› Forums › General Melanoma Community › Adjuvant Yervoy Questions
- This topic has 111 replies, 15 voices, and was last updated 8 years, 4 months ago by
jsagraves.
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- November 2, 2015 at 3:33 pm
Hello all,
I am currently stage 3b (T1bN1aM0) and have been recurrence free since July 2014. Hooray!
I see my oncologist at Loyola Medical Center in Chicago and have an oncologist at Memorial Sloan Kettering in New York.
Both of those doctors advised me against having a complete lymph node dissection because my one node was *only* micro positive for melanoma and both of them felt having lymph nodes is more important for long-term health than having them out when the risk of spread is low. This decision made me nervous, but I decided to go along with it, and I'm still solid about it.
I did not have interferon because (again) both doctors felt that the side effect profile of interferon and the low probability that it increases survival made it not a good choice for me.
Now…enter Yervoy.
I have been NED for 16 months with no treatment beyond WLE / SLNB. I am seeing a dermatologist every 3 months and the oncologist every 4 months.
Can you all tell me how you're going about deciding whether or not to do adjuvant Yervoy?
I'd really appreciate hearing your thought process on this big decision.
Best,
Elaine
- Replies
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- November 2, 2015 at 9:13 pm
Elaine,
I am a Stage IIIB very similar to you, however I made the choice to have a CLND only to determine that no cancer was found in any of the nodes other than the SLN. It was a choice I made to have the CLND as I was told I would not be permitted into any clinical trial without the lymph nodes being removed.
I was told I had a 50/50 chance of my cancer returning at an unknown time and unknown location so I entered into a clinical trial to receive either Yervoy or Opdivo to hopefully keep the cancer from returning.
Now Yervoy is approved by the FDA for us stage IIIB's so what do you do? I really think you need to talk to your DR about this as it does seem you are doing very well. I lost nerve feeling under my left arm and I am scheduled to have 32 IV infusions during the next year for treatment so I had a port put in. If you got just Yervoy you will get 4 infusions (one every 3 weeks) and then 3 infusions once every 3 months for the remainder of the year (maybe you have to ask your DR about that).
Someone posted this a few posts back on the benefit of Yervoy for stage III so it really looks you need to talk it over with an expert Dr if you should move forward.
Tom
Here is something to think about that my oncologist Dr Jason Luke had about ipi as adjuvant. Ipi has shown a 25% success rate as an adjuvant and a 22% success rate in stage 4. He sees no statistical advantage to taking it as adjuvant because the side effects can be severe. His opinion is why put yourself through the chance of immune related events when there is a chance the cancer may not return. If it does you statistically have the same chance of responding. I hope the pd-1 drugs show a much better efficacy as adjuvant therapy which remains to be seen.
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- November 2, 2015 at 11:24 pm
I am a 3A and been on Interferon for the past 9 months. It has not been picnic but it is also doable. And to be honest the side effects are many BUT also none that were horrific or life threatening (for me)….just like getting the 24 hour flu 3 times a week.
At the time of my diagnosis, there was really no other choice so I took that route…but now there is a choice. But I wonder what choice is the best one for 3A. The Yervoy choice has some very real side affects that are potentially critical.
I am just wondering what others think about this choice for 3A/B patients….and maybe thoughts from the Stage 4 on their experiences/side effects as it would relate to 3A where the reoccurrence rate is about 30% to begin with?
Michel
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- November 2, 2015 at 11:24 pm
I am a 3A and been on Interferon for the past 9 months. It has not been picnic but it is also doable. And to be honest the side effects are many BUT also none that were horrific or life threatening (for me)….just like getting the 24 hour flu 3 times a week.
At the time of my diagnosis, there was really no other choice so I took that route…but now there is a choice. But I wonder what choice is the best one for 3A. The Yervoy choice has some very real side affects that are potentially critical.
I am just wondering what others think about this choice for 3A/B patients….and maybe thoughts from the Stage 4 on their experiences/side effects as it would relate to 3A where the reoccurrence rate is about 30% to begin with?
Michel
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- November 2, 2015 at 11:24 pm
I am a 3A and been on Interferon for the past 9 months. It has not been picnic but it is also doable. And to be honest the side effects are many BUT also none that were horrific or life threatening (for me)….just like getting the 24 hour flu 3 times a week.
At the time of my diagnosis, there was really no other choice so I took that route…but now there is a choice. But I wonder what choice is the best one for 3A. The Yervoy choice has some very real side affects that are potentially critical.
I am just wondering what others think about this choice for 3A/B patients….and maybe thoughts from the Stage 4 on their experiences/side effects as it would relate to 3A where the reoccurrence rate is about 30% to begin with?
Michel
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- December 5, 2015 at 10:09 am
Tom, I was wondering about your nerve damage / loss of feeling under your arm. When did you have your CLND? I had CLND from under my right arm and also in my neck in Nov 2015 (just 3 weeks ago) and have a lot of numbness throughout those areas. Doctors say it can take 3 months to a year (sometimes more) for the nerves to regenerate and feeling to return. Of course some of the numbness can be permanent.
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- December 5, 2015 at 10:09 am
Tom, I was wondering about your nerve damage / loss of feeling under your arm. When did you have your CLND? I had CLND from under my right arm and also in my neck in Nov 2015 (just 3 weeks ago) and have a lot of numbness throughout those areas. Doctors say it can take 3 months to a year (sometimes more) for the nerves to regenerate and feeling to return. Of course some of the numbness can be permanent.
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- December 5, 2015 at 10:09 am
Tom, I was wondering about your nerve damage / loss of feeling under your arm. When did you have your CLND? I had CLND from under my right arm and also in my neck in Nov 2015 (just 3 weeks ago) and have a lot of numbness throughout those areas. Doctors say it can take 3 months to a year (sometimes more) for the nerves to regenerate and feeling to return. Of course some of the numbness can be permanent.
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- November 2, 2015 at 9:13 pm
Elaine,
I am a Stage IIIB very similar to you, however I made the choice to have a CLND only to determine that no cancer was found in any of the nodes other than the SLN. It was a choice I made to have the CLND as I was told I would not be permitted into any clinical trial without the lymph nodes being removed.
I was told I had a 50/50 chance of my cancer returning at an unknown time and unknown location so I entered into a clinical trial to receive either Yervoy or Opdivo to hopefully keep the cancer from returning.
Now Yervoy is approved by the FDA for us stage IIIB's so what do you do? I really think you need to talk to your DR about this as it does seem you are doing very well. I lost nerve feeling under my left arm and I am scheduled to have 32 IV infusions during the next year for treatment so I had a port put in. If you got just Yervoy you will get 4 infusions (one every 3 weeks) and then 3 infusions once every 3 months for the remainder of the year (maybe you have to ask your DR about that).
Someone posted this a few posts back on the benefit of Yervoy for stage III so it really looks you need to talk it over with an expert Dr if you should move forward.
Tom
Re: FDA Approves Ipilimumab for Stage III Melanoma Patients
jamieth29 – (10/28/2015 – 8:55pm)
Here is something to think about that my oncologist Dr Jason Luke had about ipi as adjuvant. Ipi has shown a 25% success rate as an adjuvant and a 22% success rate in stage 4. He sees no statistical advantage to taking it as adjuvant because the side effects can be severe. His opinion is why put yourself through the chance of immune related events when there is a chance the cancer may not return. If it does you statistically have the same chance of responding. I hope the pd-1 drugs show a much better efficacy as adjuvant therapy which remains to be seen.
-
- November 2, 2015 at 9:13 pm
Elaine,
I am a Stage IIIB very similar to you, however I made the choice to have a CLND only to determine that no cancer was found in any of the nodes other than the SLN. It was a choice I made to have the CLND as I was told I would not be permitted into any clinical trial without the lymph nodes being removed.
I was told I had a 50/50 chance of my cancer returning at an unknown time and unknown location so I entered into a clinical trial to receive either Yervoy or Opdivo to hopefully keep the cancer from returning.
Now Yervoy is approved by the FDA for us stage IIIB's so what do you do? I really think you need to talk to your DR about this as it does seem you are doing very well. I lost nerve feeling under my left arm and I am scheduled to have 32 IV infusions during the next year for treatment so I had a port put in. If you got just Yervoy you will get 4 infusions (one every 3 weeks) and then 3 infusions once every 3 months for the remainder of the year (maybe you have to ask your DR about that).
Someone posted this a few posts back on the benefit of Yervoy for stage III so it really looks you need to talk it over with an expert Dr if you should move forward.
