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- This topic has 33 replies, 7 voices, and was last updated 13 years, 5 months ago by
MichaelFL.
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- December 15, 2011 at 1:28 pm
Went to see my onogolist yesterday, still having issues with the recomendation of doing interferon alfa. At the present time i am in remission according to the Doctor, there is no signs of cancer, so I having issues with doing something like interferon and the side effects. So I amwaiting for the Dr. office to call me for my appointment with UAB (University of Birmingham). This is just been a very hard decision. Any suggestions from anyone would be appreciated at this time. Thank You
Went to see my onogolist yesterday, still having issues with the recomendation of doing interferon alfa. At the present time i am in remission according to the Doctor, there is no signs of cancer, so I having issues with doing something like interferon and the side effects. So I amwaiting for the Dr. office to call me for my appointment with UAB (University of Birmingham). This is just been a very hard decision. Any suggestions from anyone would be appreciated at this time. Thank You
- Replies
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- December 15, 2011 at 1:40 pm
I just read your profile. It does look like your surgeon did make sure that he could make sure of what he was able to find the nodes.
The only other choice that you had listed: watch and wait, interfuron, or a trial is the other possibility of radiation. Radiation has shown that it helps some when there are nodes in the area. Interfuron's standard is 56 days after surgery. I believe it to be passed then but your Dr might push it if you wanted. The only trial is most likely to be in your area is Yervoy vs Interfuron. Because of that you would also not make the 56 day characteristic.
There is discussion with Antipd1 at Moffitt if you are NED and has HLA blood factor. I might have that wrong and you must be stage IV but NED.
Wishing you the best. We happen to be going to Alabama this weekend for my son's graduation at UAB.
Linda
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- December 15, 2011 at 2:57 pm
Thank you for replying. When I ask the Dr concerning radatin treatment back on Oct 25th, he said no radation treatment. His three recommendations was interferon, clinicla trail or do nothing and let him follow me and send me for PET/CT cans every 3 to 4 months. One of the mail reason I am being sent for a second opinion to UAB is because for some unknown reason there is not alot of research done in this area of the state where I live.
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- December 15, 2011 at 2:57 pm
Thank you for replying. When I ask the Dr concerning radatin treatment back on Oct 25th, he said no radation treatment. His three recommendations was interferon, clinicla trail or do nothing and let him follow me and send me for PET/CT cans every 3 to 4 months. One of the mail reason I am being sent for a second opinion to UAB is because for some unknown reason there is not alot of research done in this area of the state where I live.
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- December 15, 2011 at 3:02 pm
Those were the same choices I was given. But my surgical oncologist just wanted us to meet with him anyway. I'm hoping we're on the right track with observation. I'm also changing my diet. There are a few books out about there about diet. I'm reading the China Study right now. Also, this link from Brian the other night was extremely helpful as well.
http://www3.mdanderson.org/streams/FullVideoPlayer.cfm?xml=publicEd/config/Anti-Cancer_cfg
Worth taking a look at. My sister is an acupunturist so I'm going to do some holistic things as well.
Kelly
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- December 15, 2011 at 3:02 pm
Those were the same choices I was given. But my surgical oncologist just wanted us to meet with him anyway. I'm hoping we're on the right track with observation. I'm also changing my diet. There are a few books out about there about diet. I'm reading the China Study right now. Also, this link from Brian the other night was extremely helpful as well.
http://www3.mdanderson.org/streams/FullVideoPlayer.cfm?xml=publicEd/config/Anti-Cancer_cfg
Worth taking a look at. My sister is an acupunturist so I'm going to do some holistic things as well.
Kelly
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- December 15, 2011 at 3:02 pm
Those were the same choices I was given. But my surgical oncologist just wanted us to meet with him anyway. I'm hoping we're on the right track with observation. I'm also changing my diet. There are a few books out about there about diet. I'm reading the China Study right now. Also, this link from Brian the other night was extremely helpful as well.
http://www3.mdanderson.org/streams/FullVideoPlayer.cfm?xml=publicEd/config/Anti-Cancer_cfg
Worth taking a look at. My sister is an acupunturist so I'm going to do some holistic things as well.
Kelly
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- December 15, 2011 at 2:57 pm
Thank you for replying. When I ask the Dr concerning radatin treatment back on Oct 25th, he said no radation treatment. His three recommendations was interferon, clinicla trail or do nothing and let him follow me and send me for PET/CT cans every 3 to 4 months. One of the mail reason I am being sent for a second opinion to UAB is because for some unknown reason there is not alot of research done in this area of the state where I live.
