› Forums › Cutaneous Melanoma Community › I just don’t know what to do…
- This topic has 30 replies, 5 voices, and was last updated 10 years, 8 months ago by
JustMeInCA.
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- January 5, 2015 at 4:34 am
I a stuck between a rock and a hard place and hoping somebody (ies) out there can shove me in the right direction.
I have been stage 4 for 3 years, adrenal, pancreas and 3 subcutaneous surgically removed 3 years ago after short spell on Zelboraf to shrink things a bit. Have been going great since then with no probs until boxing day…3 more subcutaneous and the other adrenal gland this time.
I live in New Zealand so we are a bit removed from some of the opportunities that exist in more populated regions, however there are two spaces available here in the Merck ipi/mk3475 trial, and I know the results from the phase 1 trial look super impressive,but after 3 years disease free from last surgery and the relative ease of the surgery involved that seems like a good choice too….however the chances of me getting on another trial at a later date would be nil if the surgery is unsuccesful.
I did wonder if the best choice might be to start the trial and if i have no response in the short term i could get on to zelboraf to shrink things again and then have surgery…
I am feeling the gravity of this decision weighing heavily on my shoulders, there is just so much to lose….
Thankyou
- Replies
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- January 5, 2015 at 9:39 am
I'm so very sorry this dreadful disease has reared its ugly head on you again. If I were you, I would definitely choose the trial in hopes of a durable response. Since melanoma is so unpredictable, you have no way of knowing if you'd be as lucky this time with the same treatment you had last time. I would also think it better to start the trial at your healthiest. I'm sure others will chime in with more medically sound suggestions.
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- January 5, 2015 at 9:39 am
I'm so very sorry this dreadful disease has reared its ugly head on you again. If I were you, I would definitely choose the trial in hopes of a durable response. Since melanoma is so unpredictable, you have no way of knowing if you'd be as lucky this time with the same treatment you had last time. I would also think it better to start the trial at your healthiest. I'm sure others will chime in with more medically sound suggestions.
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- January 5, 2015 at 8:28 pm
Thanks for your reply, it really helps to talk to others in the same boat. Yes, i think you are right, this disease seems to come back when you are least expecting it, after 3 years NED I had gotten a bit smug, starting to think a bit too far ahead.
Think I will have to go with this trial in the hope of a durable response, actually I would even take semi durable at the moment!
Steph
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- January 5, 2015 at 8:28 pm
Thanks for your reply, it really helps to talk to others in the same boat. Yes, i think you are right, this disease seems to come back when you are least expecting it, after 3 years NED I had gotten a bit smug, starting to think a bit too far ahead.
Think I will have to go with this trial in the hope of a durable response, actually I would even take semi durable at the moment!
Steph
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- January 5, 2015 at 8:28 pm
Thanks for your reply, it really helps to talk to others in the same boat. Yes, i think you are right, this disease seems to come back when you are least expecting it, after 3 years NED I had gotten a bit smug, starting to think a bit too far ahead.
Think I will have to go with this trial in the hope of a durable response, actually I would even take semi durable at the moment!
Steph
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- January 5, 2015 at 9:39 am
I'm so very sorry this dreadful disease has reared its ugly head on you again. If I were you, I would definitely choose the trial in hopes of a durable response. Since melanoma is so unpredictable, you have no way of knowing if you'd be as lucky this time with the same treatment you had last time. I would also think it better to start the trial at your healthiest. I'm sure others will chime in with more medically sound suggestions.
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- January 5, 2015 at 5:04 pm
Is that trial the combo of taking both ipi and keytruda at the same time? I've heard of ipi and opdivo so I'm not sure of that combo. The ipi and opdivo pd1 trial has great results but some severe side affects. Celeste has articles about it on her blog. My doc had that trial but told me the side affects were too severe plus I already did zelboraf so I was disqualified. You basically need to research it and go with what your gut is telling you. Also both keytruda and opdivo are fda approved in the usa now so I assume they will be in nz sometime. Ipi as well. I know just keytruda by itself has done good for me and others. Not sure I was much help. Good luck with whatever decision you make and just go for it and don't look back.
