› Forums › General Melanoma Community › Stage 3a and dr recommending Yervoy. Looking for opinions please.
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CHD.
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- March 10, 2016 at 2:11 pm
Hi all,
i posted a month or so ago reference being newly diagnosed with melanoma. I've since then had WLE along with a Sentinel Lymph Node biopsy. The original melanoma was on the top of my foot and the lymph node biopsy done on my groin area. My surgery was 3 weeks ago. During my follow up, I was told we got clear margins in my foot, but that 2 nodes were positive for micro melanoma.. My surgical oncologist only recommended a watch and wait approach. With suggestions from others, I went to a melanoma specialist and he has recommended the 2 year Yervoy treatment. I then went to another oncologist for another opinion and he agreed with the Yervoy treatment.
I am terrified of this treatment. I've read others stories and tried to research it as much as I can. I suppose one of the things that concerns me the most is that this drug is already highly toxic, but with being stage 3, it has to be the 10mg treatment versus the 3mg for stage 4.
What are your opinions regarding Yervoy for stage 3a? And if any of you could share your experiences, good and bad, it would be helpful. It seems the watch and wait approach has it's downfalls, and I'd feel like maybe I wasn't doing enough, yet this Yervoy scares me as well.. So I'm really confused where to go from here.. I have to make a decision soon, I go back for PET scan and visit with melanoma specialist right after to go over results from scan and set up Yervoy treatments.
Thanks in advance for your help.
- Replies
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- March 10, 2016 at 4:20 pm
First, I wouldn't be overly terrified. Most people tolerate Ipilumumab (Yervoy or Ipi) very well. They've gotten the dose done effectively. I'm not familiar with the "2 year" plan as, when I had Ipi, I had 4 doses, 3 weeks apart (essentially over 3 months). They're monitor your very closely and most stage 3 folks don't have a burden, so they're generally healthy.
My experience was fine. I had bone pain from metastasis and the ipi relieved that almost immediately. I otherwise developed some dry skin/rash and itchiness, but nothing was too bad at all.
As to whether to do it. That's a tough call. Every person who's ever had Stage III melanoma knows the recurrence rate is pretty high – uncomfortably so. Research has shown reductions in recurrence by about 25%. When I was Dxed Stage III, it was still in trial and I ended up on the Interferon arm. I elected against Interferon, but I would have done Ipi. That decision is as personal as it is professional. The feeling of not doing anything is also strong and difficult to handle. Plus pressure from others wondering why you've taken "watch and wait" or in some of their minds, "nothing" as an option. Just know, watching and waiting is far from giving up.
Additionally, there may be benefits to waiting as potential combination therapies (via trial) may be available which you could otherwise be excluded from based on having already done ipi.
Finally, ipi is still approved for stage IV. So if that does happen, you still have that option and/or a combination therapy. I believe the Ipi/Nivo trial is very promising, so perhaps that's the better choice.
I would certainly ask your doctor's why they would go one option over the other and tell them about the responses you've heard. Then you can make the best decision for you
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- March 10, 2016 at 4:20 pm
First, I wouldn't be overly terrified. Most people tolerate Ipilumumab (Yervoy or Ipi) very well. They've gotten the dose done effectively. I'm not familiar with the "2 year" plan as, when I had Ipi, I had 4 doses, 3 weeks apart (essentially over 3 months). They're monitor your very closely and most stage 3 folks don't have a burden, so they're generally healthy.
My experience was fine. I had bone pain from metastasis and the ipi relieved that almost immediately. I otherwise developed some dry skin/rash and itchiness, but nothing was too bad at all.
As to whether to do it. That's a tough call. Every person who's ever had Stage III melanoma knows the recurrence rate is pretty high – uncomfortably so. Research has shown reductions in recurrence by about 25%. When I was Dxed Stage III, it was still in trial and I ended up on the Interferon arm. I elected against Interferon, but I would have done Ipi. That decision is as personal as it is professional. The feeling of not doing anything is also strong and difficult to handle. Plus pressure from others wondering why you've taken "watch and wait" or in some of their minds, "nothing" as an option. Just know, watching and waiting is far from giving up.