Tom
Re: FDA Approves Ipilimumab for Stage III Melanoma Patients
jamieth29 – (10/28/2015 – 8:55pm)
Here is something to think about that my oncologist Dr Jason Luke had about ipi as adjuvant. Ipi has shown a 25% success rate as an adjuvant and a 22% success rate in stage 4. He sees no statistical advantage to taking it as adjuvant because the side effects can be severe. His opinion is why put yourself through the chance of immune related events when there is a chance the cancer may not return. If it does you statistically have the same chance of responding. I hope the pd-1 drugs show a much better efficacy as adjuvant therapy which remains to be seen.
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- November 2, 2015 at 11:29 pm
Thanks for your replies. I emailed my docs at MSKCC and Loyola and I got a call from MSKCC that the doctor would like to speak to me by phone on Wednesday.
I'll be spending the next two days reading about side effects, because I'm thinking (in the back of my mind) that the risk of side effects may not be worth it because my health is good now.
This disease is so tricky in how it hides / sleeps in your body. You never really feel safe, and it's difficult to appreciate being able to take a "wait and see" approach.
Thanks for your help in trying to sort it all out!Elaine -
- November 2, 2015 at 11:29 pm
Thanks for your replies. I emailed my docs at MSKCC and Loyola and I got a call from MSKCC that the doctor would like to speak to me by phone on Wednesday.
I'll be spending the next two days reading about side effects, because I'm thinking (in the back of my mind) that the risk of side effects may not be worth it because my health is good now.
This disease is so tricky in how it hides / sleeps in your body. You never really feel safe, and it's difficult to appreciate being able to take a "wait and see" approach.
Thanks for your help in trying to sort it all out!Elaine -
- November 2, 2015 at 11:29 pm
Thanks for your replies. I emailed my docs at MSKCC and Loyola and I got a call from MSKCC that the doctor would like to speak to me by phone on Wednesday.
I'll be spending the next two days reading about side effects, because I'm thinking (in the back of my mind) that the risk of side effects may not be worth it because my health is good now.
This disease is so tricky in how it hides / sleeps in your body. You never really feel safe, and it's difficult to appreciate being able to take a "wait and see" approach.
Thanks for your help in trying to sort it all out!Elaine -
- November 3, 2015 at 1:49 am
Read Tim's post below because Yervoy as adjuvant therapy dosage is 10mg/kg versus 3 mg/kg currently used in stage IV therapy. Since the side effects could be significant, this might influence my decision to use this as adjuvant.
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- November 3, 2015 at 7:14 am
When I went to MDA in 2011 (second opinion) the oncologist there was an advocate of the higher dose of 10 mg/kg. At that time she said I should keep an eye out for any opportunites in trials to get the higher dose. 4 years ago is a long time and the treatment landscape has changed. But I did have the impression she thought it as more efficacious at the higher dose. I was nervous about getting the 3 mg/kg I did get that year. I understand being nervous about 10 mg/kg. The higher dose was 'unobtainium' for adjuvant patients back then. Now it's avaible. If you're treated at a really experienced IPI treatment center, that might be a factor in your decision as far as how advanced they are on managing any adverse reactions that could occur. My doctors at UCSF read me the riot act about reporting to them right away if I had any changes/symptoms at all. I know from others here that when doctors get on top of adverse reactions quickly, they cand catch it before it has a chance to get worse.
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- November 3, 2015 at 7:14 am
When I went to MDA in 2011 (second opinion) the oncologist there was an advocate of the higher dose of 10 mg/kg. At that time she said I should keep an eye out for any opportunites in trials to get the higher dose. 4 years ago is a long time and the treatment landscape has changed. But I did have the impression she thought it as more efficacious at the higher dose. I was nervous about getting the 3 mg/kg I did get that year. I understand being nervous about 10 mg/kg. The higher dose was 'unobtainium' for adjuvant patients back then. Now it's avaible. If you're treated at a really experienced IPI treatment center, that might be a factor in your decision as far as how advanced they are on managing any adverse reactions that could occur. My doctors at UCSF read me the riot act about reporting to them right away if I had any changes/symptoms at all. I know from others here that when doctors get on top of adverse reactions quickly, they cand catch it before it has a chance to get worse.
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- November 3, 2015 at 7:14 am
When I went to MDA in 2011 (second opinion) the oncologist there was an advocate of the higher dose of 10 mg/kg. At that time she said I should keep an eye out for any opportunites in trials to get the higher dose. 4 years ago is a long time and the treatment landscape has changed. But I did have the impression she thought it as more efficacious at the higher dose. I was nervous about getting the 3 mg/kg I did get that year. I understand being nervous about 10 mg/kg. The higher dose was 'unobtainium' for adjuvant patients back then. Now it's avaible. If you're treated at a really experienced IPI treatment center, that might be a factor in your decision as far as how advanced they are on managing any adverse reactions that could occur. My doctors at UCSF read me the riot act about reporting to them right away if I had any changes/symptoms at all. I know from others here that when doctors get on top of adverse reactions quickly, they cand catch it before it has a chance to get worse.
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- November 3, 2015 at 10:02 am
Just curious how you see a Dr in Chicago but also have a Dr at MSKCC too? I’m just thinking if this is something maybe JoshF can do too instead of having to travel but still getting the expertise of MSKCC from Chicago?-
- November 3, 2015 at 12:58 pm
When I was originally diagnosed, my pathology results were unclear, and my staging was wrong.
I traveled to MSKCC one time, and their lab sorted it out. The doc told me I was now a patient forever at MSKCC and could always see them / ask questions / be treated there.
This time the doc said he would save me the trip to NYC and would talk to me by phone. I'm guessing (mind reader!) that he's going to recommend against treatment.
We'll see…
Elaine
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- November 3, 2015 at 4:31 pm
Hi Elaine-
I'll be interested in what your onc at MSKCC says…please share after your conversation. After my 3rd recurrence (I'm Stage 4) end of 2014…surgery in Jan 2015, I seeked adjuvant treatment and it was advised against. I can't help wonder if it would've helped prevent the 4th recurrence I'm dealing with now.
Josh
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- November 3, 2015 at 4:31 pm
Hi Elaine-
I'll be interested in what your onc at MSKCC says…please share after your conversation. After my 3rd recurrence (I'm Stage 4) end of 2014…surgery in Jan 2015, I seeked adjuvant treatment and it was advised against. I can't help wonder if it would've helped prevent the 4th recurrence I'm dealing with now.
Josh
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- November 3, 2015 at 4:31 pm
Hi Elaine-
I'll be interested in what your onc at MSKCC says…please share after your conversation. After my 3rd recurrence (I'm Stage 4) end of 2014…surgery in Jan 2015, I seeked adjuvant treatment and it was advised against. I can't help wonder if it would've helped prevent the 4th recurrence I'm dealing with now.
Josh
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- November 3, 2015 at 12:58 pm
When I was originally diagnosed, my pathology results were unclear, and my staging was wrong.
I traveled to MSKCC one time, and their lab sorted it out. The doc told me I was now a patient forever at MSKCC and could always see them / ask questions / be treated there.
This time the doc said he would save me the trip to NYC and would talk to me by phone. I'm guessing (mind reader!) that he's going to recommend against treatment.
We'll see…
Elaine
-
- November 3, 2015 at 12:58 pm
When I was originally diagnosed, my pathology results were unclear, and my staging was wrong.
I traveled to MSKCC one time, and their lab sorted it out. The doc told me I was now a patient forever at MSKCC and could always see them / ask questions / be treated there.
This time the doc said he would save me the trip to NYC and would talk to me by phone. I'm guessing (mind reader!) that he's going to recommend against treatment.