Artie
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- January 5, 2015 at 5:04 pm
Is that trial the combo of taking both ipi and keytruda at the same time? I've heard of ipi and opdivo so I'm not sure of that combo. The ipi and opdivo pd1 trial has great results but some severe side affects. Celeste has articles about it on her blog. My doc had that trial but told me the side affects were too severe plus I already did zelboraf so I was disqualified. You basically need to research it and go with what your gut is telling you. Also both keytruda and opdivo are fda approved in the usa now so I assume they will be in nz sometime. Ipi as well. I know just keytruda by itself has done good for me and others. Not sure I was much help. Good luck with whatever decision you make and just go for it and don't look back.
Artie
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- January 5, 2015 at 8:03 pm
Hi Artie
Thanks for taking the time to reply, yes this is the ipi keytruda combo, my Oncologist thinks we can manage side effects ok, with steroids if needed. As the combo is only for 12 weeks then up to 2 years on just Keytruda. Unfortunately I don't have any other drug options available here, so really feeling the pressure to go with this. Although ipi is approved in New Zealand it is not funded, my onc tells me we would be looking at over $100 000 per treatment, and he thinks new anti PD1 drugs could be double that when approved, it makes it hard to say no to this trial!
Steph
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- January 5, 2015 at 8:03 pm
Hi Artie
Thanks for taking the time to reply, yes this is the ipi keytruda combo, my Oncologist thinks we can manage side effects ok, with steroids if needed. As the combo is only for 12 weeks then up to 2 years on just Keytruda. Unfortunately I don't have any other drug options available here, so really feeling the pressure to go with this. Although ipi is approved in New Zealand it is not funded, my onc tells me we would be looking at over $100 000 per treatment, and he thinks new anti PD1 drugs could be double that when approved, it makes it hard to say no to this trial!
Steph
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- January 6, 2015 at 1:40 am
Glad you have made your decision. Believe in it and never look back. Good luck to you.
Artie
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- January 6, 2015 at 1:40 am
Glad you have made your decision. Believe in it and never look back. Good luck to you.
Artie
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- January 6, 2015 at 1:40 am
Glad you have made your decision. Believe in it and never look back. Good luck to you.
Artie
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- January 5, 2015 at 8:03 pm
Hi Artie
Thanks for taking the time to reply, yes this is the ipi keytruda combo, my Oncologist thinks we can manage side effects ok, with steroids if needed. As the combo is only for 12 weeks then up to 2 years on just Keytruda. Unfortunately I don't have any other drug options available here, so really feeling the pressure to go with this. Although ipi is approved in New Zealand it is not funded, my onc tells me we would be looking at over $100 000 per treatment, and he thinks new anti PD1 drugs could be double that when approved, it makes it hard to say no to this trial!
Steph
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- January 5, 2015 at 5:04 pm
Is that trial the combo of taking both ipi and keytruda at the same time? I've heard of ipi and opdivo so I'm not sure of that combo. The ipi and opdivo pd1 trial has great results but some severe side affects. Celeste has articles about it on her blog. My doc had that trial but told me the side affects were too severe plus I already did zelboraf so I was disqualified. You basically need to research it and go with what your gut is telling you. Also both keytruda and opdivo are fda approved in the usa now so I assume they will be in nz sometime. Ipi as well. I know just keytruda by itself has done good for me and others. Not sure I was much help. Good luck with whatever decision you make and just go for it and don't look back.
Artie
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- January 5, 2015 at 6:48 pm
I am stage 4 as well and have ben NED for about a year with no treatment other than surgical resection. I tend to believe that when surgical resection is possible, that is the best course of action. There are systemic treatment options available, but side effects can be a challenge depending on the individual. My personal belief is to save the systemic treatment options for if/when needed. Now that the Merck and BMS anti pd1 twins have been released they are available for use if you progress on the first line treatment of ipi (Yervoy). Also, since new treatments are being developed at what seems like a rapid pace, my fear is that use of one drug today could exclude you from a future trial based on their exclusion criteria. Obviously, this is a personal choice but thought I would share my two cents.
Kevin
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- January 5, 2015 at 6:48 pm
I am stage 4 as well and have ben NED for about a year with no treatment other than surgical resection. I tend to believe that when surgical resection is possible, that is the best course of action. There are systemic treatment options available, but side effects can be a challenge depending on the individual. My personal belief is to save the systemic treatment options for if/when needed. Now that the Merck and BMS anti pd1 twins have been released they are available for use if you progress on the first line treatment of ipi (Yervoy). Also, since new treatments are being developed at what seems like a rapid pace, my fear is that use of one drug today could exclude you from a future trial based on their exclusion criteria. Obviously, this is a personal choice but thought I would share my two cents.