Additionally, there may be benefits to waiting as potential combination therapies (via trial) may be available which you could otherwise be excluded from based on having already done ipi.
Finally, ipi is still approved for stage IV. So if that does happen, you still have that option and/or a combination therapy. I believe the Ipi/Nivo trial is very promising, so perhaps that's the better choice.
I would certainly ask your doctor's why they would go one option over the other and tell them about the responses you've heard. Then you can make the best decision for you
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- March 10, 2016 at 4:20 pm
First, I wouldn't be overly terrified. Most people tolerate Ipilumumab (Yervoy or Ipi) very well. They've gotten the dose done effectively. I'm not familiar with the "2 year" plan as, when I had Ipi, I had 4 doses, 3 weeks apart (essentially over 3 months). They're monitor your very closely and most stage 3 folks don't have a burden, so they're generally healthy.
My experience was fine. I had bone pain from metastasis and the ipi relieved that almost immediately. I otherwise developed some dry skin/rash and itchiness, but nothing was too bad at all.
As to whether to do it. That's a tough call. Every person who's ever had Stage III melanoma knows the recurrence rate is pretty high – uncomfortably so. Research has shown reductions in recurrence by about 25%. When I was Dxed Stage III, it was still in trial and I ended up on the Interferon arm. I elected against Interferon, but I would have done Ipi. That decision is as personal as it is professional. The feeling of not doing anything is also strong and difficult to handle. Plus pressure from others wondering why you've taken "watch and wait" or in some of their minds, "nothing" as an option. Just know, watching and waiting is far from giving up.
Additionally, there may be benefits to waiting as potential combination therapies (via trial) may be available which you could otherwise be excluded from based on having already done ipi.
Finally, ipi is still approved for stage IV. So if that does happen, you still have that option and/or a combination therapy. I believe the Ipi/Nivo trial is very promising, so perhaps that's the better choice.
I would certainly ask your doctor's why they would go one option over the other and tell them about the responses you've heard. Then you can make the best decision for you
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- March 10, 2016 at 7:11 pm
Hi, thank you for your response ! The 2 year treatment he said would be receiving treatment every 3 weeks for 3 months, then it would be once every 3 months til I reached the 2 year mark. That's awesome that the treatment relieved your bone pain, and that you tolerated it well.. What you mentioned regarding ipi being approved for stage 4 also is something I've given a lot of thought to. Maybe doing the watch and wait and if it did go to stage 4, then give it a try versus risking the side effects of it now.
I now have another dilemma. I'll try to make this as brief as possible. Apparently my surgeon sent info to the melanoma specialist that I saw as well as spoke to the dr I received the other opinion from yesterday and has told them both only 1 lymph node showed micro involvement. I had the path report with me at both places and when the melanoma specialist said 1 node positive, I stopped him and showed him my path report which clearly states 2 nodes positive. He made the comment that I was correct in reading it that way, but also stated that doesn't change anything on his end as far as treatment.
When I went to the 2nd oncologist yesterday, he had spoken with my surgeon on the phone and was going over what they discussed,he then mentioned 1 node involvement, I again stopped this dr and showed him my path report. He agreed it clearly stated 2 nodes. But for this dr, he said it does change his recommendation. He said when my surgeon told him only one node he did not agree with the Yervoy, but now that it's 2 nodes it changes his decision and he would also agree with the melanoma specialist and recommend Yervoy.
He also said he was going to call the pathologist that did my report and clarify if one or two nodes. So the dr just called to say he had spoken with the pathologist and he said the issue with that was a node had been sent in to him split in half and so it was in both halves not 2 different nodes.. I find this a little strange. First of all if that were the case, why wouldn't he have stated that in the description area of the report.. Instead of allowing it to read 2/2 then says 2 out of 2 nodes positive. So now this new dr for the 2nd opinion goes back to his original decision that no Yervoy due to only involvement of one node.
I go back to the melanoma specialist this Tuesday for the PET scan and to see him afterward to make a decision,I'll definitely let him know about what the pathologist said in reference to the nodes and see if it changes his opinion or not. But now I am even more confused…
I do apologize for this being so long!!!! And I truly appreciate your kind words..