We'll see…
Elaine
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- November 3, 2015 at 2:59 pm
Hello,
My husband started out the melanoma journey at the 3C and his SNB was negative and he did not have the CLND. 2 1/2 years later he went to stage IV and then in March 2011 he started Ipi 10mg/kg infusions along with daily self injections of GMCSF (which is 14 days you inject and then 7 days break for the 4 doses in 12 weeks then went on maintenance doses). In Oct. 2012 he became NED and remained on the maintenance doses of the Ipi (every 12 weeks) while still doing the GMCSF (self injections on the same schedule of every 14 days and 7 days break) till Dec. 2013. Well he has been NED for 3 years now. He had mets in the liver, lungs and an unresectable tumor one the back of his head pressing on the C1 – C2 Cervical spine and 4 sub q's that we took pictures of and watched shrink on the back of his head where the unresectable one was. If you want to read more check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- November 3, 2015 at 2:59 pm
Hello,
My husband started out the melanoma journey at the 3C and his SNB was negative and he did not have the CLND. 2 1/2 years later he went to stage IV and then in March 2011 he started Ipi 10mg/kg infusions along with daily self injections of GMCSF (which is 14 days you inject and then 7 days break for the 4 doses in 12 weeks then went on maintenance doses). In Oct. 2012 he became NED and remained on the maintenance doses of the Ipi (every 12 weeks) while still doing the GMCSF (self injections on the same schedule of every 14 days and 7 days break) till Dec. 2013. Well he has been NED for 3 years now. He had mets in the liver, lungs and an unresectable tumor one the back of his head pressing on the C1 – C2 Cervical spine and 4 sub q's that we took pictures of and watched shrink on the back of his head where the unresectable one was. If you want to read more check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
-
- November 3, 2015 at 2:59 pm
Hello,
My husband started out the melanoma journey at the 3C and his SNB was negative and he did not have the CLND. 2 1/2 years later he went to stage IV and then in March 2011 he started Ipi 10mg/kg infusions along with daily self injections of GMCSF (which is 14 days you inject and then 7 days break for the 4 doses in 12 weeks then went on maintenance doses). In Oct. 2012 he became NED and remained on the maintenance doses of the Ipi (every 12 weeks) while still doing the GMCSF (self injections on the same schedule of every 14 days and 7 days break) till Dec. 2013. Well he has been NED for 3 years now. He had mets in the liver, lungs and an unresectable tumor one the back of his head pressing on the C1 – C2 Cervical spine and 4 sub q's that we took pictures of and watched shrink on the back of his head where the unresectable one was. If you want to read more check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- November 3, 2015 at 8:12 pm
Hi Elaine-
Happy to see you have been NED for 16 months……i cant seem to get there……14 months to first recurrence and now just under 12 months to this 2nd recurrence.
I too am now asking about using IPI in this setting…when I met with SLOAN (mike postow) last December after the first recurrence he said no to IPI (noting it wasnt apprived in that setting, though one onc at U of P wanted to use it one me) and thought watch and wati would be best appraoch as they had no appropritae trials…..so i then moved to Dr. Pavlick at NYU…she too dod not think IPI was advisalbe ….. and recommended a vaccine trial which i did and comepleted in may of this year…
So now back to recurrence number #2….small sub q right near incision…..will have more surgery of course, but now need to know more about ADJUVANT options…..even yesterday Dr. Pavlick didnt think IPI was for me….to high a toxicity ….
She is recommending Radiation this time….but I still want to discuss systemic treatment.
Will be interested to see what others respsonses you get.
tks and best,
jenny
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- November 4, 2015 at 6:21 pm
I'm still waiting to talk to Dr. Postow, but my doctor at Loyola said that this is not a good route for me because therapy should be started 4-6 weeks after diagnosis, and I'm too far out.
I had never heard that before. Has that been your experience, those of you who have been through this?
Thanks!
Elaine
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- November 4, 2015 at 10:01 pm
I obviously see the point there, but it's not like I *forgot* to start treatment or put it off, the drug happened to be approved 16 months out for me.
As we are all painfully aware, plenty of recurrences happen more than 16 months out, and sometimes you look around for a life preserver. I know I'm not the only one who feels this way.
As for MSKCC, the recommendation is the same. He is "disinclined to recommend" Yervoy because the side effect profile and the fact that 5 people died in the trial make it not a good idea for someone in good health like I am (knock wood).
I am both satisfied with this response and glad I asked.
Thanks for the responses and support, all.
Elaine
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- November 5, 2015 at 12:51 am
Those deaths should NOT be trivialized for Stage 3 patients. Stage 4 patients should always take risk but I wonder if this is the right risk?
What I don't understand is why they went with 10 unit dosage when Stage 4 patients are getting 3 unit dosages. Can a doctor just reduce the strength to something less than 10? Seems like that would be to way to go.
In this case….the medicine may be worse than the original disease all things considered. I know all of the Stage 3 patients are looking for something better than Interferon. for adjunctive…but I am not sure this is the right route given the tremendous risks.
My guess is that most doctors are NOT going to recommend this at 10 units….but let's keep this conversation going as more folks talk to their doctors around the country.
Michel
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- November 5, 2015 at 3:14 pm
I completely agree, Michel.
I learned so much from reading the conversations on this board and other places about interferon. When my doctor explained to me why he didn't want to use interferon in my case (or in any case at MSKCC), I had so much background information after reading about others' experiences with this drug and their thoughts on its efficacy.
We stage 3 patients who are here at the beginning of the use of Yervoy as an adjuvant therapy should speak these thoughts out loud so others can join in the conversation, I think.
One of the hardest parts of managing a melanoma diagnosis can be the feeling of being all alone or having to make the decisions all alone. Most of us weren't cancer experts before our initial diagnosis and the learning curve is steep, and must be climbed very quickly!
In my case, the risk of the drug seems worse than the risk of the recurrence. Other patients with higher risk of recurrence may make a different decision.
My doctor reminded me that after more time has passed, and more results are available, Yervoy as adjuvant may look less risky.
Elaine
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- November 5, 2015 at 3:14 pm
I completely agree, Michel.
I learned so much from reading the conversations on this board and other places about interferon. When my doctor explained to me why he didn't want to use interferon in my case (or in any case at MSKCC), I had so much background information after reading about others' experiences with this drug and their thoughts on its efficacy.
We stage 3 patients who are here at the beginning of the use of Yervoy as an adjuvant therapy should speak these thoughts out loud so others can join in the conversation, I think.
One of the hardest parts of managing a melanoma diagnosis can be the feeling of being all alone or having to make the decisions all alone. Most of us weren't cancer experts before our initial diagnosis and the learning curve is steep, and must be climbed very quickly!
In my case, the risk of the drug seems worse than the risk of the recurrence. Other patients with higher risk of recurrence may make a different decision.
My doctor reminded me that after more time has passed, and more results are available, Yervoy as adjuvant may look less risky.
Elaine
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- November 5, 2015 at 3:14 pm
I completely agree, Michel.
I learned so much from reading the conversations on this board and other places about interferon. When my doctor explained to me why he didn't want to use interferon in my case (or in any case at MSKCC), I had so much background information after reading about others' experiences with this drug and their thoughts on its efficacy.
We stage 3 patients who are here at the beginning of the use of Yervoy as an adjuvant therapy should speak these thoughts out loud so others can join in the conversation, I think.
One of the hardest parts of managing a melanoma diagnosis can be the feeling of being all alone or having to make the decisions all alone. Most of us weren't cancer experts before our initial diagnosis and the learning curve is steep, and must be climbed very quickly!
In my case, the risk of the drug seems worse than the risk of the recurrence. Other patients with higher risk of recurrence may make a different decision.
My doctor reminded me that after more time has passed, and more results are available, Yervoy as adjuvant may look less risky.
Elaine
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- November 5, 2015 at 7:00 pm
Hello,
Here's the article from onclive that shows the 10mg has been approved.
http://www.onclive.com/web-exclusives/fda-approves-adjuvant-ipilimumab-in-melanoma
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- November 5, 2015 at 7:00 pm
Hello,
Here's the article from onclive that shows the 10mg has been approved.
http://www.onclive.com/web-exclusives/fda-approves-adjuvant-ipilimumab-in-melanoma
-
- November 5, 2015 at 7:00 pm
Hello,
Here's the article from onclive that shows the 10mg has been approved.
http://www.onclive.com/web-exclusives/fda-approves-adjuvant-ipilimumab-in-melanoma
-
- November 5, 2015 at 12:51 am
Those deaths should NOT be trivialized for Stage 3 patients. Stage 4 patients should always take risk but I wonder if this is the right risk?
What I don't understand is why they went with 10 unit dosage when Stage 4 patients are getting 3 unit dosages. Can a doctor just reduce the strength to something less than 10? Seems like that would be to way to go.
In this case….the medicine may be worse than the original disease all things considered. I know all of the Stage 3 patients are looking for something better than Interferon. for adjunctive…but I am not sure this is the right route given the tremendous risks.
My guess is that most doctors are NOT going to recommend this at 10 units….but let's keep this conversation going as more folks talk to their doctors around the country.
Michel
-
- November 5, 2015 at 12:51 am
Those deaths should NOT be trivialized for Stage 3 patients. Stage 4 patients should always take risk but I wonder if this is the right risk?