Kevin
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- January 5, 2015 at 8:35 pm
Thanks Kevin, I completely agree with you, but unfortunately in New Zealand we have only very occasional access to these drug trials. They approved drugs (ipi) are also prohibitively expensive ($100s of thousands per treatment), so I am feeling very backed in a corner.
My plan was to continue having tumours resected if and when they popped up, and I could do that, but my oncologist thinks this trial looks too promising to miss out on. We were only allocated 4 spaces and 2 of them have been filled….nothing like a bit of pressure!
Hope your NED status continues, bask in it!
Steph
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- January 5, 2015 at 8:35 pm
Thanks Kevin, I completely agree with you, but unfortunately in New Zealand we have only very occasional access to these drug trials. They approved drugs (ipi) are also prohibitively expensive ($100s of thousands per treatment), so I am feeling very backed in a corner.
My plan was to continue having tumours resected if and when they popped up, and I could do that, but my oncologist thinks this trial looks too promising to miss out on. We were only allocated 4 spaces and 2 of them have been filled….nothing like a bit of pressure!
Hope your NED status continues, bask in it!
Steph
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- January 5, 2015 at 8:35 pm
Thanks Kevin, I completely agree with you, but unfortunately in New Zealand we have only very occasional access to these drug trials. They approved drugs (ipi) are also prohibitively expensive ($100s of thousands per treatment), so I am feeling very backed in a corner.
My plan was to continue having tumours resected if and when they popped up, and I could do that, but my oncologist thinks this trial looks too promising to miss out on. We were only allocated 4 spaces and 2 of them have been filled….nothing like a bit of pressure!
Hope your NED status continues, bask in it!
Steph
-
- January 5, 2015 at 6:48 pm
I am stage 4 as well and have ben NED for about a year with no treatment other than surgical resection. I tend to believe that when surgical resection is possible, that is the best course of action. There are systemic treatment options available, but side effects can be a challenge depending on the individual. My personal belief is to save the systemic treatment options for if/when needed. Now that the Merck and BMS anti pd1 twins have been released they are available for use if you progress on the first line treatment of ipi (Yervoy). Also, since new treatments are being developed at what seems like a rapid pace, my fear is that use of one drug today could exclude you from a future trial based on their exclusion criteria. Obviously, this is a personal choice but thought I would share my two cents.
Kevin
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- January 6, 2015 at 2:43 am
Hi,
The results from these drugs has been so impressive for many it would be tough for me not to go that route if in a similar situation. I have had a combination of surgical solutions (lung and brain) that were enhanced by Yervoy and radiation. I just went NED as per Nov and Dec scans (hopefully the recent dull headaches are from edema and nothing new developing). Wouldn't it make sense to jump on this trial looking for a permanent solution as long as your Dr's commit to frequent scans to monitor the 4 tumors that were detected so they could cut them out. I know exactly how tough this decision is as I chose MSK and their surgical solution option in 2011 over Yale and their recommendation of taking Yervoy and monitoring the tumor. Even at that early date the early Anti Pd-1 data was so strong that if offered that option over surgery I would have gone the Anti Pd-1 route. I think a chance to get the newer combo makes this a compelling choice when combined with close monitoring and a plan B surgical solution option. It's ultimately a personal choice but I am sharing an opinion of what I would do if offered both those treatment choices right now. I wish you the best of long term success in whichever route you go. Good luck..
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- January 6, 2015 at 2:43 am
Hi,
The results from these drugs has been so impressive for many it would be tough for me not to go that route if in a similar situation. I have had a combination of surgical solutions (lung and brain) that were enhanced by Yervoy and radiation. I just went NED as per Nov and Dec scans (hopefully the recent dull headaches are from edema and nothing new developing). Wouldn't it make sense to jump on this trial looking for a permanent solution as long as your Dr's commit to frequent scans to monitor the 4 tumors that were detected so they could cut them out. I know exactly how tough this decision is as I chose MSK and their surgical solution option in 2011 over Yale and their recommendation of taking Yervoy and monitoring the tumor. Even at that early date the early Anti Pd-1 data was so strong that if offered that option over surgery I would have gone the Anti Pd-1 route. I think a chance to get the newer combo makes this a compelling choice when combined with close monitoring and a plan B surgical solution option. It's ultimately a personal choice but I am sharing an opinion of what I would do if offered both those treatment choices right now. I wish you the best of long term success in whichever route you go. Good luck..
