› Forums › General Melanoma Community › ipilimumab and Stage IV M1c?
- This topic has 30 replies, 7 voices, and was last updated 10 years, 10 months ago by
AndyT.
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- July 2, 2013 at 10:11 pm
Hi,
Hi,
my wife is 36, first melanomsa mole in 2010, excision, sentinel node was positive. Went on interferon for 11 months. We had two wonderfuly years after that with reguar check-ups. Last eptember elevated markers show a grave picture – stage IV with one large lesion and one smaller lesion in abdomen area, some minor lesions in the lungs. We joined a clinical trail with zelboraf, which worked well for 8 months – lung lesions remained the same, small abdomen lesion diappeared, the large one was a bit smaller. Just this week the latest CT results came in – the large lession is progressing and we had to quit Zelboraf.
Our doctor is now suggesting we try chemotherapy (dacarbazine). Reading a lot on melanoma we were hoping for ipilimumamb, but she said it only works with stage IV M1a or M1b patients, and not with M1c patients?! (M1c=Metastasis to other organs, OR distant spread to any site along with an elevated blood LDH level.)
I would be so greateful if anybody could please confirm or deny this? Also, would you have other suggestions – should we say not to dacarbazien, get a secod opinion (any suggestions for good written review of mediacal records by mail) or rather search for clinical trials?
There are these two we might be eligible:
1) A Randomized Open-Label Phase 3 Trial of BMS-936558 (Nivolumab) Versus Investigator's Choice in Advanced (Unresectable or Metastatic) Melanoma Patients Progressing Post Anti-CTLA-4 Therapy
http://clinicaltrials.gov/ct2/show/record/NCT01721746
2) A Phase 3, Randomized, Double-Blind Study of Nivolumab Monotherapy or Nivolumab Combined With Ipilimumab Versus Ipilimumab Monotherapy in Subjects With Previously Untreated Unresectable or Metastatic Melanoma
http://clinicaltrials.gov/ct2/show/NCT01844505?recr=Open&cond=%22Melanoma%22&cntry1=EU%3AIT&rank=10
Thank each and everyone for your replies, I wish all the best to you, stay positive!
Andy
- Replies
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- July 2, 2013 at 11:11 pm
That is absolutely not true, Ipi definitely can work for stage IV M1c patients. It may be less effective percentage-wise for that category but I don’t know for sure. I do know that it has helped some patients with brain mets, who are by definition M1c.It sounds like the doctor is not a melanoma specialist…is this correct? If so, I would RUN to a mel specialist for a consultation asap. Dacarbazine will always be there…go the clinical trial or Ipi route if possible for now unless for some reason there is a very strong case against it.
The combo trial looks quite promising based on these results presented at ASCO:
http://www.nejm.org/doi/full/10.1056/NEJMoa1302369Best wishes,
Steve-
- July 3, 2013 at 1:21 pm
Thank you all for your replies:) Especially Maureen, I will send you a private mesage:)
I kind of got the confirmation of my understanding that chemo is the last option – we will need to have a thorough talk with our oncologist. The thing is, we live in a small EU country (Slovenia), where we only have one oncological institute, so any other melanoma specialist we would have to find oudside the country. Given the severity of the situatuion we are of course exploring all options. Costs could unfortunately be a major issue:( Clinical studies therefore seem to be the best options – I will do my best to get us into one.
If there's anybody reading this from EU – do you know if there are any restrictions in joining a clinical trial in another EU member state? We would be prepared to travel to other countries if necessary.
Thank you all, it means to world to us to be able to get such feedback!
All the best,
Andy -
- July 3, 2013 at 1:21 pm
Thank you all for your replies:) Especially Maureen, I will send you a private mesage:)
I kind of got the confirmation of my understanding that chemo is the last option – we will need to have a thorough talk with our oncologist. The thing is, we live in a small EU country (Slovenia), where we only have one oncological institute, so any other melanoma specialist we would have to find oudside the country. Given the severity of the situatuion we are of course exploring all options. Costs could unfortunately be a major issue:( Clinical studies therefore seem to be the best options – I will do my best to get us into one.
If there's anybody reading this from EU – do you know if there are any restrictions in joining a clinical trial in another EU member state? We would be prepared to travel to other countries if necessary.
Thank you all, it means to world to us to be able to get such feedback!