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- March 10, 2016 at 7:11 pm
Hi, thank you for your response ! The 2 year treatment he said would be receiving treatment every 3 weeks for 3 months, then it would be once every 3 months til I reached the 2 year mark. That's awesome that the treatment relieved your bone pain, and that you tolerated it well.. What you mentioned regarding ipi being approved for stage 4 also is something I've given a lot of thought to. Maybe doing the watch and wait and if it did go to stage 4, then give it a try versus risking the side effects of it now.
I now have another dilemma. I'll try to make this as brief as possible. Apparently my surgeon sent info to the melanoma specialist that I saw as well as spoke to the dr I received the other opinion from yesterday and has told them both only 1 lymph node showed micro involvement. I had the path report with me at both places and when the melanoma specialist said 1 node positive, I stopped him and showed him my path report which clearly states 2 nodes positive. He made the comment that I was correct in reading it that way, but also stated that doesn't change anything on his end as far as treatment.
When I went to the 2nd oncologist yesterday, he had spoken with my surgeon on the phone and was going over what they discussed,he then mentioned 1 node involvement, I again stopped this dr and showed him my path report. He agreed it clearly stated 2 nodes. But for this dr, he said it does change his recommendation. He said when my surgeon told him only one node he did not agree with the Yervoy, but now that it's 2 nodes it changes his decision and he would also agree with the melanoma specialist and recommend Yervoy.
He also said he was going to call the pathologist that did my report and clarify if one or two nodes. So the dr just called to say he had spoken with the pathologist and he said the issue with that was a node had been sent in to him split in half and so it was in both halves not 2 different nodes.. I find this a little strange. First of all if that were the case, why wouldn't he have stated that in the description area of the report.. Instead of allowing it to read 2/2 then says 2 out of 2 nodes positive. So now this new dr for the 2nd opinion goes back to his original decision that no Yervoy due to only involvement of one node.
I go back to the melanoma specialist this Tuesday for the PET scan and to see him afterward to make a decision,I'll definitely let him know about what the pathologist said in reference to the nodes and see if it changes his opinion or not. But now I am even more confused…
I do apologize for this being so long!!!! And I truly appreciate your kind words..
-
- March 10, 2016 at 7:11 pm
Hi, thank you for your response ! The 2 year treatment he said would be receiving treatment every 3 weeks for 3 months, then it would be once every 3 months til I reached the 2 year mark. That's awesome that the treatment relieved your bone pain, and that you tolerated it well.. What you mentioned regarding ipi being approved for stage 4 also is something I've given a lot of thought to. Maybe doing the watch and wait and if it did go to stage 4, then give it a try versus risking the side effects of it now.
I now have another dilemma. I'll try to make this as brief as possible. Apparently my surgeon sent info to the melanoma specialist that I saw as well as spoke to the dr I received the other opinion from yesterday and has told them both only 1 lymph node showed micro involvement. I had the path report with me at both places and when the melanoma specialist said 1 node positive, I stopped him and showed him my path report which clearly states 2 nodes positive. He made the comment that I was correct in reading it that way, but also stated that doesn't change anything on his end as far as treatment.
When I went to the 2nd oncologist yesterday, he had spoken with my surgeon on the phone and was going over what they discussed,he then mentioned 1 node involvement, I again stopped this dr and showed him my path report. He agreed it clearly stated 2 nodes. But for this dr, he said it does change his recommendation. He said when my surgeon told him only one node he did not agree with the Yervoy, but now that it's 2 nodes it changes his decision and he would also agree with the melanoma specialist and recommend Yervoy.
He also said he was going to call the pathologist that did my report and clarify if one or two nodes. So the dr just called to say he had spoken with the pathologist and he said the issue with that was a node had been sent in to him split in half and so it was in both halves not 2 different nodes.. I find this a little strange. First of all if that were the case, why wouldn't he have stated that in the description area of the report.. Instead of allowing it to read 2/2 then says 2 out of 2 nodes positive. So now this new dr for the 2nd opinion goes back to his original decision that no Yervoy due to only involvement of one node.
