› Forums › General Melanoma Community › TIL therapy when you have menigeal mets?
- This topic has 18 replies, 3 voices, and was last updated 12 years, 5 months ago by
Janner.
- Post
- Replies
-
-
- November 13, 2013 at 2:34 pm
I get that you are worried, but MDA regularly treats advanced melanoma. They are going to have the best knowledge of whether or not this is a viable treatment for your friend. And if this is the only option given and your friend still wants to try treatment, then I don't think you can really talk about toxicity. It's up to your friend to decide if he wants to keep up fighting. Sometimes, there are no good choices, but when it comes to treatment – it's your friends choice, not yours.
-
- November 13, 2013 at 2:34 pm
I get that you are worried, but MDA regularly treats advanced melanoma. They are going to have the best knowledge of whether or not this is a viable treatment for your friend. And if this is the only option given and your friend still wants to try treatment, then I don't think you can really talk about toxicity. It's up to your friend to decide if he wants to keep up fighting. Sometimes, there are no good choices, but when it comes to treatment – it's your friends choice, not yours.
-
- November 13, 2013 at 2:45 pm
The question was to help my friend, he asked me to post it. Obviously it is his choice. MDA has had a lot of staff leave and their reputation has gone down. So it isn't a slamdunk he'll get the best treatment. He's been refused into any trials and has to pay a lot of money for this TIL procedure since it isn't a trial. So I am being his supportive friend and you are judgemental to my intentions. Looking for scientific knowledge not personal opinions.
-
- November 13, 2013 at 2:45 pm
The question was to help my friend, he asked me to post it. Obviously it is his choice. MDA has had a lot of staff leave and their reputation has gone down. So it isn't a slamdunk he'll get the best treatment. He's been refused into any trials and has to pay a lot of money for this TIL procedure since it isn't a trial. So I am being his supportive friend and you are judgemental to my intentions. Looking for scientific knowledge not personal opinions.
-
- November 13, 2013 at 7:03 pm
Then you need to say you were "posting for him". That certainly wasn't clear. And MDA still has a good reputation out there despite any staff leaving. No one site has a posted better cure rate than others. Your friend could request a second opinion at another melanoma center of excellence – some might be willing to do a phone consult once his medical history file has been sent if he wasn't able to travel.
Besides WBR, I've only seen one treatment done for meningeal mets and that was at MDA. It was a different treatment, though. It was essential an interthecal IL-2 recommended by Dr. Papa. Can't remember the exact terminology but you could do a search for Amy Busby's profile on this site. She had this done at MDA with good results and I recently saw someone else going to attempt this same treatment there as well with Dr. Papa (posted on another site). Any type of brain involvement is typically a disqualification for clinical trials so all treatments he could pursue could be costly. I have never seen anyone post here about doing TIL for meningeal mets so that could be something new on this site. Did your friend ask for any clinical results supporting this type of treatment for meningeal mets?
Does he have mets elsewhere? What treatments has he already done? More information posted would help others reply.
-
- November 13, 2013 at 7:03 pm
Then you need to say you were "posting for him". That certainly wasn't clear. And MDA still has a good reputation out there despite any staff leaving. No one site has a posted better cure rate than others. Your friend could request a second opinion at another melanoma center of excellence – some might be willing to do a phone consult once his medical history file has been sent if he wasn't able to travel.
Besides WBR, I've only seen one treatment done for meningeal mets and that was at MDA. It was a different treatment, though. It was essential an interthecal IL-2 recommended by Dr. Papa. Can't remember the exact terminology but you could do a search for Amy Busby's profile on this site. She had this done at MDA with good results and I recently saw someone else going to attempt this same treatment there as well with Dr. Papa (posted on another site). Any type of brain involvement is typically a disqualification for clinical trials so all treatments he could pursue could be costly. I have never seen anyone post here about doing TIL for meningeal mets so that could be something new on this site. Did your friend ask for any clinical results supporting this type of treatment for meningeal mets?
Does he have mets elsewhere? What treatments has he already done? More information posted would help others reply.
-
- November 13, 2013 at 7:03 pm
Then you need to say you were "posting for him". That certainly wasn't clear. And MDA still has a good reputation out there despite any staff leaving. No one site has a posted better cure rate than others. Your friend could request a second opinion at another melanoma center of excellence – some might be willing to do a phone consult once his medical history file has been sent if he wasn't able to travel.
