such a load off once I finally picked a path and went for it.
Curious on your treatment. Are you doing interferon? Only reason I ask is I thought Leukine therapy and interferon were two different treatments.
Brian
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- February 18, 2016 at 9:55 pm
Hey Jenny! So glad to hear about your clean scans!! Woohoo!!I completely understand your adjuvant dilemma, and the stress that goes along with the decision. I’m IIIC with ulceration, and after an hour long discussion with Dr. Flaherty in Boston, decided to go with peginterferon (sylatron). I know this is hugely controversial, and I haven’t posted about it due to fear that people will make me second guess my decision. But Dr. Flaherty isn’t on board with Ipi at 3 mg, and I had 6 nodes come back positive after my CLND, so I’m in agreement with him that this is what’s best for me. Sometimes you have to put on blinders to what others may say and do what is best for you. In adjuvant treatment, as you said, there is NO wrong decision. Faith and positivity are huge boosters to any treatment. Believe in your medicine!
Keep us updated when you start the Leukine!
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- February 18, 2016 at 10:13 pm
Hi "WithinMySkin", and thanks for your note..you're right about adjuvant treatment…..we all know its not an easy place to be.
Interestingly enough, I wasn't worried about the folks here making me 2nd guess my decision…..it was all the DOCs I saw…..I think Brian hit the nail on the head….never see an even number, since there are so many opinions….I stopped at 3, so at least had a TIE BREAKER…..2:1, no IPI.
I'm interested to hear about FLannerys thinking…you said his isnt on board with IPI at 3mg……are they not using it at the 10 mg approved does either ?
So much Controversy with IPI at any dose in the adjuvant setting…..yet many here are trying it and seem to be tolerating it well…never want to make anyone 2nd guess thier decisions…
curious though about the thinking at MGH.
Good luck and hope you're doing ok with your treatments.
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- February 18, 2016 at 11:02 pm
Haha yes, Brian definitely has a good point! A tie breaker is a huge relief so you don’t have to keep wondering and stressing!Flaherty is such a smart guy, and I really trust what he has to say. He’s not anti the 10 mg of Ipi, but extremely hesitant due to the side effect profile. He also mentioned the fact that if you do use it in stage III, what does that mean for stage IV? Would it have the same efficacy in a combo treatment down the road? No one knows. So if I asked him to do the 10 of Ipi, he’d let me do it and watch me like a hawk. But I figured I’d rather have that in my back pocket if I progress and do the lower dose (which unfortunately is very likely in my case).
Treatments so far are typical – fatigue, brain fog, changes in appetite. Nothing major! I’m almost halfway through the higher dose regimen, so doing good!
All the best,
Lauren -
- February 18, 2016 at 11:02 pm
Haha yes, Brian definitely has a good point! A tie breaker is a huge relief so you don’t have to keep wondering and stressing!Flaherty is such a smart guy, and I really trust what he has to say. He’s not anti the 10 mg of Ipi, but extremely hesitant due to the side effect profile. He also mentioned the fact that if you do use it in stage III, what does that mean for stage IV? Would it have the same efficacy in a combo treatment down the road? No one knows. So if I asked him to do the 10 of Ipi, he’d let me do it and watch me like a hawk. But I figured I’d rather have that in my back pocket if I progress and do the lower dose (which unfortunately is very likely in my case).
Treatments so far are typical – fatigue, brain fog, changes in appetite. Nothing major! I’m almost halfway through the higher dose regimen, so doing good!
All the best,
Lauren -
- February 18, 2016 at 11:02 pm
Haha yes, Brian definitely has a good point! A tie breaker is a huge relief so you don’t have to keep wondering and stressing!Flaherty is such a smart guy, and I really trust what he has to say. He’s not anti the 10 mg of Ipi, but extremely hesitant due to the side effect profile. He also mentioned the fact that if you do use it in stage III, what does that mean for stage IV? Would it have the same efficacy in a combo treatment down the road? No one knows. So if I asked him to do the 10 of Ipi, he’d let me do it and watch me like a hawk. But I figured I’d rather have that in my back pocket if I progress and do the lower dose (which unfortunately is very likely in my case).
Treatments so far are typical – fatigue, brain fog, changes in appetite. Nothing major! I’m almost halfway through the higher dose regimen, so doing good!
