LBN

I don't think any of these immunology drugs pass into the brain.

I was on the GSK braf for six months and it was working beautifully. I felt good and the 100+ mets on my leg were all getting smaller. Then almost exactly at the 6 month mark my scan showed 2 brain stem mets and 1 bone met in my upper body, along with some large mets on my leg that looked different than the others that had been responding to the braf.

After a few excisions and lots of radition, I have been told I cannot go back on the GSK braf because it does not cross into the brain and would not be helpful to me at this point. I am on my second round of temodar and I feel like crap but it appears to be working. I do not have follow up scans for 3 more weeks. Will know more then.

I don't think any of these immunology drugs pass into the brain.

I was on the GSK braf for six months and it was working beautifully. I felt good and the 100+ mets on my leg were all getting smaller. Then almost exactly at the 6 month mark my scan showed 2 brain stem mets and 1 bone met in my upper body, along with some large mets on my leg that looked different than the others that had been responding to the braf.

After a few excisions and lots of radition, I have been told I cannot go back on the GSK braf because it does not cross into the brain and would not be helpful to me at this point. I am on my second round of temodar and I feel like crap but it appears to be working. I do not have follow up scans for 3 more weeks. Will know more then.

Hope it all went well for you! I have had two gamma knife sessions in the past two weeks for my two brain mets. I am also having radiation for other tumors at the same time and finish up with them tomorrow. I had no down time at all and did not lose any hair in the process. They did start me on Temodor but so far I am able to handle it. I am now not able to start up the esai trial I was hoping to start becasue of the the brain mets. Not sure what my next step is going to be. Hope you get to start your trial after this is all done.

Hope it all went well for you! I have had two gamma knife sessions in the past two weeks for my two brain mets. I am also having radiation for other tumors at the same time and finish up with them tomorrow. I had no down time at all and did not lose any hair in the process. They did start me on Temodor but so far I am able to handle it. I am now not able to start up the esai trial I was hoping to start becasue of the the brain mets. Not sure what my next step is going to be. Hope you get to start your trial after this is all done.

I have just started Temodor. I have only been on it for 3 days so far and have yet to have any significant side effects. I am Stage 4 with hundreds of subcuteneous and cuteneous tumors one leg, bone mets and 2 brain stem mets. I have undergone one brain radiosurgey and will have my next one next week. I have failed on three trials so far – MART 1, ipi and now braf. I am curious to see what responses you get to the temodor question. They have me on for 6 weeks and then off for two. Keep us posted on how this works for your wife.

Laurie

I have just started Temodor. I have only been on it for 3 days so far and have yet to have any significant side effects. I am Stage 4 with hundreds of subcuteneous and cuteneous tumors one leg, bone mets and 2 brain stem mets. I have undergone one brain radiosurgey and will have my next one next week. I have failed on three trials so far – MART 1, ipi and now braf. I am curious to see what responses you get to the temodor question. They have me on for 6 weeks and then off for two. Keep us posted on how this works for your wife.

Laurie

Hi Jan,

I just read through all your posts with a trepidation since I am currently on the BRAF at UCLA. I assume that your husband was on the PLX trial if he had been on it for a year. I am on the GSK trial that started last Septmeber. I am still responding with no knowledge of how long it will last. I have already done IPI with no results. I actually progressed while on IPI. I wish you and your husband all the luck out there that this next trial will be more durable.

Laurie

Hi Jan,

I just read through all your posts with a trepidation since I am currently on the BRAF at UCLA. I assume that your husband was on the PLX trial if he had been on it for a year. I am on the GSK trial that started last Septmeber. I am still responding with no knowledge of how long it will last. I have already done IPI with no results. I actually progressed while on IPI. I wish you and your husband all the luck out there that this next trial will be more durable.

Laurie

i am so sorry to hear what Craig is going through. I have been on the GSK2118436 Braf since September of 2010 at UCLA. I have multiple tumors and lesions throughout my left leg and into my pelvis. I have had a slow but steady decrease in the amount of mel in my leg since I started. It seems to shrink some tumors while ignoring another tumor that is right next to it. But no tumors have become bigger since I have been on it. I just had a CT this morning – so hopefully things are still progressing positivley.

the side effects have been manageable…sore feet and hands and constant skin things erupting that look like little warts that they keep removing every few weeks.  I hope Craig responds well and if you have any questions you can email me direct [email protected]

Laurie

i am so sorry to hear what Craig is going through. I have been on the GSK2118436 Braf since September of 2010 at UCLA. I have multiple tumors and lesions throughout my left leg and into my pelvis. I have had a slow but steady decrease in the amount of mel in my leg since I started. It seems to shrink some tumors while ignoring another tumor that is right next to it. But no tumors have become bigger since I have been on it. I just had a CT this morning – so hopefully things are still progressing positivley.

the side effects have been manageable…sore feet and hands and constant skin things erupting that look like little warts that they keep removing every few weeks.  I hope Craig responds well and if you have any questions you can email me direct [email protected]

Laurie

Glad to hear you made it throught the chemo! I mentioned in an earlier post that I went through this treatment at UCLA earlier this year. I might mention that if you have any hair left on your head now you may want them to shave it before you go to IL-2. I found by the third day of IL-2 my hair was coming out in clumps and with the heavy creams they use for your IL-2 rash – well lets just say it got kinda messy. Keep up the positive thoughts and stay strong! Looking forward to hearing from you afer IL-2!

Laurie

Glad to hear you made it throught the chemo! I mentioned in an earlier post that I went through this treatment at UCLA earlier this year. I might mention that if you have any hair left on your head now you may want them to shave it before you go to IL-2. I found by the third day of IL-2 my hair was coming out in clumps and with the heavy creams they use for your IL-2 rash – well lets just say it got kinda messy. Keep up the positive thoughts and stay strong! Looking forward to hearing from you afer IL-2!

Laurie

After reading the other posts it looks like there may be some benfit from the Braf on the brain mets during the first round of effective treatment. Perhaps because my brain mets appeared while on the Braf – they are the cells that learned how to create another path to get around the Braf inhibitor. I am now up to three brain mets as I aquired the third one while on the Temador. I am now off all treatments and waiting it out on steroids until the chemo is out of my system. They are considering a chemo that is used for breast cancer – not sure of the name just yet.

Good luck with your treatment!

Laurie

After reading the other posts it looks like there may be some benfit from the Braf on the brain mets during the first round of effective treatment. Perhaps because my brain mets appeared while on the Braf – they are the cells that learned how to create another path to get around the Braf inhibitor. I am now up to three brain mets as I aquired the third one while on the Temador. I am now off all treatments and waiting it out on steroids until the chemo is out of my system. They are considering a chemo that is used for breast cancer – not sure of the name just yet.

Good luck with your treatment!

Laurie

I went through this trial in Feb of this year at UCLA and was not one of the lucky ones as far as durability of response. Just remember to take it day by day and stay positive. They offerred me a lollipop during the translpant of t-cells and at first I said no…but the taste in my mouth got so bad I accepted and was glad I did..so if they offer you something – take it.  Good luck and I can.t wait to hear how great a response you are going to have!