› Forums › Cutaneous Melanoma Community › IPI partial response
- This topic has 18 replies, 4 voices, and was last updated 11 years, 4 months ago by
Owl.
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- November 30, 2012 at 8:29 pm
Dear all,
usually I am a passive reader of this forum. I have learned a lot about melanoma from you and very thankful. It seems that this page is the only place where you can really educate yourself about melanoma. We live in Germany and I have not yet found such professional and helpful webpage in German.
Dear all,
usually I am a passive reader of this forum. I have learned a lot about melanoma from you and very thankful. It seems that this page is the only place where you can really educate yourself about melanoma. We live in Germany and I have not yet found such professional and helpful webpage in German.
Until now things seem to work out quite well for my husband. He started IPI in May 2012. During the first weeks the disease seemed to progress (from what was visible, around 15 subcutaneous tumors). Then the subcutaneous tumors shrank and dissappeared, one after the other. At those places with hair, he lost the hair, and it grew white hair. Week 12 scans showed stable desease (though we had seen tumors shrinking, but we blame this on the 3 weeks gap between scans and starting IPI). Week 16 scans showed decreasing tumors, only a couple of subcutaneous tumors in the neck were constant in size. Now we received results of week 24 scans. Lung tumors have almost disappeared (biggest one was 10mm, lymp node in abdomen, which was 14mm is now only defined as suspicious. Tumor in testicle has disappeared. Further no new tumors, brain is free. Only the tumors in the neck area make us continue to worry. They have increased. We had seen them growing during the last couple of weeks and worried that there might be growth or new ones somewhere else. Therefore the scan result is not too bad. What makes us worry is the further procedure the docs are proposing. They would like to start Zelboraf (B-RAF positive). This sounds to us such as IPI has not worked. But we have seen it working and we believe that a reinduction would work as well. Fact is that my husband is currently in a trial (IPI comparison 3mg vs. 10mg) and a reinduction is only possible with 20% growth (this seems not to be the case).
We know that Zelboraf can be a good option but we also learned that it is probably not as durable as IPI. We have always thaught of Zelboraf that this is a solution when the tumor burden is big and any other therapies have failed.
The second option they mentioned is an op of the subcutaneous tumors in the neck. It would be in an area where they have already done the lymph node dissection and it is in the area of the aorta. It sounds tricky.
Until now we have only talked to the docs at the phone and they left us with the feeling that they are also not sure what to do. They did not mentioned radiation or IPI reinduction until we asked. We still don't have an answer whether radiation is an option. As we are currently moving house we will also change treatment center. This doesn't make things easier as docs in the old clinic tell us that decisions will be made by the new treatment center. Well, now is weekend and I won't have a chance to speak to them before Monday.
It feels very confusing. Thankfully we have educated ourselfs to ask the right questions but off course the docs are supposed to be the experts.
Has anyone out there similar experiences with partial response from IPI and only subcutaneous tumors left? We still have the hope that the response for these tumors might only be delayed. On the other side, see them growing (they have doubled in size during the last 4 weeks) , doesn't feel right.
I heard that in some countries (probably not Germany) and tumor injections with IL-2 had a very good response. Has anyone experiences with this?
Thank you for being out there,
Jenny
- Replies
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- December 1, 2012 at 4:24 pm
Jenny, if you go through my profile you can see that I have been through a lot of treatments. What worked best for me was immunotherapy and surgery. You are right that long term results aren't always the case w/BRAF medication. When I went through treatment the only options were surgery or radiation. My tumors were not radiation responsive unfortunately and led to the need of more surgery. It is ok for the oncologists to be unsure of what your treatment decision should be. If it were me, I would look for the best surgeon possible have them removed. IPI tends to be very effective in smaller tumors, but it sounds like your husbands outgrew the size where it can be effective. As a rule, the smaller the tumor burden is, the less likely you are to have metastases, since ipi seems to have kept these under control and is still working on the other tumors, if they were removed, then it may just clean up the remains. It also would buy you more time and make a treatment like BRAF more effective should you need them. I may have waited too long on my lung surgery and that is what caused brain metastases(not trying to scare you here), to sneak in.
Either way, I wish you the best of luck in your treatment decision.
Good Luck and God Bless
John
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- December 1, 2012 at 4:24 pm
Jenny, if you go through my profile you can see that I have been through a lot of treatments. What worked best for me was immunotherapy and surgery. You are right that long term results aren't always the case w/BRAF medication. When I went through treatment the only options were surgery or radiation. My tumors were not radiation responsive unfortunately and led to the need of more surgery. It is ok for the oncologists to be unsure of what your treatment decision should be. If it were me, I would look for the best surgeon possible have them removed. IPI tends to be very effective in smaller tumors, but it sounds like your husbands outgrew the size where it can be effective. As a rule, the smaller the tumor burden is, the less likely you are to have metastases, since ipi seems to have kept these under control and is still working on the other tumors, if they were removed, then it may just clean up the remains. It also would buy you more time and make a treatment like BRAF more effective should you need them. I may have waited too long on my lung surgery and that is what caused brain metastases(not trying to scare you here), to sneak in.
