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- This topic has 57 replies, 6 voices, and was last updated 9 years, 9 months ago by
rdg.
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- May 8, 2016 at 5:08 am
Hello again everyone. I saw onc yesterday after CT Scan. She said that mass on left side near intestines is not invading intestines but in tissue surrounding…which apparently is a good thing. The reading of the PET scan by radiologist said there was no concern with the high SUV uptake…appared muscular in nature which after the CT Scan Friday was confirmed. Though there appears to be two small spots in lower back. So we moved to options….surgery is a certain in both scenarios.
1. Transfer of Genetically Enginereed Lymphocytes. #01586403 So I guess you have to be positive for HLA-A2 antigen in your blood. They drew blood and I should know by Tuesday or Wednesday. They said it's 50/50 chance I'm positive. I have no idea what it is or means. Anyone have any insight into this trial? At first I thought it was a TIL trial. So blood results hinge on this…
2. Intratumoral Cavatak combo with Ipi. So I guess this is just ipi paired with injectable virus.
My onc likes both options at this point but wants that HLA-A2 test first because that could determine where suregery is done as Loyola University Medical Center has first trial. I have tons of questions that I posed to her that I'd like to pose here and ask anyone that can address please do.
1. Would TIL be a better option? I'm not sure I can get into that but shoud it be explored. Though she likes the promise of it, I'm not in a place where this treatment is needed.
2. I responded to ipi in past but apparently Nivo had no impact on me. Can the Nivo/ipi combo possibly provide a response…or keytruda? Some other type of combo. And can you respond a 2nd time to ipi. Her response was yes, people have responded 2nd time go around with ipi and have had durable responses. Clearly she feels ipi combo with virus is best path for me. I haven't see results but honestly I've been so beat down that I haven't looked.
3. What else is in pipeline that can provide benefit for me…a durable response. Apparently there is quite a bit but she never wants to put cart before horse. She feels these can be 2 good options that put me on the right path…I just can't help but wonder if there is something more.
Anyway, I'd like surgery ASAP. This seemed to come on quickly and like many of you I'm just plain tired of this shitty disease. I pray daily for all of us and give thanks for this forum. I try to peek in every now and then because I like to check in on people but really just stick to Celeste's blog. I saw that Charlie is back and it just pisses me off and make me even more upset. I hate to see the struggles but appreciate all the support…
Josh
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- May 8, 2016 at 5:37 pm
Hi Josh,
Everyone has been rooting for you and glad the CT had mostly good news. As for the spots, can radiation be applied as a substitute for surgery? There is growing evidence that there is a synergistic effect with radiation and immunotherapy, The abscopal effect. Celeste will no doubt come up with some good info on options and trials. I can say that for me, after failing all the single agent immunotherapies, it was the triple play of ipi/nivo/radiation that has finally shown some systemic response. This is certainly a less invasive approach although for every action there is a reaction, and radiation in particular can have unintended consequences. Beat the beast!
Gary
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- May 8, 2016 at 5:37 pm
Hi Josh,
Everyone has been rooting for you and glad the CT had mostly good news. As for the spots, can radiation be applied as a substitute for surgery? There is growing evidence that there is a synergistic effect with radiation and immunotherapy, The abscopal effect. Celeste will no doubt come up with some good info on options and trials. I can say that for me, after failing all the single agent immunotherapies, it was the triple play of ipi/nivo/radiation that has finally shown some systemic response. This is certainly a less invasive approach although for every action there is a reaction, and radiation in particular can have unintended consequences. Beat the beast!
Gary
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- May 8, 2016 at 5:37 pm
Hi Josh,
Everyone has been rooting for you and glad the CT had mostly good news. As for the spots, can radiation be applied as a substitute for surgery? There is growing evidence that there is a synergistic effect with radiation and immunotherapy, The abscopal effect. Celeste will no doubt come up with some good info on options and trials. I can say that for me, after failing all the single agent immunotherapies, it was the triple play of ipi/nivo/radiation that has finally shown some systemic response. This is certainly a less invasive approach although for every action there is a reaction, and radiation in particular can have unintended consequences. Beat the beast!