I go back to the melanoma specialist this Tuesday for the PET scan and to see him afterward to make a decision,I'll definitely let him know about what the pathologist said in reference to the nodes and see if it changes his opinion or not. But now I am even more confused…
I do apologize for this being so long!!!! And I truly appreciate your kind words..
-
- March 10, 2016 at 10:09 pm
Hi–I don't know where you are located or who you are seeing, but from my experience with stage 4, I would try to go to a major (university) cancer center. The docs at the major centers are usually much more creative and aggressive than ones at your local cancer center. I don't know exactly what is currently approved for stage III, but if you can get it, either of the PD-1 drugs, Opdivo (Nivolumab) or Keytruda (Pembrolizumab), is much more effective than Yervoy (Ipilimumab), and the combo is the most effective, albeit with the most side effects. There are always exceptions, but generally speaking, the PD-1 drugs have far fewer side effects than Yervoy and have a much greater response rate. I am surprised that your doc is talking about a 2 year program for Yervoy–usually people don't tolerate more than 4 doses, and I didn't think anyone could get 10 mg of Yervoy anymore–I know that was done in phase one trials, but the accepted dose is 3 mg. What I am hearing you say just doesn't sound right for 2016. The more I read your letter, the more it sounds to me like your doc must be talking about Opdivo or Keytruda. I would double check on this, and if not, I would get a second opinion. Good luck. Ken
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- March 10, 2016 at 10:09 pm
Hi–I don't know where you are located or who you are seeing, but from my experience with stage 4, I would try to go to a major (university) cancer center. The docs at the major centers are usually much more creative and aggressive than ones at your local cancer center. I don't know exactly what is currently approved for stage III, but if you can get it, either of the PD-1 drugs, Opdivo (Nivolumab) or Keytruda (Pembrolizumab), is much more effective than Yervoy (Ipilimumab), and the combo is the most effective, albeit with the most side effects. There are always exceptions, but generally speaking, the PD-1 drugs have far fewer side effects than Yervoy and have a much greater response rate. I am surprised that your doc is talking about a 2 year program for Yervoy–usually people don't tolerate more than 4 doses, and I didn't think anyone could get 10 mg of Yervoy anymore–I know that was done in phase one trials, but the accepted dose is 3 mg. What I am hearing you say just doesn't sound right for 2016. The more I read your letter, the more it sounds to me like your doc must be talking about Opdivo or Keytruda. I would double check on this, and if not, I would get a second opinion. Good luck. Ken
-
- March 10, 2016 at 10:09 pm
Hi–I don't know where you are located or who you are seeing, but from my experience with stage 4, I would try to go to a major (university) cancer center. The docs at the major centers are usually much more creative and aggressive than ones at your local cancer center. I don't know exactly what is currently approved for stage III, but if you can get it, either of the PD-1 drugs, Opdivo (Nivolumab) or Keytruda (Pembrolizumab), is much more effective than Yervoy (Ipilimumab), and the combo is the most effective, albeit with the most side effects. There are always exceptions, but generally speaking, the PD-1 drugs have far fewer side effects than Yervoy and have a much greater response rate. I am surprised that your doc is talking about a 2 year program for Yervoy–usually people don't tolerate more than 4 doses, and I didn't think anyone could get 10 mg of Yervoy anymore–I know that was done in phase one trials, but the accepted dose is 3 mg. What I am hearing you say just doesn't sound right for 2016. The more I read your letter, the more it sounds to me like your doc must be talking about Opdivo or Keytruda. I would double check on this, and if not, I would get a second opinion. Good luck. Ken
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- March 10, 2016 at 11:59 pm
Watch and wait is still the top recommendation for stage 3. Now having Yervoy has an option is great too. I chose to do Yervoy myself, I am stage 3b. I did the 4 main doses, it is 10mg/kg for our stage but that does not mean you are getting more than triple the dosage, it does not cause side effects to be worse at that dosage. I have had mild side effects and dealt with the infusions well. I didn't know there was a 2 year plan. I will be doing the every 3 month infusions now but it will go until I've done Yervoy for 1 year, so for me that means 3 more infusions of Yervoy this year.
