› Forums › General Melanoma Community › Joslyn in Ottawa NED: Interferon or not
- This topic has 20 replies, 7 voices, and was last updated 12 years, 10 months ago by
nicoli.
- Post
-
- June 30, 2011 at 6:20 pm
Well I met with the oncologist today. I am offered two options:
a) monitoring and follow up
b) standard interferon protocol
There is a possibility of the ipi trial at McGill for which I may be eligible. I need to learn about ipi, its benefits and side effects. ùmy oncologist would refer me there if I am interested.Well I met with the oncologist today. I am offered two options:
a) monitoring and follow up
b) standard interferon protocol
There is a possibility of the ipi trial at McGill for which I may be eligible. I need to learn about ipi, its benefits and side effects. ùmy oncologist would refer me there if I am interested.Does anyone have info on trails for the use of ipi for prevetion of recurrence in stage III and the side effects and benefits
I need to let him know next week. If I choose the interferon it would commence as soon as I am deemed to be healed from my most recent surgery.
I intend to think it through but at this point, I see myself declining the interferon treatment and proceeding with the monitoring approach by the cancer treatment team and keep my eyes open for interesting trials. I will support the monitoring by the cancer centre with my own monitoring, my dermatologist's and that of my family doctor. In addition, I will be supported by my naturopathic doctor.
I am a very healthy person who looks after herself from both a nutritional and fitness perspective. I goes against my nature to take something that would both in the short and long term damage my overall health in hopes of delaying the chance of recurrance by a few months. I have the additional anxiety of being at high risk for breast cancer. I am closely monitored for that as well. My heart says stay strong and watch for a better medical treatment.
I welcome any thoughts and experiences, particularly from those who have declined interfereon. What percentage of stage IIIa patients refuse it?
- Replies
-
-
- June 30, 2011 at 6:39 pm
I am stage 3a and opted to wait and watch. My reasoning was that since interferon would only give me a 3-7% advantage and at that time only the one year protocal was being offered, I would rather have one very good year. The clincher was when the doc said that interferon did not prolong life expectancy. To me that made it a no win situation. I am now 15 monthe NED!
Mary
Stage 3
-
- June 30, 2011 at 6:59 pm
Hi Joslyn,
I entered in the Montreal ipi trial in April rather than Interferon. The numbers wern't all that great for Interferon and at the time, ipi was the drug that was the frontrunner for me. I too asked alot of people what their thoughts would be and they said if I entered the trial, I would be monitored very closey. Thank God I entered that trial because during my screening process, they found mets in my lungs. I'm now Stage 4 from Stage 3c and if it wasn't for that trial, I'd still be waiting for a scan. This certainly may not be your story, but entering in a trial, you can be sure that you're monitored more than you would if you were on "watch and wait". Besides, if you're comfortable with watch and wait, clinical trials are a great choice and the drugs are newer and more effective. If you can get the drug in your trial, it could show promise to keep you NED for months or years from now.
That being said, lots of people have had success with Interferon, but you have no idea if you'll be one of them. It's such a personal decision, but I whatever you choose, I wish you all the very best.
Lisa
-
- June 30, 2011 at 7:11 pm
Hi Lisa!
The trail in Montreal intereests me. Are you an actual participant or were you removed from the trail because of the test results.
What are the objectives of the trail? Did you undergo any treatments? I understand that it is a double blind trial. Do you know if you were actually in the treatment arm?
-
- June 30, 2011 at 8:39 pm
Hi Joselyn,
They called me a week after my screening process to tell me my CT revealed lung nodules therefore I wasn't in the trial. You have to be NED to participate in the doubled blind trial. The objective was to see if ipi works in an adjuvent setting and how long you remain NED for. It's a 3 year trial with 4 infusions every 3 weeks and then a maintenance phase every 28 days (I think).
