› Forums › Mucosal Melanoma Community › Any bio chemo good responses?
- This topic has 30 replies, 6 voices, and was last updated 11 years, 5 months ago by
squirrell68.
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- November 14, 2012 at 4:03 pm
My brother has just completed his third round of bio chemo at the Sheba Centre, Israel. His scan after the second round showed 60% tumour reduction. This is my first posting and I would love to hear from anyone who has had a good response to this treatment. A quick summary of my brother’s melanoma, he was diagnosed in June 2012 at stage 4 with an unknown primary, although it may be mucosal as a tumour was in his anus. He has extensive liver mets and a brain met, which has been treated with SRS, no other systematic treatment. He is BRAF and CKIT negative.He is feeling 100% better and many of his liver mets symptoms have disappeared. I am trying to stay positive but between treatments I start worrying about the ‘what ifs’. It would be so nice to hear from other people who have been through this treatment. We are from the UK but don’t seem to be able to find anyone in the UK who has had biochemo or even IL2.
Tracey
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- November 14, 2012 at 6:26 pm
Bio chemo isn't used much in the U.S. anymore. My husband had it but progressed pretty quickly and he had terrible side effects. I don't think Canada or UK use either IL2 or biochemo because of cost and low response rates. Great your brother is doing well!
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- November 14, 2012 at 6:26 pm
Bio chemo isn't used much in the U.S. anymore. My husband had it but progressed pretty quickly and he had terrible side effects. I don't think Canada or UK use either IL2 or biochemo because of cost and low response rates. Great your brother is doing well!
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- November 14, 2012 at 6:26 pm
Bio chemo isn't used much in the U.S. anymore. My husband had it but progressed pretty quickly and he had terrible side effects. I don't think Canada or UK use either IL2 or biochemo because of cost and low response rates. Great your brother is doing well!
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- November 14, 2012 at 7:38 pm
Tracey, Actually biochemo is used quite often at MDAnderson in Houston. It’s like ALL melanoma treatments works for a few people who will have a great response, holds others stable for awhile, or doesn’t work at all. My husband completed six rounds of biochemo in Texas from November 2011 to March 2012, and he had significant shrinkage of tumors after second round, he had mixed results after fourth round, and his tumors were growing again after sixth round. However, we view that treatment as a success for Phil because his melanoma was growing fast before we got to Houston, and biochemo definitely slowed things down, and we were able to get into their TIL trial in May 2012. Phil is currently stable, working, and living life!My advice would be to start exploring other treatment options NOW, while he is doing well. Few Stage 4 people are here because they did one magic treatment, it’s able putting together a plan and fighting this disease everyday with every tool available. By the way, my husband’s original site was mucosal/anal and he is also Braf and Ckit negative, but he is still here and feeling well almost three years after initial diagnosis. Best wishes to you and your brother. Valerie (Phil’s wife)
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- November 14, 2012 at 7:56 pm
Thank you Valerie, your advice is brilliant and thank you for responding. I was a bit surprised to read from the previous post that bio chemo is not used much in the US as I know John’s Oncologist in the Sheba works closely with major cancer centres there, which is why she felt that it was a good first line treatment.
We are thinking about plan B now and TIL is still an option, our reasons for pulling out of this was the failed growth of the TILs and the disease progression. We also have the issue of where to take the tumour, we are told liver tumours are not good for TIL.
Do you know if high dose IL2 is offered after biochemo if patients have a partial response?
Tracey -
- November 14, 2012 at 7:56 pm
Thank you Valerie, your advice is brilliant and thank you for responding. I was a bit surprised to read from the previous post that bio chemo is not used much in the US as I know John’s Oncologist in the Sheba works closely with major cancer centres there, which is why she felt that it was a good first line treatment.
We are thinking about plan B now and TIL is still an option, our reasons for pulling out of this was the failed growth of the TILs and the disease progression. We also have the issue of where to take the tumour, we are told liver tumours are not good for TIL.
Do you know if high dose IL2 is offered after biochemo if patients have a partial response?