What I don't understand is why they went with 10 unit dosage when Stage 4 patients are getting 3 unit dosages. Can a doctor just reduce the strength to something less than 10? Seems like that would be to way to go.
In this case….the medicine may be worse than the original disease all things considered. I know all of the Stage 3 patients are looking for something better than Interferon. for adjunctive…but I am not sure this is the right route given the tremendous risks.
My guess is that most doctors are NOT going to recommend this at 10 units….but let's keep this conversation going as more folks talk to their doctors around the country.
Michel
-
- November 5, 2015 at 4:12 pm
Hi Elaine-
I was waiting to hear what MSK had to say about this….HAppy you are coming up on 16 months out…… i am now on recurrence number 2…..(each about 1 year out) this time we are going to do radiation after surgery…..but i have the same worry we all have…..when is it coming and where????
Of course there is a possibility it wont come back, but tough to just wait, especially now on recurrence #2, in same place…..
I pushed my ONC (Dr. Pavlick, whom I adore) to discuss systemic therapies with me…..but i know she is not in favor of IPI…..and since the FDA approval was for 10mg/kg the hi dose comes with serious risks..
SO the question, is what is out there to prevent recurrence for stage IIIB……instransit/local subqs…..i know Radiation is only for local contraol, and from what i read in many cases it still comes back….(maybe i should stop reading)
THere has been some VERY heated communication here….but healthy exchange of infromation is important, as we all can benefit.
Would love to hear any and all thoughts on this, to find options other than yervoy!
Thanks,
jenny
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- November 5, 2015 at 7:06 pm
Jenny,
Reading is both the best and worst thing, isn't it. Stage 3B is a very tricky place to be. My friends and family are always confused as to why I'm not "doing more", almost like I'm rejecting treatments. Sure, I "rejected" having my nodes removed after careful conversation with two doctors and I "rejected" interferon, but objectively speaking, neither of those treatments was really appropriate for me.
I'd LOVE to be "doing something", but there's just not much to be done in my case. Wish my brain would go ahead and understand that and stop being anxious. I guess that's just not meant to be.
All the best with your next steps, Jenny. You are in very good hands, and those doctors are going to do all they can to fight this sneaky beast. Thinking of you.
Elaine
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- November 5, 2015 at 7:06 pm
Jenny,
Reading is both the best and worst thing, isn't it. Stage 3B is a very tricky place to be. My friends and family are always confused as to why I'm not "doing more", almost like I'm rejecting treatments. Sure, I "rejected" having my nodes removed after careful conversation with two doctors and I "rejected" interferon, but objectively speaking, neither of those treatments was really appropriate for me.
I'd LOVE to be "doing something", but there's just not much to be done in my case. Wish my brain would go ahead and understand that and stop being anxious. I guess that's just not meant to be.
All the best with your next steps, Jenny. You are in very good hands, and those doctors are going to do all they can to fight this sneaky beast. Thinking of you.
Elaine
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- November 5, 2015 at 7:06 pm
Jenny,
Reading is both the best and worst thing, isn't it. Stage 3B is a very tricky place to be. My friends and family are always confused as to why I'm not "doing more", almost like I'm rejecting treatments. Sure, I "rejected" having my nodes removed after careful conversation with two doctors and I "rejected" interferon, but objectively speaking, neither of those treatments was really appropriate for me.
I'd LOVE to be "doing something", but there's just not much to be done in my case. Wish my brain would go ahead and understand that and stop being anxious. I guess that's just not meant to be.
All the best with your next steps, Jenny. You are in very good hands, and those doctors are going to do all they can to fight this sneaky beast. Thinking of you.
Elaine
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- November 5, 2015 at 4:12 pm
Hi Elaine-
I was waiting to hear what MSK had to say about this….HAppy you are coming up on 16 months out…… i am now on recurrence number 2…..(each about 1 year out) this time we are going to do radiation after surgery…..but i have the same worry we all have…..when is it coming and where????
Of course there is a possibility it wont come back, but tough to just wait, especially now on recurrence #2, in same place…..
I pushed my ONC (Dr. Pavlick, whom I adore) to discuss systemic therapies with me…..but i know she is not in favor of IPI…..and since the FDA approval was for 10mg/kg the hi dose comes with serious risks..
SO the question, is what is out there to prevent recurrence for stage IIIB……instransit/local subqs…..i know Radiation is only for local contraol, and from what i read in many cases it still comes back….(maybe i should stop reading)
THere has been some VERY heated communication here….but healthy exchange of infromation is important, as we all can benefit.
Would love to hear any and all thoughts on this, to find options other than yervoy!
Thanks,
jenny
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- November 5, 2015 at 4:12 pm
Hi Elaine-
I was waiting to hear what MSK had to say about this….HAppy you are coming up on 16 months out…… i am now on recurrence number 2…..(each about 1 year out) this time we are going to do radiation after surgery…..but i have the same worry we all have…..when is it coming and where????
Of course there is a possibility it wont come back, but tough to just wait, especially now on recurrence #2, in same place…..
I pushed my ONC (Dr. Pavlick, whom I adore) to discuss systemic therapies with me…..but i know she is not in favor of IPI…..and since the FDA approval was for 10mg/kg the hi dose comes with serious risks..
SO the question, is what is out there to prevent recurrence for stage IIIB……instransit/local subqs…..i know Radiation is only for local contraol, and from what i read in many cases it still comes back….(maybe i should stop reading)
THere has been some VERY heated communication here….but healthy exchange of infromation is important, as we all can benefit.
Would love to hear any and all thoughts on this, to find options other than yervoy!
Thanks,
jenny
-
- November 4, 2015 at 10:01 pm
I obviously see the point there, but it's not like I *forgot* to start treatment or put it off, the drug happened to be approved 16 months out for me.
As we are all painfully aware, plenty of recurrences happen more than 16 months out, and sometimes you look around for a life preserver. I know I'm not the only one who feels this way.
As for MSKCC, the recommendation is the same. He is "disinclined to recommend" Yervoy because the side effect profile and the fact that 5 people died in the trial make it not a good idea for someone in good health like I am (knock wood).
I am both satisfied with this response and glad I asked.
Thanks for the responses and support, all.
Elaine
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- November 4, 2015 at 10:01 pm
I obviously see the point there, but it's not like I *forgot* to start treatment or put it off, the drug happened to be approved 16 months out for me.
As we are all painfully aware, plenty of recurrences happen more than 16 months out, and sometimes you look around for a life preserver. I know I'm not the only one who feels this way.
As for MSKCC, the recommendation is the same. He is "disinclined to recommend" Yervoy because the side effect profile and the fact that 5 people died in the trial make it not a good idea for someone in good health like I am (knock wood).
I am both satisfied with this response and glad I asked.
Thanks for the responses and support, all.
Elaine
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- November 4, 2015 at 6:21 pm
I'm still waiting to talk to Dr. Postow, but my doctor at Loyola said that this is not a good route for me because therapy should be started 4-6 weeks after diagnosis, and I'm too far out.
I had never heard that before. Has that been your experience, those of you who have been through this?
Thanks!
Elaine
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- November 4, 2015 at 6:21 pm
I'm still waiting to talk to Dr. Postow, but my doctor at Loyola said that this is not a good route for me because therapy should be started 4-6 weeks after diagnosis, and I'm too far out.
I had never heard that before. Has that been your experience, those of you who have been through this?
Thanks!
Elaine
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- November 3, 2015 at 8:12 pm
Hi Elaine-
Happy to see you have been NED for 16 months……i cant seem to get there……14 months to first recurrence and now just under 12 months to this 2nd recurrence.
I too am now asking about using IPI in this setting…when I met with SLOAN (mike postow) last December after the first recurrence he said no to IPI (noting it wasnt apprived in that setting, though one onc at U of P wanted to use it one me) and thought watch and wati would be best appraoch as they had no appropritae trials…..so i then moved to Dr. Pavlick at NYU…she too dod not think IPI was advisalbe ….. and recommended a vaccine trial which i did and comepleted in may of this year…
So now back to recurrence number #2….small sub q right near incision…..will have more surgery of course, but now need to know more about ADJUVANT options…..even yesterday Dr. Pavlick didnt think IPI was for me….to high a toxicity ….
She is recommending Radiation this time….but I still want to discuss systemic treatment.
Will be interested to see what others respsonses you get.
tks and best,
jenny
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- November 3, 2015 at 8:12 pm
Hi Elaine-
Happy to see you have been NED for 16 months……i cant seem to get there……14 months to first recurrence and now just under 12 months to this 2nd recurrence.