Besides WBR, I've only seen one treatment done for meningeal mets and that was at MDA. It was a different treatment, though. It was essential an interthecal IL-2 recommended by Dr. Papa. Can't remember the exact terminology but you could do a search for Amy Busby's profile on this site. She had this done at MDA with good results and I recently saw someone else going to attempt this same treatment there as well with Dr. Papa (posted on another site). Any type of brain involvement is typically a disqualification for clinical trials so all treatments he could pursue could be costly. I have never seen anyone post here about doing TIL for meningeal mets so that could be something new on this site. Did your friend ask for any clinical results supporting this type of treatment for meningeal mets?
Does he have mets elsewhere? What treatments has he already done? More information posted would help others reply.
-
- November 13, 2013 at 2:45 pm
The question was to help my friend, he asked me to post it. Obviously it is his choice. MDA has had a lot of staff leave and their reputation has gone down. So it isn't a slamdunk he'll get the best treatment. He's been refused into any trials and has to pay a lot of money for this TIL procedure since it isn't a trial. So I am being his supportive friend and you are judgemental to my intentions. Looking for scientific knowledge not personal opinions.
-
- November 13, 2013 at 2:34 pm
I get that you are worried, but MDA regularly treats advanced melanoma. They are going to have the best knowledge of whether or not this is a viable treatment for your friend. And if this is the only option given and your friend still wants to try treatment, then I don't think you can really talk about toxicity. It's up to your friend to decide if he wants to keep up fighting. Sometimes, there are no good choices, but when it comes to treatment – it's your friends choice, not yours.
-
- November 13, 2013 at 7:01 pm
i have to confess I don't know that much about TIL as it is not something that is really available to me- I think there are only a few places in the country that can do it because it requires some very specialized equipment. I do recall from my limited knowledge base that it is also very expensive. Is this being offered as part of a trial or as a stand alone therapy for your friend? I also had a question about your toxicity concerns- if I remember correctly TIL is typically done in conjuction with either chemo or IL2. Is this where the toxicity concerns come in, or is it with the TIL itself, or does your friend have some oher health issues that are concerning you?
Again from my fuzzy memory, I believe TIL can be quite effective, though I don't know if it's been specifically studied for meningial disease. I don't see why it would be any less affective there than anywhere else though. It's been shown that other therapies like Yervoy do not cross the blood brain barrier, but the activated cells do and so it can be just as effective in the brain as it is in the rest of the body. I don't see why TIL (which is training the same immune cells to fight melanoma then putting them back into the body instead of hoping the body does a good enough job itself) wouldn't do the same.
I do know they don't like to do IL2 therapy if there is brain or meningial disease because of fear of swelling and related problems. I obviously don't know much about your friend's situation, but I also had several brain mets and "many suspicious areas of concern on the meninges" this spring which disqualified me from trials. Because of the meningial aspect they had me do whole brain radiation for the brain/meningial disease and Yervoy for the rest of my body (and to hopefully help with my brain). Is radiation not an option for the meningial problem? It's my understanding that for most trials they won't take "active or untreated" brain/meningial disease, but if you treat it (i.e. with radiation) you can become eligible for other trials after a waiting period.
Best of luck to you and your friend as you try to get things figured out
-
- November 13, 2013 at 7:01 pm
i have to confess I don't know that much about TIL as it is not something that is really available to me- I think there are only a few places in the country that can do it because it requires some very specialized equipment. I do recall from my limited knowledge base that it is also very expensive. Is this being offered as part of a trial or as a stand alone therapy for your friend? I also had a question about your toxicity concerns- if I remember correctly TIL is typically done in conjuction with either chemo or IL2. Is this where the toxicity concerns come in, or is it with the TIL itself, or does your friend have some oher health issues that are concerning you?
Again from my fuzzy memory, I believe TIL can be quite effective, though I don't know if it's been specifically studied for meningial disease. I don't see why it would be any less affective there than anywhere else though. It's been shown that other therapies like Yervoy do not cross the blood brain barrier, but the activated cells do and so it can be just as effective in the brain as it is in the rest of the body. I don't see why TIL (which is training the same immune cells to fight melanoma then putting them back into the body instead of hoping the body does a good enough job itself) wouldn't do the same.
I do know they don't like to do IL2 therapy if there is brain or meningial disease because of fear of swelling and related problems. I obviously don't know much about your friend's situation, but I also had several brain mets and "many suspicious areas of concern on the meninges" this spring which disqualified me from trials. Because of the meningial aspect they had me do whole brain radiation for the brain/meningial disease and Yervoy for the rest of my body (and to hopefully help with my brain). Is radiation not an option for the meningial problem? It's my understanding that for most trials they won't take "active or untreated" brain/meningial disease, but if you treat it (i.e. with radiation) you can become eligible for other trials after a waiting period.
