› Forums › General Melanoma Community › Is Interferon worth it?
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Never Gonna Stop.
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- September 17, 2015 at 12:53 am
I am currently said to be a stage 3b melanoma patient and will be having scans next week to determine if there has been any spread to distant nodes or other organs. My surgeon feels optimistic that it hasn't spread past the one (rather large) sentinal lymph node that he removed two weeks ago.
He also seems to be sort of half-heartedly recommending Interferon if I am indeed staged at 3b. It's as if he knows the statistical benefit isn't that great, but has no other options at this stage. I will know more at my next appointment next week.
My question is this: Are the side effects of Interferon worth it to see only a 3% improved chance of longer-term survival? I am researching some articles and leaning toward not doing the Interferon at this time, but also don't want to be too hasty in deciding.
Does anyone have information or personal experience that can help me make this decision? I want to fight this insidious disease, but also don't want to live with flu-like side effects – and worse – if the benefits are negligible.
Thank you in advance for your input.
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- September 17, 2015 at 2:01 am
I was IIIb after my lymph node dissection. I went to see Dr. Sharfman at Johns Hopkins, who told me that he would recommend that I try Sylatron rather than high dose interferon. He added, "It would also be acceptable if you just chose observation."
I elected to try Sylatron. I usually tolerate things pretty well, but the change that one shot made in my quality of life made it easy to decide that I didn't want to take a second one. I was in bed for almost 2 days. After that, it took me a week to start feeling somewhat normal, and at least another month before I felt like my old self.
Now, I should add to that that my melanoma recurred last summer, and I had more surgery, followed by Yervoy, and now Keytruda.
But, as Dr. Sharfman told me, interferon delays a possible recurrence, but it doesn't extend your life. For me, it just wasn't worth it. I'm "type A." I like to do things. I go to hockey games, baseball games. I coach soccer. Feeling bad all the time just wasn't an option, once I found out just how bad it was going to make me feel. Of course, maybe it wouldn't have been as bad after the dose was reduced, but I didn't want to go through the initial treatments to try and find out.
There is currently some discussion about Yervoy replacing interferon as an adjuvant treatment. That would be a major step in the right direction.
-Bill
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- September 17, 2015 at 2:01 am
I was IIIb after my lymph node dissection. I went to see Dr. Sharfman at Johns Hopkins, who told me that he would recommend that I try Sylatron rather than high dose interferon. He added, "It would also be acceptable if you just chose observation."
I elected to try Sylatron. I usually tolerate things pretty well, but the change that one shot made in my quality of life made it easy to decide that I didn't want to take a second one. I was in bed for almost 2 days. After that, it took me a week to start feeling somewhat normal, and at least another month before I felt like my old self.
Now, I should add to that that my melanoma recurred last summer, and I had more surgery, followed by Yervoy, and now Keytruda.
But, as Dr. Sharfman told me, interferon delays a possible recurrence, but it doesn't extend your life. For me, it just wasn't worth it. I'm "type A." I like to do things. I go to hockey games, baseball games. I coach soccer. Feeling bad all the time just wasn't an option, once I found out just how bad it was going to make me feel. Of course, maybe it wouldn't have been as bad after the dose was reduced, but I didn't want to go through the initial treatments to try and find out.
There is currently some discussion about Yervoy replacing interferon as an adjuvant treatment. That would be a major step in the right direction.
-Bill
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- September 17, 2015 at 2:01 am
I was IIIb after my lymph node dissection. I went to see Dr. Sharfman at Johns Hopkins, who told me that he would recommend that I try Sylatron rather than high dose interferon. He added, "It would also be acceptable if you just chose observation."
I elected to try Sylatron. I usually tolerate things pretty well, but the change that one shot made in my quality of life made it easy to decide that I didn't want to take a second one. I was in bed for almost 2 days. After that, it took me a week to start feeling somewhat normal, and at least another month before I felt like my old self.
Now, I should add to that that my melanoma recurred last summer, and I had more surgery, followed by Yervoy, and now Keytruda.
But, as Dr. Sharfman told me, interferon delays a possible recurrence, but it doesn't extend your life. For me, it just wasn't worth it. I'm "type A." I like to do things. I go to hockey games, baseball games. I coach soccer. Feeling bad all the time just wasn't an option, once I found out just how bad it was going to make me feel. Of course, maybe it wouldn't have been as bad after the dose was reduced, but I didn't want to go through the initial treatments to try and find out.
There is currently some discussion about Yervoy replacing interferon as an adjuvant treatment. That would be a major step in the right direction.
-Bill
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- September 17, 2015 at 2:09 am
Christine – while I made the choice for Interferon as a 3A at the beginning of 2015…I would look for alternatives as a 3B patient. There are several clinical studies that opened up this year for 3B patients (most of them are trying what has been seen as successes for Stage 4 patients). In my opinion the risk/reward definitely favors a non-Interferon option consideration.
BTW…you need to get treated by a melanoma oncologist specialist…not a surgeon.
All the best.
