mel123

For what it's worth, I'm stage 3B, and I've had 6/8 infusions of Ipi (low dose as part of the clinical trial comparing it to interferon) and not one side effect. I ran 2 half marathons after starting the induction phase, one of them 2 days after a treatment, and continue to work out 4-6 days a week, and have had zero problems with it. Everyone can't say the same unfortunately, but I seriously doubt anyone has done interferon and felt that great. Most people don't make it through the entire year. If I had been given the interferon in the trial, I was willing to give it a shot, and they said since I'm pretty healthy otherwise, it would be easier on me, but I'd never choose it over the ipilimumab! I was totally on board with the interferon until my oncologist told me it has a 3-5% success rate. I'm older than you (35) but in the cancer world, still considered pretty young 🙂

I'm sure this has probably been said at least 5 times, I didn't read all the comments – but make sure you are seeing a melanoma specialist!! A lot of oncologists are not up to date on melanoma because it seems to be much different than other types of cancer. I really feel like your oncologist has the 2 meds backwards, based on my experience and everything I've read.

All that being said, it's your decision and yours only, once you make it, don't feel bad about it. Best of luck to you! Feel free to contact me if you have questions!

Melissa

For what it's worth, I'm stage 3B, and I've had 6/8 infusions of Ipi (low dose as part of the clinical trial comparing it to interferon) and not one side effect. I ran 2 half marathons after starting the induction phase, one of them 2 days after a treatment, and continue to work out 4-6 days a week, and have had zero problems with it. Everyone can't say the same unfortunately, but I seriously doubt anyone has done interferon and felt that great. Most people don't make it through the entire year. If I had been given the interferon in the trial, I was willing to give it a shot, and they said since I'm pretty healthy otherwise, it would be easier on me, but I'd never choose it over the ipilimumab! I was totally on board with the interferon until my oncologist told me it has a 3-5% success rate. I'm older than you (35) but in the cancer world, still considered pretty young 🙂

I'm sure this has probably been said at least 5 times, I didn't read all the comments – but make sure you are seeing a melanoma specialist!! A lot of oncologists are not up to date on melanoma because it seems to be much different than other types of cancer. I really feel like your oncologist has the 2 meds backwards, based on my experience and everything I've read.

All that being said, it's your decision and yours only, once you make it, don't feel bad about it. Best of luck to you! Feel free to contact me if you have questions!

Melissa

For what it's worth, I'm stage 3B, and I've had 6/8 infusions of Ipi (low dose as part of the clinical trial comparing it to interferon) and not one side effect. I ran 2 half marathons after starting the induction phase, one of them 2 days after a treatment, and continue to work out 4-6 days a week, and have had zero problems with it. Everyone can't say the same unfortunately, but I seriously doubt anyone has done interferon and felt that great. Most people don't make it through the entire year. If I had been given the interferon in the trial, I was willing to give it a shot, and they said since I'm pretty healthy otherwise, it would be easier on me, but I'd never choose it over the ipilimumab! I was totally on board with the interferon until my oncologist told me it has a 3-5% success rate. I'm older than you (35) but in the cancer world, still considered pretty young 🙂

I'm sure this has probably been said at least 5 times, I didn't read all the comments – but make sure you are seeing a melanoma specialist!! A lot of oncologists are not up to date on melanoma because it seems to be much different than other types of cancer. I really feel like your oncologist has the 2 meds backwards, based on my experience and everything I've read.

All that being said, it's your decision and yours only, once you make it, don't feel bad about it. Best of luck to you! Feel free to contact me if you have questions!

Melissa

I think it's nice to share information here that others may want to be aware of. Unfortunately there are many times I come to read these boards and find sad news. If I don't want to read any sad news, then I probably should stay away from any and all news sources, and especially cancer related message boards and blogs. What I wish is that people would stop being so negative and finding something wrong with everything. It makes me want to stop reading these boards, which is kind of sad. And, for the record, it is true, I follow the family on Facebook and the news was shared there. 

As far as worrying about having melanoma and planning pregnancy, it's a fact that it can pass through the placenta, although it rarely happens. There is no reason to pretend that it isn't true. It doesn't mean that someone who's had melanoma should give up on having children, but it's something a future mother and father should know, understand, and come to terms with, just like any other risk of pregnancy. Just like with our medical care, it's up to each of us to be informed and advocate for ourselves, so why would family planning be any different? 

Thank you Sherron for sharing, and I'm sorry that some people insist on finding fault with something that clearly had no cruel intentions. It is a very sad story, my heart is breaking for this family that has lost Briana (mom) a little over a year ago and now little Addison. 

I think it's nice to share information here that others may want to be aware of. Unfortunately there are many times I come to read these boards and find sad news. If I don't want to read any sad news, then I probably should stay away from any and all news sources, and especially cancer related message boards and blogs. What I wish is that people would stop being so negative and finding something wrong with everything. It makes me want to stop reading these boards, which is kind of sad. And, for the record, it is true, I follow the family on Facebook and the news was shared there. 

As far as worrying about having melanoma and planning pregnancy, it's a fact that it can pass through the placenta, although it rarely happens. There is no reason to pretend that it isn't true. It doesn't mean that someone who's had melanoma should give up on having children, but it's something a future mother and father should know, understand, and come to terms with, just like any other risk of pregnancy. Just like with our medical care, it's up to each of us to be informed and advocate for ourselves, so why would family planning be any different? 

