› Forums › General Melanoma Community › Ipilimumab and potential stage 4 melanoma
- This topic has 24 replies, 4 voices, and was last updated 9 years, 6 months ago by
Gene_S.
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- August 31, 2016 at 8:42 pm
Hi,
I'm new to all of this and was hoping someone would be able to give me some insight into ipilimumab treatment and what this means.
In 2015 my dad was diagnosed with melanoma, they operated on the area this was found and we assumed all was well. At the beginning of this year we then found out this had spread to the lymph nodes in his groin (having originated on his foot). The lymph nodes were soon removed and we were told they 'thought' he was in the clear.
Having always been active and proud, it was around this time my dad stopped discussing the cancer with me and left me under the impression he had been given the all clear. I was aware he was undergoing some radiotherapy but had thought or possibly hoped this was just a precautionary measure.
I've since came across some of his information to say he is now going to undergo treatment with ipilimumab however I'm unsure exactly what this means and can only get so much information from search engines. I've managed to learn this is mainly done when people have stage 4 melanoma, which suggests that I was incorrect in thinking he had been in the all clear.
Whilst I fully respect my dad's decision to keep certain information to himself, I'd like to learn as much as possible about the treatment. Also if it is in fact stage 4 melanoma, what exactly does that mean in this day and age in regards to treatments and severity etc.
Any information will be hugely appreciated. Thank you.
- Replies
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- August 31, 2016 at 9:28 pm
It is very possible he is actually stage 3 and doing Ipi as an adjuvant treatment. Stage 3 is when it spreads to lymph nodes but no futher. I am 3b, have been on Ipi adjuvant treatment and doing well. So, don't jump to the stage 4 conclusion just yet. A lot of stage 4 folks are starting with the combo treatment of Ipi/Nivo (Yervoy/Opdivo) since it has good success rates compared with Ipi alone, so, my guess is if it's just Ipi as his treatment plan then he's more likely to be in the stage 3 category. I am sure it's hard not having your dad open up and tell you exactly what is going on, we all deal with our diagnosis and treatments differently.
All the best,
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- August 31, 2016 at 9:28 pm
It is very possible he is actually stage 3 and doing Ipi as an adjuvant treatment. Stage 3 is when it spreads to lymph nodes but no futher. I am 3b, have been on Ipi adjuvant treatment and doing well. So, don't jump to the stage 4 conclusion just yet. A lot of stage 4 folks are starting with the combo treatment of Ipi/Nivo (Yervoy/Opdivo) since it has good success rates compared with Ipi alone, so, my guess is if it's just Ipi as his treatment plan then he's more likely to be in the stage 3 category. I am sure it's hard not having your dad open up and tell you exactly what is going on, we all deal with our diagnosis and treatments differently.
All the best,
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- August 31, 2016 at 9:28 pm
It is very possible he is actually stage 3 and doing Ipi as an adjuvant treatment. Stage 3 is when it spreads to lymph nodes but no futher. I am 3b, have been on Ipi adjuvant treatment and doing well. So, don't jump to the stage 4 conclusion just yet. A lot of stage 4 folks are starting with the combo treatment of Ipi/Nivo (Yervoy/Opdivo) since it has good success rates compared with Ipi alone, so, my guess is if it's just Ipi as his treatment plan then he's more likely to be in the stage 3 category. I am sure it's hard not having your dad open up and tell you exactly what is going on, we all deal with our diagnosis and treatments differently.
All the best,
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- August 31, 2016 at 9:38 pm
It's definitely not the best but I'd just like to get as much information as possible for when he's ready to talk more about it. It's a relief to read it might not be as bad as some search engines make it out!
Also nice to see you keep such an upbeat attitude throughout the whole thing. I hope all goes well for you and you don't get any too nasty side effects and manage to stay as positive as ever!
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- August 31, 2016 at 9:38 pm
It's definitely not the best but I'd just like to get as much information as possible for when he's ready to talk more about it. It's a relief to read it might not be as bad as some search engines make it out!
Also nice to see you keep such an upbeat attitude throughout the whole thing. I hope all goes well for you and you don't get any too nasty side effects and manage to stay as positive as ever!
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- August 31, 2016 at 9:38 pm
It's definitely not the best but I'd just like to get as much information as possible for when he's ready to talk more about it. It's a relief to read it might not be as bad as some search engines make it out!
Also nice to see you keep such an upbeat attitude throughout the whole thing. I hope all goes well for you and you don't get any too nasty side effects and manage to stay as positive as ever!
