momof2kids

It's great to hear of 9 years, cuz honestly I just passed 1 year of diagnosis, straight to Stage IV, and I have little hope of making it that long, I've always looked on the downside of things, so it's hard to change that, but seeing others going that far, it gives me a bit of a push to the HOPES that I can DO THIS, and just maybe my body , and the doctors, and treatments, can help me. 

Just have to hope that each treatment can work, or give that Melanoma a bit of a kick, that the next treatment can kick it a bit futher to the curb…I WANT 9 YEARS….I want to see my kids grow up.  I want to see my youngest start Kindergarten…

Very happy that you've beat the beast this far and hope you continue to!

It's great to hear of 9 years, cuz honestly I just passed 1 year of diagnosis, straight to Stage IV, and I have little hope of making it that long, I've always looked on the downside of things, so it's hard to change that, but seeing others going that far, it gives me a bit of a push to the HOPES that I can DO THIS, and just maybe my body , and the doctors, and treatments, can help me. 

Just have to hope that each treatment can work, or give that Melanoma a bit of a kick, that the next treatment can kick it a bit futher to the curb…I WANT 9 YEARS….I want to see my kids grow up.  I want to see my youngest start Kindergarten…

Very happy that you've beat the beast this far and hope you continue to!

It's great to hear of 9 years, cuz honestly I just passed 1 year of diagnosis, straight to Stage IV, and I have little hope of making it that long, I've always looked on the downside of things, so it's hard to change that, but seeing others going that far, it gives me a bit of a push to the HOPES that I can DO THIS, and just maybe my body , and the doctors, and treatments, can help me. 

Just have to hope that each treatment can work, or give that Melanoma a bit of a kick, that the next treatment can kick it a bit futher to the curb…I WANT 9 YEARS….I want to see my kids grow up.  I want to see my youngest start Kindergarten…

Very happy that you've beat the beast this far and hope you continue to!

I will have to watch this tomorrow when I have more time.  Pissed off I have cancer….but THANKFUL that Yervoy/IPI has worked the last 6 months for me, and hopefully will continue to do so for a lot longer!

I will have to watch this tomorrow when I have more time.  Pissed off I have cancer….but THANKFUL that Yervoy/IPI has worked the last 6 months for me, and hopefully will continue to do so for a lot longer!

I will have to watch this tomorrow when I have more time.  Pissed off I have cancer….but THANKFUL that Yervoy/IPI has worked the last 6 months for me, and hopefully will continue to do so for a lot longer!

It may not be related at all, not sure where you brain tumors are located, mine was directly above my left eye, which before surgery gave me blurry vision.  After surgery, that blurry vision continued, and I kept seeing flashes of colors all the time. My brain doctors never noticed, and sent me home. 

THANKFULLY the eye doctor who checked me out noticed my vision was still way off, and all these numbers they use to test your vision were way off, and they are the ones who sent me back to the hospital for 8 days (had the lumbar drain), which got all the extra fluid out of my head that the brain doctors missed, and after some medication from the eye doctor (diamox I think it was), my eyes are back to normal vision again.

Anyways, I suggest you go see an eye doctor (the kinds that do surgeries, etc), not an "eyeglass" doctor, and have them test your eyes too, as sometimes they can discover things that cancer doctors MISS!

It may not be related at all, not sure where you brain tumors are located, mine was directly above my left eye, which before surgery gave me blurry vision.  After surgery, that blurry vision continued, and I kept seeing flashes of colors all the time. My brain doctors never noticed, and sent me home. 

THANKFULLY the eye doctor who checked me out noticed my vision was still way off, and all these numbers they use to test your vision were way off, and they are the ones who sent me back to the hospital for 8 days (had the lumbar drain), which got all the extra fluid out of my head that the brain doctors missed, and after some medication from the eye doctor (diamox I think it was), my eyes are back to normal vision again.

Anyways, I suggest you go see an eye doctor (the kinds that do surgeries, etc), not an "eyeglass" doctor, and have them test your eyes too, as sometimes they can discover things that cancer doctors MISS!

It may not be related at all, not sure where you brain tumors are located, mine was directly above my left eye, which before surgery gave me blurry vision.  After surgery, that blurry vision continued, and I kept seeing flashes of colors all the time. My brain doctors never noticed, and sent me home. 

THANKFULLY the eye doctor who checked me out noticed my vision was still way off, and all these numbers they use to test your vision were way off, and they are the ones who sent me back to the hospital for 8 days (had the lumbar drain), which got all the extra fluid out of my head that the brain doctors missed, and after some medication from the eye doctor (diamox I think it was), my eyes are back to normal vision again.