Gary
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- May 8, 2016 at 5:38 pm
Here's my best report on intralesional therapy and CAVATAK specifically. Just can't put links and paste and correct things directly onto this response box very well. Here's the link: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/cavatak-intralesional-therapy-derived.html
Found a pembro/CAVATAK study and included it for general info…but unfortunately, prior anti-PD1 is an exclusion.
More coming. love, c
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- May 8, 2016 at 5:38 pm
Here's my best report on intralesional therapy and CAVATAK specifically. Just can't put links and paste and correct things directly onto this response box very well. Here's the link: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/cavatak-intralesional-therapy-derived.html
Found a pembro/CAVATAK study and included it for general info…but unfortunately, prior anti-PD1 is an exclusion.
More coming. love, c
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- May 8, 2016 at 5:38 pm
Here's my best report on intralesional therapy and CAVATAK specifically. Just can't put links and paste and correct things directly onto this response box very well. Here's the link: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/cavatak-intralesional-therapy-derived.html
Found a pembro/CAVATAK study and included it for general info…but unfortunately, prior anti-PD1 is an exclusion.
More coming. love, c
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- May 8, 2016 at 6:06 pm
Here are a couple of links for you. I like ipi with (IDO) concept https://www.youtube.com/watch?v=6QRuBkOr0cQ . A second video is from Dr. Weber on Cancer Research Institute webinar where at about the 35 min mark he gets into Tils. https://www.youtube.com/watch?v=3hlGq-3F1uQ I hope this is of some help!!! Best Wishes!!!! Ed
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- May 8, 2016 at 6:06 pm
Here are a couple of links for you. I like ipi with (IDO) concept https://www.youtube.com/watch?v=6QRuBkOr0cQ . A second video is from Dr. Weber on Cancer Research Institute webinar where at about the 35 min mark he gets into Tils. https://www.youtube.com/watch?v=3hlGq-3F1uQ I hope this is of some help!!! Best Wishes!!!! Ed
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- May 8, 2016 at 6:06 pm
Here are a couple of links for you. I like ipi with (IDO) concept https://www.youtube.com/watch?v=6QRuBkOr0cQ . A second video is from Dr. Weber on Cancer Research Institute webinar where at about the 35 min mark he gets into Tils. https://www.youtube.com/watch?v=3hlGq-3F1uQ I hope this is of some help!!! Best Wishes!!!! Ed
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- May 8, 2016 at 6:51 pm
My best report on TIL's. Caveats above apply. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/til-tumor-infiltrating-lymphocytes.html
love, c
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- May 8, 2016 at 6:51 pm
My best report on TIL's. Caveats above apply. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/til-tumor-infiltrating-lymphocytes.html
love, c
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- May 8, 2016 at 6:51 pm
My best report on TIL's. Caveats above apply. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/til-tumor-infiltrating-lymphocytes.html
love, c
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- May 8, 2016 at 7:21 pm
My best ideas on other trial options (with great thanks to my dear friend, Eric!!)
love, c
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- May 8, 2016 at 7:21 pm
My best ideas on other trial options (with great thanks to my dear friend, Eric!!)
love, c
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- May 8, 2016 at 7:21 pm
My best ideas on other trial options (with great thanks to my dear friend, Eric!!)
love, c
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- May 8, 2016 at 7:56 pm
Ok, Josh…
Well, S&!T!!!! On the other hand….at least the "big thing" on PET…isn't much of a monster. I tried to address your questions about TIL and CAVATAK in the posts I made. Found some other trial options you might want to ask your doc about…who seems very good, by the way!!!! I agree with Gary about combo's and in particular…considering radiation as a component. I also like the idea of IDO inhibitors (like Ed mentioned) and one of the trials I included addresses that.