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- December 15, 2011 at 4:15 pm
I do know that there is a melanoma specialist at UAB, wish I remember his name. About 2 years ago we considered moving to the area since our son lives there. My mel specialist had given us his name at the time. I doubt that they have many choices trail wise but then at that stage there aren't many issues anyway.
If you are further north, Nashville at the Sarah Cannon Cancer center has many choices. Again, I doubt that there will be many choices when stage 3 that are NED.
Linda
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- December 15, 2011 at 4:15 pm
I do know that there is a melanoma specialist at UAB, wish I remember his name. About 2 years ago we considered moving to the area since our son lives there. My mel specialist had given us his name at the time. I doubt that they have many choices trail wise but then at that stage there aren't many issues anyway.
If you are further north, Nashville at the Sarah Cannon Cancer center has many choices. Again, I doubt that there will be many choices when stage 3 that are NED.
Linda
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- December 15, 2011 at 4:15 pm
I do know that there is a melanoma specialist at UAB, wish I remember his name. About 2 years ago we considered moving to the area since our son lives there. My mel specialist had given us his name at the time. I doubt that they have many choices trail wise but then at that stage there aren't many issues anyway.
If you are further north, Nashville at the Sarah Cannon Cancer center has many choices. Again, I doubt that there will be many choices when stage 3 that are NED.
Linda
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- December 15, 2011 at 1:40 pm
I just read your profile. It does look like your surgeon did make sure that he could make sure of what he was able to find the nodes.
The only other choice that you had listed: watch and wait, interfuron, or a trial is the other possibility of radiation. Radiation has shown that it helps some when there are nodes in the area. Interfuron's standard is 56 days after surgery. I believe it to be passed then but your Dr might push it if you wanted. The only trial is most likely to be in your area is Yervoy vs Interfuron. Because of that you would also not make the 56 day characteristic.
There is discussion with Antipd1 at Moffitt if you are NED and has HLA blood factor. I might have that wrong and you must be stage IV but NED.
Wishing you the best. We happen to be going to Alabama this weekend for my son's graduation at UAB.
Linda
-
- December 15, 2011 at 1:40 pm
I just read your profile. It does look like your surgeon did make sure that he could make sure of what he was able to find the nodes.
The only other choice that you had listed: watch and wait, interfuron, or a trial is the other possibility of radiation. Radiation has shown that it helps some when there are nodes in the area. Interfuron's standard is 56 days after surgery. I believe it to be passed then but your Dr might push it if you wanted. The only trial is most likely to be in your area is Yervoy vs Interfuron. Because of that you would also not make the 56 day characteristic.
There is discussion with Antipd1 at Moffitt if you are NED and has HLA blood factor. I might have that wrong and you must be stage IV but NED.
Wishing you the best. We happen to be going to Alabama this weekend for my son's graduation at UAB.
Linda
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- December 15, 2011 at 1:44 pm
Is this current oncologist you are seeing a melanoma specialist? Is the doctor at UAB one?
If you have not yet consulted with a melanoma specialist, I would highly recommend you do so before you make a final decision on your care. The "watch and wait" versus the "interferon" debate is a difficult one, and there may be factors in your medical history or family history that a specialist might see and be able to give you more information so you can make a more informed decision.
Melanoma is a difficult cancer and the further down the line it goes, the harder it is to fight. That may be why your oncologist is pushing you to do the interferon treatment.
If you involve a melanoma specialist, it might open up other pathways of treatment as well. There could be medical trials available to you that a general oncologist doesn't have access to. I know that was the case with my husband's care.
Wishing you the best of luck with your decision!
Michelle
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- December 15, 2011 at 1:44 pm
Is this current oncologist you are seeing a melanoma specialist? Is the doctor at UAB one?
If you have not yet consulted with a melanoma specialist, I would highly recommend you do so before you make a final decision on your care. The "watch and wait" versus the "interferon" debate is a difficult one, and there may be factors in your medical history or family history that a specialist might see and be able to give you more information so you can make a more informed decision.
Melanoma is a difficult cancer and the further down the line it goes, the harder it is to fight. That may be why your oncologist is pushing you to do the interferon treatment.