Tracey -
- November 14, 2012 at 8:27 pm
Tracey, I think high dose IL2 is an option, you just need a doctor to agree it’s worth a try! I like doctors who think outside the box, and realize everyone fighting this disease is an individual. Since, there is no crystal ball in melanoma treatment I think anything and everything should be on the table. Phil did six rounds of low dose IL2 as part of his biochemo, and then did two rounds of high dose IL2 after he got his T cells back, it’s part of TIL at MDAnderson. TIL and high dose IL2 were much easier treatments on his body than biochemo. Phil actually handled high dose IL2 very, very well, and although I was scared about high dose after reading about it on the Internet, he sailed thru and we would do it again in a heartbeat. Phil has been stable with no treatment since his last round of high dose IL2 in June 2012, who knows why?? I tend to think it was the combination of all his treatments, and we are beyond grateful we had the opportunity at TIL. Please keep us posted on your efforts, I bet your brother is glad he has you as an advocate! Keep up the good work. Valerie -
- November 14, 2012 at 8:27 pm
Tracey, I think high dose IL2 is an option, you just need a doctor to agree it’s worth a try! I like doctors who think outside the box, and realize everyone fighting this disease is an individual. Since, there is no crystal ball in melanoma treatment I think anything and everything should be on the table. Phil did six rounds of low dose IL2 as part of his biochemo, and then did two rounds of high dose IL2 after he got his T cells back, it’s part of TIL at MDAnderson. TIL and high dose IL2 were much easier treatments on his body than biochemo. Phil actually handled high dose IL2 very, very well, and although I was scared about high dose after reading about it on the Internet, he sailed thru and we would do it again in a heartbeat. Phil has been stable with no treatment since his last round of high dose IL2 in June 2012, who knows why?? I tend to think it was the combination of all his treatments, and we are beyond grateful we had the opportunity at TIL. Please keep us posted on your efforts, I bet your brother is glad he has you as an advocate! Keep up the good work. Valerie -
- November 14, 2012 at 9:01 pm
Thank you Valerie, IL2 is something we will discuss, John’s Oncologists at the Sheba are fantastic. In the UK we were told there was no hope, they offered him support at home but limited treatment options, he wanted to fight it with an agressive treatment, he is a very fit man, has five children, the youngest is only 12. The approach at Sheba was so different, they are fighting it with us!
John has found the Bio chemo not too bad, the Sheba use the same combination as MD Anderson, but do not use the Inteferon, their reason was because they found the responses were the same without but the side effects were less severe, just their experience. So glad to hear Phil is doing well and is stable, it certainly sounds like this is down to keeping up to date of your next treatment options.
I will keep you posted.
Tracey -
- November 14, 2012 at 9:01 pm
Thank you Valerie, IL2 is something we will discuss, John’s Oncologists at the Sheba are fantastic. In the UK we were told there was no hope, they offered him support at home but limited treatment options, he wanted to fight it with an agressive treatment, he is a very fit man, has five children, the youngest is only 12. The approach at Sheba was so different, they are fighting it with us!
John has found the Bio chemo not too bad, the Sheba use the same combination as MD Anderson, but do not use the Inteferon, their reason was because they found the responses were the same without but the side effects were less severe, just their experience. So glad to hear Phil is doing well and is stable, it certainly sounds like this is down to keeping up to date of your next treatment options.
I will keep you posted.
Tracey -
- November 14, 2012 at 9:01 pm
Thank you Valerie, IL2 is something we will discuss, John’s Oncologists at the Sheba are fantastic. In the UK we were told there was no hope, they offered him support at home but limited treatment options, he wanted to fight it with an agressive treatment, he is a very fit man, has five children, the youngest is only 12. The approach at Sheba was so different, they are fighting it with us!
John has found the Bio chemo not too bad, the Sheba use the same combination as MD Anderson, but do not use the Inteferon, their reason was because they found the responses were the same without but the side effects were less severe, just their experience. So glad to hear Phil is doing well and is stable, it certainly sounds like this is down to keeping up to date of your next treatment options.
I will keep you posted.
Tracey -
- November 14, 2012 at 8:27 pm
Tracey, I think high dose IL2 is an option, you just need a doctor to agree it’s worth a try! I like doctors who think outside the box, and realize everyone fighting this disease is an individual. Since, there is no crystal ball in melanoma treatment I think anything and everything should be on the table. Phil did six rounds of low dose IL2 as part of his biochemo, and then did two rounds of high dose IL2 after he got his T cells back, it’s part of TIL at MDAnderson. TIL and high dose IL2 were much easier treatments on his body than biochemo. Phil actually handled high dose IL2 very, very well, and although I was scared about high dose after reading about it on the Internet, he sailed thru and we would do it again in a heartbeat. Phil has been stable with no treatment since his last round of high dose IL2 in June 2012, who knows why?? I tend to think it was the combination of all his treatments, and we are beyond grateful we had the opportunity at TIL. Please keep us posted on your efforts, I bet your brother is glad he has you as an advocate! Keep up the good work. Valerie -
- November 14, 2012 at 7:56 pm
Thank you Valerie, your advice is brilliant and thank you for responding. I was a bit surprised to read from the previous post that bio chemo is not used much in the US as I know John’s Oncologist in the Sheba works closely with major cancer centres there, which is why she felt that it was a good first line treatment.
We are thinking about plan B now and TIL is still an option, our reasons for pulling out of this was the failed growth of the TILs and the disease progression. We also have the issue of where to take the tumour, we are told liver tumours are not good for TIL.
Do you know if high dose IL2 is offered after biochemo if patients have a partial response?
