sailinjeffnk

Matt, I did both radiation and interferon in summer 2012 after having a very similar procedure to yours.  I ended up having a met in my lungs after all that and have had surgery and Ipi afterward and I have had good scans since my lung surgery.

From that experience I would say that I would enter the Ipi v. Interferon trial and hope for Ipi.  If you get randomized to interferon you can make a personal decision about doing it or not.  These drugs effect everyone differently and you may be able to tolerate the interferon better than I could — it knocked me out of of comission (28 y.o. male during Interferon).  I was able to work full time during Ipi with moderate fatigue for the week after each infusion.

I would keep the braf drugs in your back pocket in case you need them later.

Matt, I did both radiation and interferon in summer 2012 after having a very similar procedure to yours.  I ended up having a met in my lungs after all that and have had surgery and Ipi afterward and I have had good scans since my lung surgery.

From that experience I would say that I would enter the Ipi v. Interferon trial and hope for Ipi.  If you get randomized to interferon you can make a personal decision about doing it or not.  These drugs effect everyone differently and you may be able to tolerate the interferon better than I could — it knocked me out of of comission (28 y.o. male during Interferon).  I was able to work full time during Ipi with moderate fatigue for the week after each infusion.

I would keep the braf drugs in your back pocket in case you need them later.

Matt, I did both radiation and interferon in summer 2012 after having a very similar procedure to yours.  I ended up having a met in my lungs after all that and have had surgery and Ipi afterward and I have had good scans since my lung surgery.

From that experience I would say that I would enter the Ipi v. Interferon trial and hope for Ipi.  If you get randomized to interferon you can make a personal decision about doing it or not.  These drugs effect everyone differently and you may be able to tolerate the interferon better than I could — it knocked me out of of comission (28 y.o. male during Interferon).  I was able to work full time during Ipi with moderate fatigue for the week after each infusion.

I would keep the braf drugs in your back pocket in case you need them later.

I just received my third dose of Ipi this past Monday.  So far my side effects have been totally tolerable.  Some issues with occasional loose stools (I'm skipping anything spicy as that seems to cause issues) and I've got some stuffy sinuses which may or may not be related but I typically don't catch colds so I'm inclined to think it's somehow related.  I also get a bit of fatigue for the week or so after the infusion.

So far so good!  WAY easier to handle than Interferon (so far!).

I just received my third dose of Ipi this past Monday.  So far my side effects have been totally tolerable.  Some issues with occasional loose stools (I'm skipping anything spicy as that seems to cause issues) and I've got some stuffy sinuses which may or may not be related but I typically don't catch colds so I'm inclined to think it's somehow related.  I also get a bit of fatigue for the week or so after the infusion.

So far so good!  WAY easier to handle than Interferon (so far!).

I just received my third dose of Ipi this past Monday.  So far my side effects have been totally tolerable.  Some issues with occasional loose stools (I'm skipping anything spicy as that seems to cause issues) and I've got some stuffy sinuses which may or may not be related but I typically don't catch colds so I'm inclined to think it's somehow related.  I also get a bit of fatigue for the week or so after the infusion.

So far so good!  WAY easier to handle than Interferon (so far!).

I have been treated by Dr. Reddy and his team at Stanford.  Great quality of care and he's very knowledgable.

I have been treated by Dr. Reddy and his team at Stanford.  Great quality of care and he's very knowledgable.

I have been treated by Dr. Reddy and his team at Stanford.  Great quality of care and he's very knowledgable.

Matt,

I had a very similar surgery to yours in May of 2012.  I followed it up with radiation and then with interferon.  The radiation wasn't too bad, I didn't have much of an appetite while I got it.  I can't grow a beard on that side anymore.  I remember there was some sunburn like pain and then some shedding of that skin and some pretty bad throat irritation and some nasty mucous but overall it wasn't too bad.

I would say go for the Ipi trial.  I just finished up my 4th dose of that a month ago and it was a walk in the park compared to Interferon.

Best of luck! And hope you have a good support team at home to help you through the next few months. 

Matt,

I had a very similar surgery to yours in May of 2012.  I followed it up with radiation and then with interferon.  The radiation wasn't too bad, I didn't have much of an appetite while I got it.  I can't grow a beard on that side anymore.  I remember there was some sunburn like pain and then some shedding of that skin and some pretty bad throat irritation and some nasty mucous but overall it wasn't too bad.

I would say go for the Ipi trial.  I just finished up my 4th dose of that a month ago and it was a walk in the park compared to Interferon.

Best of luck! And hope you have a good support team at home to help you through the next few months. 

Matt,

I had a very similar surgery to yours in May of 2012.  I followed it up with radiation and then with interferon.  The radiation wasn't too bad, I didn't have much of an appetite while I got it.  I can't grow a beard on that side anymore.  I remember there was some sunburn like pain and then some shedding of that skin and some pretty bad throat irritation and some nasty mucous but overall it wasn't too bad.

I would say go for the Ipi trial.  I just finished up my 4th dose of that a month ago and it was a walk in the park compared to Interferon.

Best of luck! And hope you have a good support team at home to help you through the next few months. 

Matt, I have taken both interferon and will get my 4th dose of 3mg/kg Ipi on Monday.  Ipi has been MUCH easier to deal with.  The fatigue from interferon was awful.  I get slight fatigue from Ipi but I am still able to work full time and have not run into any other side effects besides occasional loose stools which always go away with imodium.

I would also not worry too much about the severe side effects with ipi, as the doctors are much more aware of what they are and what to watch for.  They should be watching you like a hawk and will have corrective actions ready for you if you should start to see something that might become dangerous.

Looking back, I wish I had done the ipi/interferon trial when I was stage iiic, but I decided to go for interferon as I was afraid of the scary ipi side-effects.

For reference, I'm a 29 YO male.

Matt, I have taken both interferon and will get my 4th dose of 3mg/kg Ipi on Monday.  Ipi has been MUCH easier to deal with.  The fatigue from interferon was awful.  I get slight fatigue from Ipi but I am still able to work full time and have not run into any other side effects besides occasional loose stools which always go away with imodium.

I would also not worry too much about the severe side effects with ipi, as the doctors are much more aware of what they are and what to watch for.  They should be watching you like a hawk and will have corrective actions ready for you if you should start to see something that might become dangerous.

Looking back, I wish I had done the ipi/interferon trial when I was stage iiic, but I decided to go for interferon as I was afraid of the scary ipi side-effects.

For reference, I'm a 29 YO male.

Matt, I have taken both interferon and will get my 4th dose of 3mg/kg Ipi on Monday.  Ipi has been MUCH easier to deal with.  The fatigue from interferon was awful.  I get slight fatigue from Ipi but I am still able to work full time and have not run into any other side effects besides occasional loose stools which always go away with imodium.

I would also not worry too much about the severe side effects with ipi, as the doctors are much more aware of what they are and what to watch for.  They should be watching you like a hawk and will have corrective actions ready for you if you should start to see something that might become dangerous.

Looking back, I wish I had done the ipi/interferon trial when I was stage iiic, but I decided to go for interferon as I was afraid of the scary ipi side-effects.

For reference, I'm a 29 YO male.