This video is very informative and will explain better about stage 3 options:
There are some stage 3 clinical trials going on testing the other immunotherapy drugs like Opdivo and Keytruda. They are not available for our stage yet.
These choices we deal with are very personal and you'll make the right one for yourself. Give the video a watch, it is a bit long but it's good to get educated.
All the best,
-
- March 10, 2016 at 11:59 pm
Watch and wait is still the top recommendation for stage 3. Now having Yervoy has an option is great too. I chose to do Yervoy myself, I am stage 3b. I did the 4 main doses, it is 10mg/kg for our stage but that does not mean you are getting more than triple the dosage, it does not cause side effects to be worse at that dosage. I have had mild side effects and dealt with the infusions well. I didn't know there was a 2 year plan. I will be doing the every 3 month infusions now but it will go until I've done Yervoy for 1 year, so for me that means 3 more infusions of Yervoy this year.
This video is very informative and will explain better about stage 3 options:
There are some stage 3 clinical trials going on testing the other immunotherapy drugs like Opdivo and Keytruda. They are not available for our stage yet.
These choices we deal with are very personal and you'll make the right one for yourself. Give the video a watch, it is a bit long but it's good to get educated.
All the best,
-
- March 11, 2016 at 12:29 am
Wow, I didn't realize that they are using 10 mg ipi for stage 3. Seems odd to me, since up until the PD-1 drugs were approved, 3 mg was used for stage 4. Having been through stage 4, and having had the combo of ipi and nivo in a clinical trial, and talking with a lot of docs about both medications, I am very biased towards the PD-1 drugs.
I'm sorry for any misinformation I may have given.
Anyway, try not to be too scared. I always looked forward to the infusions, and actually really liked when the medicine was going in, knowing that there was a very good likelihood they would be enabling my immune system to kill the cancer. But make sure to report any of the listed side effects to your doc right away, because they can be dangerous if not treated promptly. Sometimes ipi (yervoy) has been stopped after one or two infusions because of the side effects, and just the one or two treatments have been very effective.
The combo of ipi/nivo worked so well in stage 4 trials, both phase 2 and 3 trials, that it is now approved for stage 4. Best of luck, Ken
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- March 11, 2016 at 12:29 am
Wow, I didn't realize that they are using 10 mg ipi for stage 3. Seems odd to me, since up until the PD-1 drugs were approved, 3 mg was used for stage 4. Having been through stage 4, and having had the combo of ipi and nivo in a clinical trial, and talking with a lot of docs about both medications, I am very biased towards the PD-1 drugs.
I'm sorry for any misinformation I may have given.
Anyway, try not to be too scared. I always looked forward to the infusions, and actually really liked when the medicine was going in, knowing that there was a very good likelihood they would be enabling my immune system to kill the cancer. But make sure to report any of the listed side effects to your doc right away, because they can be dangerous if not treated promptly. Sometimes ipi (yervoy) has been stopped after one or two infusions because of the side effects, and just the one or two treatments have been very effective.
The combo of ipi/nivo worked so well in stage 4 trials, both phase 2 and 3 trials, that it is now approved for stage 4. Best of luck, Ken
-
- March 11, 2016 at 12:29 am
Wow, I didn't realize that they are using 10 mg ipi for stage 3. Seems odd to me, since up until the PD-1 drugs were approved, 3 mg was used for stage 4. Having been through stage 4, and having had the combo of ipi and nivo in a clinical trial, and talking with a lot of docs about both medications, I am very biased towards the PD-1 drugs.
I'm sorry for any misinformation I may have given.
Anyway, try not to be too scared. I always looked forward to the infusions, and actually really liked when the medicine was going in, knowing that there was a very good likelihood they would be enabling my immune system to kill the cancer. But make sure to report any of the listed side effects to your doc right away, because they can be dangerous if not treated promptly. Sometimes ipi (yervoy) has been stopped after one or two infusions because of the side effects, and just the one or two treatments have been very effective.
