› Forums › General Melanoma Community › My good news….
- This topic has 63 replies, 12 voices, and was last updated 13 years, 4 months ago by
TSchulz.
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- July 30, 2012 at 9:43 pm
I am a little superstitious about sharing good news but since I look to this board for inspiration as much as information I have to share the news I received last week.
In May, I completed treatment at NIH on the randomized trial of TIL cells followed by IL2 with standard lymphodepletion OR TIL cells/IL2 with standard lymphodepletion plus total body irradiation. I randomized to the arm of the trial that did not include TBI. As many of you know, the treatment was very difficult but the NIH team was amazing and got me through it.
I am a little superstitious about sharing good news but since I look to this board for inspiration as much as information I have to share the news I received last week.
In May, I completed treatment at NIH on the randomized trial of TIL cells followed by IL2 with standard lymphodepletion OR TIL cells/IL2 with standard lymphodepletion plus total body irradiation. I randomized to the arm of the trial that did not include TBI. As many of you know, the treatment was very difficult but the NIH team was amazing and got me through it.
I returned in June for my one month follow-up scans and received the news that my tumors had decreased in size an estimated 54.2%. Huge news! Then last week, at 2 months, scans showed they are approx. 70% smaller than before treatment and no new tumors were reported – equally important at this stage. After receiving a big hug from my research coordinator she said that there was a lot of good news shared in clinic that day.
I know my story does not end here but we are hopeful to see this trend continue. This is the first good news (concerning melanoma) we've had in over a year so we are celebrating and looking forward to a brighter summer!
I wish all the best to everyone dealing with this disease – we need to see a bunch more NED in 2012.
Troy
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- July 30, 2012 at 10:55 pm
Troy, Fantastic news, we are so happy for your great results. My husband did TIL at MDAnderson in May, and we get our second set of scans this week, hope the trend continues! Keep up the good work and we hope and pray your T cells continue to battle on for a long, long time! Enjoy your summer, you earned a well deserved break from treatment! God bless, Valerie (Phil’s wife) -
- July 30, 2012 at 10:55 pm
Troy, Fantastic news, we are so happy for your great results. My husband did TIL at MDAnderson in May, and we get our second set of scans this week, hope the trend continues! Keep up the good work and we hope and pray your T cells continue to battle on for a long, long time! Enjoy your summer, you earned a well deserved break from treatment! God bless, Valerie (Phil’s wife) -
- July 30, 2012 at 10:55 pm
Troy, Fantastic news, we are so happy for your great results. My husband did TIL at MDAnderson in May, and we get our second set of scans this week, hope the trend continues! Keep up the good work and we hope and pray your T cells continue to battle on for a long, long time! Enjoy your summer, you earned a well deserved break from treatment! God bless, Valerie (Phil’s wife) -
- July 30, 2012 at 11:14 pm
Congratulations! And thank you for the inspiration. I am, right now, on the same treatment and on my second bag of IL-2. It’s quite rough, I know now from experience! But hopefully all worth it. Well done.Ben.
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- July 31, 2012 at 4:23 pm
Ben,
Hard to tell but you should be about 5-6 doses of IL-2 in. I'm guessing you are feeling pretty crummy. Keep it up, it doesn't last that long and you'll be feeling better soon. I made it through 7 doses before agreeing to stop. They told me there is little to no correlation between the number of IL-2 doses and the type of response people have. Good luck with the rest of the treatment. Just a word of warning – 1-2 days after stopping the IL-2 I started having daily fevers that would last for 6-10 hours and would just take everything out of me. These too will pass, I wasn't really expecting them and was surprised at how bad they made me feel. Once we were sure they weren't related to infection, the team was happy the fevers were happening…. they suspected the cells were happily finding tumor cells and having a party.
Good Luck, Troy
ps. where are you receiving treatment?
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- July 31, 2012 at 4:23 pm
Ben,
Hard to tell but you should be about 5-6 doses of IL-2 in. I'm guessing you are feeling pretty crummy. Keep it up, it doesn't last that long and you'll be feeling better soon. I made it through 7 doses before agreeing to stop. They told me there is little to no correlation between the number of IL-2 doses and the type of response people have. Good luck with the rest of the treatment. Just a word of warning – 1-2 days after stopping the IL-2 I started having daily fevers that would last for 6-10 hours and would just take everything out of me. These too will pass, I wasn't really expecting them and was surprised at how bad they made me feel. Once we were sure they weren't related to infection, the team was happy the fevers were happening…. they suspected the cells were happily finding tumor cells and having a party.