Do you know your BRAF and NRAS status? I'm guessing you do…but that could be important for you in what you choose going forward.
It seems like your tumor growth in some ways has been indolent….meaning it hasn't gone completely crazily invasive…on the other hand…it has been mighty dang persistent despite some pretty agressive treatment!!! All this to say….sometimes folks in that situation are benefited by genetic investigation of the tumor. Sometimes, once that is done, picking the proper poison is a lot more clear and even though it is "melanoma" folks find that it can respond to rather out-of-the-box treatments like HER-2 drugs most commonly used in breast cancer and such. I don't know that you would find that to be the case with yours….but with your history….I think I'd be asking about further DNA testing.
Guess that's about all I got. Hang in there. You're tough. Sorry you have to be. But, you are. c
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- May 8, 2016 at 7:56 pm
Ok, Josh…
Well, S&!T!!!! On the other hand….at least the "big thing" on PET…isn't much of a monster. I tried to address your questions about TIL and CAVATAK in the posts I made. Found some other trial options you might want to ask your doc about…who seems very good, by the way!!!! I agree with Gary about combo's and in particular…considering radiation as a component. I also like the idea of IDO inhibitors (like Ed mentioned) and one of the trials I included addresses that.
Do you know your BRAF and NRAS status? I'm guessing you do…but that could be important for you in what you choose going forward.
It seems like your tumor growth in some ways has been indolent….meaning it hasn't gone completely crazily invasive…on the other hand…it has been mighty dang persistent despite some pretty agressive treatment!!! All this to say….sometimes folks in that situation are benefited by genetic investigation of the tumor. Sometimes, once that is done, picking the proper poison is a lot more clear and even though it is "melanoma" folks find that it can respond to rather out-of-the-box treatments like HER-2 drugs most commonly used in breast cancer and such. I don't know that you would find that to be the case with yours….but with your history….I think I'd be asking about further DNA testing.
Guess that's about all I got. Hang in there. You're tough. Sorry you have to be. But, you are. c
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- May 8, 2016 at 9:41 pm
Celeste-
i am speechless and overcome with emotion. I just saw all the posts and info. It's Mothers Day and I know you're a mother. I never expected all of this today, let alone on Mothers Day. Words can't express my appreciation. You're such an amazing person; really one of a kind. I have a lot to look at here and going to start digging into it. I'll keep you posted on next steps…enjoy Mothers Day!!!
love,
Josh
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- May 8, 2016 at 9:41 pm
Celeste-
i am speechless and overcome with emotion. I just saw all the posts and info. It's Mothers Day and I know you're a mother. I never expected all of this today, let alone on Mothers Day. Words can't express my appreciation. You're such an amazing person; really one of a kind. I have a lot to look at here and going to start digging into it. I'll keep you posted on next steps…enjoy Mothers Day!!!
love,
Josh
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- May 8, 2016 at 9:41 pm
Celeste-
i am speechless and overcome with emotion. I just saw all the posts and info. It's Mothers Day and I know you're a mother. I never expected all of this today, let alone on Mothers Day. Words can't express my appreciation. You're such an amazing person; really one of a kind. I have a lot to look at here and going to start digging into it. I'll keep you posted on next steps…enjoy Mothers Day!!!
love,
Josh
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- May 8, 2016 at 7:56 pm
Ok, Josh…
Well, S&!T!!!! On the other hand….at least the "big thing" on PET…isn't much of a monster. I tried to address your questions about TIL and CAVATAK in the posts I made. Found some other trial options you might want to ask your doc about…who seems very good, by the way!!!! I agree with Gary about combo's and in particular…considering radiation as a component. I also like the idea of IDO inhibitors (like Ed mentioned) and one of the trials I included addresses that.
Do you know your BRAF and NRAS status? I'm guessing you do…but that could be important for you in what you choose going forward.