Either way, I wish you the best of luck in your treatment decision.
Good Luck and God Bless
John
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- December 1, 2012 at 4:24 pm
Jenny, if you go through my profile you can see that I have been through a lot of treatments. What worked best for me was immunotherapy and surgery. You are right that long term results aren't always the case w/BRAF medication. When I went through treatment the only options were surgery or radiation. My tumors were not radiation responsive unfortunately and led to the need of more surgery. It is ok for the oncologists to be unsure of what your treatment decision should be. If it were me, I would look for the best surgeon possible have them removed. IPI tends to be very effective in smaller tumors, but it sounds like your husbands outgrew the size where it can be effective. As a rule, the smaller the tumor burden is, the less likely you are to have metastases, since ipi seems to have kept these under control and is still working on the other tumors, if they were removed, then it may just clean up the remains. It also would buy you more time and make a treatment like BRAF more effective should you need them. I may have waited too long on my lung surgery and that is what caused brain metastases(not trying to scare you here), to sneak in.
Either way, I wish you the best of luck in your treatment decision.
Good Luck and God Bless
John
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- December 2, 2012 at 6:41 pm
Jenny,
The following link should take you to a You Tube video "Dr. Anna Pavlick Speaks at The 2011 Mollie's Fund Golf Outing". The whole video is interesting but if you skip to around the 8:00 minute marker, that is where she talks about white hair. Also itching is a positive sigh. I would also suggest a vitamin D-3 test. -
- December 2, 2012 at 6:41 pm
Jenny,
The following link should take you to a You Tube video "Dr. Anna Pavlick Speaks at The 2011 Mollie's Fund Golf Outing". The whole video is interesting but if you skip to around the 8:00 minute marker, that is where she talks about white hair. Also itching is a positive sigh. I would also suggest a vitamin D-3 test. -
- December 2, 2012 at 6:41 pm
Jenny,
The following link should take you to a You Tube video "Dr. Anna Pavlick Speaks at The 2011 Mollie's Fund Golf Outing". The whole video is interesting but if you skip to around the 8:00 minute marker, that is where she talks about white hair. Also itching is a positive sigh. I would also suggest a vitamin D-3 test. -
- December 2, 2012 at 8:18 pm
I'm confused. You say that your husband is on an Ipi trial. In the US, Ipi is FDA approved–you don't need to be in a trial to get Ipi. Is it the same in Germany? I mean, if your husband chooses to start Zelboraf, does that mean he must stop the Ipi treatments? Can he do both at the same time?
If he can continue with the Ipi, why not take Zelboraf, too? They are two different treatments that work by totally different mechanisms, so it might be a good idea. On the other hand, if he has to choose either Ipi or Zelboraf (and remember that Z only works in 50% of the patients and only for an average of 6-8 months), then I would probably go with radiation or surgery. As you say, the Ipi is working in the rest of his body and it would be hard to give that up.
Gosh! We patients and caregivers do have some tough choices to make, don't we?! Well, I guess we should be thankful that we DO have choices. Two years ago we didn't have any options.
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- December 2, 2012 at 8:18 pm
I'm confused. You say that your husband is on an Ipi trial. In the US, Ipi is FDA approved–you don't need to be in a trial to get Ipi. Is it the same in Germany? I mean, if your husband chooses to start Zelboraf, does that mean he must stop the Ipi treatments? Can he do both at the same time?
If he can continue with the Ipi, why not take Zelboraf, too? They are two different treatments that work by totally different mechanisms, so it might be a good idea. On the other hand, if he has to choose either Ipi or Zelboraf (and remember that Z only works in 50% of the patients and only for an average of 6-8 months), then I would probably go with radiation or surgery. As you say, the Ipi is working in the rest of his body and it would be hard to give that up.
Gosh! We patients and caregivers do have some tough choices to make, don't we?! Well, I guess we should be thankful that we DO have choices. Two years ago we didn't have any options.
-
- December 2, 2012 at 8:18 pm
I'm confused. You say that your husband is on an Ipi trial. In the US, Ipi is FDA approved–you don't need to be in a trial to get Ipi. Is it the same in Germany? I mean, if your husband chooses to start Zelboraf, does that mean he must stop the Ipi treatments? Can he do both at the same time?
