› Forums › General Melanoma Community › Question for those who chose Interferon
- This topic has 24 replies, 7 voices, and was last updated 9 years, 6 months ago by brittanyx.
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- October 14, 2014 at 3:24 pm
I started my 12 month treatment back in May, 2014. Made it through three of four weeks of IV high dosage, couldn't tolerate more than 3 weeks. Then I took a two week break and started the once a week self shots.
My question is for those who completed the 12 months, at any time did they reduce your dosage based on the side effects? I've had my dosage cut three times during the first 4 months. I'm taking exactly half of the dosage I started out with. My dr reduced based on my blood work and severity (nausea, fever, diarrhea etc) of the side effects.
I'm also interested to know if onterferon worked or failed for you.
Thanks in advance for any feedback.
Michael
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- October 14, 2014 at 8:28 pm
Hi Michael
In 2008 I did one month high dose followed by biweekly interferon sub qs for 3 months. I was NED for 4 years so I think it was worth it.
Good luck and take care
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- October 14, 2014 at 8:28 pm
Hi Michael
In 2008 I did one month high dose followed by biweekly interferon sub qs for 3 months. I was NED for 4 years so I think it was worth it.
Good luck and take care
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- October 14, 2014 at 8:28 pm
Hi Michael
In 2008 I did one month high dose followed by biweekly interferon sub qs for 3 months. I was NED for 4 years so I think it was worth it.
Good luck and take care
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- October 15, 2014 at 2:02 am
I did the full month back in 2011, one week off, then the full 11 months of self injection. I actually tolerated it quite well (according to any medical personel who saw me during that year) so no, I never had a dose reduction) the only other "break" I had was when I landed in the ER with appendicitis (I'd had suspected appendicitis months before- prior to starting the interferon, this time it was confirmed). I got to the ER in the middle of the night and they didn't do surgery until the middle of the next day (which was supposed to be an injection day). Given the surgery, i sent my husband to my oncologist to ask if I could miss a dose that week. The answer was I could miss the whole week and the next one if I wanted so that I could heal from surgery. My oncolgist laughed at me for even asking- he said no one else would have asked, they would have just started skipping doses until they felt like they could start again.
Regarding the second question- no it didn't work for me- during the last month of self injections I started to feel something in the area of my lymph node disection. I was trying not to worry about and told myself it was just remodeling of the scar tissue, but it kept growing and I finally decided it needed to go. At the time of surgery it was very apparent that it was melanoma, but the path report indicated that it was not clear whether or not it was a lymph node that was missed, or an in-transit met. It was removed, along with anythign else that might contain lymph nodes in that area. I had a good 3 months, then a TINY bump on my abdomen that I had removed turned out to be a distant met and I moved from stage III to stage IV.
I'm still not sorry I did it. It was all that was available for a stage III at that time, it wasn't fun, but knew I would regret not doing it if I progressed. I then went on to fail Ipi and the BRAF/MEK combo (well, failed earlier than average). Ended up at this point on PD-1, which seems to be working well for me.
I know there are people out there that never progressed after interferon, everyone is different. The same applies to side effects and how well a drug is tolerated. It's also worth noting that your response (or lack there of) to one therapy has no bearing whatsoever on your chances of responding to another therapy, so don't give up if it doesn't work the way you wanted. As I'm sure you found out with your break- you start to feel better pretty fast once you stop. I forgot how good I could feel while I was on it- just adjusted to a new "normal".
Anyway, best of luck with the rest of your therapy. Let us know how things are going now and again- lots of people are here in part to offer support, or their experiences and what worked for them regarding dealing with side effects, etc.
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- October 15, 2014 at 2:02 am
I did the full month back in 2011, one week off, then the full 11 months of self injection. I actually tolerated it quite well (according to any medical personel who saw me during that year) so no, I never had a dose reduction) the only other "break" I had was when I landed in the ER with appendicitis (I'd had suspected appendicitis months before- prior to starting the interferon, this time it was confirmed). I got to the ER in the middle of the night and they didn't do surgery until the middle of the next day (which was supposed to be an injection day). Given the surgery, i sent my husband to my oncologist to ask if I could miss a dose that week. The answer was I could miss the whole week and the next one if I wanted so that I could heal from surgery. My oncolgist laughed at me for even asking- he said no one else would have asked, they would have just started skipping doses until they felt like they could start again.