Best of luck to you and your friend as you try to get things figured out
-
- November 13, 2013 at 8:42 pm
When I looked at Amy's profile, I saw she died not long after that IL2 infusion in her brain. NCI has the best results with TIL but only takes very healthy people. So there really isn't any good treatment that crosses the blood brain barrier I'm guessing. I still think your reply was snappy for a mere question.
-
- November 13, 2013 at 8:42 pm
When I looked at Amy's profile, I saw she died not long after that IL2 infusion in her brain. NCI has the best results with TIL but only takes very healthy people. So there really isn't any good treatment that crosses the blood brain barrier I'm guessing. I still think your reply was snappy for a mere question.
-
- November 14, 2013 at 1:26 am
I'll try to refrain from posting to you in the future then, if you don't like my replies. But because I'd like to help your friend, I'll clarify this about Amy's profile: Amy had good results from the IL-2 for meningeal mets, it was other mets in her body that were the problem. She was taking treatment at a time when Zelboraf was still in clinical trials and was removed from the trial when the meningeal mets were found. She had been promised she could go back on that when the brain mets were under control. The promise was never fulfilled and she was denied Zelboraf after interthecal IL-2. She had no further treatment options available and so passed away.
-
- November 14, 2013 at 1:26 am
I'll try to refrain from posting to you in the future then, if you don't like my replies. But because I'd like to help your friend, I'll clarify this about Amy's profile: Amy had good results from the IL-2 for meningeal mets, it was other mets in her body that were the problem. She was taking treatment at a time when Zelboraf was still in clinical trials and was removed from the trial when the meningeal mets were found. She had been promised she could go back on that when the brain mets were under control. The promise was never fulfilled and she was denied Zelboraf after interthecal IL-2. She had no further treatment options available and so passed away.
-
- November 14, 2013 at 1:26 am
I'll try to refrain from posting to you in the future then, if you don't like my replies. But because I'd like to help your friend, I'll clarify this about Amy's profile: Amy had good results from the IL-2 for meningeal mets, it was other mets in her body that were the problem. She was taking treatment at a time when Zelboraf was still in clinical trials and was removed from the trial when the meningeal mets were found. She had been promised she could go back on that when the brain mets were under control. The promise was never fulfilled and she was denied Zelboraf after interthecal IL-2. She had no further treatment options available and so passed away.
-
- November 13, 2013 at 8:42 pm
When I looked at Amy's profile, I saw she died not long after that IL2 infusion in her brain. NCI has the best results with TIL but only takes very healthy people. So there really isn't any good treatment that crosses the blood brain barrier I'm guessing. I still think your reply was snappy for a mere question.
-
- November 13, 2013 at 7:01 pm
i have to confess I don't know that much about TIL as it is not something that is really available to me- I think there are only a few places in the country that can do it because it requires some very specialized equipment. I do recall from my limited knowledge base that it is also very expensive. Is this being offered as part of a trial or as a stand alone therapy for your friend? I also had a question about your toxicity concerns- if I remember correctly TIL is typically done in conjuction with either chemo or IL2. Is this where the toxicity concerns come in, or is it with the TIL itself, or does your friend have some oher health issues that are concerning you?
Again from my fuzzy memory, I believe TIL can be quite effective, though I don't know if it's been specifically studied for meningial disease. I don't see why it would be any less affective there than anywhere else though. It's been shown that other therapies like Yervoy do not cross the blood brain barrier, but the activated cells do and so it can be just as effective in the brain as it is in the rest of the body. I don't see why TIL (which is training the same immune cells to fight melanoma then putting them back into the body instead of hoping the body does a good enough job itself) wouldn't do the same.
I do know they don't like to do IL2 therapy if there is brain or meningial disease because of fear of swelling and related problems. I obviously don't know much about your friend's situation, but I also had several brain mets and "many suspicious areas of concern on the meninges" this spring which disqualified me from trials. Because of the meningial aspect they had me do whole brain radiation for the brain/meningial disease and Yervoy for the rest of my body (and to hopefully help with my brain). Is radiation not an option for the meningial problem? It's my understanding that for most trials they won't take "active or untreated" brain/meningial disease, but if you treat it (i.e. with radiation) you can become eligible for other trials after a waiting period.
Best of luck to you and your friend as you try to get things figured out
-
- You must be logged in to reply to this topic.