I didn't have any treatments. I spent 2 days in Montreal going through a screening process – questionnaire, physical, blood work and scans. They talk to you about the trial and potential side effects and they tell you you'll be watched like a hawk through the trial – this made me feel good. After my 2 days, they said they would call me to let me know when I'd be coming back to start (approx 2 weeks). My oncologist called me a week later to tell me the bad news. I was devastated! I had no idea I'd move to Stage 4 so quickly, so I'm doing dacarbazine right now and if it fails (which I hope it doesn't) I will do ipi. I wouldn't have known anything about my lung mets had it not been for the trial as my scans were set for June 28th in Toronto. Thankfully they were found early and were all very small (less than a cm).
I was comfortable with watch and wait and so was my oncologist as he didn't think it would be coming back anytime soon. I was to get either the placebo or the drug, but knew if I had side effects, that I'd have the drug. I didn't want to go through a year of being sick on Interferon with only an 11% chance it would keep my melanoma from coming back.
Lisa
-
- June 30, 2011 at 8:39 pm
Hi Joselyn,
They called me a week after my screening process to tell me my CT revealed lung nodules therefore I wasn't in the trial. You have to be NED to participate in the doubled blind trial. The objective was to see if ipi works in an adjuvent setting and how long you remain NED for. It's a 3 year trial with 4 infusions every 3 weeks and then a maintenance phase every 28 days (I think).
I didn't have any treatments. I spent 2 days in Montreal going through a screening process – questionnaire, physical, blood work and scans. They talk to you about the trial and potential side effects and they tell you you'll be watched like a hawk through the trial – this made me feel good. After my 2 days, they said they would call me to let me know when I'd be coming back to start (approx 2 weeks). My oncologist called me a week later to tell me the bad news. I was devastated! I had no idea I'd move to Stage 4 so quickly, so I'm doing dacarbazine right now and if it fails (which I hope it doesn't) I will do ipi. I wouldn't have known anything about my lung mets had it not been for the trial as my scans were set for June 28th in Toronto. Thankfully they were found early and were all very small (less than a cm).
I was comfortable with watch and wait and so was my oncologist as he didn't think it would be coming back anytime soon. I was to get either the placebo or the drug, but knew if I had side effects, that I'd have the drug. I didn't want to go through a year of being sick on Interferon with only an 11% chance it would keep my melanoma from coming back.
Lisa
-
- June 30, 2011 at 7:11 pm
Hi Lisa!
The trail in Montreal intereests me. Are you an actual participant or were you removed from the trail because of the test results.
What are the objectives of the trail? Did you undergo any treatments? I understand that it is a double blind trial. Do you know if you were actually in the treatment arm?
-
- June 30, 2011 at 6:59 pm
Hi Joslyn,
I entered in the Montreal ipi trial in April rather than Interferon. The numbers wern't all that great for Interferon and at the time, ipi was the drug that was the frontrunner for me. I too asked alot of people what their thoughts would be and they said if I entered the trial, I would be monitored very closey. Thank God I entered that trial because during my screening process, they found mets in my lungs. I'm now Stage 4 from Stage 3c and if it wasn't for that trial, I'd still be waiting for a scan. This certainly may not be your story, but entering in a trial, you can be sure that you're monitored more than you would if you were on "watch and wait". Besides, if you're comfortable with watch and wait, clinical trials are a great choice and the drugs are newer and more effective. If you can get the drug in your trial, it could show promise to keep you NED for months or years from now.
That being said, lots of people have had success with Interferon, but you have no idea if you'll be one of them. It's such a personal decision, but I whatever you choose, I wish you all the very best.
Lisa
-
- June 30, 2011 at 6:39 pm
I am stage 3a and opted to wait and watch. My reasoning was that since interferon would only give me a 3-7% advantage and at that time only the one year protocal was being offered, I would rather have one very good year. The clincher was when the doc said that interferon did not prolong life expectancy. To me that made it a no win situation. I am now 15 monthe NED!
Mary
Stage 3
-
- July 1, 2011 at 1:16 am
I would do the wait option. I opted for the Interferon treatment and I was absolutely disappointed as well as have permanent side effects from this drug. I wish I had waited.
CKasper
-
- July 1, 2011 at 7:38 am
I was originally dx @ stage 3 in 6/00. I had microscopic amounts of mm in my sentinel node and the remaining 17 were clean. I went through a year of the Interferon treatment with managable side effects. The beginning of this month I hit 11 years of NED. Was it the surgery? Was it Interferon? Would I have been fine had I done nothing? Who knows!
