failure

One person on here said no matter how many treatments fail you only need one to work. Stay strong and keep fighting.

I took that to heart and I'm still here fighting. I failed zelboraf. I failed ipi. I failed the taf/mek combo although finally some tumors did respond a little to it. Now I just started the Merck EAP of PD1 hoping this is the one for me.

I know it is hard to keep positive. I'm there too. We just have to keep trying.

One person on here said no matter how many treatments fail you only need one to work. Stay strong and keep fighting.

I took that to heart and I'm still here fighting. I failed zelboraf. I failed ipi. I failed the taf/mek combo although finally some tumors did respond a little to it. Now I just started the Merck EAP of PD1 hoping this is the one for me.

I know it is hard to keep positive. I'm there too. We just have to keep trying.

One person on here said no matter how many treatments fail you only need one to work. Stay strong and keep fighting.

I took that to heart and I'm still here fighting. I failed zelboraf. I failed ipi. I failed the taf/mek combo although finally some tumors did respond a little to it. Now I just started the Merck EAP of PD1 hoping this is the one for me.

I know it is hard to keep positive. I'm there too. We just have to keep trying.

Yes, my hair has grown (mostly) back. I lost my hair at the end of June last year, at the beginnning of the third week of radiation (if you're only doing 2 weeks, your's may start coming out sometime in the second week or not until the whole thing is over). It all came out over a period of about 3 days, most of it in the first 2 days. I chose to shave my hair down to about 1/4 inch the day I first noticed it so I didn't have to deal with handfuls of long hair everywhere. I was mostly bald with an odd arrangement of strangly evenly distributed individual hairs (which were blond, so you couldn't see them unless you looked really close). No other hair reappeared for about 6 months. At this point (11 months from finishing WBR) my hair is mostly back. There's still a spot at the very back of my head that's a bit thin. My hair started to fall out at the very top, then down the sides- I looked very much like an old man with male pattern balding (I am a woman). It returned in the opposite direction (sides first, then the top and back). It's still filling in, but I suspect that that spot at the back will always be a little bit thin- It really doesn't bother me, but I may try to find a style/length that will disguise it so I don't have to sunscreen it when I'm outside.

Yes, my hair has grown (mostly) back. I lost my hair at the end of June last year, at the beginnning of the third week of radiation (if you're only doing 2 weeks, your's may start coming out sometime in the second week or not until the whole thing is over). It all came out over a period of about 3 days, most of it in the first 2 days. I chose to shave my hair down to about 1/4 inch the day I first noticed it so I didn't have to deal with handfuls of long hair everywhere. I was mostly bald with an odd arrangement of strangly evenly distributed individual hairs (which were blond, so you couldn't see them unless you looked really close). No other hair reappeared for about 6 months. At this point (11 months from finishing WBR) my hair is mostly back. There's still a spot at the very back of my head that's a bit thin. My hair started to fall out at the very top, then down the sides- I looked very much like an old man with male pattern balding (I am a woman). It returned in the opposite direction (sides first, then the top and back). It's still filling in, but I suspect that that spot at the back will always be a little bit thin- It really doesn't bother me, but I may try to find a style/length that will disguise it so I don't have to sunscreen it when I'm outside.

Yes, my hair has grown (mostly) back. I lost my hair at the end of June last year, at the beginnning of the third week of radiation (if you're only doing 2 weeks, your's may start coming out sometime in the second week or not until the whole thing is over). It all came out over a period of about 3 days, most of it in the first 2 days. I chose to shave my hair down to about 1/4 inch the day I first noticed it so I didn't have to deal with handfuls of long hair everywhere. I was mostly bald with an odd arrangement of strangly evenly distributed individual hairs (which were blond, so you couldn't see them unless you looked really close). No other hair reappeared for about 6 months. At this point (11 months from finishing WBR) my hair is mostly back. There's still a spot at the very back of my head that's a bit thin. My hair started to fall out at the very top, then down the sides- I looked very much like an old man with male pattern balding (I am a woman). It returned in the opposite direction (sides first, then the top and back). It's still filling in, but I suspect that that spot at the back will always be a little bit thin- It really doesn't bother me, but I may try to find a style/length that will disguise it so I don't have to sunscreen it when I'm outside.

It was for the mets and possible leptomenigeal disease I had at the time- a year later and nothing is visible or has regrown. However, I developed 4 new mets last December after failing Ipi miserably and spending over a month fighting with my insurance company to let me do a PD-1 trial. By the time we got things figured out and I did the pre-scans for the trial I had 4 brain mets (in completely new locations) and was disqualified from the trial, hence the BRAF/MEK combo. They treated 2 of them in January (not sure why not all 4- I think they said they were too small), and those 2 have done well (though still visible) but my last scan a couple of weeks ago showed growth from the 2 untreated and also 4 more (again, in totally new locations). I just had my second gamma knife this past Monday and with their more powerful MRI they found 3 additional, so I had 9 treated. We'll see how they respond, but all of the mets that were there when I got WBR completely dissapeared and so far have not regrown. As long as I keep having active disease in the rest of my body I'm at risk for developing new brain mets so it's an ongoing challange, but WBR was successful in killing off the brain mets I had at the time.