If you involve a melanoma specialist, it might open up other pathways of treatment as well. There could be medical trials available to you that a general oncologist doesn't have access to. I know that was the case with my husband's care.
Wishing you the best of luck with your decision!
Michelle
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- December 15, 2011 at 1:44 pm
Is this current oncologist you are seeing a melanoma specialist? Is the doctor at UAB one?
If you have not yet consulted with a melanoma specialist, I would highly recommend you do so before you make a final decision on your care. The "watch and wait" versus the "interferon" debate is a difficult one, and there may be factors in your medical history or family history that a specialist might see and be able to give you more information so you can make a more informed decision.
Melanoma is a difficult cancer and the further down the line it goes, the harder it is to fight. That may be why your oncologist is pushing you to do the interferon treatment.
If you involve a melanoma specialist, it might open up other pathways of treatment as well. There could be medical trials available to you that a general oncologist doesn't have access to. I know that was the case with my husband's care.
Wishing you the best of luck with your decision!
Michelle
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- December 15, 2011 at 1:51 pm
Hi–
I was in the same boat, still am. I am Stage IIIB with NED. I decided against the interferon and went with observation. I will be meeting with a radiation oncologist in a couple of weeks so I can weigh that option as well. My melanoma oncologist suggested the clinical trial (ippy / interferon) but my surgical oncologist isn't a big believer in interferon. It's a hard decision for those of us who aren't yet in Stage IV.
Wish you the best in your decision.
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- December 15, 2011 at 1:51 pm
Hi–
I was in the same boat, still am. I am Stage IIIB with NED. I decided against the interferon and went with observation. I will be meeting with a radiation oncologist in a couple of weeks so I can weigh that option as well. My melanoma oncologist suggested the clinical trial (ippy / interferon) but my surgical oncologist isn't a big believer in interferon. It's a hard decision for those of us who aren't yet in Stage IV.
Wish you the best in your decision.
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- December 15, 2011 at 4:37 pm
in Nov last year I was dianosed 3b also. I decided against interferon and tried to get in a clinical trial at Sloan. At that time they found nodules in my lungs. By the time they biopsied them (and confirmd Melanoma) I was past the initial timeline to start an ipi trial.
Fortunately (for reason my doctor can't explain) the nodules on my lungs have all disappeared! So while Ipi and now others are available for stage 4 patients – we have decided to go with a watch and wait. They just keep a very close eye on me. I was worried about this approach at first and felt like I should be doing something to kill what might still be floating around in there – but I am now comfortable with watching and waiting – knowing there are many other options out there now (and hopefully more coming!)
Best wishes,
Erin -
- December 15, 2011 at 4:37 pm
in Nov last year I was dianosed 3b also. I decided against interferon and tried to get in a clinical trial at Sloan. At that time they found nodules in my lungs. By the time they biopsied them (and confirmd Melanoma) I was past the initial timeline to start an ipi trial.
Fortunately (for reason my doctor can't explain) the nodules on my lungs have all disappeared! So while Ipi and now others are available for stage 4 patients – we have decided to go with a watch and wait. They just keep a very close eye on me. I was worried about this approach at first and felt like I should be doing something to kill what might still be floating around in there – but I am now comfortable with watching and waiting – knowing there are many other options out there now (and hopefully more coming!)
Best wishes,
Erin -
- December 15, 2011 at 4:37 pm
in Nov last year I was dianosed 3b also. I decided against interferon and tried to get in a clinical trial at Sloan. At that time they found nodules in my lungs. By the time they biopsied them (and confirmd Melanoma) I was past the initial timeline to start an ipi trial.
Fortunately (for reason my doctor can't explain) the nodules on my lungs have all disappeared! So while Ipi and now others are available for stage 4 patients – we have decided to go with a watch and wait. They just keep a very close eye on me. I was worried about this approach at first and felt like I should be doing something to kill what might still be floating around in there – but I am now comfortable with watching and waiting – knowing there are many other options out there now (and hopefully more coming!)
Best wishes,
Erin
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- December 15, 2011 at 1:51 pm
Hi–
I was in the same boat, still am. I am Stage IIIB with NED. I decided against the interferon and went with observation. I will be meeting with a radiation oncologist in a couple of weeks so I can weigh that option as well. My melanoma oncologist suggested the clinical trial (ippy / interferon) but my surgical oncologist isn't a big believer in interferon. It's a hard decision for those of us who aren't yet in Stage IV.
Wish you the best in your decision.