Tracey
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- November 14, 2012 at 7:38 pm
Tracey, Actually biochemo is used quite often at MDAnderson in Houston. It’s like ALL melanoma treatments works for a few people who will have a great response, holds others stable for awhile, or doesn’t work at all. My husband completed six rounds of biochemo in Texas from November 2011 to March 2012, and he had significant shrinkage of tumors after second round, he had mixed results after fourth round, and his tumors were growing again after sixth round. However, we view that treatment as a success for Phil because his melanoma was growing fast before we got to Houston, and biochemo definitely slowed things down, and we were able to get into their TIL trial in May 2012. Phil is currently stable, working, and living life!My advice would be to start exploring other treatment options NOW, while he is doing well. Few Stage 4 people are here because they did one magic treatment, it’s able putting together a plan and fighting this disease everyday with every tool available. By the way, my husband’s original site was mucosal/anal and he is also Braf and Ckit negative, but he is still here and feeling well almost three years after initial diagnosis. Best wishes to you and your brother. Valerie (Phil’s wife)
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- November 14, 2012 at 7:38 pm
Tracey, Actually biochemo is used quite often at MDAnderson in Houston. It’s like ALL melanoma treatments works for a few people who will have a great response, holds others stable for awhile, or doesn’t work at all. My husband completed six rounds of biochemo in Texas from November 2011 to March 2012, and he had significant shrinkage of tumors after second round, he had mixed results after fourth round, and his tumors were growing again after sixth round. However, we view that treatment as a success for Phil because his melanoma was growing fast before we got to Houston, and biochemo definitely slowed things down, and we were able to get into their TIL trial in May 2012. Phil is currently stable, working, and living life!My advice would be to start exploring other treatment options NOW, while he is doing well. Few Stage 4 people are here because they did one magic treatment, it’s able putting together a plan and fighting this disease everyday with every tool available. By the way, my husband’s original site was mucosal/anal and he is also Braf and Ckit negative, but he is still here and feeling well almost three years after initial diagnosis. Best wishes to you and your brother. Valerie (Phil’s wife)
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- November 15, 2012 at 12:51 am
My husband had a complete response to biochemo in 1999, and has remained NED for over 13 years. I must add that he was not stage IV, but IIIC, but he had nearly 60 positive nodes, both axillary and supraclavicular, so a very aggressive stage III. The supraclavicular nodes were not removed until after the 2nd round of treatment. He'd had two needle biopsies to confirm that they were melanoma before start of treatment, and after round two, 24 nodes were removed and no viable cancer cells were found. All contained black pigment, which the doctor said was like melanoma leaving its footprint. He went on to have 2 more rounds of the treatment, followed by radiation to that area, and we have been blessed to be free of melanoma since.
I know that biochemo is not used as much as it was at that time, partly I would guess because there are several options now that didn't exist back then. But I agree with the person who said, when you are stage IV, all options should be on the table, because you just don't know what may work. Response rates may be low, and the side effects can be brutal (though my husband's experience wasn't as bad as we had feared), but I have heard of other complete responses to biochemo for stage IV patients on this forum. I'm glad you have found someone willing to be aggressive in fighting the melanoma, and I wish your brother the best in his fight.
Blessings,
Phyllis
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- November 15, 2012 at 12:51 am
My husband had a complete response to biochemo in 1999, and has remained NED for over 13 years. I must add that he was not stage IV, but IIIC, but he had nearly 60 positive nodes, both axillary and supraclavicular, so a very aggressive stage III. The supraclavicular nodes were not removed until after the 2nd round of treatment. He'd had two needle biopsies to confirm that they were melanoma before start of treatment, and after round two, 24 nodes were removed and no viable cancer cells were found. All contained black pigment, which the doctor said was like melanoma leaving its footprint. He went on to have 2 more rounds of the treatment, followed by radiation to that area, and we have been blessed to be free of melanoma since.
I know that biochemo is not used as much as it was at that time, partly I would guess because there are several options now that didn't exist back then. But I agree with the person who said, when you are stage IV, all options should be on the table, because you just don't know what may work. Response rates may be low, and the side effects can be brutal (though my husband's experience wasn't as bad as we had feared), but I have heard of other complete responses to biochemo for stage IV patients on this forum. I'm glad you have found someone willing to be aggressive in fighting the melanoma, and I wish your brother the best in his fight.
Blessings,
Phyllis
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- November 15, 2012 at 12:51 am
My husband had a complete response to biochemo in 1999, and has remained NED for over 13 years. I must add that he was not stage IV, but IIIC, but he had nearly 60 positive nodes, both axillary and supraclavicular, so a very aggressive stage III. The supraclavicular nodes were not removed until after the 2nd round of treatment. He'd had two needle biopsies to confirm that they were melanoma before start of treatment, and after round two, 24 nodes were removed and no viable cancer cells were found. All contained black pigment, which the doctor said was like melanoma leaving its footprint. He went on to have 2 more rounds of the treatment, followed by radiation to that area, and we have been blessed to be free of melanoma since.