Michel
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- September 17, 2015 at 3:09 am
I echo the sentiment that you should seek out a clinical trial for the improved immunotherapy drugs. As stage 3b, you’re eligible for treatments that have more definitive evidence showing they are effective. It sounds like your treatment center doesn’t have a trial for you, or I imagine they’d offer it. If you haven’t gone to https://clinicaltrials.gov, check it out. Hopefully you can find one that’s at least somewhat convenient for you to get to. There’s a lot of stuff on there, but look for the PD-1, PD-L1, or CTLA4 inhibitors. Be aware some may have placebo arms (no treatment) instead of standard of care (interferon)Personally, I’m stage 3a, so I could only choose interferon. I just gave myself an injection 3 hours ago. Things are going extremely well for me, and I would do it all over again without a single second thought. Everyone is different, but I think renovating my life to a very healthy lifestyle has helped me thrive through this.
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- September 17, 2015 at 3:09 am
I echo the sentiment that you should seek out a clinical trial for the improved immunotherapy drugs. As stage 3b, you’re eligible for treatments that have more definitive evidence showing they are effective. It sounds like your treatment center doesn’t have a trial for you, or I imagine they’d offer it. If you haven’t gone to https://clinicaltrials.gov, check it out. Hopefully you can find one that’s at least somewhat convenient for you to get to. There’s a lot of stuff on there, but look for the PD-1, PD-L1, or CTLA4 inhibitors. Be aware some may have placebo arms (no treatment) instead of standard of care (interferon)Personally, I’m stage 3a, so I could only choose interferon. I just gave myself an injection 3 hours ago. Things are going extremely well for me, and I would do it all over again without a single second thought. Everyone is different, but I think renovating my life to a very healthy lifestyle has helped me thrive through this.
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- September 17, 2015 at 3:09 am
I echo the sentiment that you should seek out a clinical trial for the improved immunotherapy drugs. As stage 3b, you’re eligible for treatments that have more definitive evidence showing they are effective. It sounds like your treatment center doesn’t have a trial for you, or I imagine they’d offer it. If you haven’t gone to https://clinicaltrials.gov, check it out. Hopefully you can find one that’s at least somewhat convenient for you to get to. There’s a lot of stuff on there, but look for the PD-1, PD-L1, or CTLA4 inhibitors. Be aware some may have placebo arms (no treatment) instead of standard of care (interferon)Personally, I’m stage 3a, so I could only choose interferon. I just gave myself an injection 3 hours ago. Things are going extremely well for me, and I would do it all over again without a single second thought. Everyone is different, but I think renovating my life to a very healthy lifestyle has helped me thrive through this.
-
- September 17, 2015 at 2:09 am
Christine – while I made the choice for Interferon as a 3A at the beginning of 2015…I would look for alternatives as a 3B patient. There are several clinical studies that opened up this year for 3B patients (most of them are trying what has been seen as successes for Stage 4 patients). In my opinion the risk/reward definitely favors a non-Interferon option consideration.
BTW…you need to get treated by a melanoma oncologist specialist…not a surgeon.
All the best.
Michel
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- September 17, 2015 at 2:09 am
Christine – while I made the choice for Interferon as a 3A at the beginning of 2015…I would look for alternatives as a 3B patient. There are several clinical studies that opened up this year for 3B patients (most of them are trying what has been seen as successes for Stage 4 patients). In my opinion the risk/reward definitely favors a non-Interferon option consideration.
BTW…you need to get treated by a melanoma oncologist specialist…not a surgeon.
All the best.
Michel
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- September 17, 2015 at 4:28 am
ET and I have been agonizing over treatment options for fully resected IIIb and haven't yet started any. We've studied the matter pretty thoroughly. ET decided against interferon because the small benefits don't justify the side effects (for most people, but clearly not all). All that's left after interferon is clinical trials.
We were ready to sign on to a large phase III trial comparing ipilimumab with nivolumab, but the trial closed literally days before we inquired about it. There's another new trial in which Chicago (Sigrun Hallmeyer) is the only US center participating (so far). It compares pembrolizumab to placebo. We did not meet the acceptance criteria because 10 lymph nodes were not disected, and ET is not willing to go under the knife to have healthy lymph nodes removed just to satisfy the trial criteria. But if you've had 10 lymph nodes dissected, that might be an attractive option. Perks include their re-treating you with pembrolizumab for up to a year if your melanoma recurs outside of a 6 mo window beyond your initial year of treatment.
There are a number of trials looking at BRAF and MEK inhibitors, but we were strongly advised by ET's oncologist against playing these cards too early. These drugs are highly effective, but only for a short time (maybe 10 months), before the disease builds resistance. They are good at buying time at stage IV, and they might eventually be employed as an important arm of some combination therapy, but so far these drugs do not offer durable responses, which is what I think we all want with resected stage IIIb.
There are some randomized studies comparing checkpoint blockade drugs (e.g. ipilimumab) with interferon. I guess they're not blinded because blinding wouldn't really work. ET isn't interested in the interferon arm, and although she could withdraw if assigned to interferon treatment, she would have squandered the opportunity to be part of a study. It would be better in her view to be assigned to a placebo arm in a different study and benefit from the close monitoring without suffering interferon adverse effects. Of course the best outcome would be receiving the immunotherapy.