All the best,
Andy -
- July 3, 2013 at 1:21 pm
Thank you all for your replies:) Especially Maureen, I will send you a private mesage:)
I kind of got the confirmation of my understanding that chemo is the last option – we will need to have a thorough talk with our oncologist. The thing is, we live in a small EU country (Slovenia), where we only have one oncological institute, so any other melanoma specialist we would have to find oudside the country. Given the severity of the situatuion we are of course exploring all options. Costs could unfortunately be a major issue:( Clinical studies therefore seem to be the best options – I will do my best to get us into one.
If there's anybody reading this from EU – do you know if there are any restrictions in joining a clinical trial in another EU member state? We would be prepared to travel to other countries if necessary.
Thank you all, it means to world to us to be able to get such feedback!
All the best,
Andy
-
- July 2, 2013 at 11:11 pm
That is absolutely not true, Ipi definitely can work for stage IV M1c patients. It may be less effective percentage-wise for that category but I don’t know for sure. I do know that it has helped some patients with brain mets, who are by definition M1c.It sounds like the doctor is not a melanoma specialist…is this correct? If so, I would RUN to a mel specialist for a consultation asap. Dacarbazine will always be there…go the clinical trial or Ipi route if possible for now unless for some reason there is a very strong case against it.
The combo trial looks quite promising based on these results presented at ASCO:
http://www.nejm.org/doi/full/10.1056/NEJMoa1302369Best wishes,
Steve -
- July 2, 2013 at 11:11 pm
That is absolutely not true, Ipi definitely can work for stage IV M1c patients. It may be less effective percentage-wise for that category but I don’t know for sure. I do know that it has helped some patients with brain mets, who are by definition M1c.It sounds like the doctor is not a melanoma specialist…is this correct? If so, I would RUN to a mel specialist for a consultation asap. Dacarbazine will always be there…go the clinical trial or Ipi route if possible for now unless for some reason there is a very strong case against it.
The combo trial looks quite promising based on these results presented at ASCO:
http://www.nejm.org/doi/full/10.1056/NEJMoa1302369Best wishes,
Steve -
- July 2, 2013 at 11:56 pm
Hi Andy,
I am sorry you and your wife are going through this awful journey. As a caregiver too, I know how stressful this can be. Make sure you are seeing a top melanoma specialist. I think the ipi/anti-pd1 study is an excellent study, but read carefully from the ASCO meeting because the results can vary from 30-50 percent success rate depending on the dosage you are given. My husband and I were enrolled in the study, but dropped out because he qualified for the adoptive cell transfer at NIH. My husband has a scientific background and if you read enough scientific articles, most of the long term survivors are from this treatment. The staff is excellent there and Dr. Rosenberg is a pioneer in the melanoma field with numerous awards. The treatment is now at MD Anderson and Moffitt. The cost of the treatment has made it difficult to standardized but it is being studied now to bring the cost of it down. Right now all costs of the treatment are paid by each facility as part of research study. Please make sure you see at least two melanoma specialists before you make a decision. Write me offline if you want me to send you any current scientic articles at [email protected]. I wish you and your wife the best! -
- July 2, 2013 at 11:56 pm
Hi Andy,
I am sorry you and your wife are going through this awful journey. As a caregiver too, I know how stressful this can be. Make sure you are seeing a top melanoma specialist. I think the ipi/anti-pd1 study is an excellent study, but read carefully from the ASCO meeting because the results can vary from 30-50 percent success rate depending on the dosage you are given. My husband and I were enrolled in the study, but dropped out because he qualified for the adoptive cell transfer at NIH. My husband has a scientific background and if you read enough scientific articles, most of the long term survivors are from this treatment. The staff is excellent there and Dr. Rosenberg is a pioneer in the melanoma field with numerous awards. The treatment is now at MD Anderson and Moffitt. The cost of the treatment has made it difficult to standardized but it is being studied now to bring the cost of it down. Right now all costs of the treatment are paid by each facility as part of research study. Please make sure you see at least two melanoma specialists before you make a decision. Write me offline if you want me to send you any current scientic articles at [email protected]. I wish you and your wife the best! -
- July 2, 2013 at 11:56 pm
Hi Andy,