I too am now asking about using IPI in this setting…when I met with SLOAN (mike postow) last December after the first recurrence he said no to IPI (noting it wasnt apprived in that setting, though one onc at U of P wanted to use it one me) and thought watch and wati would be best appraoch as they had no appropritae trials…..so i then moved to Dr. Pavlick at NYU…she too dod not think IPI was advisalbe ….. and recommended a vaccine trial which i did and comepleted in may of this year…
So now back to recurrence number #2….small sub q right near incision…..will have more surgery of course, but now need to know more about ADJUVANT options…..even yesterday Dr. Pavlick didnt think IPI was for me….to high a toxicity ….
She is recommending Radiation this time….but I still want to discuss systemic treatment.
Will be interested to see what others respsonses you get.
tks and best,
jenny
-
- November 5, 2015 at 9:27 pm
Hi Elaine, just wanted to add to the conversation about ipi. First, great to hear that you are doing great! With the pace of approval in the last year my personal feeling would be to wait for one of the PD-1 drugs to become available to stage 3 ( much better results and easier to take). I would pick ipi over interferon if I had the choice to make today but not at 10mg( risk is too high).Better to wait and watch with scans. There are so many combinations in clinical trials right now that the land scape by this time next year could be totally different. Onc live is a great resource for people with Melanoma, to gain as much knowledge before you have to make a decision is critical. I hope that you continue to do well and I really enjoyed reading your post! Ed
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- November 6, 2015 at 4:37 pm
Hi Ed….and Elaine-
This is a good thread on a hot topic….
Ed, your point is identical to what my Surgeon at MSK said to me on wednesday…..he, and my ONC both are not inclined to offer IPI (esp at 10mg/kg)…
He went on to say that IF I have another recurrence (hopefully that is an IF not a WHEN), he is hopeful that PD1 would be an option in this setting, as it comes with a better toxcity profile.
I just dont want to feel that my radiation is only to keep it at bay UNTIL a better drug is avaialble…I really want to believe the radiation will keep it from coming back at all…..BUT again that is only good for local control, so systemic treatment is still on my mind.
From everything I've read, and the DOCs whom I've spoken to, it doesnt sound like IPI in the adjuvant setting for STAGE III patients will be a slam dunk.
SOOOO…..what are our other options?????
-
- November 6, 2015 at 4:37 pm
Hi Ed….and Elaine-
This is a good thread on a hot topic….
Ed, your point is identical to what my Surgeon at MSK said to me on wednesday…..he, and my ONC both are not inclined to offer IPI (esp at 10mg/kg)…
He went on to say that IF I have another recurrence (hopefully that is an IF not a WHEN), he is hopeful that PD1 would be an option in this setting, as it comes with a better toxcity profile.
I just dont want to feel that my radiation is only to keep it at bay UNTIL a better drug is avaialble…I really want to believe the radiation will keep it from coming back at all…..BUT again that is only good for local control, so systemic treatment is still on my mind.
From everything I've read, and the DOCs whom I've spoken to, it doesnt sound like IPI in the adjuvant setting for STAGE III patients will be a slam dunk.
SOOOO…..what are our other options?????
-
- November 6, 2015 at 4:37 pm
Hi Ed….and Elaine-
This is a good thread on a hot topic….
Ed, your point is identical to what my Surgeon at MSK said to me on wednesday…..he, and my ONC both are not inclined to offer IPI (esp at 10mg/kg)…
He went on to say that IF I have another recurrence (hopefully that is an IF not a WHEN), he is hopeful that PD1 would be an option in this setting, as it comes with a better toxcity profile.
I just dont want to feel that my radiation is only to keep it at bay UNTIL a better drug is avaialble…I really want to believe the radiation will keep it from coming back at all…..BUT again that is only good for local control, so systemic treatment is still on my mind.
From everything I've read, and the DOCs whom I've spoken to, it doesnt sound like IPI in the adjuvant setting for STAGE III patients will be a slam dunk.
SOOOO…..what are our other options?????
-
- November 5, 2015 at 9:27 pm
Hi Elaine, just wanted to add to the conversation about ipi. First, great to hear that you are doing great! With the pace of approval in the last year my personal feeling would be to wait for one of the PD-1 drugs to become available to stage 3 ( much better results and easier to take). I would pick ipi over interferon if I had the choice to make today but not at 10mg( risk is too high).Better to wait and watch with scans. There are so many combinations in clinical trials right now that the land scape by this time next year could be totally different. Onc live is a great resource for people with Melanoma, to gain as much knowledge before you have to make a decision is critical. I hope that you continue to do well and I really enjoyed reading your post! Ed
-
- November 5, 2015 at 9:27 pm
Hi Elaine, just wanted to add to the conversation about ipi. First, great to hear that you are doing great! With the pace of approval in the last year my personal feeling would be to wait for one of the PD-1 drugs to become available to stage 3 ( much better results and easier to take). I would pick ipi over interferon if I had the choice to make today but not at 10mg( risk is too high).Better to wait and watch with scans. There are so many combinations in clinical trials right now that the land scape by this time next year could be totally different. Onc live is a great resource for people with Melanoma, to gain as much knowledge before you have to make a decision is critical. I hope that you continue to do well and I really enjoyed reading your post! Ed
-
- November 12, 2015 at 6:55 pm
Hi everyone,
I was diagnosed with MM end of July and was immediately referred to Univ of Penn — the mole had been on my face for years and seemigly turned cancerous over a year's time. 1.38 MM deep, 1 Mitotic rate. I had the SLNB early/mid August with one node that came back positive with micromets. Recommendation was for neck dissection and Pet Scan – had pet scan mid September with neck dissection surgery on Oct 5th. Got the clear on the pet scan a few days afterward and all clear on gland, tissues, and 23 nodes on Oct. 15th from Dr. Schuchter, my oncologist, at Penn. I was diagnosed Stage 3A. She was going to put my request for the insurance to cover me for Yervoy but it was unlikely to happen since it was not FDA approved. She didn't recommend it or not at that time.
Yesterday: I got a call from Dr. Schuchter's office, from her assistant, saying she WAS recommending me for the Yervoy treatment, that was just approved on Oct. 28, and my insurance DID approve it but it would have to be at the 10mg/per kg of body weight — and that there were toxicity risks but that the study was done in 2008-2011and that they know much better now what to look for and how to handle the side effects/toxicity. Still much risk. I am going to meet with her today at Penn at 3:20 pm ET to get more specifics. My primary physician, whom I love and trust, is also going to look at the study to see what her thoughts are on proceeding or not.
I have no idea what to do. My prognosis is 70-80% for no recurrence within 5 years. Not bad but that 20-30% recurrence risk still seems high. Especially, if it comes back, it will likely come back Stage IV which will be a much tougher battle. I will fill you all in after my visit but since this is just approved for Stage 3 there is no one to talk about their experience in this staging and the results seems mixed for Stage IV, too.
Any further input would be apppreciated. I know ultimately it is still a tough decision but it would be great to hear more about what people think.This is certainly a situation that has been beyond description to anyone outside the "cancer diagnosed." It has been an incredibly difficult and terrifying time.
Peace,
Michele-
- November 12, 2015 at 7:34 pm
Michele – I was exactly in the same place you are 1 year ago. BUT Yervoy was NOT a choice at that time for 3A. So I am just about to finish up nearly a years worth of Interferon. (we will never know for sure the role of Interferon but I just passed my 1 year NED anniversay on Tuesday with my latest PET scan.)
I did speak with my melanoma oncologist on Tuesday about the new treatments for Stage 3 and he indicated that he could write that RX at the 3 units doses (like Stage 4 patients) instead of the 10 that was approved. The only reason that I didn't post that here earlier is that I am not sure my question was 100% clear as I reflect on his answer. But I would absolutely challenge a can't do 3 units for 3A answer. Get 3-4 opinions.
Personally from what I have read (and based upon my doctor's comments)….I would not RISK a 10 unit dosage for a 3A patient…if you can do the 3 unit dosage then I think that might be a path I would have taken instead of Interferon. If you do move to Stage 4…then Yervoy with something else might be a perfectly risk-reward profile.
Michel
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- November 12, 2015 at 7:34 pm
Michele – I was exactly in the same place you are 1 year ago. BUT Yervoy was NOT a choice at that time for 3A. So I am just about to finish up nearly a years worth of Interferon. (we will never know for sure the role of Interferon but I just passed my 1 year NED anniversay on Tuesday with my latest PET scan.)