It seems like your tumor growth in some ways has been indolent….meaning it hasn't gone completely crazily invasive…on the other hand…it has been mighty dang persistent despite some pretty agressive treatment!!! All this to say….sometimes folks in that situation are benefited by genetic investigation of the tumor. Sometimes, once that is done, picking the proper poison is a lot more clear and even though it is "melanoma" folks find that it can respond to rather out-of-the-box treatments like HER-2 drugs most commonly used in breast cancer and such. I don't know that you would find that to be the case with yours….but with your history….I think I'd be asking about further DNA testing.
Guess that's about all I got. Hang in there. You're tough. Sorry you have to be. But, you are. c
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- May 8, 2016 at 8:47 pm
Josh, here is a link to Dr. Omid Hamid at the Angeles Clinic and the trial that they offer. I have heard him talk of IMC gp 100 before, look under Melanoma trials. Ed http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTrialList/tabid/19278/Default.aspx
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- May 8, 2016 at 8:47 pm
Josh, here is a link to Dr. Omid Hamid at the Angeles Clinic and the trial that they offer. I have heard him talk of IMC gp 100 before, look under Melanoma trials. Ed http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTrialList/tabid/19278/Default.aspx
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- May 8, 2016 at 8:47 pm
Josh, here is a link to Dr. Omid Hamid at the Angeles Clinic and the trial that they offer. I have heard him talk of IMC gp 100 before, look under Melanoma trials. Ed http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTrialList/tabid/19278/Default.aspx
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- May 8, 2016 at 9:45 pm
Ed & Gary-
thank you from bottom of my heart…appreciate you taking time and responding with great advice & support. Lot of things to consider. You both have been very good to me with constant support. It's people like you and many others who make this forum such a great place.
Josh
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- May 8, 2016 at 9:45 pm
Ed & Gary-
thank you from bottom of my heart…appreciate you taking time and responding with great advice & support. Lot of things to consider. You both have been very good to me with constant support. It's people like you and many others who make this forum such a great place.
Josh
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- May 8, 2016 at 9:45 pm
Ed & Gary-
thank you from bottom of my heart…appreciate you taking time and responding with great advice & support. Lot of things to consider. You both have been very good to me with constant support. It's people like you and many others who make this forum such a great place.
Josh
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- May 9, 2016 at 1:02 am
Josh, here are two more with Dr. Omid Hamid. http://hcp.healthcasts.com/detail/profile/id/16304 https://www.youtube.com/watch?v=6QRuBkOr0cQ
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- May 9, 2016 at 1:02 am
Josh, here are two more with Dr. Omid Hamid. http://hcp.healthcasts.com/detail/profile/id/16304 https://www.youtube.com/watch?v=6QRuBkOr0cQ
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- May 9, 2016 at 1:02 am
Josh, here are two more with Dr. Omid Hamid. http://hcp.healthcasts.com/detail/profile/id/16304 https://www.youtube.com/watch?v=6QRuBkOr0cQ
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- May 9, 2016 at 1:03 am
Sorry about that!!! https://www.youtube.com/watch?v=6QRuBkOr0cQ
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- May 9, 2016 at 1:03 am
Sorry about that!!! https://www.youtube.com/watch?v=6QRuBkOr0cQ
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- May 9, 2016 at 1:03 am
Sorry about that!!! https://www.youtube.com/watch?v=6QRuBkOr0cQ
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- May 9, 2016 at 1:07 am
Josh, sorry about the links! This time I think I got it right!!! Best Wishes!! Ed https://www.youtube.com/watch?v=10nUgi5R9UE
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- May 9, 2016 at 1:07 am
Josh, sorry about the links! This time I think I got it right!!! Best Wishes!! Ed https://www.youtube.com/watch?v=10nUgi5R9UE
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- May 9, 2016 at 1:07 am
Josh, sorry about the links! This time I think I got it right!!! Best Wishes!! Ed https://www.youtube.com/watch?v=10nUgi5R9UE
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- May 10, 2016 at 1:56 am
Josh ,
I have written three replies since yesterday and each one I haven't been able to post. So frustrating!!! Keep fighting!!! Celeste, Brian and Ed have excellent knowledge on trials!!! My husband has been in your spot at least twice. Please get second opinions!! I will write more if this posts.