If he can continue with the Ipi, why not take Zelboraf, too? They are two different treatments that work by totally different mechanisms, so it might be a good idea. On the other hand, if he has to choose either Ipi or Zelboraf (and remember that Z only works in 50% of the patients and only for an average of 6-8 months), then I would probably go with radiation or surgery. As you say, the Ipi is working in the rest of his body and it would be hard to give that up.
Gosh! We patients and caregivers do have some tough choices to make, don't we?! Well, I guess we should be thankful that we DO have choices. Two years ago we didn't have any options.
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- December 3, 2012 at 12:35 pm
Dear all,
thank you for your responses. It is so helpful to speak to people who have the same experiences. Your stories are very encouraging to us. Today I tried to reach the oncologists and surgents in the new treatment center, they have no information yet. So I pushed our former oncologists to speak to them…still waiting for a call.
We discussed all options during the weekend and we are sure that we will find the right treatment. But before there are so many questions that we need to have answers for. Surgery is first option so I am currently trying to find the right surgeon.
John, your story is most encouraging. I am so happy for you and your little family that you can celebrate so many years of being NED. Our daughter was only 6 weeks when my husband got the diagnosis in February 2012, she is our best motivation.
Gene, thank you for your ongoing research and your postings.I have seen this film before on your recommendation. Also, my husband has already an appointment this thursday for Vitamin D test (your recommendation too).
POW, you are right IPI is FDA approved in Germany as well, at least in the dosage of 3mg. Off course in a reinduction is a good option for us, my husband would leave the trial and try it with the 3mg dosage. I was only confused because they did not mention a reinduction at all until we asked. Regarding the combination of Z and IPI I remember that we discussed this with one of the oncologists 6 months ago. He said this would be very experimental. It is worth discussing this with the new oncologists.
Thank you again, I will keep you updated,
Jenny
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- December 3, 2012 at 12:35 pm
Dear all,
thank you for your responses. It is so helpful to speak to people who have the same experiences. Your stories are very encouraging to us. Today I tried to reach the oncologists and surgents in the new treatment center, they have no information yet. So I pushed our former oncologists to speak to them…still waiting for a call.
We discussed all options during the weekend and we are sure that we will find the right treatment. But before there are so many questions that we need to have answers for. Surgery is first option so I am currently trying to find the right surgeon.
John, your story is most encouraging. I am so happy for you and your little family that you can celebrate so many years of being NED. Our daughter was only 6 weeks when my husband got the diagnosis in February 2012, she is our best motivation.
Gene, thank you for your ongoing research and your postings.I have seen this film before on your recommendation. Also, my husband has already an appointment this thursday for Vitamin D test (your recommendation too).
POW, you are right IPI is FDA approved in Germany as well, at least in the dosage of 3mg. Off course in a reinduction is a good option for us, my husband would leave the trial and try it with the 3mg dosage. I was only confused because they did not mention a reinduction at all until we asked. Regarding the combination of Z and IPI I remember that we discussed this with one of the oncologists 6 months ago. He said this would be very experimental. It is worth discussing this with the new oncologists.
Thank you again, I will keep you updated,
Jenny
-
- December 3, 2012 at 12:35 pm
Dear all,
thank you for your responses. It is so helpful to speak to people who have the same experiences. Your stories are very encouraging to us. Today I tried to reach the oncologists and surgents in the new treatment center, they have no information yet. So I pushed our former oncologists to speak to them…still waiting for a call.
We discussed all options during the weekend and we are sure that we will find the right treatment. But before there are so many questions that we need to have answers for. Surgery is first option so I am currently trying to find the right surgeon.
John, your story is most encouraging. I am so happy for you and your little family that you can celebrate so many years of being NED. Our daughter was only 6 weeks when my husband got the diagnosis in February 2012, she is our best motivation.
Gene, thank you for your ongoing research and your postings.I have seen this film before on your recommendation. Also, my husband has already an appointment this thursday for Vitamin D test (your recommendation too).
POW, you are right IPI is FDA approved in Germany as well, at least in the dosage of 3mg. Off course in a reinduction is a good option for us, my husband would leave the trial and try it with the 3mg dosage. I was only confused because they did not mention a reinduction at all until we asked. Regarding the combination of Z and IPI I remember that we discussed this with one of the oncologists 6 months ago. He said this would be very experimental. It is worth discussing this with the new oncologists.
Thank you again, I will keep you updated,
Jenny
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- December 3, 2012 at 4:10 pm
Hello Jenny,
My husband has been in an Ipi trial since March 2011 and after the initial 12 weeks he gets an infusion of Ipi every 12 weeks on what is called the maintenance phase. He is on the trial with Ipi at 10mg/kg and also GM-CSF (which are shots that we self inject for everyday for 2 weeks and then 1 week off). Did your husband get the 3 mg or 10mg and is it possible for him to go on maintenance phase of his trial? My husband also gets scans 3 weeks after the infusions.
