› Forums › General Melanoma Community › Response time for Temodar?
- This topic has 33 replies, 4 voices, and was last updated 12 years, 5 months ago by
MariaH.
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- November 17, 2011 at 11:40 am
So, Dave had his first checkup yesterday while on the Temodar. No scans until 12/22, just a physical with bloodwork. He's feeling OK, a little fatigue, but otherwise well. He pointed out a lump he had found on Tuesday night (which he "forgot" to tell me about). This is near his right pectoral muscle, where the bulk of his stage IV disease is. I am worried that this may be the deep lymph node they found on the PET that had an SUV of 22. If it is, that means that it has increased in size to the point of being palpable. I know with other
So, Dave had his first checkup yesterday while on the Temodar. No scans until 12/22, just a physical with bloodwork. He's feeling OK, a little fatigue, but otherwise well. He pointed out a lump he had found on Tuesday night (which he "forgot" to tell me about). This is near his right pectoral muscle, where the bulk of his stage IV disease is. I am worried that this may be the deep lymph node they found on the PET that had an SUV of 22. If it is, that means that it has increased in size to the point of being palpable. I know with other treatments, mets can swell before they start to shrink. Is this true for Temodar too? He's only been on the Temodar for 2 weeks.
I'll be honest, to actually feel it was frightening. I'd like to think that I've stayed positive so far, but this shook me up. Any thoughts?
Maria
- Replies
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- November 17, 2011 at 12:36 pm
Maria, I don't have any specific info on Temodar. However, chemo generally takes 2-3
cycles of treatment before a response can be expected (see:
http://www.chemocare.com/whatis/how_can_we_tell_if_the_chemotherapy.asp). Therefore, the
scans that are scheduled for 22nd December seem to line up with this timeframe.Take care
Frank from Australia
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- November 17, 2011 at 12:36 pm
Maria, I don't have any specific info on Temodar. However, chemo generally takes 2-3
cycles of treatment before a response can be expected (see:
http://www.chemocare.com/whatis/how_can_we_tell_if_the_chemotherapy.asp). Therefore, the
scans that are scheduled for 22nd December seem to line up with this timeframe.Take care
Frank from Australia
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- November 17, 2011 at 12:36 pm
Maria, I don't have any specific info on Temodar. However, chemo generally takes 2-3
cycles of treatment before a response can be expected (see:
http://www.chemocare.com/whatis/how_can_we_tell_if_the_chemotherapy.asp). Therefore, the
scans that are scheduled for 22nd December seem to line up with this timeframe.Take care
Frank from Australia
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- November 17, 2011 at 12:36 pm
I was on Temodar but only for 5 days every 28 days. The oncologist said it probably wouldn't shrink it, but just keep it from spreading. Not sure what you were told. Mine didn't start growing on Temodar until 5 -6 months. Its a very temporary drug because Melanoma usually finds away around it.- Lynn
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- November 17, 2011 at 12:36 pm
I was on Temodar but only for 5 days every 28 days. The oncologist said it probably wouldn't shrink it, but just keep it from spreading. Not sure what you were told. Mine didn't start growing on Temodar until 5 -6 months. Its a very temporary drug because Melanoma usually finds away around it.- Lynn
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- November 17, 2011 at 12:36 pm
I was on Temodar but only for 5 days every 28 days. The oncologist said it probably wouldn't shrink it, but just keep it from spreading. Not sure what you were told. Mine didn't start growing on Temodar until 5 -6 months. Its a very temporary drug because Melanoma usually finds away around it.- Lynn
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- November 17, 2011 at 12:38 pm
I was on Temodar but only for 5 days every 28 days. The oncologist said it probably wouldn't shrink it, but just keep it from spreading. Not sure what you were told. Mine didn't start growing on Temodar until 5 -6 months. Its a very temporary drug because Melanoma usually finds away around it.- Lynn
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- November 17, 2011 at 12:38 pm
I was on Temodar but only for 5 days every 28 days. The oncologist said it probably wouldn't shrink it, but just keep it from spreading. Not sure what you were told. Mine didn't start growing on Temodar until 5 -6 months. Its a very temporary drug because Melanoma usually finds away around it.- Lynn
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- November 17, 2011 at 12:38 pm
I was on Temodar but only for 5 days every 28 days. The oncologist said it probably wouldn't shrink it, but just keep it from spreading. Not sure what you were told. Mine didn't start growing on Temodar until 5 -6 months. Its a very temporary drug because Melanoma usually finds away around it.- Lynn
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- November 18, 2011 at 11:39 am
Hi Lynn,
We were told that studies showed Temodar worked well after IL-2, and that the response was seen after the first round of treatment. We also know, like you, that it's temporary, and we were hoping to just shrink them enough to get him started on Yervoy or a clinical trial once he is weaned off the steroids.