I did speak with my melanoma oncologist on Tuesday about the new treatments for Stage 3 and he indicated that he could write that RX at the 3 units doses (like Stage 4 patients) instead of the 10 that was approved. The only reason that I didn't post that here earlier is that I am not sure my question was 100% clear as I reflect on his answer. But I would absolutely challenge a can't do 3 units for 3A answer. Get 3-4 opinions.
Personally from what I have read (and based upon my doctor's comments)….I would not RISK a 10 unit dosage for a 3A patient…if you can do the 3 unit dosage then I think that might be a path I would have taken instead of Interferon. If you do move to Stage 4…then Yervoy with something else might be a perfectly risk-reward profile.
Michel
-
- November 12, 2015 at 7:34 pm
Michele – I was exactly in the same place you are 1 year ago. BUT Yervoy was NOT a choice at that time for 3A. So I am just about to finish up nearly a years worth of Interferon. (we will never know for sure the role of Interferon but I just passed my 1 year NED anniversay on Tuesday with my latest PET scan.)
I did speak with my melanoma oncologist on Tuesday about the new treatments for Stage 3 and he indicated that he could write that RX at the 3 units doses (like Stage 4 patients) instead of the 10 that was approved. The only reason that I didn't post that here earlier is that I am not sure my question was 100% clear as I reflect on his answer. But I would absolutely challenge a can't do 3 units for 3A answer. Get 3-4 opinions.
Personally from what I have read (and based upon my doctor's comments)….I would not RISK a 10 unit dosage for a 3A patient…if you can do the 3 unit dosage then I think that might be a path I would have taken instead of Interferon. If you do move to Stage 4…then Yervoy with something else might be a perfectly risk-reward profile.
Michel
-
- November 13, 2015 at 7:56 pm
Hi Michele-
Very interested to hear how your appt went yesterday, and if Lynn Schucter is recommending IPI for you in the adjuvant setting.
I am IIIB, and with two recurrences, both local….being advsie to do course of neck radiation (ouch!) for local control, but want to see about options for systemic treatment.
I hope you had a successsful vist with her yesterday and intersted to hear her and your thoughts.
Best,
jenny
-
- November 14, 2015 at 10:29 pm
Hi Jenny,
Do you know Dr. Schuchter? Are you local to Philly?
During our visit, her recommendation is still for me to take the treatment. She also knows I am not really comfortable with the whole "watchful waiting" approach. She is going to see if she can finagle the 10 mg course with the insurance. If not, I would have to take the 10 mg treatment for the first one and then the insurance would be guided by her input and discretion to change it down to 3mg after that. Of course, If I do have ANY reactions we would stop there.
There are risks, of course. I certainly don't like the 1% death occurrence that happened during the trial. That is significant. However, Dr. Schuchter indicated at the first sign of any GI (or ANY) issues, they would immediately stop me on the treatment and start me on prednisone to control and reverse the inflammation. It seems that the deaths were due to colitis/perforated bowel. So, that is the biggest thing they would be monitoring. Also, long term, if the thyroid and pituitary glands are affected, they can't reverse the damage. Patients would have to take Synthroid and a low dose steroid to replace what's lost. Not a thrilling possibility. Interestingly, Dr. Schucter did say she was surprised that Cigna even approved me for the treatment — with a 3A staging — but 20% of the patients in the study were 3As — so they have to, I guess, but they could have denied it regardless. Dr. Schuchter did indicate there is NO medical consensus on treatment for 3As around the country or even at Penn. Four different oncologist could give different opinions on whether to proceed or not.
I am also going to get my primary doctor's input on Monday. She is looking at the study this weekend and will give me her honest opinion, too. I trust her as I have for many years now. I certainly do trust Dr. Schuchter, too, but having another doctor's opinion that I trust woud help me make this very difficult decision.
So, as of today, I am leaning toward doing it. I don't know if you believe in signs, god, or whatever, but it just seems odd that this was approved by the FDA two weeks ago, my insurance approved it — AND I am just about out of the range of benefit for the treatment with my surgery being on Oct. 5th. I have to start next week or lose that window of greatest benefit — at least that is what I am being told. A lot of coincedence? I don't know but it gives me pause. What I'd hate to do is pass, have it recur at Stage IV and kick myself for not trying it earlier. As we know, Melanoma is a wicked and sneaky beast. Of course, it could still recur but at least I could say I tried everything available at the time — as Penn doesn't even recommend Inteferon anymore.
I will decide Tuesday the latest with my first treatment tentatively scheduled for this coming Thursday. I am very scared — either way — doing it or not — but for me, not doing anything seems worse. It's an awfully difficult decision no matter what!
I will continue to update my decision and treatment — if I decide to do it — and keep you posted. I wish you, and all of us, the best. I hope the neck radiation insn't too painful!
Peace,
Michele
P.S. Dr. Schuchter''s assistant did indicate there were a few other 3As starting/have started treatment at Penn as well. Not sure why but that made me feel better, too. We'll see… -
- November 14, 2015 at 10:29 pm
Hi Jenny,
Do you know Dr. Schuchter? Are you local to Philly?
During our visit, her recommendation is still for me to take the treatment. She also knows I am not really comfortable with the whole "watchful waiting" approach. She is going to see if she can finagle the 10 mg course with the insurance. If not, I would have to take the 10 mg treatment for the first one and then the insurance would be guided by her input and discretion to change it down to 3mg after that. Of course, If I do have ANY reactions we would stop there.
There are risks, of course. I certainly don't like the 1% death occurrence that happened during the trial. That is significant. However, Dr. Schuchter indicated at the first sign of any GI (or ANY) issues, they would immediately stop me on the treatment and start me on prednisone to control and reverse the inflammation. It seems that the deaths were due to colitis/perforated bowel. So, that is the biggest thing they would be monitoring. Also, long term, if the thyroid and pituitary glands are affected, they can't reverse the damage. Patients would have to take Synthroid and a low dose steroid to replace what's lost. Not a thrilling possibility. Interestingly, Dr. Schucter did say she was surprised that Cigna even approved me for the treatment — with a 3A staging — but 20% of the patients in the study were 3As — so they have to, I guess, but they could have denied it regardless. Dr. Schuchter did indicate there is NO medical consensus on treatment for 3As around the country or even at Penn. Four different oncologist could give different opinions on whether to proceed or not.
I am also going to get my primary doctor's input on Monday. She is looking at the study this weekend and will give me her honest opinion, too. I trust her as I have for many years now. I certainly do trust Dr. Schuchter, too, but having another doctor's opinion that I trust woud help me make this very difficult decision.
So, as of today, I am leaning toward doing it. I don't know if you believe in signs, god, or whatever, but it just seems odd that this was approved by the FDA two weeks ago, my insurance approved it — AND I am just about out of the range of benefit for the treatment with my surgery being on Oct. 5th. I have to start next week or lose that window of greatest benefit — at least that is what I am being told. A lot of coincedence? I don't know but it gives me pause. What I'd hate to do is pass, have it recur at Stage IV and kick myself for not trying it earlier. As we know, Melanoma is a wicked and sneaky beast. Of course, it could still recur but at least I could say I tried everything available at the time — as Penn doesn't even recommend Inteferon anymore.
I will decide Tuesday the latest with my first treatment tentatively scheduled for this coming Thursday. I am very scared — either way — doing it or not — but for me, not doing anything seems worse. It's an awfully difficult decision no matter what!
I will continue to update my decision and treatment — if I decide to do it — and keep you posted. I wish you, and all of us, the best. I hope the neck radiation insn't too painful!
Peace,
Michele
P.S. Dr. Schuchter''s assistant did indicate there were a few other 3As starting/have started treatment at Penn as well. Not sure why but that made me feel better, too. We'll see… -
- November 14, 2015 at 10:29 pm
Hi Jenny,
Do you know Dr. Schuchter? Are you local to Philly?
During our visit, her recommendation is still for me to take the treatment. She also knows I am not really comfortable with the whole "watchful waiting" approach. She is going to see if she can finagle the 10 mg course with the insurance. If not, I would have to take the 10 mg treatment for the first one and then the insurance would be guided by her input and discretion to change it down to 3mg after that. Of course, If I do have ANY reactions we would stop there.