There are also a couple of vaccine trials. Vaccines are a rather unpopular option, having been generally ineffective in the past, but these trials would still offer very careful monitoring, which often is the main benefit of a clinical trial.
We are still agonizing over these choices and will need to decide soon. Regardless, these are some of our thoughts.
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- September 17, 2015 at 4:28 am
ET and I have been agonizing over treatment options for fully resected IIIb and haven't yet started any. We've studied the matter pretty thoroughly. ET decided against interferon because the small benefits don't justify the side effects (for most people, but clearly not all). All that's left after interferon is clinical trials.
We were ready to sign on to a large phase III trial comparing ipilimumab with nivolumab, but the trial closed literally days before we inquired about it. There's another new trial in which Chicago (Sigrun Hallmeyer) is the only US center participating (so far). It compares pembrolizumab to placebo. We did not meet the acceptance criteria because 10 lymph nodes were not disected, and ET is not willing to go under the knife to have healthy lymph nodes removed just to satisfy the trial criteria. But if you've had 10 lymph nodes dissected, that might be an attractive option. Perks include their re-treating you with pembrolizumab for up to a year if your melanoma recurs outside of a 6 mo window beyond your initial year of treatment.
There are a number of trials looking at BRAF and MEK inhibitors, but we were strongly advised by ET's oncologist against playing these cards too early. These drugs are highly effective, but only for a short time (maybe 10 months), before the disease builds resistance. They are good at buying time at stage IV, and they might eventually be employed as an important arm of some combination therapy, but so far these drugs do not offer durable responses, which is what I think we all want with resected stage IIIb.
There are some randomized studies comparing checkpoint blockade drugs (e.g. ipilimumab) with interferon. I guess they're not blinded because blinding wouldn't really work. ET isn't interested in the interferon arm, and although she could withdraw if assigned to interferon treatment, she would have squandered the opportunity to be part of a study. It would be better in her view to be assigned to a placebo arm in a different study and benefit from the close monitoring without suffering interferon adverse effects. Of course the best outcome would be receiving the immunotherapy.
There are also a couple of vaccine trials. Vaccines are a rather unpopular option, having been generally ineffective in the past, but these trials would still offer very careful monitoring, which often is the main benefit of a clinical trial.
We are still agonizing over these choices and will need to decide soon. Regardless, these are some of our thoughts.
-
- September 17, 2015 at 4:28 am
ET and I have been agonizing over treatment options for fully resected IIIb and haven't yet started any. We've studied the matter pretty thoroughly. ET decided against interferon because the small benefits don't justify the side effects (for most people, but clearly not all). All that's left after interferon is clinical trials.
We were ready to sign on to a large phase III trial comparing ipilimumab with nivolumab, but the trial closed literally days before we inquired about it. There's another new trial in which Chicago (Sigrun Hallmeyer) is the only US center participating (so far). It compares pembrolizumab to placebo. We did not meet the acceptance criteria because 10 lymph nodes were not disected, and ET is not willing to go under the knife to have healthy lymph nodes removed just to satisfy the trial criteria. But if you've had 10 lymph nodes dissected, that might be an attractive option. Perks include their re-treating you with pembrolizumab for up to a year if your melanoma recurs outside of a 6 mo window beyond your initial year of treatment.
There are a number of trials looking at BRAF and MEK inhibitors, but we were strongly advised by ET's oncologist against playing these cards too early. These drugs are highly effective, but only for a short time (maybe 10 months), before the disease builds resistance. They are good at buying time at stage IV, and they might eventually be employed as an important arm of some combination therapy, but so far these drugs do not offer durable responses, which is what I think we all want with resected stage IIIb.
There are some randomized studies comparing checkpoint blockade drugs (e.g. ipilimumab) with interferon. I guess they're not blinded because blinding wouldn't really work. ET isn't interested in the interferon arm, and although she could withdraw if assigned to interferon treatment, she would have squandered the opportunity to be part of a study. It would be better in her view to be assigned to a placebo arm in a different study and benefit from the close monitoring without suffering interferon adverse effects. Of course the best outcome would be receiving the immunotherapy.
There are also a couple of vaccine trials. Vaccines are a rather unpopular option, having been generally ineffective in the past, but these trials would still offer very careful monitoring, which often is the main benefit of a clinical trial.
We are still agonizing over these choices and will need to decide soon. Regardless, these are some of our thoughts.
-
- September 17, 2015 at 6:58 am
Stage 3A here.
I pondered the same decision as you did for a solid couple of months as I recouped from surgery.
In the end, since it was the only option available to me, the one thought that came to me again and again was why not try interferon, as it helps boosts your immune system in turn warding off the cells. It may not boost any measurable statistics but if it helps prolong the diease from returning, then you have that much longer that your immune system can kill off those cancer cells.
Its a personal decision, some can't get through the treatment. For me, it was doable. And here I am, 2 years later NED.
Whichever path you choose, stand behind it.
Best of luck
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- September 17, 2015 at 6:58 am
Stage 3A here.