All the best,
Lauren -
- February 18, 2016 at 11:31 pm
Yes, exactly. No studies out yet on the 3 mg dose for stage III, so he would only give the studied 10 mg dose. And if the side effects became too much, I think he would just stop Ipi entirely rather than lower the dose.Lauren
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- February 18, 2016 at 11:31 pm
Yes, exactly. No studies out yet on the 3 mg dose for stage III, so he would only give the studied 10 mg dose. And if the side effects became too much, I think he would just stop Ipi entirely rather than lower the dose.Lauren
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- February 18, 2016 at 11:31 pm
Yes, exactly. No studies out yet on the 3 mg dose for stage III, so he would only give the studied 10 mg dose. And if the side effects became too much, I think he would just stop Ipi entirely rather than lower the dose.Lauren
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- February 18, 2016 at 11:40 pm
Jenny,
One thing that really struck a chord with me regarding the use of Ipi in the adjuvant setting is a point that Dr. Luke from U. of Chicago makes. I'm sure you've probably seen it. If not let me know and I'll see if I can find it. He isn't completely sold on the benefits of Ipi in the adjuvant setting because when he looks at the data from the adjuvant trial and compares it to the data we have from 10+ years of use he doesn't think the benefit outweigths the risk of side effects. Essentially he's saying that if you are going to respond to Ipi in the adjuvant setting you are probably just as likely to respond to it when you have present disease so why risk the possibility of permanent side effects that can occur with Ipi. That's a little tough concept to accept, at least it would have been tough for me when I was stage III NED. I also agree with another poster in that not every stage III NED is the same.
Brian
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- February 18, 2016 at 11:40 pm
Jenny,
One thing that really struck a chord with me regarding the use of Ipi in the adjuvant setting is a point that Dr. Luke from U. of Chicago makes. I'm sure you've probably seen it. If not let me know and I'll see if I can find it. He isn't completely sold on the benefits of Ipi in the adjuvant setting because when he looks at the data from the adjuvant trial and compares it to the data we have from 10+ years of use he doesn't think the benefit outweigths the risk of side effects. Essentially he's saying that if you are going to respond to Ipi in the adjuvant setting you are probably just as likely to respond to it when you have present disease so why risk the possibility of permanent side effects that can occur with Ipi. That's a little tough concept to accept, at least it would have been tough for me when I was stage III NED. I also agree with another poster in that not every stage III NED is the same.
Brian
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- February 19, 2016 at 12:02 am
Hey Brian- Yes, I am familair it…watched his webinar on the subject…tough part about this is none of us wants to become STAGE IV and then need the drug, we are all trying whatever we can to prevent that.
BUT it is interesting….the more poeple i speak to and the more DOCs who weigh in, it just seems the jury may still be out on IPI for STAGE III NED in the adjuvant setting…based on a risk/benefit scenario….and data only confirmed at 10mg….
Regarding your last statement about not every stage III NED being the same…I asked that EXACT question at my recent MSK consult…knowing the TNM staging components and all the different ways one can be STAGE III, IIIB in particular, it is true that not all STAGE IIIBs are created equal.
So now we know MSK, PAvlick, Flannery and Luke are not all sold on it….
BUT as we know from this board, there are still many who are…so again, I say, by no means are these comments meant to udnermine or make those doing IPI second guess theri own dieciosn!!
WHEW, I feel I'm runnng for political office…..gotta watch what we say!
We all just want the best for each other!
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- February 19, 2016 at 12:02 am
Hey Brian- Yes, I am familair it…watched his webinar on the subject…tough part about this is none of us wants to become STAGE IV and then need the drug, we are all trying whatever we can to prevent that.
BUT it is interesting….the more poeple i speak to and the more DOCs who weigh in, it just seems the jury may still be out on IPI for STAGE III NED in the adjuvant setting…based on a risk/benefit scenario….and data only confirmed at 10mg….
Regarding your last statement about not every stage III NED being the same…I asked that EXACT question at my recent MSK consult…knowing the TNM staging components and all the different ways one can be STAGE III, IIIB in particular, it is true that not all STAGE IIIBs are created equal.
So now we know MSK, PAvlick, Flannery and Luke are not all sold on it….
BUT as we know from this board, there are still many who are…so again, I say, by no means are these comments meant to udnermine or make those doing IPI second guess theri own dieciosn!!
WHEW, I feel I'm runnng for political office…..gotta watch what we say!
We all just want the best for each other!
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- February 19, 2016 at 12:02 am
Hey Brian- Yes, I am familair it…watched his webinar on the subject…tough part about this is none of us wants to become STAGE IV and then need the drug, we are all trying whatever we can to prevent that.
BUT it is interesting….the more poeple i speak to and the more DOCs who weigh in, it just seems the jury may still be out on IPI for STAGE III NED in the adjuvant setting…based on a risk/benefit scenario….and data only confirmed at 10mg….