Thank you Sherron for sharing, and I'm sorry that some people insist on finding fault with something that clearly had no cruel intentions. It is a very sad story, my heart is breaking for this family that has lost Briana (mom) a little over a year ago and now little Addison. 

I think it's nice to share information here that others may want to be aware of. Unfortunately there are many times I come to read these boards and find sad news. If I don't want to read any sad news, then I probably should stay away from any and all news sources, and especially cancer related message boards and blogs. What I wish is that people would stop being so negative and finding something wrong with everything. It makes me want to stop reading these boards, which is kind of sad. And, for the record, it is true, I follow the family on Facebook and the news was shared there. 

As far as worrying about having melanoma and planning pregnancy, it's a fact that it can pass through the placenta, although it rarely happens. There is no reason to pretend that it isn't true. It doesn't mean that someone who's had melanoma should give up on having children, but it's something a future mother and father should know, understand, and come to terms with, just like any other risk of pregnancy. Just like with our medical care, it's up to each of us to be informed and advocate for ourselves, so why would family planning be any different? 

Thank you Sherron for sharing, and I'm sorry that some people insist on finding fault with something that clearly had no cruel intentions. It is a very sad story, my heart is breaking for this family that has lost Briana (mom) a little over a year ago and now little Addison. 

Yay for you Jen! I'm celebrating 1 year today so I love seeing stories like yours because I want to go on to celebrate 2, 5, 10, 20, 50 years NED 🙂 And congrats on your Shape mag article! 

Yay for you Jen! I'm celebrating 1 year today so I love seeing stories like yours because I want to go on to celebrate 2, 5, 10, 20, 50 years NED 🙂 And congrats on your Shape mag article! 

Yay for you Jen! I'm celebrating 1 year today so I love seeing stories like yours because I want to go on to celebrate 2, 5, 10, 20, 50 years NED 🙂 And congrats on your Shape mag article! 

I'm in that trial, and got randomized into the arm with low dose ipi. In October I'll have my 7th of 8 doses. I have had zero side effects.

I know I'm very fortunate but my lifestyle hasn't been affected at all, except for spending a little bit of time at Mayo Clinic every 3 weeks at first, then every 12. I continue to work full time, and work a 2nd job at the gym, work out/run, go out with friends, etc. I highly doubt I would have been able to do all of this on interferon.

My theory on going for the trial was, I was willing to try interferon if I were randomized into that arm, but why not try to get a new medicine that could and probably will work better, and have less side effects? Not that there aren't side effects with ipi, but they seem to be less than interferon, and I've learned over the last year or so that very few people make it through the entire year of interferon.

The problem with being where you are is, you're so overwhelmed with all this new information, I was there just a little over a year ago, hadn't found this site yet, and didn't know what to do. I didn't want to be a guinea pig for a new medicine, didn't want to be sick for a year on interferon, but didn't want to do nothing either!

Best of luck to you with your decisions, and with the trial if you choose to enter it!

Melissa

I'm in that trial, and got randomized into the arm with low dose ipi. In October I'll have my 7th of 8 doses. I have had zero side effects.

I know I'm very fortunate but my lifestyle hasn't been affected at all, except for spending a little bit of time at Mayo Clinic every 3 weeks at first, then every 12. I continue to work full time, and work a 2nd job at the gym, work out/run, go out with friends, etc. I highly doubt I would have been able to do all of this on interferon.

My theory on going for the trial was, I was willing to try interferon if I were randomized into that arm, but why not try to get a new medicine that could and probably will work better, and have less side effects? Not that there aren't side effects with ipi, but they seem to be less than interferon, and I've learned over the last year or so that very few people make it through the entire year of interferon.

The problem with being where you are is, you're so overwhelmed with all this new information, I was there just a little over a year ago, hadn't found this site yet, and didn't know what to do. I didn't want to be a guinea pig for a new medicine, didn't want to be sick for a year on interferon, but didn't want to do nothing either!

Best of luck to you with your decisions, and with the trial if you choose to enter it!

Melissa

I'm in that trial, and got randomized into the arm with low dose ipi. In October I'll have my 7th of 8 doses. I have had zero side effects.

I know I'm very fortunate but my lifestyle hasn't been affected at all, except for spending a little bit of time at Mayo Clinic every 3 weeks at first, then every 12. I continue to work full time, and work a 2nd job at the gym, work out/run, go out with friends, etc. I highly doubt I would have been able to do all of this on interferon.

My theory on going for the trial was, I was willing to try interferon if I were randomized into that arm, but why not try to get a new medicine that could and probably will work better, and have less side effects? Not that there aren't side effects with ipi, but they seem to be less than interferon, and I've learned over the last year or so that very few people make it through the entire year of interferon.

The problem with being where you are is, you're so overwhelmed with all this new information, I was there just a little over a year ago, hadn't found this site yet, and didn't know what to do. I didn't want to be a guinea pig for a new medicine, didn't want to be sick for a year on interferon, but didn't want to do nothing either!

Best of luck to you with your decisions, and with the trial if you choose to enter it!

Melissa