I know that biochemo is not used as much as it was at that time, partly I would guess because there are several options now that didn't exist back then. But I agree with the person who said, when you are stage IV, all options should be on the table, because you just don't know what may work. Response rates may be low, and the side effects can be brutal (though my husband's experience wasn't as bad as we had feared), but I have heard of other complete responses to biochemo for stage IV patients on this forum. I'm glad you have found someone willing to be aggressive in fighting the melanoma, and I wish your brother the best in his fight.
Blessings,
Phyllis
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- November 15, 2012 at 3:17 am
I had Biochemo in 2004-5 and am still alive. 90% tumor reduction followed by stability, 4 rounds of IL2,multiple surgeries, and now I have been melanoma free for almost 5 years. Ideally 1 treatment knocks the ball out of the park, but if not, there are always options, If you go through my patnet, you will see that I struggled quite a bit, but I am here to tell about it. I agree 100% w/ Phil's wife. If it seems to be that a treatment is going your way, don't listen to all of the naysayers. I'm pretty sure one of the head doctors at Sloan Kettering in NYC said to me (in a rather smarmy way) that Biochemotherapy was unlikely to work, yet here I am. One thing I would get the doctors to look into is something called maintenance biochemotherapy. This is a post biochemotherapy treatment that was shown to extend patients lives and even clear the remaining disease should other options be limited.
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- November 15, 2012 at 3:17 am
I had Biochemo in 2004-5 and am still alive. 90% tumor reduction followed by stability, 4 rounds of IL2,multiple surgeries, and now I have been melanoma free for almost 5 years. Ideally 1 treatment knocks the ball out of the park, but if not, there are always options, If you go through my patnet, you will see that I struggled quite a bit, but I am here to tell about it. I agree 100% w/ Phil's wife. If it seems to be that a treatment is going your way, don't listen to all of the naysayers. I'm pretty sure one of the head doctors at Sloan Kettering in NYC said to me (in a rather smarmy way) that Biochemotherapy was unlikely to work, yet here I am. One thing I would get the doctors to look into is something called maintenance biochemotherapy. This is a post biochemotherapy treatment that was shown to extend patients lives and even clear the remaining disease should other options be limited.
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- November 15, 2012 at 3:17 am
I had Biochemo in 2004-5 and am still alive. 90% tumor reduction followed by stability, 4 rounds of IL2,multiple surgeries, and now I have been melanoma free for almost 5 years. Ideally 1 treatment knocks the ball out of the park, but if not, there are always options, If you go through my patnet, you will see that I struggled quite a bit, but I am here to tell about it. I agree 100% w/ Phil's wife. If it seems to be that a treatment is going your way, don't listen to all of the naysayers. I'm pretty sure one of the head doctors at Sloan Kettering in NYC said to me (in a rather smarmy way) that Biochemotherapy was unlikely to work, yet here I am. One thing I would get the doctors to look into is something called maintenance biochemotherapy. This is a post biochemotherapy treatment that was shown to extend patients lives and even clear the remaining disease should other options be limited.
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- November 15, 2012 at 4:16 pm
In Northern California, Dr. David Minor does bi-chemo. I personally know more than 4 of his patients and they are all stage 4 survivors for many years. He has his own "recipe" I think..and the program includes maintenance with IL2.
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- November 15, 2012 at 4:16 pm
In Northern California, Dr. David Minor does bi-chemo. I personally know more than 4 of his patients and they are all stage 4 survivors for many years. He has his own "recipe" I think..and the program includes maintenance with IL2.
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- November 15, 2012 at 7:45 pm
Thank you everyone for your messages, it’s so good hearing the positive stories and this is such a good forum to make contact with other people who have been fighting melanoma. I will keep everyone posted after the next scan in December. Wishing everyone the best with their fight too. -
- November 15, 2012 at 7:45 pm
Thank you everyone for your messages, it’s so good hearing the positive stories and this is such a good forum to make contact with other people who have been fighting melanoma. I will keep everyone posted after the next scan in December. Wishing everyone the best with their fight too. -
- November 15, 2012 at 7:45 pm
Thank you everyone for your messages, it’s so good hearing the positive stories and this is such a good forum to make contact with other people who have been fighting melanoma. I will keep everyone posted after the next scan in December. Wishing everyone the best with their fight too.
-
- November 15, 2012 at 4:16 pm
In Northern California, Dr. David Minor does bi-chemo. I personally know more than 4 of his patients and they are all stage 4 survivors for many years. He has his own "recipe" I think..and the program includes maintenance with IL2.
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Tagged: mucosal melanoma
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