It was for the mets and possible leptomenigeal disease I had at the time- a year later and nothing is visible or has regrown. However, I developed 4 new mets last December after failing Ipi miserably and spending over a month fighting with my insurance company to let me do a PD-1 trial. By the time we got things figured out and I did the pre-scans for the trial I had 4 brain mets (in completely new locations) and was disqualified from the trial, hence the BRAF/MEK combo. They treated 2 of them in January (not sure why not all 4- I think they said they were too small), and those 2 have done well (though still visible) but my last scan a couple of weeks ago showed growth from the 2 untreated and also 4 more (again, in totally new locations). I just had my second gamma knife this past Monday and with their more powerful MRI they found 3 additional, so I had 9 treated. We'll see how they respond, but all of the mets that were there when I got WBR completely dissapeared and so far have not regrown. As long as I keep having active disease in the rest of my body I'm at risk for developing new brain mets so it's an ongoing challange, but WBR was successful in killing off the brain mets I had at the time.

Hi from Ottawa, Canada. I had three brain mets last sept.2013. They treated me with high does radiation on a machine called  the Cyber Knife at the Ottawa General Hospital, one hour on the table then see ya later. On my 2 follow up MRI scans all has been clear. I was able to get onto the BMS drug trial of Nivilumab and Ipilumab in Jan. of this year and my two lung tumours have been slowly shrinking. If you know the stats on Melanoma, which I tried not to look at for a long time I shouldn't be here writing to you!  There are so many exciting findings and new drugs that are working for Melanoma. I think that the drug trial that I am on and the other PD-1 ones that I have read about are going to change the game. How to feel better about the future, look at some youtube videos on Melanoma about last years ASCO conference. They have some great stuff on Immunotherapy. Best of luck with the treatments. ED   

Hi from Ottawa, Canada. I had three brain mets last sept.2013. They treated me with high does radiation on a machine called  the Cyber Knife at the Ottawa General Hospital, one hour on the table then see ya later. On my 2 follow up MRI scans all has been clear. I was able to get onto the BMS drug trial of Nivilumab and Ipilumab in Jan. of this year and my two lung tumours have been slowly shrinking. If you know the stats on Melanoma, which I tried not to look at for a long time I shouldn't be here writing to you!  There are so many exciting findings and new drugs that are working for Melanoma. I think that the drug trial that I am on and the other PD-1 ones that I have read about are going to change the game. How to feel better about the future, look at some youtube videos on Melanoma about last years ASCO conference. They have some great stuff on Immunotherapy. Best of luck with the treatments. ED   

Hi from Ottawa, Canada. I had three brain mets last sept.2013. They treated me with high does radiation on a machine called  the Cyber Knife at the Ottawa General Hospital, one hour on the table then see ya later. On my 2 follow up MRI scans all has been clear. I was able to get onto the BMS drug trial of Nivilumab and Ipilumab in Jan. of this year and my two lung tumours have been slowly shrinking. If you know the stats on Melanoma, which I tried not to look at for a long time I shouldn't be here writing to you!  There are so many exciting findings and new drugs that are working for Melanoma. I think that the drug trial that I am on and the other PD-1 ones that I have read about are going to change the game. How to feel better about the future, look at some youtube videos on Melanoma about last years ASCO conference. They have some great stuff on Immunotherapy. Best of luck with the treatments. ED   

It was for the mets and possible leptomenigeal disease I had at the time- a year later and nothing is visible or has regrown. However, I developed 4 new mets last December after failing Ipi miserably and spending over a month fighting with my insurance company to let me do a PD-1 trial. By the time we got things figured out and I did the pre-scans for the trial I had 4 brain mets (in completely new locations) and was disqualified from the trial, hence the BRAF/MEK combo. They treated 2 of them in January (not sure why not all 4- I think they said they were too small), and those 2 have done well (though still visible) but my last scan a couple of weeks ago showed growth from the 2 untreated and also 4 more (again, in totally new locations). I just had my second gamma knife this past Monday and with their more powerful MRI they found 3 additional, so I had 9 treated. We'll see how they respond, but all of the mets that were there when I got WBR completely dissapeared and so far have not regrown. As long as I keep having active disease in the rest of my body I'm at risk for developing new brain mets so it's an ongoing challange, but WBR was successful in killing off the brain mets I had at the time.