I pondered the same decision as you did for a solid couple of months as I recouped from surgery.
In the end, since it was the only option available to me, the one thought that came to me again and again was why not try interferon, as it helps boosts your immune system in turn warding off the cells. It may not boost any measurable statistics but if it helps prolong the diease from returning, then you have that much longer that your immune system can kill off those cancer cells.
Its a personal decision, some can't get through the treatment. For me, it was doable. And here I am, 2 years later NED.
Whichever path you choose, stand behind it.
Best of luck
-
- September 17, 2015 at 6:58 am
Stage 3A here.
I pondered the same decision as you did for a solid couple of months as I recouped from surgery.
In the end, since it was the only option available to me, the one thought that came to me again and again was why not try interferon, as it helps boosts your immune system in turn warding off the cells. It may not boost any measurable statistics but if it helps prolong the diease from returning, then you have that much longer that your immune system can kill off those cancer cells.
Its a personal decision, some can't get through the treatment. For me, it was doable. And here I am, 2 years later NED.
Whichever path you choose, stand behind it.
Best of luck
-
- September 17, 2015 at 1:56 pm
I disagree with the last comment, Interferon does not boost your immunity, it is like standard chemo that destroys the good and bad cells. More people die from the effects of the chemo than the chemo drug themselves because they do destroy the good cells.
Check out immunotherapy drugs if you want something to boost your immunity. I chose the watch and wait scenario and didn't have anything until I became stage IV and then I chose a immunotherapy drug. I have been NED for over 2 years now.
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- September 17, 2015 at 1:56 pm
I disagree with the last comment, Interferon does not boost your immunity, it is like standard chemo that destroys the good and bad cells. More people die from the effects of the chemo than the chemo drug themselves because they do destroy the good cells.
Check out immunotherapy drugs if you want something to boost your immunity. I chose the watch and wait scenario and didn't have anything until I became stage IV and then I chose a immunotherapy drug. I have been NED for over 2 years now.
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- September 17, 2015 at 2:24 pm
That is absolutely preposterous. Interferon is nothing like chemotherapy. Chemotherapy acts as a "poison" to directly target tumor cells and kill them. This is achieved in different ways by different drugs. You advise to check out immunotherapy drugs…interferon IS an immunotherapy drug. It binds the type I interferon receptor on immune cells and activates the JAK-STAT signaling pathway. This leads to a HUGE amount of gene expression changes in immune cells (that can be summed up as strongly activating the immune cell) and has been known for decades to lead to potent antiviral responses and antitumor responses.
Now, interferon can be somewhat immunosuppressive because it interferes with migration of new cells from the bone marrow to the blood. But you're not blindly destroying the good cells with interferon, and there's no need to scare people in the forum into thinking that. You can get autoimmunity due to interferon (and also from the the newer checkpoint inhibitors), but there is some evidence that the development of autoimmunity has some positive prognostic significance.
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- September 17, 2015 at 2:24 pm
That is absolutely preposterous. Interferon is nothing like chemotherapy. Chemotherapy acts as a "poison" to directly target tumor cells and kill them. This is achieved in different ways by different drugs. You advise to check out immunotherapy drugs…interferon IS an immunotherapy drug. It binds the type I interferon receptor on immune cells and activates the JAK-STAT signaling pathway. This leads to a HUGE amount of gene expression changes in immune cells (that can be summed up as strongly activating the immune cell) and has been known for decades to lead to potent antiviral responses and antitumor responses.
Now, interferon can be somewhat immunosuppressive because it interferes with migration of new cells from the bone marrow to the blood. But you're not blindly destroying the good cells with interferon, and there's no need to scare people in the forum into thinking that. You can get autoimmunity due to interferon (and also from the the newer checkpoint inhibitors), but there is some evidence that the development of autoimmunity has some positive prognostic significance.
-
- September 17, 2015 at 2:24 pm
That is absolutely preposterous. Interferon is nothing like chemotherapy. Chemotherapy acts as a "poison" to directly target tumor cells and kill them. This is achieved in different ways by different drugs. You advise to check out immunotherapy drugs…interferon IS an immunotherapy drug. It binds the type I interferon receptor on immune cells and activates the JAK-STAT signaling pathway. This leads to a HUGE amount of gene expression changes in immune cells (that can be summed up as strongly activating the immune cell) and has been known for decades to lead to potent antiviral responses and antitumor responses.
Now, interferon can be somewhat immunosuppressive because it interferes with migration of new cells from the bone marrow to the blood. But you're not blindly destroying the good cells with interferon, and there's no need to scare people in the forum into thinking that. You can get autoimmunity due to interferon (and also from the the newer checkpoint inhibitors), but there is some evidence that the development of autoimmunity has some positive prognostic significance.
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- September 17, 2015 at 11:23 pm
I totally AGREE that Interferon DOES boost the immune system. As a15 year stage 3 survivor who did a year of Interferon, I feel that I know what I'm talking about. Interferon is a biological agent that your body produces naturally. The thought process is that it revs up the immune system in hopes your body will destroy the cancerous cells. Melanoma has one of the highest rates of spontaneous remission.