The scary part was actually feeling the tumor. Because he really is feeling well, this is the first outward sign that he has any disease at all.
I'm hoping, that like Yervoy, maybe it will swell then shrink. We really want to try to get him into the clinical trial at Memorial Sloan with IPI and the anti-pd1.
Ugh. I wish they could just cut it out.
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- November 18, 2011 at 11:39 am
Hi Lynn,
We were told that studies showed Temodar worked well after IL-2, and that the response was seen after the first round of treatment. We also know, like you, that it's temporary, and we were hoping to just shrink them enough to get him started on Yervoy or a clinical trial once he is weaned off the steroids.
The scary part was actually feeling the tumor. Because he really is feeling well, this is the first outward sign that he has any disease at all.
I'm hoping, that like Yervoy, maybe it will swell then shrink. We really want to try to get him into the clinical trial at Memorial Sloan with IPI and the anti-pd1.
Ugh. I wish they could just cut it out.
-
- November 18, 2011 at 11:39 am
Hi Lynn,
We were told that studies showed Temodar worked well after IL-2, and that the response was seen after the first round of treatment. We also know, like you, that it's temporary, and we were hoping to just shrink them enough to get him started on Yervoy or a clinical trial once he is weaned off the steroids.
The scary part was actually feeling the tumor. Because he really is feeling well, this is the first outward sign that he has any disease at all.
I'm hoping, that like Yervoy, maybe it will swell then shrink. We really want to try to get him into the clinical trial at Memorial Sloan with IPI and the anti-pd1.
Ugh. I wish they could just cut it out.
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- November 19, 2011 at 1:36 am
MIne was in the media steinem and they said it was too dangerous to do surgery, but about 9 months later they agreed to it. Why can't he have surgery? I had Dr Kaur ( I think that's how you spell the name) and My Surgeon was Dr Shen at Mayo. I think most people with melanoma don't look like they "have cancer". I think because everyone who used to do treatment had the hard core chemo that caused them to lose their hair, their fingernails, their weight and look like walking dead people. When I was at my worse even a nurse told me you would never know and the scan guy at the NIH told me he would have never known I had cancer.
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- November 19, 2011 at 1:41 am
PS you have to keep telling them you want surgery and be persistent.It's his life and he shold be the one to decide what he wants to do. They told me it wouldn't help…wellobviously debilking did something because I became NED that day and have stayed that way and March 26 will be 2 years.Thats a whole lot better then their prognosis of 6- 9 months back in 09. I am not saying surgery alone was what brought me this far, but by removing it and then getting immunotherapy it made the job easier….
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- November 19, 2011 at 1:45 am
PS PS The radiation shold shrink it by 1/3 at least…the Temodar given with radiation is thought to make Melanoma more receptiove to radiation. My Radiation Onc said he has even seen it turn to "dust" and vanish….although mine didn't It did shrink by over 1/3 initially.
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- November 21, 2011 at 11:52 am
Thanks for your replies Lynn. I'm really thinking that Dave is not happy with his oncologist anymore, and Dave may want to switch. We heard from both our onc and NIH that the nodes are too bulky to be removed, although NIH told him they could if they HAD to. Talk about confusing…
We will wait and see how the December scans look, then go from there.
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- November 21, 2011 at 11:52 am
Thanks for your replies Lynn. I'm really thinking that Dave is not happy with his oncologist anymore, and Dave may want to switch. We heard from both our onc and NIH that the nodes are too bulky to be removed, although NIH told him they could if they HAD to. Talk about confusing…
We will wait and see how the December scans look, then go from there.
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- November 21, 2011 at 11:52 am
Thanks for your replies Lynn. I'm really thinking that Dave is not happy with his oncologist anymore, and Dave may want to switch. We heard from both our onc and NIH that the nodes are too bulky to be removed, although NIH told him they could if they HAD to. Talk about confusing…
We will wait and see how the December scans look, then go from there.
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- November 19, 2011 at 1:45 am
PS PS The radiation shold shrink it by 1/3 at least…the Temodar given with radiation is thought to make Melanoma more receptiove to radiation. My Radiation Onc said he has even seen it turn to "dust" and vanish….although mine didn't It did shrink by over 1/3 initially.