I am sorry you and your wife are going through this awful journey. As a caregiver too, I know how stressful this can be. Make sure you are seeing a top melanoma specialist. I think the ipi/anti-pd1 study is an excellent study, but read carefully from the ASCO meeting because the results can vary from 30-50 percent success rate depending on the dosage you are given. My husband and I were enrolled in the study, but dropped out because he qualified for the adoptive cell transfer at NIH. My husband has a scientific background and if you read enough scientific articles, most of the long term survivors are from this treatment. The staff is excellent there and Dr. Rosenberg is a pioneer in the melanoma field with numerous awards. The treatment is now at MD Anderson and Moffitt. The cost of the treatment has made it difficult to standardized but it is being studied now to bring the cost of it down. Right now all costs of the treatment are paid by each facility as part of research study. Please make sure you see at least two melanoma specialists before you make a decision. Write me offline if you want me to send you any current scientic articles at [email protected]. I wish you and your wife the best! -
- July 2, 2013 at 11:14 pm
I have never heard that about Ipi and I’ve read alot. it didnt work fir me but is known for some to work in the brain even, get a second opinion from a melanoma specialist at one of the centers listed under Melanoma Breakthrough Consortium. Dacarbazine is crazy advice. -
- July 2, 2013 at 11:14 pm
I have never heard that about Ipi and I’ve read alot. it didnt work fir me but is known for some to work in the brain even, get a second opinion from a melanoma specialist at one of the centers listed under Melanoma Breakthrough Consortium. Dacarbazine is crazy advice. -
- July 2, 2013 at 11:14 pm
I have never heard that about Ipi and I’ve read alot. it didnt work fir me but is known for some to work in the brain even, get a second opinion from a melanoma specialist at one of the centers listed under Melanoma Breakthrough Consortium. Dacarbazine is crazy advice. -
- July 3, 2013 at 2:19 pm
I know nothing about the ins and outs of clinical trials within the EU, but I used to work for a medical device company who did a ton of business in Europe. By far, Germany was the best place for us to sell devices and conduct clinical trials for cancer (not exclusive to a single type). I know if I were in Europe, I'd look to Germany for what they have to offer.
Good luck!
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- July 3, 2013 at 2:19 pm
I know nothing about the ins and outs of clinical trials within the EU, but I used to work for a medical device company who did a ton of business in Europe. By far, Germany was the best place for us to sell devices and conduct clinical trials for cancer (not exclusive to a single type). I know if I were in Europe, I'd look to Germany for what they have to offer.
Good luck!
-
- July 3, 2013 at 2:19 pm
I know nothing about the ins and outs of clinical trials within the EU, but I used to work for a medical device company who did a ton of business in Europe. By far, Germany was the best place for us to sell devices and conduct clinical trials for cancer (not exclusive to a single type). I know if I were in Europe, I'd look to Germany for what they have to offer.
Good luck!
-
- July 3, 2013 at 7:37 pm
Hi, Andy-
It is my understanding that to consult with the best melanoma specialists or gain access to some clinical trials you may have to travel to a different EU country the same way we often have to travel to a different state within the US. The Melanoma International Foundation forum ( http://forum.melanomainternational.org/mif/ ) is frequented by many melanoma patients from Europe and other contries. I suggest that you ask them for advice about EU melanoma centers and treatment options. The moderator of that forum is Catherine Poole. She is a wealth of information, too. You can email her at [email protected] And while you are on the MIF web site, you might want to watch some of their very good recorded webinars on the different types of melanoma treatments that are now available.
You are doing a great job resesarching information and advocating for your wife. Keep up the good work!
-
- July 3, 2013 at 7:37 pm
Hi, Andy-
It is my understanding that to consult with the best melanoma specialists or gain access to some clinical trials you may have to travel to a different EU country the same way we often have to travel to a different state within the US. The Melanoma International Foundation forum ( http://forum.melanomainternational.org/mif/ ) is frequented by many melanoma patients from Europe and other contries. I suggest that you ask them for advice about EU melanoma centers and treatment options. The moderator of that forum is Catherine Poole. She is a wealth of information, too. You can email her at [email protected] And while you are on the MIF web site, you might want to watch some of their very good recorded webinars on the different types of melanoma treatments that are now available.
You are doing a great job resesarching information and advocating for your wife. Keep up the good work!
-
- July 3, 2013 at 7:37 pm
Hi, Andy-
It is my understanding that to consult with the best melanoma specialists or gain access to some clinical trials you may have to travel to a different EU country the same way we often have to travel to a different state within the US. The Melanoma International Foundation forum ( http://forum.melanomainternational.org/mif/ ) is frequented by many melanoma patients from Europe and other contries. I suggest that you ask them for advice about EU melanoma centers and treatment options. The moderator of that forum is Catherine Poole. She is a wealth of information, too. You can email her at [email protected] And while you are on the MIF web site, you might want to watch some of their very good recorded webinars on the different types of melanoma treatments that are now available.