Good Luck, Troy
ps. where are you receiving treatment?
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- July 31, 2012 at 4:23 pm
Ben,
Hard to tell but you should be about 5-6 doses of IL-2 in. I'm guessing you are feeling pretty crummy. Keep it up, it doesn't last that long and you'll be feeling better soon. I made it through 7 doses before agreeing to stop. They told me there is little to no correlation between the number of IL-2 doses and the type of response people have. Good luck with the rest of the treatment. Just a word of warning – 1-2 days after stopping the IL-2 I started having daily fevers that would last for 6-10 hours and would just take everything out of me. These too will pass, I wasn't really expecting them and was surprised at how bad they made me feel. Once we were sure they weren't related to infection, the team was happy the fevers were happening…. they suspected the cells were happily finding tumor cells and having a party.
Good Luck, Troy
ps. where are you receiving treatment?
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- August 1, 2012 at 10:35 am
Hi Troy,
Yes, I am definitely feeling pretty lousy. I've had four bags of IL-2 so far, though my remperatue is running persistantly very high, delaying each dose. Thanks for the advice, I know it's only temporary.
I am having the treatment done in Manchester, UK actually. They're running small pilot study here and some other centres in Europe.
Here's to good respnses!
Ben.
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- August 1, 2012 at 10:35 am
Hi Troy,
Yes, I am definitely feeling pretty lousy. I've had four bags of IL-2 so far, though my remperatue is running persistantly very high, delaying each dose. Thanks for the advice, I know it's only temporary.
I am having the treatment done in Manchester, UK actually. They're running small pilot study here and some other centres in Europe.
Here's to good respnses!
Ben.
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- August 2, 2012 at 4:53 pm
Ben,
I hope, by now, you are feeling better. I remember it wasn't until I started to feel a bit better that I realized just how entirely weakened I was. As the appetite comes back so does the strength!
Just wanted to let you know I'm pulling for you and wishing a quick recovery from this and success in the treatment.
Best, Troy
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- August 2, 2012 at 4:53 pm
Ben,
I hope, by now, you are feeling better. I remember it wasn't until I started to feel a bit better that I realized just how entirely weakened I was. As the appetite comes back so does the strength!
Just wanted to let you know I'm pulling for you and wishing a quick recovery from this and success in the treatment.
Best, Troy
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- August 2, 2012 at 4:53 pm
Ben,
I hope, by now, you are feeling better. I remember it wasn't until I started to feel a bit better that I realized just how entirely weakened I was. As the appetite comes back so does the strength!
Just wanted to let you know I'm pulling for you and wishing a quick recovery from this and success in the treatment.
Best, Troy
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- August 1, 2012 at 10:35 am
Hi Troy,
Yes, I am definitely feeling pretty lousy. I've had four bags of IL-2 so far, though my remperatue is running persistantly very high, delaying each dose. Thanks for the advice, I know it's only temporary.
I am having the treatment done in Manchester, UK actually. They're running small pilot study here and some other centres in Europe.
Here's to good respnses!
Ben.
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- August 3, 2012 at 12:02 am
Truthfully, I don't remember why we stopped – I was pretty out of it. I think my liver function studies were becoming a concern. My kidneys weren't working great but I don't think they were too worried. My hazy recollection is that the team felt comfortable with the number of doses I had received and didn't want to push me into having a potentially damaging complication. I was at NIH, the place with the most experience with this, by far, so I trusted the doctors when they said not to push through. I am one who, in this type of stuff, thinks more must be better but they definitely didn't agree with that thinking.
I Hope this helps and remember – you will feel better soon and this will be worth it. They wouldn't have chosen you for this treatment unless they thought you are a good candidate and can handle it.
PS – feel free to email outside of this site and I'll be happy to reply a little faster. schulz1231@yahoo.com
Troy
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- August 3, 2012 at 12:02 am
Truthfully, I don't remember why we stopped – I was pretty out of it. I think my liver function studies were becoming a concern. My kidneys weren't working great but I don't think they were too worried. My hazy recollection is that the team felt comfortable with the number of doses I had received and didn't want to push me into having a potentially damaging complication. I was at NIH, the place with the most experience with this, by far, so I trusted the doctors when they said not to push through. I am one who, in this type of stuff, thinks more must be better but they definitely didn't agree with that thinking.