The combo of ipi/nivo worked so well in stage 4 trials, both phase 2 and 3 trials, that it is now approved for stage 4. Best of luck, Ken
-
- March 10, 2016 at 11:59 pm
Watch and wait is still the top recommendation for stage 3. Now having Yervoy has an option is great too. I chose to do Yervoy myself, I am stage 3b. I did the 4 main doses, it is 10mg/kg for our stage but that does not mean you are getting more than triple the dosage, it does not cause side effects to be worse at that dosage. I have had mild side effects and dealt with the infusions well. I didn't know there was a 2 year plan. I will be doing the every 3 month infusions now but it will go until I've done Yervoy for 1 year, so for me that means 3 more infusions of Yervoy this year.
This video is very informative and will explain better about stage 3 options:
There are some stage 3 clinical trials going on testing the other immunotherapy drugs like Opdivo and Keytruda. They are not available for our stage yet.
These choices we deal with are very personal and you'll make the right one for yourself. Give the video a watch, it is a bit long but it's good to get educated.
All the best,
-
- March 11, 2016 at 4:35 am
BA – I am a 3A and did the Interferon route last year because that was the only real option. If I was in your situation I would do the IPI route but at 3 mg NOT 10 mg. (my melanoma specialist would have gone that route if I had been diagnosed in 2015 instead of 2014.
Other stage 3 patients have gotten that approved…and I would push hard to do that to mitigate the potential harsh side effects. (several people died in that study)…having said that I think the docs have learned better ways of handling the situation.
Own your decision and push hard for what you want.
Best wishes
Michel
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- March 11, 2016 at 4:35 am
BA – I am a 3A and did the Interferon route last year because that was the only real option. If I was in your situation I would do the IPI route but at 3 mg NOT 10 mg. (my melanoma specialist would have gone that route if I had been diagnosed in 2015 instead of 2014.
Other stage 3 patients have gotten that approved…and I would push hard to do that to mitigate the potential harsh side effects. (several people died in that study)…having said that I think the docs have learned better ways of handling the situation.
Own your decision and push hard for what you want.
Best wishes
Michel
-
- March 11, 2016 at 4:35 am
BA – I am a 3A and did the Interferon route last year because that was the only real option. If I was in your situation I would do the IPI route but at 3 mg NOT 10 mg. (my melanoma specialist would have gone that route if I had been diagnosed in 2015 instead of 2014.
Other stage 3 patients have gotten that approved…and I would push hard to do that to mitigate the potential harsh side effects. (several people died in that study)…having said that I think the docs have learned better ways of handling the situation.
Own your decision and push hard for what you want.
Best wishes
Michel
-
- March 12, 2016 at 3:18 am
I had 3mg/kg Ipi without further maitenance doses, which is the normal treatment in the UK.
I was lucky (ipi responder) and unlucky (permanently damaged anterior pituitary gland). I think the damaged ptuitary gland is one of the worst long-term effects of ipi but I am coping with it just fine. It only happens in a small minority of patients.
It might be harder if I was not a post-menopausal woman as one of the sets of hormones that have been switched off are the reporductive hormones. Due to my age and gender, it is only worth replacing my missing thyroxine and cortisol.
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- March 12, 2016 at 3:18 am
I had 3mg/kg Ipi without further maitenance doses, which is the normal treatment in the UK.
I was lucky (ipi responder) and unlucky (permanently damaged anterior pituitary gland). I think the damaged ptuitary gland is one of the worst long-term effects of ipi but I am coping with it just fine. It only happens in a small minority of patients.
It might be harder if I was not a post-menopausal woman as one of the sets of hormones that have been switched off are the reporductive hormones. Due to my age and gender, it is only worth replacing my missing thyroxine and cortisol.
-
- March 12, 2016 at 3:18 am
I had 3mg/kg Ipi without further maitenance doses, which is the normal treatment in the UK.
I was lucky (ipi responder) and unlucky (permanently damaged anterior pituitary gland). I think the damaged ptuitary gland is one of the worst long-term effects of ipi but I am coping with it just fine. It only happens in a small minority of patients.
It might be harder if I was not a post-menopausal woman as one of the sets of hormones that have been switched off are the reporductive hormones. Due to my age and gender, it is only worth replacing my missing thyroxine and cortisol.