During the 4th month of my year of treatment, a large mass appeared in the middle of my chest on a CT scan. Not wanting to leave potential mm inside me, I was referred to a thoracic surgeon to see about a biopsy. The mass was behind my breast bone and the only way to get to it was to crack the bone. While I was ready to go, luckily the surgeon had a trip planned and I had to wait 3 weeks.
My oncologist said he didn't think it was mm but my thymus gland. The gland is typically absorbed in the body by age 18. My onc felt my immune system was on overdrive and it popped up. To prove his theory, I went off Interferon for a week and took high dose steroids instead. A CT scan a week after that showed NO mass. Hence, my doctor was correct! As soon as I was back on Interferon, the mass popped back up and could even be seen slightly on CT scans as long as 2 years later.
The main reason for my post is to warn those readers who are thinking about Interferon to take the negative comments of posters with a grain of salt. Unless a person has done Interferon or knows someone personally, they are just giving their "opinion". Interferon is not chemo but a form of immunotherapy. My 8 years as the volunteer treasurer for MRF gave me plenty of opportunity to meet numerous doctors and researchers that gave me more information about mm than the average joe knows.
Cara
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- September 17, 2015 at 11:23 pm
I totally AGREE that Interferon DOES boost the immune system. As a15 year stage 3 survivor who did a year of Interferon, I feel that I know what I'm talking about. Interferon is a biological agent that your body produces naturally. The thought process is that it revs up the immune system in hopes your body will destroy the cancerous cells. Melanoma has one of the highest rates of spontaneous remission.
During the 4th month of my year of treatment, a large mass appeared in the middle of my chest on a CT scan. Not wanting to leave potential mm inside me, I was referred to a thoracic surgeon to see about a biopsy. The mass was behind my breast bone and the only way to get to it was to crack the bone. While I was ready to go, luckily the surgeon had a trip planned and I had to wait 3 weeks.
My oncologist said he didn't think it was mm but my thymus gland. The gland is typically absorbed in the body by age 18. My onc felt my immune system was on overdrive and it popped up. To prove his theory, I went off Interferon for a week and took high dose steroids instead. A CT scan a week after that showed NO mass. Hence, my doctor was correct! As soon as I was back on Interferon, the mass popped back up and could even be seen slightly on CT scans as long as 2 years later.
The main reason for my post is to warn those readers who are thinking about Interferon to take the negative comments of posters with a grain of salt. Unless a person has done Interferon or knows someone personally, they are just giving their "opinion". Interferon is not chemo but a form of immunotherapy. My 8 years as the volunteer treasurer for MRF gave me plenty of opportunity to meet numerous doctors and researchers that gave me more information about mm than the average joe knows.
Cara
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- September 18, 2015 at 2:32 pm
That is an awesome story! Thanks for sharing! I'm glad to hear it sounds like you're doing really well!
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- September 18, 2015 at 2:32 pm
That is an awesome story! Thanks for sharing! I'm glad to hear it sounds like you're doing really well!
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- September 18, 2015 at 2:32 pm
That is an awesome story! Thanks for sharing! I'm glad to hear it sounds like you're doing really well!
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- September 17, 2015 at 11:23 pm
I totally AGREE that Interferon DOES boost the immune system. As a15 year stage 3 survivor who did a year of Interferon, I feel that I know what I'm talking about. Interferon is a biological agent that your body produces naturally. The thought process is that it revs up the immune system in hopes your body will destroy the cancerous cells. Melanoma has one of the highest rates of spontaneous remission.
During the 4th month of my year of treatment, a large mass appeared in the middle of my chest on a CT scan. Not wanting to leave potential mm inside me, I was referred to a thoracic surgeon to see about a biopsy. The mass was behind my breast bone and the only way to get to it was to crack the bone. While I was ready to go, luckily the surgeon had a trip planned and I had to wait 3 weeks.
My oncologist said he didn't think it was mm but my thymus gland. The gland is typically absorbed in the body by age 18. My onc felt my immune system was on overdrive and it popped up. To prove his theory, I went off Interferon for a week and took high dose steroids instead. A CT scan a week after that showed NO mass. Hence, my doctor was correct! As soon as I was back on Interferon, the mass popped back up and could even be seen slightly on CT scans as long as 2 years later.
The main reason for my post is to warn those readers who are thinking about Interferon to take the negative comments of posters with a grain of salt. Unless a person has done Interferon or knows someone personally, they are just giving their "opinion". Interferon is not chemo but a form of immunotherapy. My 8 years as the volunteer treasurer for MRF gave me plenty of opportunity to meet numerous doctors and researchers that gave me more information about mm than the average joe knows.
Cara
-
- September 17, 2015 at 1:56 pm
I disagree with the last comment, Interferon does not boost your immunity, it is like standard chemo that destroys the good and bad cells. More people die from the effects of the chemo than the chemo drug themselves because they do destroy the good cells.
Check out immunotherapy drugs if you want something to boost your immunity. I chose the watch and wait scenario and didn't have anything until I became stage IV and then I chose a immunotherapy drug. I have been NED for over 2 years now.