I Hope this helps and remember – you will feel better soon and this will be worth it. They wouldn't have chosen you for this treatment unless they thought you are a good candidate and can handle it.
PS – feel free to email outside of this site and I'll be happy to reply a little faster. schulz1231@yahoo.com
Troy
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- August 3, 2012 at 12:02 am
Truthfully, I don't remember why we stopped – I was pretty out of it. I think my liver function studies were becoming a concern. My kidneys weren't working great but I don't think they were too worried. My hazy recollection is that the team felt comfortable with the number of doses I had received and didn't want to push me into having a potentially damaging complication. I was at NIH, the place with the most experience with this, by far, so I trusted the doctors when they said not to push through. I am one who, in this type of stuff, thinks more must be better but they definitely didn't agree with that thinking.
I Hope this helps and remember – you will feel better soon and this will be worth it. They wouldn't have chosen you for this treatment unless they thought you are a good candidate and can handle it.
PS – feel free to email outside of this site and I'll be happy to reply a little faster. schulz1231@yahoo.com
Troy
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- July 31, 2012 at 12:01 am
Great and happy news .May it only get better as you contiue to the 3 letters we all yearn NED.In my prayers till then. Beat the Beast. Al
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- July 31, 2012 at 12:01 am
Great and happy news .May it only get better as you contiue to the 3 letters we all yearn NED.In my prayers till then. Beat the Beast. Al
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- July 31, 2012 at 12:01 am
Great and happy news .May it only get better as you contiue to the 3 letters we all yearn NED.In my prayers till then. Beat the Beast. Al
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- July 31, 2012 at 1:45 am
Troy, that is sooo awesome!! I've been wondering what your follow up scans were showing. Congratulations! I'm so happy for you!!
I've had stable scans for three months since my IL-12 TIL. I'm hoping next month might show some shrinkage for me. Responses on the IL-12 TIL seem to be a little slower than the standard TIL.
Please keep the updates coming!
~Angela
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- July 31, 2012 at 1:45 am
Troy, that is sooo awesome!! I've been wondering what your follow up scans were showing. Congratulations! I'm so happy for you!!
I've had stable scans for three months since my IL-12 TIL. I'm hoping next month might show some shrinkage for me. Responses on the IL-12 TIL seem to be a little slower than the standard TIL.
Please keep the updates coming!
~Angela
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- July 31, 2012 at 4:11 pm
Angela,
Great to hear from you. Stable is good. I was expecting stable at one month and would have been happy with it. Good luck with the coming scans. When do you go back? I'm scheduled for return on 9/24-25, maybe our paths will cross… All the best, Troy
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- July 31, 2012 at 4:11 pm
Angela,
Great to hear from you. Stable is good. I was expecting stable at one month and would have been happy with it. Good luck with the coming scans. When do you go back? I'm scheduled for return on 9/24-25, maybe our paths will cross… All the best, Troy
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- July 31, 2012 at 4:11 pm
Angela,
Great to hear from you. Stable is good. I was expecting stable at one month and would have been happy with it. Good luck with the coming scans. When do you go back? I'm scheduled for return on 9/24-25, maybe our paths will cross… All the best, Troy
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- July 31, 2012 at 1:45 am
Troy, that is sooo awesome!! I've been wondering what your follow up scans were showing. Congratulations! I'm so happy for you!!
I've had stable scans for three months since my IL-12 TIL. I'm hoping next month might show some shrinkage for me. Responses on the IL-12 TIL seem to be a little slower than the standard TIL.
Please keep the updates coming!
~Angela
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- August 3, 2012 at 3:49 am
Troy, this is awesome news and I am so glad you posted …. and wishing you continued success in your future tests and winning your battle with melanoma. Troy, you have such a great attitude and your optimism is real and gives such hope to the rest of us. This melanoma business is so difficult as there are so many angles and we all seem to be coming from a large variety of melanoma stages, types and treatments…..so you're postings are very important to all of us and give us hope in so many different ways.
This is the treatment that I too am being presented with and we are in the watchful waiting stage. So far and I am so lucky, tumors have been in accessible places and are easily removed. Over the past 2 yrs, I've had 15 tumors removed but only when they are to big for comfort. There always seems to be other subcutaneous tumors brewing and they are watched and removed as needed. In the meanwhile, we are waiting for this treatment to be fine tuned and will probably follow this path when the time comes. My oncologist is currently working to bring this protocol to SCCA and feels there is time for me to wait until SCCA develops this treatment and I can be treated there. I remain hopeful and more confident than ever, hearing your good news! Thanks for posting!