-
- March 12, 2016 at 4:10 am
Hi Ba,
Just wanted to add my 2 cents. I am mucosal, and not 3a (different form of melanoma, different challenges) and this IS a personal decision, but based on the experience of other stage 3'ers I have known, I would tend to lean more toward doing too much versus too little, based on the nature of the disease. But I do think I would lean toward treatment in your situation, but again it is a personal choice. With all the confusion surrounding your lymph nodes, I am wondering if it would be possible for you to seek out an opinion from one of the major centers treating melanoma. You are doing great seeing ANY sort of melanoma specialist versus the average oncologist, and I am not sure where you are located, but there are a handful of excellent cancer centers with top experts in the field, among them Sloan Kettering, MD Anderson, Johns Hopkins, The Angeles Center, and Moffitt in Florida. and if it is possible to get seen at one of them, I would highly recommend it. Again, a specialist anywhere is a good thing, but these guys are the big leagues, and it may be worth the extra effort and expense if you can possibly manage it. My questions for them would be: Why Yervoy versus one of the other drugs? And for how long? If you are going to entertain the possibility of any treatment, with its possible toxicities, I would want to be absolutely certain it is the right one and for the right length of time, to the best of my ability.
Some of the others here with stage 3A have much more to contribute, I'm sure, but just wanted to chime in.
Good luck to you!
Cheri
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- March 12, 2016 at 4:10 am
Hi Ba,
Just wanted to add my 2 cents. I am mucosal, and not 3a (different form of melanoma, different challenges) and this IS a personal decision, but based on the experience of other stage 3'ers I have known, I would tend to lean more toward doing too much versus too little, based on the nature of the disease. But I do think I would lean toward treatment in your situation, but again it is a personal choice. With all the confusion surrounding your lymph nodes, I am wondering if it would be possible for you to seek out an opinion from one of the major centers treating melanoma. You are doing great seeing ANY sort of melanoma specialist versus the average oncologist, and I am not sure where you are located, but there are a handful of excellent cancer centers with top experts in the field, among them Sloan Kettering, MD Anderson, Johns Hopkins, The Angeles Center, and Moffitt in Florida. and if it is possible to get seen at one of them, I would highly recommend it. Again, a specialist anywhere is a good thing, but these guys are the big leagues, and it may be worth the extra effort and expense if you can possibly manage it. My questions for them would be: Why Yervoy versus one of the other drugs? And for how long? If you are going to entertain the possibility of any treatment, with its possible toxicities, I would want to be absolutely certain it is the right one and for the right length of time, to the best of my ability.
Some of the others here with stage 3A have much more to contribute, I'm sure, but just wanted to chime in.
Good luck to you!
Cheri
-
- March 12, 2016 at 4:10 am
Hi Ba,
Just wanted to add my 2 cents. I am mucosal, and not 3a (different form of melanoma, different challenges) and this IS a personal decision, but based on the experience of other stage 3'ers I have known, I would tend to lean more toward doing too much versus too little, based on the nature of the disease. But I do think I would lean toward treatment in your situation, but again it is a personal choice. With all the confusion surrounding your lymph nodes, I am wondering if it would be possible for you to seek out an opinion from one of the major centers treating melanoma. You are doing great seeing ANY sort of melanoma specialist versus the average oncologist, and I am not sure where you are located, but there are a handful of excellent cancer centers with top experts in the field, among them Sloan Kettering, MD Anderson, Johns Hopkins, The Angeles Center, and Moffitt in Florida. and if it is possible to get seen at one of them, I would highly recommend it. Again, a specialist anywhere is a good thing, but these guys are the big leagues, and it may be worth the extra effort and expense if you can possibly manage it. My questions for them would be: Why Yervoy versus one of the other drugs? And for how long? If you are going to entertain the possibility of any treatment, with its possible toxicities, I would want to be absolutely certain it is the right one and for the right length of time, to the best of my ability.
Some of the others here with stage 3A have much more to contribute, I'm sure, but just wanted to chime in.
Good luck to you!
Cheri
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