You are doing a great job resesarching information and advocating for your wife. Keep up the good work!
-
- July 7, 2013 at 1:49 pm
Dear all,
thank you so much for replying. I've been busy locating all the possible clinical trials and learning as much as I can. We are scheduled with our oncologist to discuss our options. Last week the we were so shattered that we did not even know what to ask. As far as I've learned from all the replies and reading, ipi is alo frequently given also to Stage IV 1mc staged patients, but it is up to the oncologist. We hope to have an honest discussin about that tomorrow, as well as abut the option for an operation of the largest tumor in the abdomen area, given that the other smaller ones in the lungs seem to remain the same throughou zelboraf treatment.
Keep your fingers crossed, I wish all the best to you,
Andy
-
- July 7, 2013 at 1:49 pm
Dear all,
thank you so much for replying. I've been busy locating all the possible clinical trials and learning as much as I can. We are scheduled with our oncologist to discuss our options. Last week the we were so shattered that we did not even know what to ask. As far as I've learned from all the replies and reading, ipi is alo frequently given also to Stage IV 1mc staged patients, but it is up to the oncologist. We hope to have an honest discussin about that tomorrow, as well as abut the option for an operation of the largest tumor in the abdomen area, given that the other smaller ones in the lungs seem to remain the same throughou zelboraf treatment.
Keep your fingers crossed, I wish all the best to you,
Andy
-
- July 7, 2013 at 1:49 pm
Dear all,
thank you so much for replying. I've been busy locating all the possible clinical trials and learning as much as I can. We are scheduled with our oncologist to discuss our options. Last week the we were so shattered that we did not even know what to ask. As far as I've learned from all the replies and reading, ipi is alo frequently given also to Stage IV 1mc staged patients, but it is up to the oncologist. We hope to have an honest discussin about that tomorrow, as well as abut the option for an operation of the largest tumor in the abdomen area, given that the other smaller ones in the lungs seem to remain the same throughou zelboraf treatment.
Keep your fingers crossed, I wish all the best to you,
Andy
-
- July 8, 2013 at 12:52 pm
Dear all,
so in order to hopefully buy some time we started today with dacarbazine, but are still investigating other options. As regards Ipi and Mic Stage IV patients we found out today there are no medical restraints, merely financial ones, so at least that question is resolved. I am however wondering about your experiences of ipi after vemurafenib. Are there some recent studies speaking in favour of it or is the case that ipi rarely works if patient had progressed on vemurafenib. We are getting some contradicting information.
We have not given up on clinical trials, we will start contacting study sites tomorrow. Also what do studies say about ipi and heavy tumor burden…what is actually considered a heavy tumor burden?
My wife is extremely brave, she amazes me each time, and we are keeping it strong. Keep your fingers crossed!
All the best to you all,
AndyT
-
- July 8, 2013 at 12:52 pm
Dear all,
so in order to hopefully buy some time we started today with dacarbazine, but are still investigating other options. As regards Ipi and Mic Stage IV patients we found out today there are no medical restraints, merely financial ones, so at least that question is resolved. I am however wondering about your experiences of ipi after vemurafenib. Are there some recent studies speaking in favour of it or is the case that ipi rarely works if patient had progressed on vemurafenib. We are getting some contradicting information.
We have not given up on clinical trials, we will start contacting study sites tomorrow. Also what do studies say about ipi and heavy tumor burden…what is actually considered a heavy tumor burden?
My wife is extremely brave, she amazes me each time, and we are keeping it strong. Keep your fingers crossed!
All the best to you all,
AndyT
-
- July 8, 2013 at 12:52 pm
Dear all,
so in order to hopefully buy some time we started today with dacarbazine, but are still investigating other options. As regards Ipi and Mic Stage IV patients we found out today there are no medical restraints, merely financial ones, so at least that question is resolved. I am however wondering about your experiences of ipi after vemurafenib. Are there some recent studies speaking in favour of it or is the case that ipi rarely works if patient had progressed on vemurafenib. We are getting some contradicting information.
We have not given up on clinical trials, we will start contacting study sites tomorrow. Also what do studies say about ipi and heavy tumor burden…what is actually considered a heavy tumor burden?
My wife is extremely brave, she amazes me each time, and we are keeping it strong. Keep your fingers crossed!
All the best to you all,
AndyT
Tagged: cutaneous melanoma
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