There are risks, of course. I certainly don't like the 1% death occurrence that happened during the trial. That is significant. However, Dr. Schuchter indicated at the first sign of any GI (or ANY) issues, they would immediately stop me on the treatment and start me on prednisone to control and reverse the inflammation. It seems that the deaths were due to colitis/perforated bowel. So, that is the biggest thing they would be monitoring. Also, long term, if the thyroid and pituitary glands are affected, they can't reverse the damage. Patients would have to take Synthroid and a low dose steroid to replace what's lost. Not a thrilling possibility. Interestingly, Dr. Schucter did say she was surprised that Cigna even approved me for the treatment — with a 3A staging — but 20% of the patients in the study were 3As — so they have to, I guess, but they could have denied it regardless. Dr. Schuchter did indicate there is NO medical consensus on treatment for 3As around the country or even at Penn. Four different oncologist could give different opinions on whether to proceed or not.
I am also going to get my primary doctor's input on Monday. She is looking at the study this weekend and will give me her honest opinion, too. I trust her as I have for many years now. I certainly do trust Dr. Schuchter, too, but having another doctor's opinion that I trust woud help me make this very difficult decision.
So, as of today, I am leaning toward doing it. I don't know if you believe in signs, god, or whatever, but it just seems odd that this was approved by the FDA two weeks ago, my insurance approved it — AND I am just about out of the range of benefit for the treatment with my surgery being on Oct. 5th. I have to start next week or lose that window of greatest benefit — at least that is what I am being told. A lot of coincedence? I don't know but it gives me pause. What I'd hate to do is pass, have it recur at Stage IV and kick myself for not trying it earlier. As we know, Melanoma is a wicked and sneaky beast. Of course, it could still recur but at least I could say I tried everything available at the time — as Penn doesn't even recommend Inteferon anymore.
I will decide Tuesday the latest with my first treatment tentatively scheduled for this coming Thursday. I am very scared — either way — doing it or not — but for me, not doing anything seems worse. It's an awfully difficult decision no matter what!
I will continue to update my decision and treatment — if I decide to do it — and keep you posted. I wish you, and all of us, the best. I hope the neck radiation insn't too painful!
Peace,
Michele
P.S. Dr. Schuchter''s assistant did indicate there were a few other 3As starting/have started treatment at Penn as well. Not sure why but that made me feel better, too. We'll see… -
- November 13, 2015 at 7:56 pm
Hi Michele-
Very interested to hear how your appt went yesterday, and if Lynn Schucter is recommending IPI for you in the adjuvant setting.
I am IIIB, and with two recurrences, both local….being advsie to do course of neck radiation (ouch!) for local control, but want to see about options for systemic treatment.
I hope you had a successsful vist with her yesterday and intersted to hear her and your thoughts.
Best,
jenny
-
- November 13, 2015 at 7:56 pm
Hi Michele-
Very interested to hear how your appt went yesterday, and if Lynn Schucter is recommending IPI for you in the adjuvant setting.
I am IIIB, and with two recurrences, both local….being advsie to do course of neck radiation (ouch!) for local control, but want to see about options for systemic treatment.
I hope you had a successsful vist with her yesterday and intersted to hear her and your thoughts.
Best,
jenny
-
- November 14, 2015 at 10:32 pm
Hi! If u don't mind me asking, who is your insurance company? I am a stage 3A and my dr at MD Anderson listed the yervoy as one of my possible treatments but only and at 3mg dosage. I am hoping if I do chose that route I don't face insurance problems.
-
- November 14, 2015 at 10:53 pm
I have Cigna – Open Access. I think it's great that your insurance approved 3mg. Mine only approved 10 mg — which follows the guidelines for the Yervoy study done from 2008-2011. If I decide to go this route, I might have to take the 10 mg/per kg of body weight to start and then it woud be adjusted down — unless there are side effects, and then I would stop entirely. For me, if I could start at Yervoy, 3mg/per kg of body weight, I woud do it.. Of course, we all have to make our own decisions.
Good luck!
Michele
-
- November 14, 2015 at 10:53 pm
I have Cigna – Open Access. I think it's great that your insurance approved 3mg. Mine only approved 10 mg — which follows the guidelines for the Yervoy study done from 2008-2011. If I decide to go this route, I might have to take the 10 mg/per kg of body weight to start and then it woud be adjusted down — unless there are side effects, and then I would stop entirely. For me, if I could start at Yervoy, 3mg/per kg of body weight, I woud do it.. Of course, we all have to make our own decisions.
Good luck!
Michele
-
- November 14, 2015 at 10:53 pm
I have Cigna – Open Access. I think it's great that your insurance approved 3mg. Mine only approved 10 mg — which follows the guidelines for the Yervoy study done from 2008-2011. If I decide to go this route, I might have to take the 10 mg/per kg of body weight to start and then it woud be adjusted down — unless there are side effects, and then I would stop entirely. For me, if I could start at Yervoy, 3mg/per kg of body weight, I woud do it.. Of course, we all have to make our own decisions.
Good luck!
Michele
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- November 14, 2015 at 10:32 pm
Hi! If u don't mind me asking, who is your insurance company? I am a stage 3A and my dr at MD Anderson listed the yervoy as one of my possible treatments but only and at 3mg dosage. I am hoping if I do chose that route I don't face insurance problems.
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- November 14, 2015 at 10:32 pm
Hi! If u don't mind me asking, who is your insurance company? I am a stage 3A and my dr at MD Anderson listed the yervoy as one of my possible treatments but only and at 3mg dosage. I am hoping if I do chose that route I don't face insurance problems.
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- November 12, 2015 at 6:55 pm
Hi everyone,
I was diagnosed with MM end of July and was immediately referred to Univ of Penn — the mole had been on my face for years and seemigly turned cancerous over a year's time. 1.38 MM deep, 1 Mitotic rate. I had the SLNB early/mid August with one node that came back positive with micromets. Recommendation was for neck dissection and Pet Scan – had pet scan mid September with neck dissection surgery on Oct 5th. Got the clear on the pet scan a few days afterward and all clear on gland, tissues, and 23 nodes on Oct. 15th from Dr. Schuchter, my oncologist, at Penn. I was diagnosed Stage 3A. She was going to put my request for the insurance to cover me for Yervoy but it was unlikely to happen since it was not FDA approved. She didn't recommend it or not at that time.
Yesterday: I got a call from Dr. Schuchter's office, from her assistant, saying she WAS recommending me for the Yervoy treatment, that was just approved on Oct. 28, and my insurance DID approve it but it would have to be at the 10mg/per kg of body weight — and that there were toxicity risks but that the study was done in 2008-2011and that they know much better now what to look for and how to handle the side effects/toxicity. Still much risk. I am going to meet with her today at Penn at 3:20 pm ET to get more specifics. My primary physician, whom I love and trust, is also going to look at the study to see what her thoughts are on proceeding or not.
I have no idea what to do. My prognosis is 70-80% for no recurrence within 5 years. Not bad but that 20-30% recurrence risk still seems high. Especially, if it comes back, it will likely come back Stage IV which will be a much tougher battle. I will fill you all in after my visit but since this is just approved for Stage 3 there is no one to talk about their experience in this staging and the results seems mixed for Stage IV, too.
Any further input would be apppreciated. I know ultimately it is still a tough decision but it would be great to hear more about what people think.This is certainly a situation that has been beyond description to anyone outside the "cancer diagnosed." It has been an incredibly difficult and terrifying time.
Peace,
Michele -
- November 12, 2015 at 6:55 pm
Hi everyone,
I was diagnosed with MM end of July and was immediately referred to Univ of Penn — the mole had been on my face for years and seemigly turned cancerous over a year's time. 1.38 MM deep, 1 Mitotic rate. I had the SLNB early/mid August with one node that came back positive with micromets. Recommendation was for neck dissection and Pet Scan – had pet scan mid September with neck dissection surgery on Oct 5th. Got the clear on the pet scan a few days afterward and all clear on gland, tissues, and 23 nodes on Oct. 15th from Dr. Schuchter, my oncologist, at Penn. I was diagnosed Stage 3A. She was going to put my request for the insurance to cover me for Yervoy but it was unlikely to happen since it was not FDA approved. She didn't recommend it or not at that time.
Yesterday: I got a call from Dr. Schuchter's office, from her assistant, saying she WAS recommending me for the Yervoy treatment, that was just approved on Oct. 28, and my insurance DID approve it but it would have to be at the 10mg/per kg of body weight — and that there were toxicity risks but that the study was done in 2008-2011and that they know much better now what to look for and how to handle the side effects/toxicity. Still much risk. I am going to meet with her today at Penn at 3:20 pm ET to get more specifics. My primary physician, whom I love and trust, is also going to look at the study to see what her thoughts are on proceeding or not.