What I am sure of is that with my personality if the melanoma ever returns, I would feel guilty if I had done nothing. The advice I have given since my dx is to please look into other options. However if you are thinking of doing nothing because of the "horrible" side effects of Interferon, please keep in mind there are many people out there that get through the year just fine and don't have lingering side effects. For me, I did have a head ache for the majority of the year. And seemed to be nauseous a lot! However, I was able to continue working as an accountant for 30-35 hours a week and keep up with the regular routines of my kids who were 5 & 7 at the time. A person can always just do 1 month if they don't feel like they can get through the whole year.
Whatever you decide, stand behind your decision 110% and never look back. You can never win the could have, should have, would have game.
Best of luck!
Cara Tindell
-
- July 1, 2011 at 7:38 am
I was originally dx @ stage 3 in 6/00. I had microscopic amounts of mm in my sentinel node and the remaining 17 were clean. I went through a year of the Interferon treatment with managable side effects. The beginning of this month I hit 11 years of NED. Was it the surgery? Was it Interferon? Would I have been fine had I done nothing? Who knows!
What I am sure of is that with my personality if the melanoma ever returns, I would feel guilty if I had done nothing. The advice I have given since my dx is to please look into other options. However if you are thinking of doing nothing because of the "horrible" side effects of Interferon, please keep in mind there are many people out there that get through the year just fine and don't have lingering side effects. For me, I did have a head ache for the majority of the year. And seemed to be nauseous a lot! However, I was able to continue working as an accountant for 30-35 hours a week and keep up with the regular routines of my kids who were 5 & 7 at the time. A person can always just do 1 month if they don't feel like they can get through the whole year.
Whatever you decide, stand behind your decision 110% and never look back. You can never win the could have, should have, would have game.
Best of luck!
Cara Tindell
-
- July 4, 2011 at 10:57 pm
I've made my decision and I'm very comfortable with it.
I'm not going to take the interferon treatment. I've also done my research on ipi and I won't be pursuing the clinical trial either. The potential damaging effects are not worth the limited potential benefit.
However, from my perspective, I am pursuing treatment. It is good nutrition, exercise, professional lymphedema risk management, professional naturopathic support and a strong spiritual foundation.
I will continue to work with my medical team for close monitoring on a regular basis. I'll watch with great interest any developments from the research. Perhaps something will emerge that offers a better option for stage IIIa.
Should there be a recurrence, I will be strong in health and mind to take it on, with my entire team behind me.
-
- July 5, 2011 at 2:48 am
This is a good decision. If and when (God forbid) you go to Stage 4, there will be system chemicals to try. For now, keep your system as healthy as you can, and if a recurrence happens you can fight it bit by bit, surgery by surgery.
At the risk of sounding like a hypocrite, I did a little interferon, and also biochemo (almost killed me). I came to the decision to forgo chemicals until Stage 4 honestly!
Nicki, Stage 3b
-
- July 5, 2011 at 2:48 am
This is a good decision. If and when (God forbid) you go to Stage 4, there will be system chemicals to try. For now, keep your system as healthy as you can, and if a recurrence happens you can fight it bit by bit, surgery by surgery.
At the risk of sounding like a hypocrite, I did a little interferon, and also biochemo (almost killed me). I came to the decision to forgo chemicals until Stage 4 honestly!
Nicki, Stage 3b
-
- July 4, 2011 at 10:57 pm
I've made my decision and I'm very comfortable with it.
I'm not going to take the interferon treatment. I've also done my research on ipi and I won't be pursuing the clinical trial either. The potential damaging effects are not worth the limited potential benefit.
However, from my perspective, I am pursuing treatment. It is good nutrition, exercise, professional lymphedema risk management, professional naturopathic support and a strong spiritual foundation.
I will continue to work with my medical team for close monitoring on a regular basis. I'll watch with great interest any developments from the research. Perhaps something will emerge that offers a better option for stage IIIa.
Should there be a recurrence, I will be strong in health and mind to take it on, with my entire team behind me.
-
- You must be logged in to reply to this topic.