-
- January 6, 2015 at 2:43 am
Hi,
The results from these drugs has been so impressive for many it would be tough for me not to go that route if in a similar situation. I have had a combination of surgical solutions (lung and brain) that were enhanced by Yervoy and radiation. I just went NED as per Nov and Dec scans (hopefully the recent dull headaches are from edema and nothing new developing). Wouldn't it make sense to jump on this trial looking for a permanent solution as long as your Dr's commit to frequent scans to monitor the 4 tumors that were detected so they could cut them out. I know exactly how tough this decision is as I chose MSK and their surgical solution option in 2011 over Yale and their recommendation of taking Yervoy and monitoring the tumor. Even at that early date the early Anti Pd-1 data was so strong that if offered that option over surgery I would have gone the Anti Pd-1 route. I think a chance to get the newer combo makes this a compelling choice when combined with close monitoring and a plan B surgical solution option. It's ultimately a personal choice but I am sharing an opinion of what I would do if offered both those treatment choices right now. I wish you the best of long term success in whichever route you go. Good luck..
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- January 6, 2015 at 4:07 am
Hi, thanks for taking the time to reply. I have just been in to see my oncologist and signed on the dotted line. Just as you suggested I have asked him to put a surgery plan B in place. He has said he will alert my two previous surgeons so we can go straight into surgery if the need arises(very glad I dropped some Xmas treats to these guys, hopefully they will feel obliged to keep me alive)!
i feel extremely fortunate to have got a place as it opened here on Xmas eve and there is only one spot now available, just too much melanoma!
i hope you re enjoying your NED label, it is so easy to fret about what is coming next and not enjoy the moment, it seems now though when the moment is over there are new and better options available.
Thankyou, and my best wishes.
kind regards
Steph
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- January 6, 2015 at 4:07 am
Hi, thanks for taking the time to reply. I have just been in to see my oncologist and signed on the dotted line. Just as you suggested I have asked him to put a surgery plan B in place. He has said he will alert my two previous surgeons so we can go straight into surgery if the need arises(very glad I dropped some Xmas treats to these guys, hopefully they will feel obliged to keep me alive)!
i feel extremely fortunate to have got a place as it opened here on Xmas eve and there is only one spot now available, just too much melanoma!
i hope you re enjoying your NED label, it is so easy to fret about what is coming next and not enjoy the moment, it seems now though when the moment is over there are new and better options available.
Thankyou, and my best wishes.
kind regards
Steph
-
- January 6, 2015 at 4:07 am
Hi, thanks for taking the time to reply. I have just been in to see my oncologist and signed on the dotted line. Just as you suggested I have asked him to put a surgery plan B in place. He has said he will alert my two previous surgeons so we can go straight into surgery if the need arises(very glad I dropped some Xmas treats to these guys, hopefully they will feel obliged to keep me alive)!
i feel extremely fortunate to have got a place as it opened here on Xmas eve and there is only one spot now available, just too much melanoma!
i hope you re enjoying your NED label, it is so easy to fret about what is coming next and not enjoy the moment, it seems now though when the moment is over there are new and better options available.
Thankyou, and my best wishes.
kind regards
Steph
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- January 6, 2015 at 7:00 am
Best of luck, Steph — so glad you didn't dither and lose the spot! It's reassuring to me that the combo is short-term with continued Keytruda after. Fingers and toes crossed that getting started early will cut this thing off at the pass for a long, long time! Do keep us posted.
Elaine
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- January 6, 2015 at 7:00 am
Best of luck, Steph — so glad you didn't dither and lose the spot! It's reassuring to me that the combo is short-term with continued Keytruda after. Fingers and toes crossed that getting started early will cut this thing off at the pass for a long, long time! Do keep us posted.
Elaine
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- January 6, 2015 at 7:00 am
Best of luck, Steph — so glad you didn't dither and lose the spot! It's reassuring to me that the combo is short-term with continued Keytruda after. Fingers and toes crossed that getting started early will cut this thing off at the pass for a long, long time! Do keep us posted.
Elaine
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Tagged: cutaneous melanoma
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