-
- November 19, 2011 at 1:45 am
PS PS The radiation shold shrink it by 1/3 at least…the Temodar given with radiation is thought to make Melanoma more receptiove to radiation. My Radiation Onc said he has even seen it turn to "dust" and vanish….although mine didn't It did shrink by over 1/3 initially.
-
- November 19, 2011 at 1:41 am
PS you have to keep telling them you want surgery and be persistent.It's his life and he shold be the one to decide what he wants to do. They told me it wouldn't help…wellobviously debilking did something because I became NED that day and have stayed that way and March 26 will be 2 years.Thats a whole lot better then their prognosis of 6- 9 months back in 09. I am not saying surgery alone was what brought me this far, but by removing it and then getting immunotherapy it made the job easier….
-
- November 19, 2011 at 1:41 am
PS you have to keep telling them you want surgery and be persistent.It's his life and he shold be the one to decide what he wants to do. They told me it wouldn't help…wellobviously debilking did something because I became NED that day and have stayed that way and March 26 will be 2 years.Thats a whole lot better then their prognosis of 6- 9 months back in 09. I am not saying surgery alone was what brought me this far, but by removing it and then getting immunotherapy it made the job easier….
-
- November 19, 2011 at 1:36 am
MIne was in the media steinem and they said it was too dangerous to do surgery, but about 9 months later they agreed to it. Why can't he have surgery? I had Dr Kaur ( I think that's how you spell the name) and My Surgeon was Dr Shen at Mayo. I think most people with melanoma don't look like they "have cancer". I think because everyone who used to do treatment had the hard core chemo that caused them to lose their hair, their fingernails, their weight and look like walking dead people. When I was at my worse even a nurse told me you would never know and the scan guy at the NIH told me he would have never known I had cancer.
-
- November 19, 2011 at 1:36 am
MIne was in the media steinem and they said it was too dangerous to do surgery, but about 9 months later they agreed to it. Why can't he have surgery? I had Dr Kaur ( I think that's how you spell the name) and My Surgeon was Dr Shen at Mayo. I think most people with melanoma don't look like they "have cancer". I think because everyone who used to do treatment had the hard core chemo that caused them to lose their hair, their fingernails, their weight and look like walking dead people. When I was at my worse even a nurse told me you would never know and the scan guy at the NIH told me he would have never known I had cancer.
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- November 19, 2011 at 4:11 am
Maria, I did Temodar in 2007 and have been NED for four years now. I was scanned every 3 months and I showed more shrinkage on each scan. I had no major side effects. I did 10 rounds over 11 months. If my blood counts were too low, we waited a few more weeks before starting the next cycle. Sometimes, patients do have a full and durable response to this drug even if the stats don't sound too promising. Best of luck to Dave and feel free to e-mail me, Maria if you have any questions.
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- November 19, 2011 at 4:11 am
Maria, I did Temodar in 2007 and have been NED for four years now. I was scanned every 3 months and I showed more shrinkage on each scan. I had no major side effects. I did 10 rounds over 11 months. If my blood counts were too low, we waited a few more weeks before starting the next cycle. Sometimes, patients do have a full and durable response to this drug even if the stats don't sound too promising. Best of luck to Dave and feel free to e-mail me, Maria if you have any questions.
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- November 19, 2011 at 4:11 am
Maria, I did Temodar in 2007 and have been NED for four years now. I was scanned every 3 months and I showed more shrinkage on each scan. I had no major side effects. I did 10 rounds over 11 months. If my blood counts were too low, we waited a few more weeks before starting the next cycle. Sometimes, patients do have a full and durable response to this drug even if the stats don't sound too promising. Best of luck to Dave and feel free to e-mail me, Maria if you have any questions.
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- November 21, 2011 at 11:55 am
Thank you so much for posting Nancy. It is so good to hear about success stories like yours. Given the fact that at the time he started Temodar, Yervoy was not an option, we felt as though this was his only hope. It's nice to know that people out there have had success with it.
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- November 21, 2011 at 11:55 am
Thank you so much for posting Nancy. It is so good to hear about success stories like yours. Given the fact that at the time he started Temodar, Yervoy was not an option, we felt as though this was his only hope. It's nice to know that people out there have had success with it.
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- November 21, 2011 at 11:55 am
Thank you so much for posting Nancy. It is so good to hear about success stories like yours. Given the fact that at the time he started Temodar, Yervoy was not an option, we felt as though this was his only hope. It's nice to know that people out there have had success with it.
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