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- August 31, 2016 at 9:45 pm
Thank you! I can only imagine how I would be feeling if my own father was going through it and not telling me all the details. Try not to Google too much…. there's not a lot of uplifting info out there and most of it is outdated anyway. Melanoma diagnosis today is incredibly different from years ago, many advancements and more to come. Try not to worry too much…. easier said than done, I know.
Take care,
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- August 31, 2016 at 9:45 pm
Thank you! I can only imagine how I would be feeling if my own father was going through it and not telling me all the details. Try not to Google too much…. there's not a lot of uplifting info out there and most of it is outdated anyway. Melanoma diagnosis today is incredibly different from years ago, many advancements and more to come. Try not to worry too much…. easier said than done, I know.
Take care,
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- August 31, 2016 at 9:45 pm
Thank you! I can only imagine how I would be feeling if my own father was going through it and not telling me all the details. Try not to Google too much…. there's not a lot of uplifting info out there and most of it is outdated anyway. Melanoma diagnosis today is incredibly different from years ago, many advancements and more to come. Try not to worry too much…. easier said than done, I know.
Take care,
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- September 1, 2016 at 7:04 am
In the USA, as other posters have stated, the FDA has approved 'Ipi' for stage 3 melanoma patients. Your father is definitely at least stage 3 as the melanoma has spread through his lymphatic system away from the original site.
A stage 3 melanoma patient who has had surgery is unlikely to have been given the 'all clear'. Using my own experience as a stage C melanoma patient, I was told that a complete lymph node dissection (CLND) would only prevent the return of the melanoma in 25% of patients like me.
Ipi stilmulates some people's immune systems to attack the melanoma cells. When I started Ipi, I was told that about 15% of melanoma patients are 'responders' – people who gain long-term benefits from treatment with Ipi. Unfortunately, Ipi can cause a peron's immune system to attack their normal tissues as well, causing side-effects. The side effects are very unpredictable, varying greatly from patient to patient.
I found the actualy 'Ipi' treatment was painless and easy.
I am one of those melanoma patients who has chosen not to tell my family – only my husband and friends. I imagine how I would feel if it came to light that one of my relatives had 'come across' some of my information. It would not be pretty!
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- September 1, 2016 at 7:36 am
He's not chosen to not tell me, rather just not to discuss it in any great detail. I can understand why anyone would chose to do so and imagine if feel similarly myself.
Thank you for your information.
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- September 1, 2016 at 7:36 am
He's not chosen to not tell me, rather just not to discuss it in any great detail. I can understand why anyone would chose to do so and imagine if feel similarly myself.
Thank you for your information.
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- September 1, 2016 at 7:36 am
He's not chosen to not tell me, rather just not to discuss it in any great detail. I can understand why anyone would chose to do so and imagine if feel similarly myself.
Thank you for your information.
-
- September 1, 2016 at 7:04 am
In the USA, as other posters have stated, the FDA has approved 'Ipi' for stage 3 melanoma patients. Your father is definitely at least stage 3 as the melanoma has spread through his lymphatic system away from the original site.
A stage 3 melanoma patient who has had surgery is unlikely to have been given the 'all clear'. Using my own experience as a stage C melanoma patient, I was told that a complete lymph node dissection (CLND) would only prevent the return of the melanoma in 25% of patients like me.
Ipi stilmulates some people's immune systems to attack the melanoma cells. When I started Ipi, I was told that about 15% of melanoma patients are 'responders' – people who gain long-term benefits from treatment with Ipi. Unfortunately, Ipi can cause a peron's immune system to attack their normal tissues as well, causing side-effects. The side effects are very unpredictable, varying greatly from patient to patient.
I found the actualy 'Ipi' treatment was painless and easy.
I am one of those melanoma patients who has chosen not to tell my family – only my husband and friends. I imagine how I would feel if it came to light that one of my relatives had 'come across' some of my information. It would not be pretty!
-
- September 1, 2016 at 7:04 am
In the USA, as other posters have stated, the FDA has approved 'Ipi' for stage 3 melanoma patients. Your father is definitely at least stage 3 as the melanoma has spread through his lymphatic system away from the original site.
A stage 3 melanoma patient who has had surgery is unlikely to have been given the 'all clear'. Using my own experience as a stage C melanoma patient, I was told that a complete lymph node dissection (CLND) would only prevent the return of the melanoma in 25% of patients like me.
Ipi stilmulates some people's immune systems to attack the melanoma cells. When I started Ipi, I was told that about 15% of melanoma patients are 'responders' – people who gain long-term benefits from treatment with Ipi. Unfortunately, Ipi can cause a peron's immune system to attack their normal tissues as well, causing side-effects. The side effects are very unpredictable, varying greatly from patient to patient.