Regarding the second question- no it didn't work for me- during the last month of self injections I started to feel something in the area of my lymph node disection. I was trying not to worry about and told myself it was just remodeling of the scar tissue, but it kept growing and I finally decided it needed to go. At the time of surgery it was very apparent that it was melanoma, but the path report indicated that it was not clear whether or not it was a lymph node that was missed, or an in-transit met. It was removed, along with anythign else that might contain lymph nodes in that area. I had a good 3 months, then a TINY bump on my abdomen that I had removed turned out to be a distant met and I moved from stage III to stage IV.
I'm still not sorry I did it. It was all that was available for a stage III at that time, it wasn't fun, but knew I would regret not doing it if I progressed. I then went on to fail Ipi and the BRAF/MEK combo (well, failed earlier than average). Ended up at this point on PD-1, which seems to be working well for me.
I know there are people out there that never progressed after interferon, everyone is different. The same applies to side effects and how well a drug is tolerated. It's also worth noting that your response (or lack there of) to one therapy has no bearing whatsoever on your chances of responding to another therapy, so don't give up if it doesn't work the way you wanted. As I'm sure you found out with your break- you start to feel better pretty fast once you stop. I forgot how good I could feel while I was on it- just adjusted to a new "normal".
Anyway, best of luck with the rest of your therapy. Let us know how things are going now and again- lots of people are here in part to offer support, or their experiences and what worked for them regarding dealing with side effects, etc.
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- October 15, 2014 at 2:02 am
I did the full month back in 2011, one week off, then the full 11 months of self injection. I actually tolerated it quite well (according to any medical personel who saw me during that year) so no, I never had a dose reduction) the only other "break" I had was when I landed in the ER with appendicitis (I'd had suspected appendicitis months before- prior to starting the interferon, this time it was confirmed). I got to the ER in the middle of the night and they didn't do surgery until the middle of the next day (which was supposed to be an injection day). Given the surgery, i sent my husband to my oncologist to ask if I could miss a dose that week. The answer was I could miss the whole week and the next one if I wanted so that I could heal from surgery. My oncolgist laughed at me for even asking- he said no one else would have asked, they would have just started skipping doses until they felt like they could start again.
Regarding the second question- no it didn't work for me- during the last month of self injections I started to feel something in the area of my lymph node disection. I was trying not to worry about and told myself it was just remodeling of the scar tissue, but it kept growing and I finally decided it needed to go. At the time of surgery it was very apparent that it was melanoma, but the path report indicated that it was not clear whether or not it was a lymph node that was missed, or an in-transit met. It was removed, along with anythign else that might contain lymph nodes in that area. I had a good 3 months, then a TINY bump on my abdomen that I had removed turned out to be a distant met and I moved from stage III to stage IV.
I'm still not sorry I did it. It was all that was available for a stage III at that time, it wasn't fun, but knew I would regret not doing it if I progressed. I then went on to fail Ipi and the BRAF/MEK combo (well, failed earlier than average). Ended up at this point on PD-1, which seems to be working well for me.
I know there are people out there that never progressed after interferon, everyone is different. The same applies to side effects and how well a drug is tolerated. It's also worth noting that your response (or lack there of) to one therapy has no bearing whatsoever on your chances of responding to another therapy, so don't give up if it doesn't work the way you wanted. As I'm sure you found out with your break- you start to feel better pretty fast once you stop. I forgot how good I could feel while I was on it- just adjusted to a new "normal".
Anyway, best of luck with the rest of your therapy. Let us know how things are going now and again- lots of people are here in part to offer support, or their experiences and what worked for them regarding dealing with side effects, etc.