I have no idea what to do. My prognosis is 70-80% for no recurrence within 5 years. Not bad but that 20-30% recurrence risk still seems high. Especially, if it comes back, it will likely come back Stage IV which will be a much tougher battle. I will fill you all in after my visit but since this is just approved for Stage 3 there is no one to talk about their experience in this staging and the results seems mixed for Stage IV, too.
Any further input would be apppreciated. I know ultimately it is still a tough decision but it would be great to hear more about what people think.This is certainly a situation that has been beyond description to anyone outside the "cancer diagnosed." It has been an incredibly difficult and terrifying time.
Peace,
Michele -
- November 16, 2015 at 9:54 am
Not sure if anyone is still reading this.
I was diagnosed with stage IIIb now 6 years ago. At that time it was interferon or a double blind trial with 10mg ipi. I decided the last.
I did receive the actual medication (had the side effects) and as you see, I'm still here!
After my 4th session I had a colitis. The doctors asked me if I wanted to end the trial or if I wanted to continue. As the colitis itself was over within a day, I decided to continue.
I received another 4 infusions, but before receiving the 9th, I decided against it. Most side effects were ok-ish (rash, itching, some stomach pains), but the fatigue was really getting to me. After every infusion it increased and I had the feeling it was not worth it (as nobody knows how much you had to get for it to continue working). The doctor tried to have me continue but I chose not to.When I read the CT scan the 3 months after this 8th infusion, i noticed my spleen increased.
Off course i will never know if the spleen would have coninued to grow if I would have taken another infusion.I never regretted starting ipi and I never regretted ending it.
I am still receiving a CT-scan every half a year, which i find really helpful.Good luck with your decision
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- November 16, 2015 at 9:12 pm
I am still reading. Thanks. I do appreciate your comments. It is a scary choice but, for me, it is scarier not to try. IF it comes back it could be at stage 4 and that terrifies me IF I could have tried but didn't. Who knows! It could still come back then I will know i did everything possible at the time to try to offset my recurrence risks.
I am planning on starting on Thursday at Penn. I will keep everyone posted.
Best,
Michele
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- November 16, 2015 at 9:12 pm
I am still reading. Thanks. I do appreciate your comments. It is a scary choice but, for me, it is scarier not to try. IF it comes back it could be at stage 4 and that terrifies me IF I could have tried but didn't. Who knows! It could still come back then I will know i did everything possible at the time to try to offset my recurrence risks.
I am planning on starting on Thursday at Penn. I will keep everyone posted.
Best,
Michele
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- November 16, 2015 at 9:12 pm
I am still reading. Thanks. I do appreciate your comments. It is a scary choice but, for me, it is scarier not to try. IF it comes back it could be at stage 4 and that terrifies me IF I could have tried but didn't. Who knows! It could still come back then I will know i did everything possible at the time to try to offset my recurrence risks.
I am planning on starting on Thursday at Penn. I will keep everyone posted.
Best,
Michele
-
- November 16, 2015 at 9:54 am
Not sure if anyone is still reading this.
I was diagnosed with stage IIIb now 6 years ago. At that time it was interferon or a double blind trial with 10mg ipi. I decided the last.
I did receive the actual medication (had the side effects) and as you see, I'm still here!
After my 4th session I had a colitis. The doctors asked me if I wanted to end the trial or if I wanted to continue. As the colitis itself was over within a day, I decided to continue.
I received another 4 infusions, but before receiving the 9th, I decided against it. Most side effects were ok-ish (rash, itching, some stomach pains), but the fatigue was really getting to me. After every infusion it increased and I had the feeling it was not worth it (as nobody knows how much you had to get for it to continue working). The doctor tried to have me continue but I chose not to.When I read the CT scan the 3 months after this 8th infusion, i noticed my spleen increased.
Off course i will never know if the spleen would have coninued to grow if I would have taken another infusion.I never regretted starting ipi and I never regretted ending it.
I am still receiving a CT-scan every half a year, which i find really helpful.Good luck with your decision
-
- November 16, 2015 at 9:54 am
Not sure if anyone is still reading this.
I was diagnosed with stage IIIb now 6 years ago. At that time it was interferon or a double blind trial with 10mg ipi. I decided the last.
I did receive the actual medication (had the side effects) and as you see, I'm still here!
After my 4th session I had a colitis. The doctors asked me if I wanted to end the trial or if I wanted to continue. As the colitis itself was over within a day, I decided to continue.
I received another 4 infusions, but before receiving the 9th, I decided against it. Most side effects were ok-ish (rash, itching, some stomach pains), but the fatigue was really getting to me. After every infusion it increased and I had the feeling it was not worth it (as nobody knows how much you had to get for it to continue working). The doctor tried to have me continue but I chose not to.When I read the CT scan the 3 months after this 8th infusion, i noticed my spleen increased.
Off course i will never know if the spleen would have coninued to grow if I would have taken another infusion.I never regretted starting ipi and I never regretted ending it.
I am still receiving a CT-scan every half a year, which i find really helpful.Good luck with your decision
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- December 5, 2015 at 10:41 am
Been reading through the post on this forum about Ipi / Yervoy, as my doctor as given that to me as an option. I'm 3b and have had full node removal in my neck and under my arm 3 weeks ago. All these nodes came back negative, which gives me hope that we've gotten out in front of this disease.
Below is a link that gives some good information about the side effects of Yervoy and what percent of patients the side effects occure. Thought it might be helpful for those consider Yervoy.
http://chemocare.com/chemotherapy/drug-info/ipilimumab.aspx
I know we've all been through the process where we realize there is no 12-step program to being healed of this disease. There is no road map to be cured. There are options and each of us must decide which options are best for each of us, knowing full well those options may or may not be effective against this disease. We're all trying to throw as much as we feel necessary at our disease and hope for the best. I hope you all find peace in your decisions…making the best decision possible for you with the information you have available at that time. Hind sight will always bring "what ifs" if there is reoccurence. I pray we are all able to avoid the doubt of decisions past, should there be reoccurence. For me personally, I've ruled out interferon and am leaning away from Yervoy at this time. I'm leaning toward full observation, possibly with a clinical trial, if I come across one I qualify for.
Prayers with you all.
John
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- December 5, 2015 at 10:41 am
Been reading through the post on this forum about Ipi / Yervoy, as my doctor as given that to me as an option. I'm 3b and have had full node removal in my neck and under my arm 3 weeks ago. All these nodes came back negative, which gives me hope that we've gotten out in front of this disease.
Below is a link that gives some good information about the side effects of Yervoy and what percent of patients the side effects occure. Thought it might be helpful for those consider Yervoy.
http://chemocare.com/chemotherapy/drug-info/ipilimumab.aspx
I know we've all been through the process where we realize there is no 12-step program to being healed of this disease. There is no road map to be cured. There are options and each of us must decide which options are best for each of us, knowing full well those options may or may not be effective against this disease. We're all trying to throw as much as we feel necessary at our disease and hope for the best. I hope you all find peace in your decisions…making the best decision possible for you with the information you have available at that time. Hind sight will always bring "what ifs" if there is reoccurence. I pray we are all able to avoid the doubt of decisions past, should there be reoccurence. For me personally, I've ruled out interferon and am leaning away from Yervoy at this time. I'm leaning toward full observation, possibly with a clinical trial, if I come across one I qualify for.
Prayers with you all.
John
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- December 5, 2015 at 10:41 am
Been reading through the post on this forum about Ipi / Yervoy, as my doctor as given that to me as an option. I'm 3b and have had full node removal in my neck and under my arm 3 weeks ago. All these nodes came back negative, which gives me hope that we've gotten out in front of this disease.
Below is a link that gives some good information about the side effects of Yervoy and what percent of patients the side effects occure. Thought it might be helpful for those consider Yervoy.
http://chemocare.com/chemotherapy/drug-info/ipilimumab.aspx
I know we've all been through the process where we realize there is no 12-step program to being healed of this disease. There is no road map to be cured. There are options and each of us must decide which options are best for each of us, knowing full well those options may or may not be effective against this disease. We're all trying to throw as much as we feel necessary at our disease and hope for the best. I hope you all find peace in your decisions…making the best decision possible for you with the information you have available at that time. Hind sight will always bring "what ifs" if there is reoccurence. I pray we are all able to avoid the doubt of decisions past, should there be reoccurence. For me personally, I've ruled out interferon and am leaning away from Yervoy at this time. I'm leaning toward full observation, possibly with a clinical trial, if I come across one I qualify for.
Prayers with you all.
John
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Re: FDA Approves Ipilimumab for Stage III Melanoma Patients
jamieth29 – (10/28/2015 – 8:55pm)