Anyways, I suggest you go see an eye doctor (the kinds that do surgeries, etc), not an "eyeglass" doctor, and have them test your eyes too, as sometimes they can discover things that cancer doctors MISS!

Lisa, I'm SO sorry to hear of the continued brain tumor problems,  if they recommend the WBR, go for it, especially with the one that continues growing.  I know they like to get the smaller ones with the Gamma KNife and the brain tumors do have to be in a good spot for them to go into the brain via surgery, otherwise you'd end up with other life altering side effects that we don't want to even talk about. 

I agree on the IL-2 or the Anti PD1, as someone else on the board here told me the same thing, that one of those two after successful Yervoy (shrinking your other tumors) can be a double dose of medicine for the tumors, and especially this stupid brain tumors.

I don't know what else to say, I know there's no comfort any of us can give with this hell you are going thru right now with the brain tumors.  I missed other posts, but who is handling your brain tumor treatments, a neurosurgeon or a regular Melanoma doctor?  Make sure it's a neurosurgeon of course if it isn't already.    I think the IL-2 as well shows quick effects, like after so many doses, they can re-scan you to see if there is shrinkage, I don't think it takes months of it to show shrinkage if it works.

Lisa, I'm SO sorry to hear of the continued brain tumor problems,  if they recommend the WBR, go for it, especially with the one that continues growing.  I know they like to get the smaller ones with the Gamma KNife and the brain tumors do have to be in a good spot for them to go into the brain via surgery, otherwise you'd end up with other life altering side effects that we don't want to even talk about. 

I agree on the IL-2 or the Anti PD1, as someone else on the board here told me the same thing, that one of those two after successful Yervoy (shrinking your other tumors) can be a double dose of medicine for the tumors, and especially this stupid brain tumors.

I don't know what else to say, I know there's no comfort any of us can give with this hell you are going thru right now with the brain tumors.  I missed other posts, but who is handling your brain tumor treatments, a neurosurgeon or a regular Melanoma doctor?  Make sure it's a neurosurgeon of course if it isn't already.    I think the IL-2 as well shows quick effects, like after so many doses, they can re-scan you to see if there is shrinkage, I don't think it takes months of it to show shrinkage if it works.

Lisa, I'm SO sorry to hear of the continued brain tumor problems,  if they recommend the WBR, go for it, especially with the one that continues growing.  I know they like to get the smaller ones with the Gamma KNife and the brain tumors do have to be in a good spot for them to go into the brain via surgery, otherwise you'd end up with other life altering side effects that we don't want to even talk about. 

I agree on the IL-2 or the Anti PD1, as someone else on the board here told me the same thing, that one of those two after successful Yervoy (shrinking your other tumors) can be a double dose of medicine for the tumors, and especially this stupid brain tumors.

I don't know what else to say, I know there's no comfort any of us can give with this hell you are going thru right now with the brain tumors.  I missed other posts, but who is handling your brain tumor treatments, a neurosurgeon or a regular Melanoma doctor?  Make sure it's a neurosurgeon of course if it isn't already.    I think the IL-2 as well shows quick effects, like after so many doses, they can re-scan you to see if there is shrinkage, I don't think it takes months of it to show shrinkage if it works.

Ok, just be very careful if you are flying, when I had my large brain tumor in June 2011 (before I knew I had a brain tumor or Melanoma), I threw up on every flight I had (like 5 of them) and thought "this is weird", and then passed out for an entire day after flying one time.  So, just make sure you're prepared, incase the brain isn't too fond of the flying!!

hopefully that blood will disappear so they can Gamma Knife it, I myself want to avoid Whole Brain as long as possible at some point, much rather do Gamma Knife (never had any side effects from that).

Ok, just be very careful if you are flying, when I had my large brain tumor in June 2011 (before I knew I had a brain tumor or Melanoma), I threw up on every flight I had (like 5 of them) and thought "this is weird", and then passed out for an entire day after flying one time.  So, just make sure you're prepared, incase the brain isn't too fond of the flying!!

hopefully that blood will disappear so they can Gamma Knife it, I myself want to avoid Whole Brain as long as possible at some point, much rather do Gamma Knife (never had any side effects from that).

Ok, just be very careful if you are flying, when I had my large brain tumor in June 2011 (before I knew I had a brain tumor or Melanoma), I threw up on every flight I had (like 5 of them) and thought "this is weird", and then passed out for an entire day after flying one time.  So, just make sure you're prepared, incase the brain isn't too fond of the flying!!

hopefully that blood will disappear so they can Gamma Knife it, I myself want to avoid Whole Brain as long as possible at some point, much rather do Gamma Knife (never had any side effects from that).