-
- September 17, 2015 at 3:01 pm
Christine, interferon is always a fun topic on the forum! You can go back over the last couple of years and read dozens of posts on the topic. Why do some people sail through the treatments easily and others like myself get knocked over like they have been hit with a baseball bat. I was fit, active phys-ed and science middle school teacher back in 2012 when I did high dose interferon. By the second day of treatments I was a mess. Now, I compare this to the clinical trial that I have been on for the last 18 months called checkmate 67 of Ipi and Nivolumab. I am able to drive my self to all the treatments and scan appointments, and I have not experienced any of the serious side effects that can happen with the treatments and my tumors have been kept under control. I stopped the Interferon after the high dose phase of 20 treatments over 4 weeks. I felt like I had run the ironman race but most of my time(month) was spent in bed. The good news was that within a month I was back to myself. Would I do it again? No, but that is because I can now look back and have the advantage of hindsight. Do nothing or take something that could be very difficult!!!! The choice today as it was 3 years ago is still a crappy one. Ed
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- September 17, 2015 at 3:01 pm
Christine, interferon is always a fun topic on the forum! You can go back over the last couple of years and read dozens of posts on the topic. Why do some people sail through the treatments easily and others like myself get knocked over like they have been hit with a baseball bat. I was fit, active phys-ed and science middle school teacher back in 2012 when I did high dose interferon. By the second day of treatments I was a mess. Now, I compare this to the clinical trial that I have been on for the last 18 months called checkmate 67 of Ipi and Nivolumab. I am able to drive my self to all the treatments and scan appointments, and I have not experienced any of the serious side effects that can happen with the treatments and my tumors have been kept under control. I stopped the Interferon after the high dose phase of 20 treatments over 4 weeks. I felt like I had run the ironman race but most of my time(month) was spent in bed. The good news was that within a month I was back to myself. Would I do it again? No, but that is because I can now look back and have the advantage of hindsight. Do nothing or take something that could be very difficult!!!! The choice today as it was 3 years ago is still a crappy one. Ed
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- September 17, 2015 at 6:00 pm
Christine, to answer your question, no, it isn't worth it. It isn't controversial at all, it is clearly proven not to increase survival. Some folks need to move onto the current drugs and watch and wait is much better than feeling crummy without a benefit. Also, it does ruin fertility and causes depression.
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- September 17, 2015 at 6:00 pm
Christine, to answer your question, no, it isn't worth it. It isn't controversial at all, it is clearly proven not to increase survival. Some folks need to move onto the current drugs and watch and wait is much better than feeling crummy without a benefit. Also, it does ruin fertility and causes depression.
-
- September 17, 2015 at 6:00 pm
Christine, to answer your question, no, it isn't worth it. It isn't controversial at all, it is clearly proven not to increase survival. Some folks need to move onto the current drugs and watch and wait is much better than feeling crummy without a benefit. Also, it does ruin fertility and causes depression.
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- September 18, 2015 at 12:55 am
Many thanks to everyone for their input. You've given me a lot to consider as I weigh a year (or 2, as my surgical oncologist says) of a very low quality of life with seemingly negligible gains in preventing recurrence.
I still don't know what I'm going to do but am leaning toward not doing Interferon and maybe seeking out other options – even naturopathic – in combination with a wait and watch approach.
If anyone has other experiences or advice to share, please do. I want to know about as many real life experiences as possible.
Thanks again, everyone. You are a valuable resource!
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- September 18, 2015 at 12:55 am
Many thanks to everyone for their input. You've given me a lot to consider as I weigh a year (or 2, as my surgical oncologist says) of a very low quality of life with seemingly negligible gains in preventing recurrence.
I still don't know what I'm going to do but am leaning toward not doing Interferon and maybe seeking out other options – even naturopathic – in combination with a wait and watch approach.
If anyone has other experiences or advice to share, please do. I want to know about as many real life experiences as possible.
Thanks again, everyone. You are a valuable resource!
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- September 18, 2015 at 12:55 am
Many thanks to everyone for their input. You've given me a lot to consider as I weigh a year (or 2, as my surgical oncologist says) of a very low quality of life with seemingly negligible gains in preventing recurrence.
I still don't know what I'm going to do but am leaning toward not doing Interferon and maybe seeking out other options – even naturopathic – in combination with a wait and watch approach.
If anyone has other experiences or advice to share, please do. I want to know about as many real life experiences as possible.
Thanks again, everyone. You are a valuable resource!
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- September 18, 2015 at 3:30 am
FAIW, ET's decision not to pursue interferon (and she's not completely closed that door yet) relates as much to age as anything else. We had the same conversation today that we've had on several days prior. Interferon is the only therapy available to her as an FDA approvide adjuvant treatment, with no risk of landing in the placebo group of some clinical trial. That's significant. But we are in a very different place than Justin. Justin is 32 years old, and ET is almost twice his age. He has a wife and two children, ages 5 and 2, and ET's children are grown — Justin's age.