I found the actualy 'Ipi' treatment was painless and easy.
I am one of those melanoma patients who has chosen not to tell my family – only my husband and friends. I imagine how I would feel if it came to light that one of my relatives had 'come across' some of my information. It would not be pretty!
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- September 2, 2016 at 1:40 pm
Hello,
Also the thing to remember is everyone is different and all do not get the same side effects. My husband took IPI and he did not have bad side effects and also he became NED (no evidence of disease) for over 4 years now and he was Stage IV.
When he was on it there were not many medications out to help and now their are several with more being found every year.
Keep trying to support him and when he feels ready maybe he will feel more willing to include you and update you. Maybe he is worrying that he will send you into a tail spin with the news. I hope he will start sharing and when he decides to tell you try to be brave and control your emotions.
If you want to read about my husband journey then check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- September 2, 2016 at 1:40 pm
Hello,
Also the thing to remember is everyone is different and all do not get the same side effects. My husband took IPI and he did not have bad side effects and also he became NED (no evidence of disease) for over 4 years now and he was Stage IV.
When he was on it there were not many medications out to help and now their are several with more being found every year.
Keep trying to support him and when he feels ready maybe he will feel more willing to include you and update you. Maybe he is worrying that he will send you into a tail spin with the news. I hope he will start sharing and when he decides to tell you try to be brave and control your emotions.
If you want to read about my husband journey then check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
-
- September 2, 2016 at 1:40 pm
Hello,
Also the thing to remember is everyone is different and all do not get the same side effects. My husband took IPI and he did not have bad side effects and also he became NED (no evidence of disease) for over 4 years now and he was Stage IV.
When he was on it there were not many medications out to help and now their are several with more being found every year.
Keep trying to support him and when he feels ready maybe he will feel more willing to include you and update you. Maybe he is worrying that he will send you into a tail spin with the news. I hope he will start sharing and when he decides to tell you try to be brave and control your emotions.
If you want to read about my husband journey then check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- September 2, 2016 at 7:53 pm
Hi,
thanks for this. It's nice to see everyone has such optimistic thoughts and share their own stories.
I completely understand not telling me, which is why I just want to learn as much as I can for when he does come to discuss it. I've since learnt he's going to be given a combination of the above with Nivolumab, do you happen to know anything about this too?
Thats fantastic news about your husband!! I'll definitely have a read.
🙂
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- September 2, 2016 at 7:53 pm
Hi,
thanks for this. It's nice to see everyone has such optimistic thoughts and share their own stories.
I completely understand not telling me, which is why I just want to learn as much as I can for when he does come to discuss it. I've since learnt he's going to be given a combination of the above with Nivolumab, do you happen to know anything about this too?
Thats fantastic news about your husband!! I'll definitely have a read.
🙂
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- September 2, 2016 at 7:53 pm
Hi,
thanks for this. It's nice to see everyone has such optimistic thoughts and share their own stories.
I completely understand not telling me, which is why I just want to learn as much as I can for when he does come to discuss it. I've since learnt he's going to be given a combination of the above with Nivolumab, do you happen to know anything about this too?
Thats fantastic news about your husband!! I'll definitely have a read.
🙂
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- September 3, 2016 at 2:20 pm
My husband only did the one Clinical Trial and Nivo was just in the starting phases then so it was never offered and I have no personal information on it.
He hopes to never have to try another drug and who knows what may be available in the future. But many others have been on the IPI/NIVO combo so you should be able to do a search on here and find many involved.
All the best to your Dad and you. I hope this is the magic bullet that he needs to become NED.
Judy (loving wife of Gene)
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- September 3, 2016 at 2:20 pm
My husband only did the one Clinical Trial and Nivo was just in the starting phases then so it was never offered and I have no personal information on it.
He hopes to never have to try another drug and who knows what may be available in the future. But many others have been on the IPI/NIVO combo so you should be able to do a search on here and find many involved.
All the best to your Dad and you. I hope this is the magic bullet that he needs to become NED.
Judy (loving wife of Gene)
-
- September 3, 2016 at 2:20 pm
My husband only did the one Clinical Trial and Nivo was just in the starting phases then so it was never offered and I have no personal information on it.
He hopes to never have to try another drug and who knows what may be available in the future. But many others have been on the IPI/NIVO combo so you should be able to do a search on here and find many involved.
All the best to your Dad and you. I hope this is the magic bullet that he needs to become NED.
Judy (loving wife of Gene)
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