Maureen
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- May 10, 2016 at 1:56 am
Josh ,
I have written three replies since yesterday and each one I haven't been able to post. So frustrating!!! Keep fighting!!! Celeste, Brian and Ed have excellent knowledge on trials!!! My husband has been in your spot at least twice. Please get second opinions!! I will write more if this posts.
Maureen
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- May 10, 2016 at 1:56 am
Josh ,
I have written three replies since yesterday and each one I haven't been able to post. So frustrating!!! Keep fighting!!! Celeste, Brian and Ed have excellent knowledge on trials!!! My husband has been in your spot at least twice. Please get second opinions!! I will write more if this posts.
Maureen
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- May 10, 2016 at 2:07 am
My husband has done TIL, Ipi/Nivo, Nivo alone, DTIC in pill form and now a breast cancer drug plus during and before treatments he has had seven surgeries. We went to MSK for another opinion and they did blood work for common cancer mutations. It turns out he has an over abundance of the her-2 mutation. He.is paying out of pocket for a drug that is FDA approved for breast cancer. Hopefully his oncologist will get approved a one person study so we won't have to continue to pay an astromunical amount for his treatment. We think MSK is truly thinking outside of the box for looking at other cancer mutations not thought of for melanoma and using old chem drugs as a bridge to other treatments. I believe they do phone consults for a fee provided you send them the required information. We truly wish you the best Josh!!!
Maureen
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- May 10, 2016 at 3:19 am
Thank you Maureen!!! I'm hearing more and more of that. I should have all the testing done for mutation etc… Is it just genetic testingor a specific test I should ask for? I believe my doctor has good options but I want to be forward thinking as well….this is my life after all. I appreciate all the advice and support.
Josh
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- May 10, 2016 at 12:15 pm
Josh,
We are all in this together to beat this awful disease so thanks aren't necessary. The blood test done at MSK was for genetic profiling. The testing for mutations is very important too because it effects the drug choices you have. Also if you are interested in TIL you need a HLA blood test done too. I believe you have to be a certain type of HLA to be eligible.All of these tests take about a month at least to get results so get these done right away.
We wish you the best!
Maureen
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- May 11, 2016 at 11:09 am
Hi Maureen-
I did have test to see if I'm HLA-A2 positive and I am. I have an appt next Thursday to meet with oncologist on the trial. They did explain that it's not TIL trial. This is a genetically modified T Cell trial. I guess they use your blood vs. using the tumor for T Cells. Really twisted on which direction to go….do I try this or keep it in my back pocket and if needed go to MD Anderson as they have more to offer. These decsions are never easy.
Josh
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- May 11, 2016 at 11:09 am
Hi Maureen-
I did have test to see if I'm HLA-A2 positive and I am. I have an appt next Thursday to meet with oncologist on the trial. They did explain that it's not TIL trial. This is a genetically modified T Cell trial. I guess they use your blood vs. using the tumor for T Cells. Really twisted on which direction to go….do I try this or keep it in my back pocket and if needed go to MD Anderson as they have more to offer. These decsions are never easy.
Josh
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- May 11, 2016 at 11:09 am
Hi Maureen-
I did have test to see if I'm HLA-A2 positive and I am. I have an appt next Thursday to meet with oncologist on the trial. They did explain that it's not TIL trial. This is a genetically modified T Cell trial. I guess they use your blood vs. using the tumor for T Cells. Really twisted on which direction to go….do I try this or keep it in my back pocket and if needed go to MD Anderson as they have more to offer. These decsions are never easy.