If either ET or I were in Justin's place, I think we would throw about anything we could at the melanoma, including interferon. For some people, the side effects are not balanced against considerations of quality of life or personal suffering. Instead, the end goal is more about being there for their kids — teaching the son to play baseball, walking the daughter down the isle. One dear friend of ours, a young man about Justin's age, with a 2 year old daughter and teenage stepdaughter, is fighting brain cancer with everything he's got. He's very close now to losing his battle, but as long as he can fight, he'll fight. Why? He will tell you straight-up it's for his kids. He's been suffering through chemo while trying to earn as much money as he can to secure his children's future as best he can before he dies. At this point he can barely lift a spoon to feed himself, and yet he is beginning another short round of chemo to see he he can muster any more fight from his haggard body.
The sacrifice you're willing to make for a potential reward really depends on the size of the reward or the magnitude of what's at stake.
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- September 18, 2015 at 3:21 pm
I couldn't have said it better myself!
My children are 5 and 2. I know that if I were to die from this, it would more likely than not be within the next 10 years. My daughter would be 15 at most, and my son would be 12 at most. I wouldn't see them graduate high school, or college. I wouldn't see who they became as adults and what they did for a living. I wouldn't get to hold my grandchildren. So many things I would miss out on…and it just breaks my heart to think about.
I feel like I have SO much at stake in this life, that I made the personal choice to do absolutely anything I could to improve my chances. And I think the negative stories often far outweigh the positive stories on forums because things become a little skewed. The people handling treatment well are out living life while the ones not tolerating treatment well are reaching out for support online.
All the best in your decisions,
Justin
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- September 18, 2015 at 3:21 pm
I couldn't have said it better myself!
My children are 5 and 2. I know that if I were to die from this, it would more likely than not be within the next 10 years. My daughter would be 15 at most, and my son would be 12 at most. I wouldn't see them graduate high school, or college. I wouldn't see who they became as adults and what they did for a living. I wouldn't get to hold my grandchildren. So many things I would miss out on…and it just breaks my heart to think about.
I feel like I have SO much at stake in this life, that I made the personal choice to do absolutely anything I could to improve my chances. And I think the negative stories often far outweigh the positive stories on forums because things become a little skewed. The people handling treatment well are out living life while the ones not tolerating treatment well are reaching out for support online.
All the best in your decisions,
Justin
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- September 18, 2015 at 3:21 pm
I couldn't have said it better myself!
My children are 5 and 2. I know that if I were to die from this, it would more likely than not be within the next 10 years. My daughter would be 15 at most, and my son would be 12 at most. I wouldn't see them graduate high school, or college. I wouldn't see who they became as adults and what they did for a living. I wouldn't get to hold my grandchildren. So many things I would miss out on…and it just breaks my heart to think about.
I feel like I have SO much at stake in this life, that I made the personal choice to do absolutely anything I could to improve my chances. And I think the negative stories often far outweigh the positive stories on forums because things become a little skewed. The people handling treatment well are out living life while the ones not tolerating treatment well are reaching out for support online.
All the best in your decisions,
Justin
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- September 18, 2015 at 3:30 am
FAIW, ET's decision not to pursue interferon (and she's not completely closed that door yet) relates as much to age as anything else. We had the same conversation today that we've had on several days prior. Interferon is the only therapy available to her as an FDA approvide adjuvant treatment, with no risk of landing in the placebo group of some clinical trial. That's significant. But we are in a very different place than Justin. Justin is 32 years old, and ET is almost twice his age. He has a wife and two children, ages 5 and 2, and ET's children are grown — Justin's age.
If either ET or I were in Justin's place, I think we would throw about anything we could at the melanoma, including interferon. For some people, the side effects are not balanced against considerations of quality of life or personal suffering. Instead, the end goal is more about being there for their kids — teaching the son to play baseball, walking the daughter down the isle. One dear friend of ours, a young man about Justin's age, with a 2 year old daughter and teenage stepdaughter, is fighting brain cancer with everything he's got. He's very close now to losing his battle, but as long as he can fight, he'll fight. Why? He will tell you straight-up it's for his kids. He's been suffering through chemo while trying to earn as much money as he can to secure his children's future as best he can before he dies. At this point he can barely lift a spoon to feed himself, and yet he is beginning another short round of chemo to see he he can muster any more fight from his haggard body.
The sacrifice you're willing to make for a potential reward really depends on the size of the reward or the magnitude of what's at stake.
-
- September 18, 2015 at 3:30 am
FAIW, ET's decision not to pursue interferon (and she's not completely closed that door yet) relates as much to age as anything else. We had the same conversation today that we've had on several days prior. Interferon is the only therapy available to her as an FDA approvide adjuvant treatment, with no risk of landing in the placebo group of some clinical trial. That's significant. But we are in a very different place than Justin. Justin is 32 years old, and ET is almost twice his age. He has a wife and two children, ages 5 and 2, and ET's children are grown — Justin's age.