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- December 15, 2011 at 4:35 pm
I am going to assume thay are talking about you doing the 11 month low dose after the one month high dose. Have you considered going the route of the one month high dose only? Some studies show it may have the same benefit as doing the 11 month low dose.
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- December 15, 2011 at 4:35 pm
I am going to assume thay are talking about you doing the 11 month low dose after the one month high dose. Have you considered going the route of the one month high dose only? Some studies show it may have the same benefit as doing the 11 month low dose.
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- December 16, 2011 at 4:35 pm
My Dr recommendated something that he found they where doing over in a European study. Which was to interferon for about 6 to 8 weeks, then a mantaince dose one w week for the next 5 years. I had a hard time with the toughts off a shot a week under the skin for a period of 5 years. That's one of my reasons for looking at other options. Then this week when I went back he mentions interferon being given in the weins for a period of 8 weeks, then 3 times a week after that for a period of one year. all of which just makes my head swim. Still having difficultly of the thoughts of a single mole being removed from my back being melanoma when there is no one in my family with melanoma. I know my families history and there is not a single count of menalona anywhere to my knowledge. Then to find out there is no support groups to go to in or around the area I live has been a eye opener.
Thanks for your input, it is diffently greatly appreciated.
Robbie
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- December 16, 2011 at 4:35 pm
My Dr recommendated something that he found they where doing over in a European study. Which was to interferon for about 6 to 8 weeks, then a mantaince dose one w week for the next 5 years. I had a hard time with the toughts off a shot a week under the skin for a period of 5 years. That's one of my reasons for looking at other options. Then this week when I went back he mentions interferon being given in the weins for a period of 8 weeks, then 3 times a week after that for a period of one year. all of which just makes my head swim. Still having difficultly of the thoughts of a single mole being removed from my back being melanoma when there is no one in my family with melanoma. I know my families history and there is not a single count of menalona anywhere to my knowledge. Then to find out there is no support groups to go to in or around the area I live has been a eye opener.
Thanks for your input, it is diffently greatly appreciated.
Robbie
-
- December 16, 2011 at 4:35 pm
My Dr recommendated something that he found they where doing over in a European study. Which was to interferon for about 6 to 8 weeks, then a mantaince dose one w week for the next 5 years. I had a hard time with the toughts off a shot a week under the skin for a period of 5 years. That's one of my reasons for looking at other options. Then this week when I went back he mentions interferon being given in the weins for a period of 8 weeks, then 3 times a week after that for a period of one year. all of which just makes my head swim. Still having difficultly of the thoughts of a single mole being removed from my back being melanoma when there is no one in my family with melanoma. I know my families history and there is not a single count of menalona anywhere to my knowledge. Then to find out there is no support groups to go to in or around the area I live has been a eye opener.
Thanks for your input, it is diffently greatly appreciated.
Robbie
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- December 17, 2011 at 8:14 pm
Where are located? In Loxely England? Get another opinion.
The five year treatment plan is total nonsense, and shows no consideration for patients themselves. All about money instead.
I haven't reviewed the studies, but I believe the results of the five year are the same as the regular one year interferon. If you want to put your mind at ease and feel like you have done something to combat this disease, studies show the one month high dose is also as effective as the full year.
Who would or even COULD do this for five years? It is rediculous.
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- December 17, 2011 at 8:14 pm
Where are located? In Loxely England? Get another opinion.
The five year treatment plan is total nonsense, and shows no consideration for patients themselves. All about money instead.
I haven't reviewed the studies, but I believe the results of the five year are the same as the regular one year interferon. If you want to put your mind at ease and feel like you have done something to combat this disease, studies show the one month high dose is also as effective as the full year.
Who would or even COULD do this for five years? It is rediculous.
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- December 17, 2011 at 8:14 pm
Where are located? In Loxely England? Get another opinion.
The five year treatment plan is total nonsense, and shows no consideration for patients themselves. All about money instead.
I haven't reviewed the studies, but I believe the results of the five year are the same as the regular one year interferon. If you want to put your mind at ease and feel like you have done something to combat this disease, studies show the one month high dose is also as effective as the full year.
Who would or even COULD do this for five years? It is rediculous.
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- December 15, 2011 at 4:35 pm
I am going to assume thay are talking about you doing the 11 month low dose after the one month high dose. Have you considered going the route of the one month high dose only? Some studies show it may have the same benefit as doing the 11 month low dose.
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