Regarding your last statement about not every stage III NED being the same…I asked that EXACT question at my recent MSK consult…knowing the TNM staging components and all the different ways one can be STAGE III, IIIB in particular, it is true that not all STAGE IIIBs are created equal.
So now we know MSK, PAvlick, Flannery and Luke are not all sold on it….
BUT as we know from this board, there are still many who are…so again, I say, by no means are these comments meant to udnermine or make those doing IPI second guess theri own dieciosn!!
WHEW, I feel I'm runnng for political office…..gotta watch what we say!
We all just want the best for each other!
-
- February 18, 2016 at 11:40 pm
Jenny,
One thing that really struck a chord with me regarding the use of Ipi in the adjuvant setting is a point that Dr. Luke from U. of Chicago makes. I'm sure you've probably seen it. If not let me know and I'll see if I can find it. He isn't completely sold on the benefits of Ipi in the adjuvant setting because when he looks at the data from the adjuvant trial and compares it to the data we have from 10+ years of use he doesn't think the benefit outweigths the risk of side effects. Essentially he's saying that if you are going to respond to Ipi in the adjuvant setting you are probably just as likely to respond to it when you have present disease so why risk the possibility of permanent side effects that can occur with Ipi. That's a little tough concept to accept, at least it would have been tough for me when I was stage III NED. I also agree with another poster in that not every stage III NED is the same.
Brian
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- February 18, 2016 at 10:13 pm
Hi "WithinMySkin", and thanks for your note..you're right about adjuvant treatment…..we all know its not an easy place to be.
Interestingly enough, I wasn't worried about the folks here making me 2nd guess my decision…..it was all the DOCs I saw…..I think Brian hit the nail on the head….never see an even number, since there are so many opinions….I stopped at 3, so at least had a TIE BREAKER…..2:1, no IPI.
I'm interested to hear about FLannerys thinking…you said his isnt on board with IPI at 3mg……are they not using it at the 10 mg approved does either ?
So much Controversy with IPI at any dose in the adjuvant setting…..yet many here are trying it and seem to be tolerating it well…never want to make anyone 2nd guess thier decisions…
curious though about the thinking at MGH.
Good luck and hope you're doing ok with your treatments.
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- February 18, 2016 at 10:13 pm
Hi "WithinMySkin", and thanks for your note..you're right about adjuvant treatment…..we all know its not an easy place to be.
Interestingly enough, I wasn't worried about the folks here making me 2nd guess my decision…..it was all the DOCs I saw…..I think Brian hit the nail on the head….never see an even number, since there are so many opinions….I stopped at 3, so at least had a TIE BREAKER…..2:1, no IPI.
I'm interested to hear about FLannerys thinking…you said his isnt on board with IPI at 3mg……are they not using it at the 10 mg approved does either ?
So much Controversy with IPI at any dose in the adjuvant setting…..yet many here are trying it and seem to be tolerating it well…never want to make anyone 2nd guess thier decisions…
curious though about the thinking at MGH.
Good luck and hope you're doing ok with your treatments.
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- February 18, 2016 at 9:55 pm
Hey Jenny! So glad to hear about your clean scans!! Woohoo!!I completely understand your adjuvant dilemma, and the stress that goes along with the decision. I’m IIIC with ulceration, and after an hour long discussion with Dr. Flaherty in Boston, decided to go with peginterferon (sylatron). I know this is hugely controversial, and I haven’t posted about it due to fear that people will make me second guess my decision. But Dr. Flaherty isn’t on board with Ipi at 3 mg, and I had 6 nodes come back positive after my CLND, so I’m in agreement with him that this is what’s best for me. Sometimes you have to put on blinders to what others may say and do what is best for you. In adjuvant treatment, as you said, there is NO wrong decision. Faith and positivity are huge boosters to any treatment. Believe in your medicine!
Keep us updated when you start the Leukine!
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- February 18, 2016 at 9:55 pm
Hey Jenny! So glad to hear about your clean scans!! Woohoo!!I completely understand your adjuvant dilemma, and the stress that goes along with the decision. I’m IIIC with ulceration, and after an hour long discussion with Dr. Flaherty in Boston, decided to go with peginterferon (sylatron). I know this is hugely controversial, and I haven’t posted about it due to fear that people will make me second guess my decision. But Dr. Flaherty isn’t on board with Ipi at 3 mg, and I had 6 nodes come back positive after my CLND, so I’m in agreement with him that this is what’s best for me. Sometimes you have to put on blinders to what others may say and do what is best for you. In adjuvant treatment, as you said, there is NO wrong decision. Faith and positivity are huge boosters to any treatment. Believe in your medicine!
Keep us updated when you start the Leukine!
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