Josh
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- May 10, 2016 at 12:15 pm
Josh,
We are all in this together to beat this awful disease so thanks aren't necessary. The blood test done at MSK was for genetic profiling. The testing for mutations is very important too because it effects the drug choices you have. Also if you are interested in TIL you need a HLA blood test done too. I believe you have to be a certain type of HLA to be eligible.All of these tests take about a month at least to get results so get these done right away.
We wish you the best!
Maureen
-
- May 10, 2016 at 12:15 pm
Josh,
We are all in this together to beat this awful disease so thanks aren't necessary. The blood test done at MSK was for genetic profiling. The testing for mutations is very important too because it effects the drug choices you have. Also if you are interested in TIL you need a HLA blood test done too. I believe you have to be a certain type of HLA to be eligible.All of these tests take about a month at least to get results so get these done right away.
We wish you the best!
Maureen
-
- May 10, 2016 at 3:19 am
Thank you Maureen!!! I'm hearing more and more of that. I should have all the testing done for mutation etc… Is it just genetic testingor a specific test I should ask for? I believe my doctor has good options but I want to be forward thinking as well….this is my life after all. I appreciate all the advice and support.
Josh
-
- May 10, 2016 at 3:19 am
Thank you Maureen!!! I'm hearing more and more of that. I should have all the testing done for mutation etc… Is it just genetic testingor a specific test I should ask for? I believe my doctor has good options but I want to be forward thinking as well….this is my life after all. I appreciate all the advice and support.
Josh
-
- May 10, 2016 at 2:07 am
My husband has done TIL, Ipi/Nivo, Nivo alone, DTIC in pill form and now a breast cancer drug plus during and before treatments he has had seven surgeries. We went to MSK for another opinion and they did blood work for common cancer mutations. It turns out he has an over abundance of the her-2 mutation. He.is paying out of pocket for a drug that is FDA approved for breast cancer. Hopefully his oncologist will get approved a one person study so we won't have to continue to pay an astromunical amount for his treatment. We think MSK is truly thinking outside of the box for looking at other cancer mutations not thought of for melanoma and using old chem drugs as a bridge to other treatments. I believe they do phone consults for a fee provided you send them the required information. We truly wish you the best Josh!!!
Maureen
-
- May 10, 2016 at 2:07 am
My husband has done TIL, Ipi/Nivo, Nivo alone, DTIC in pill form and now a breast cancer drug plus during and before treatments he has had seven surgeries. We went to MSK for another opinion and they did blood work for common cancer mutations. It turns out he has an over abundance of the her-2 mutation. He.is paying out of pocket for a drug that is FDA approved for breast cancer. Hopefully his oncologist will get approved a one person study so we won't have to continue to pay an astromunical amount for his treatment. We think MSK is truly thinking outside of the box for looking at other cancer mutations not thought of for melanoma and using old chem drugs as a bridge to other treatments. I believe they do phone consults for a fee provided you send them the required information. We truly wish you the best Josh!!!
Maureen
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- May 18, 2016 at 3:18 am
On the same topic, I do not appear to be responding to Opdivo and the onclologist is suggesting IL-2 direct injection into a large tumor. As she has no real experience with Interleukin 2 with a patient on Opdivo, I would greatly appreciate hearing from anyone who has done this.
Thank you
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- May 18, 2016 at 3:18 am
On the same topic, I do not appear to be responding to Opdivo and the onclologist is suggesting IL-2 direct injection into a large tumor. As she has no real experience with Interleukin 2 with a patient on Opdivo, I would greatly appreciate hearing from anyone who has done this.
Thank you
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- May 18, 2016 at 3:18 am
On the same topic, I do not appear to be responding to Opdivo and the onclologist is suggesting IL-2 direct injection into a large tumor. As she has no real experience with Interleukin 2 with a patient on Opdivo, I would greatly appreciate hearing from anyone who has done this.
Thank you
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