He is now NED (no evidence of disease) but if he goes off of the trial then he would not be able to get the 10 mg as it is not approved yet here in the USA. He had 3 lesions in the liver with the largest 5 x 6, 3 in the lungs, 1 on the cervical spine at vertebra # 1 and 2 (not operable because would probably leave him a crippled) and 3 sub q's in the area where the cervical spine lesion was.
Hope you find some answers.
Judy (loving wife of Gene)
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- December 3, 2012 at 4:10 pm
Hello Jenny,
My husband has been in an Ipi trial since March 2011 and after the initial 12 weeks he gets an infusion of Ipi every 12 weeks on what is called the maintenance phase. He is on the trial with Ipi at 10mg/kg and also GM-CSF (which are shots that we self inject for everyday for 2 weeks and then 1 week off). Did your husband get the 3 mg or 10mg and is it possible for him to go on maintenance phase of his trial? My husband also gets scans 3 weeks after the infusions.
He is now NED (no evidence of disease) but if he goes off of the trial then he would not be able to get the 10 mg as it is not approved yet here in the USA. He had 3 lesions in the liver with the largest 5 x 6, 3 in the lungs, 1 on the cervical spine at vertebra # 1 and 2 (not operable because would probably leave him a crippled) and 3 sub q's in the area where the cervical spine lesion was.
Hope you find some answers.
Judy (loving wife of Gene)
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- December 3, 2012 at 6:58 pm
Dear Judy,
my husband is in a double blind trial and we were told that the dose will only be told when you leave the trial. But it is a good point, I will check with the docs again (new treatment center might be a little more flexible). That is also why we stick a little bit with the trial, in case of a reinduction there is a chance that it is the non-approved 10mg. There is no maintenance phase at all in this trial. I asked this already in the beginning because I had read of it several times. Only reinduction is possible under certain criteria.
For Gene the trial seemed to be just right, especially with tumors with this size. Thank you for sharing your story, helps believe that my husband can control this beast.
Meanwhile I had the chance to talk to the clinic. Probably we will have an appointment this thursday, I check with the secretary tomorrow again, got some "magic words" from the doc to speed it up.
Thank you so much,
Jenny
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- December 3, 2012 at 6:58 pm
Dear Judy,
my husband is in a double blind trial and we were told that the dose will only be told when you leave the trial. But it is a good point, I will check with the docs again (new treatment center might be a little more flexible). That is also why we stick a little bit with the trial, in case of a reinduction there is a chance that it is the non-approved 10mg. There is no maintenance phase at all in this trial. I asked this already in the beginning because I had read of it several times. Only reinduction is possible under certain criteria.
For Gene the trial seemed to be just right, especially with tumors with this size. Thank you for sharing your story, helps believe that my husband can control this beast.
Meanwhile I had the chance to talk to the clinic. Probably we will have an appointment this thursday, I check with the secretary tomorrow again, got some "magic words" from the doc to speed it up.
Thank you so much,
Jenny
-
- December 3, 2012 at 6:58 pm
Dear Judy,
my husband is in a double blind trial and we were told that the dose will only be told when you leave the trial. But it is a good point, I will check with the docs again (new treatment center might be a little more flexible). That is also why we stick a little bit with the trial, in case of a reinduction there is a chance that it is the non-approved 10mg. There is no maintenance phase at all in this trial. I asked this already in the beginning because I had read of it several times. Only reinduction is possible under certain criteria.
For Gene the trial seemed to be just right, especially with tumors with this size. Thank you for sharing your story, helps believe that my husband can control this beast.
Meanwhile I had the chance to talk to the clinic. Probably we will have an appointment this thursday, I check with the secretary tomorrow again, got some "magic words" from the doc to speed it up.
Thank you so much,
Jenny
-
- December 3, 2012 at 4:10 pm
Hello Jenny,
My husband has been in an Ipi trial since March 2011 and after the initial 12 weeks he gets an infusion of Ipi every 12 weeks on what is called the maintenance phase. He is on the trial with Ipi at 10mg/kg and also GM-CSF (which are shots that we self inject for everyday for 2 weeks and then 1 week off). Did your husband get the 3 mg or 10mg and is it possible for him to go on maintenance phase of his trial? My husband also gets scans 3 weeks after the infusions.
He is now NED (no evidence of disease) but if he goes off of the trial then he would not be able to get the 10 mg as it is not approved yet here in the USA. He had 3 lesions in the liver with the largest 5 x 6, 3 in the lungs, 1 on the cervical spine at vertebra # 1 and 2 (not operable because would probably leave him a crippled) and 3 sub q's in the area where the cervical spine lesion was.
Hope you find some answers.
Judy (loving wife of Gene)
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