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- October 15, 2014 at 2:25 pm
I did the 30 Hd interferon back on late April and i had just a little fatigue and some hair loss, my blood work was always good but my BP stayed very low..What helped me through it was drinking lot's of water and i also drank V-8 juice at least 3 times a day..When they did my scans after the 30 days they found that i my spots in my lungs showed up more and that i had 2 lymph nodes show positive for melanoma..They started me on Yervoy 1 infusion every 3 weeks , i finished it Aug 13 and my scans show NOTHING in my lungs and one lympn node was gone and the other was half it's size…Scans again in Dec..Good luck
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- October 15, 2014 at 3:13 pm
You might want to read this that says the high dose doesn't improve survival too.http://www.jnccn.org/content/2/1/69.abstract by Sloan Kettering doc
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- October 15, 2014 at 3:13 pm
You might want to read this that says the high dose doesn't improve survival too.http://www.jnccn.org/content/2/1/69.abstract by Sloan Kettering doc
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- October 15, 2014 at 3:13 pm
You might want to read this that says the high dose doesn't improve survival too.http://www.jnccn.org/content/2/1/69.abstract by Sloan Kettering doc
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- October 15, 2014 at 2:25 pm
I did the 30 Hd interferon back on late April and i had just a little fatigue and some hair loss, my blood work was always good but my BP stayed very low..What helped me through it was drinking lot's of water and i also drank V-8 juice at least 3 times a day..When they did my scans after the 30 days they found that i my spots in my lungs showed up more and that i had 2 lymph nodes show positive for melanoma..They started me on Yervoy 1 infusion every 3 weeks , i finished it Aug 13 and my scans show NOTHING in my lungs and one lympn node was gone and the other was half it's size…Scans again in Dec..Good luck
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- October 15, 2014 at 2:25 pm
I did the 30 Hd interferon back on late April and i had just a little fatigue and some hair loss, my blood work was always good but my BP stayed very low..What helped me through it was drinking lot's of water and i also drank V-8 juice at least 3 times a day..When they did my scans after the 30 days they found that i my spots in my lungs showed up more and that i had 2 lymph nodes show positive for melanoma..They started me on Yervoy 1 infusion every 3 weeks , i finished it Aug 13 and my scans show NOTHING in my lungs and one lympn node was gone and the other was half it's size…Scans again in Dec..Good luck
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- October 16, 2014 at 2:22 am
Michael,
I did the full 30 days HD and 11 months LD in 2012. I guess I tolerated it fairly well but it definitely wasn't a walk in the park. I never had to have my dose reduced although I was close a couple times during the HD treatment. Unfortunately I progressed to stage IV 4 months after completing the treatment.
I can understand why folks have the urge to take polls on here but you really have to take the replies with a grain of salt. More than likely the majority of folks who did interferon 3+ years ago and never had a recurrence are out living their lifes and not logging on here very often.
If you study the statistics of interferon even the most ardent proponents of the treatment can not claim a significant improvement for overall survival. I think you can argue there is some benefit in delaying a recurrence but others will argue the decline in quality of life for that delay isn't worth it.
Hopefully you start to feel better soon.
Brian
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- October 16, 2014 at 2:22 am
Michael,
I did the full 30 days HD and 11 months LD in 2012. I guess I tolerated it fairly well but it definitely wasn't a walk in the park. I never had to have my dose reduced although I was close a couple times during the HD treatment. Unfortunately I progressed to stage IV 4 months after completing the treatment.
I can understand why folks have the urge to take polls on here but you really have to take the replies with a grain of salt. More than likely the majority of folks who did interferon 3+ years ago and never had a recurrence are out living their lifes and not logging on here very often.
If you study the statistics of interferon even the most ardent proponents of the treatment can not claim a significant improvement for overall survival. I think you can argue there is some benefit in delaying a recurrence but others will argue the decline in quality of life for that delay isn't worth it.
Hopefully you start to feel better soon.
Brian
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- October 16, 2014 at 2:22 am
Michael,
I did the full 30 days HD and 11 months LD in 2012. I guess I tolerated it fairly well but it definitely wasn't a walk in the park. I never had to have my dose reduced although I was close a couple times during the HD treatment. Unfortunately I progressed to stage IV 4 months after completing the treatment.