Best wishes,
Swanee
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- August 3, 2012 at 3:49 am
Troy, this is awesome news and I am so glad you posted …. and wishing you continued success in your future tests and winning your battle with melanoma. Troy, you have such a great attitude and your optimism is real and gives such hope to the rest of us. This melanoma business is so difficult as there are so many angles and we all seem to be coming from a large variety of melanoma stages, types and treatments…..so you're postings are very important to all of us and give us hope in so many different ways.
This is the treatment that I too am being presented with and we are in the watchful waiting stage. So far and I am so lucky, tumors have been in accessible places and are easily removed. Over the past 2 yrs, I've had 15 tumors removed but only when they are to big for comfort. There always seems to be other subcutaneous tumors brewing and they are watched and removed as needed. In the meanwhile, we are waiting for this treatment to be fine tuned and will probably follow this path when the time comes. My oncologist is currently working to bring this protocol to SCCA and feels there is time for me to wait until SCCA develops this treatment and I can be treated there. I remain hopeful and more confident than ever, hearing your good news! Thanks for posting!
Best wishes,
Swanee
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- August 3, 2012 at 3:49 am
Troy, this is awesome news and I am so glad you posted …. and wishing you continued success in your future tests and winning your battle with melanoma. Troy, you have such a great attitude and your optimism is real and gives such hope to the rest of us. This melanoma business is so difficult as there are so many angles and we all seem to be coming from a large variety of melanoma stages, types and treatments…..so you're postings are very important to all of us and give us hope in so many different ways.
This is the treatment that I too am being presented with and we are in the watchful waiting stage. So far and I am so lucky, tumors have been in accessible places and are easily removed. Over the past 2 yrs, I've had 15 tumors removed but only when they are to big for comfort. There always seems to be other subcutaneous tumors brewing and they are watched and removed as needed. In the meanwhile, we are waiting for this treatment to be fine tuned and will probably follow this path when the time comes. My oncologist is currently working to bring this protocol to SCCA and feels there is time for me to wait until SCCA develops this treatment and I can be treated there. I remain hopeful and more confident than ever, hearing your good news! Thanks for posting!
Best wishes,
Swanee
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- August 3, 2012 at 5:12 pm
Swanee,
Thank you for your very kind words. I hope everything continues to be managable for you. I know Dr. Margolin will keep an eye on you. One thing you might want to explore (I don't know many details about the trial) is a new trial that NIH is just starting. Basically, it combines giving vemurafenib for a few weeks before doing the TIL protocol. I know they are pretty excited about it but it has just started. When they talked to me about possibly going on it, I would have been the first patient. I, however, didn't qualify because in order to do it you have to have at least 1 SC nodule that is measurable. Both of my SC's were harvested for my TIL…. Again, I don't know the details of the study and of course you must be BRAF +.
Good luck and all the best,
Troy
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- August 3, 2012 at 5:12 pm
Swanee,
Thank you for your very kind words. I hope everything continues to be managable for you. I know Dr. Margolin will keep an eye on you. One thing you might want to explore (I don't know many details about the trial) is a new trial that NIH is just starting. Basically, it combines giving vemurafenib for a few weeks before doing the TIL protocol. I know they are pretty excited about it but it has just started. When they talked to me about possibly going on it, I would have been the first patient. I, however, didn't qualify because in order to do it you have to have at least 1 SC nodule that is measurable. Both of my SC's were harvested for my TIL…. Again, I don't know the details of the study and of course you must be BRAF +.
Good luck and all the best,
Troy
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- August 3, 2012 at 5:12 pm
Swanee,
Thank you for your very kind words. I hope everything continues to be managable for you. I know Dr. Margolin will keep an eye on you. One thing you might want to explore (I don't know many details about the trial) is a new trial that NIH is just starting. Basically, it combines giving vemurafenib for a few weeks before doing the TIL protocol. I know they are pretty excited about it but it has just started. When they talked to me about possibly going on it, I would have been the first patient. I, however, didn't qualify because in order to do it you have to have at least 1 SC nodule that is measurable. Both of my SC's were harvested for my TIL…. Again, I don't know the details of the study and of course you must be BRAF +.
Good luck and all the best,
Troy
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