If either ET or I were in Justin's place, I think we would throw about anything we could at the melanoma, including interferon. For some people, the side effects are not balanced against considerations of quality of life or personal suffering. Instead, the end goal is more about being there for their kids — teaching the son to play baseball, walking the daughter down the isle. One dear friend of ours, a young man about Justin's age, with a 2 year old daughter and teenage stepdaughter, is fighting brain cancer with everything he's got. He's very close now to losing his battle, but as long as he can fight, he'll fight. Why? He will tell you straight-up it's for his kids. He's been suffering through chemo while trying to earn as much money as he can to secure his children's future as best he can before he dies. At this point he can barely lift a spoon to feed himself, and yet he is beginning another short round of chemo to see he he can muster any more fight from his haggard body.
The sacrifice you're willing to make for a potential reward really depends on the size of the reward or the magnitude of what's at stake.
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- September 17, 2015 at 3:01 pm
Christine, interferon is always a fun topic on the forum! You can go back over the last couple of years and read dozens of posts on the topic. Why do some people sail through the treatments easily and others like myself get knocked over like they have been hit with a baseball bat. I was fit, active phys-ed and science middle school teacher back in 2012 when I did high dose interferon. By the second day of treatments I was a mess. Now, I compare this to the clinical trial that I have been on for the last 18 months called checkmate 67 of Ipi and Nivolumab. I am able to drive my self to all the treatments and scan appointments, and I have not experienced any of the serious side effects that can happen with the treatments and my tumors have been kept under control. I stopped the Interferon after the high dose phase of 20 treatments over 4 weeks. I felt like I had run the ironman race but most of my time(month) was spent in bed. The good news was that within a month I was back to myself. Would I do it again? No, but that is because I can now look back and have the advantage of hindsight. Do nothing or take something that could be very difficult!!!! The choice today as it was 3 years ago is still a crappy one. Ed
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- September 18, 2015 at 2:27 am
We decided four years ago that the +3% chance of prolonging recurrence was worth it. My husband did 20 rounds over four weeks. For some it's worked, sadly for us it didn't. Now we've done SRS on brain mets, four rounds of IPI and 6 doses of Nivo and found out today he has two more brain mets. Back for more SRS. Next week a PET to see if it's anywhere else. As our oncologist told us, the only thing that is predictable about melanoma, is that it is unpredictable. Best wishes.
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- September 18, 2015 at 2:27 am
We decided four years ago that the +3% chance of prolonging recurrence was worth it. My husband did 20 rounds over four weeks. For some it's worked, sadly for us it didn't. Now we've done SRS on brain mets, four rounds of IPI and 6 doses of Nivo and found out today he has two more brain mets. Back for more SRS. Next week a PET to see if it's anywhere else. As our oncologist told us, the only thing that is predictable about melanoma, is that it is unpredictable. Best wishes.
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- September 18, 2015 at 2:27 am
We decided four years ago that the +3% chance of prolonging recurrence was worth it. My husband did 20 rounds over four weeks. For some it's worked, sadly for us it didn't. Now we've done SRS on brain mets, four rounds of IPI and 6 doses of Nivo and found out today he has two more brain mets. Back for more SRS. Next week a PET to see if it's anywhere else. As our oncologist told us, the only thing that is predictable about melanoma, is that it is unpredictable. Best wishes.
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- September 18, 2015 at 10:05 pm
Again, why play Russian Roulette with your life?. Intron actually lowers your immune system because is nothing like the REAL interferon in your body that occurs naturally. Watch and wait is much better for your immune system, esp if you exercise and eat well.
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- September 21, 2015 at 2:04 pm
You have no idea what you're talking about. Intron A is recombinant interferon alfa-2b. That means it is an exact replicate of the cloned gene for interferon alfa-2b. So, it is EXACTLY like the real interferon that occurs naturally. The gene (from human immune cells) is inserted into bacteria (innocuous E. coli) with a plasmid, and the bacteria become interferon factories. They collect the interferon and purify it from the other components.
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- September 21, 2015 at 2:04 pm
You have no idea what you're talking about. Intron A is recombinant interferon alfa-2b. That means it is an exact replicate of the cloned gene for interferon alfa-2b. So, it is EXACTLY like the real interferon that occurs naturally. The gene (from human immune cells) is inserted into bacteria (innocuous E. coli) with a plasmid, and the bacteria become interferon factories. They collect the interferon and purify it from the other components.
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- September 21, 2015 at 2:04 pm
You have no idea what you're talking about. Intron A is recombinant interferon alfa-2b. That means it is an exact replicate of the cloned gene for interferon alfa-2b. So, it is EXACTLY like the real interferon that occurs naturally. The gene (from human immune cells) is inserted into bacteria (innocuous E. coli) with a plasmid, and the bacteria become interferon factories. They collect the interferon and purify it from the other components.
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- September 18, 2015 at 10:05 pm
Again, why play Russian Roulette with your life?. Intron actually lowers your immune system because is nothing like the REAL interferon in your body that occurs naturally. Watch and wait is much better for your immune system, esp if you exercise and eat well.
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- September 18, 2015 at 10:05 pm
Again, why play Russian Roulette with your life?. Intron actually lowers your immune system because is nothing like the REAL interferon in your body that occurs naturally. Watch and wait is much better for your immune system, esp if you exercise and eat well.
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