I can understand why folks have the urge to take polls on here but you really have to take the replies with a grain of salt. More than likely the majority of folks who did interferon 3+ years ago and never had a recurrence are out living their lifes and not logging on here very often.
If you study the statistics of interferon even the most ardent proponents of the treatment can not claim a significant improvement for overall survival. I think you can argue there is some benefit in delaying a recurrence but others will argue the decline in quality of life for that delay isn't worth it.
Hopefully you start to feel better soon.
Brian
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- October 16, 2014 at 3:55 pm
Hi Michael, I did High dose Interferon in June 2012. Each week they had to keep lowering my dose due to Liver function #. I decided not to continue after the high dose phase, my choice was quality of life. I was not able to function on the drug. I watched a video this morning on OncLive on Interferon ( go to OncLive, choose Melanoma on left column of titles, then the video with Jeffrey Weber, guy with bow tie. Title under his name is Nivolumab plus Ipilimumab in Advanced Melanoma. Then scroll down you should see a list of Episode 1- 12 listed. Episode 5,6 and 7 talk about Adjuvant therapy of Melanoma. Hope this will answer some of your questions. The panel is excellent with medical oncologists and surgeons, so you get different opinions based on different view points. Wishing you the best of luck with the treatments. Ed
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- October 16, 2014 at 3:55 pm
Hi Michael, I did High dose Interferon in June 2012. Each week they had to keep lowering my dose due to Liver function #. I decided not to continue after the high dose phase, my choice was quality of life. I was not able to function on the drug. I watched a video this morning on OncLive on Interferon ( go to OncLive, choose Melanoma on left column of titles, then the video with Jeffrey Weber, guy with bow tie. Title under his name is Nivolumab plus Ipilimumab in Advanced Melanoma. Then scroll down you should see a list of Episode 1- 12 listed. Episode 5,6 and 7 talk about Adjuvant therapy of Melanoma. Hope this will answer some of your questions. The panel is excellent with medical oncologists and surgeons, so you get different opinions based on different view points. Wishing you the best of luck with the treatments. Ed
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- October 16, 2014 at 3:55 pm
Hi Michael, I did High dose Interferon in June 2012. Each week they had to keep lowering my dose due to Liver function #. I decided not to continue after the high dose phase, my choice was quality of life. I was not able to function on the drug. I watched a video this morning on OncLive on Interferon ( go to OncLive, choose Melanoma on left column of titles, then the video with Jeffrey Weber, guy with bow tie. Title under his name is Nivolumab plus Ipilimumab in Advanced Melanoma. Then scroll down you should see a list of Episode 1- 12 listed. Episode 5,6 and 7 talk about Adjuvant therapy of Melanoma. Hope this will answer some of your questions. The panel is excellent with medical oncologists and surgeons, so you get different opinions based on different view points. Wishing you the best of luck with the treatments. Ed
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- October 22, 2014 at 11:01 pm
Hi Michael. I started Interferon 2 months ago. Started high dose IV infusion for a month. End of september started my shots. I have had no bad side effects with this treatment. I have a routine that I do. If I take advil 30 minutes before treatment, I have side effects. It's been great. I recommend anyone who is doing interferon to try that, or if they perfer Tylonol.
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- October 22, 2014 at 11:01 pm
Hi Michael. I started Interferon 2 months ago. Started high dose IV infusion for a month. End of september started my shots. I have had no bad side effects with this treatment. I have a routine that I do. If I take advil 30 minutes before treatment, I have side effects. It's been great. I recommend anyone who is doing interferon to try that, or if they perfer Tylonol.
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- October 22, 2014 at 11:01 pm
Hi Michael. I started Interferon 2 months ago. Started high dose IV infusion for a month. End of september started my shots. I have had no bad side effects with this treatment. I have a routine that I do. If I take advil 30 minutes before treatment, I have side effects. It's been great. I recommend anyone who is doing interferon to try that, or if they perfer Tylonol.
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