PhoenixJ

I haven’t been on this board in quite a while. I was diagnosed at stage 4 wheb i was 31 back in 2011…no…that is not a typo. I have undergone most of the treatments that are available for melanoma (zelboraf, ipi, IL-2, anti-pd1 clinical trial, and now a BRAF MEK clinical trial). my last scans were last week and I have no evidence of active disease and only a couple of small areas of what is likely radiation necrosis in my brain.

Zelboraf was the first Treatment I was put on back in 2011. It saved my life. Within 3 months I saw a 90% reduction in disease burden. A palpable lump in my abdomen disappeared in 2 weeks. I was taken off of it not because of side effects but because my oncologist wanted to switch me to something that would have potential to have longer lasting effects (single BRAF inhibitor treatment has a median time to disease progression of about 7 months as I have been told). With that said the side effects I had were extreme sun/light sensitivity (I got 2nd degree burns on my knuckles and the side of my face while driving in a car on a sunny day…that was fixed with lots of sunscreen and driving gloves). Lactose intolerance which was remedied with lactaid before dairy. Migratory joint pain: one day my elbow would hurt, the next my knee. Some days no joint pain. Rough skin/hyperkeratosis/and uncomfortable calluses on hands and feet all managed with Ceravie Lotion and urea cream and careful foot care. Erythema nodosa (painful lumps of inflamed fat cells under the skin) those were really only painful to touch and most of the discomfort went away after a couple of days and the lumps disappear after about a weeks time. Now all of these side Effects sound like a lot but they really can be well managed and I still went to work and exercised and went on vacation. Bonuses of BRAF: 90% reduction of disease in 3months. That was reason enough for me. Extra bonuses: body hair loss but significant growth of nails and head hair..not kidding.

After the zelboraf I went through lots of other treatments including proton beam radiation to my brain mets And the immunotherapies. each one I had a fair response to but the anti-pd1 trial drug just took too long I think and things got a little too worrisome for my oncologist to let it ride. So now I am in a BRAF MEK inhibitor trial and I have been for over 2 years now (there is one combination that has already been FDA approved I think) and I have seen the reduction of my disease to where it is almost non-existent. There are side effects…a big one being fatigue and weight gain but it’s hard to say if that is truly caused by the drug or the fact that I am in menopause (had surgery due to large masses that just turned out to be benign Cysts). The sun sensitivity and skin changes are a lot less, and the Joint discomfort is still there but more chronic in nature and less intense. Nothing a little stroll can’t Loosen up.

In my opinion as crappy as this disease is, the treatments are far less horrible than for other cancers and more and more targeted therapies are being researched every day. If you want to chat more or if your daughter has any questions feel free to message me. I am happy to discuss more.

I haven’t been on this board in quite a while. I was diagnosed at stage 4 wheb i was 31 back in 2011…no…that is not a typo. I have undergone most of the treatments that are available for melanoma (zelboraf, ipi, IL-2, anti-pd1 clinical trial, and now a BRAF MEK clinical trial). my last scans were last week and I have no evidence of active disease and only a couple of small areas of what is likely radiation necrosis in my brain.

Zelboraf was the first Treatment I was put on back in 2011. It saved my life. Within 3 months I saw a 90% reduction in disease burden. A palpable lump in my abdomen disappeared in 2 weeks. I was taken off of it not because of side effects but because my oncologist wanted to switch me to something that would have potential to have longer lasting effects (single BRAF inhibitor treatment has a median time to disease progression of about 7 months as I have been told). With that said the side effects I had were extreme sun/light sensitivity (I got 2nd degree burns on my knuckles and the side of my face while driving in a car on a sunny day…that was fixed with lots of sunscreen and driving gloves). Lactose intolerance which was remedied with lactaid before dairy. Migratory joint pain: one day my elbow would hurt, the next my knee. Some days no joint pain. Rough skin/hyperkeratosis/and uncomfortable calluses on hands and feet all managed with Ceravie Lotion and urea cream and careful foot care. Erythema nodosa (painful lumps of inflamed fat cells under the skin) those were really only painful to touch and most of the discomfort went away after a couple of days and the lumps disappear after about a weeks time. Now all of these side Effects sound like a lot but they really can be well managed and I still went to work and exercised and went on vacation. Bonuses of BRAF: 90% reduction of disease in 3months. That was reason enough for me. Extra bonuses: body hair loss but significant growth of nails and head hair..not kidding.

After the zelboraf I went through lots of other treatments including proton beam radiation to my brain mets And the immunotherapies. each one I had a fair response to but the anti-pd1 trial drug just took too long I think and things got a little too worrisome for my oncologist to let it ride. So now I am in a BRAF MEK inhibitor trial and I have been for over 2 years now (there is one combination that has already been FDA approved I think) and I have seen the reduction of my disease to where it is almost non-existent. There are side effects…a big one being fatigue and weight gain but it’s hard to say if that is truly caused by the drug or the fact that I am in menopause (had surgery due to large masses that just turned out to be benign Cysts). The sun sensitivity and skin changes are a lot less, and the Joint discomfort is still there but more chronic in nature and less intense. Nothing a little stroll can’t Loosen up.

In my opinion as crappy as this disease is, the treatments are far less horrible than for other cancers and more and more targeted therapies are being researched every day. If you want to chat more or if your daughter has any questions feel free to message me. I am happy to discuss more.

I haven’t been on this board in quite a while. I was diagnosed at stage 4 wheb i was 31 back in 2011…no…that is not a typo. I have undergone most of the treatments that are available for melanoma (zelboraf, ipi, IL-2, anti-pd1 clinical trial, and now a BRAF MEK clinical trial). my last scans were last week and I have no evidence of active disease and only a couple of small areas of what is likely radiation necrosis in my brain.

Zelboraf was the first Treatment I was put on back in 2011. It saved my life. Within 3 months I saw a 90% reduction in disease burden. A palpable lump in my abdomen disappeared in 2 weeks. I was taken off of it not because of side effects but because my oncologist wanted to switch me to something that would have potential to have longer lasting effects (single BRAF inhibitor treatment has a median time to disease progression of about 7 months as I have been told). With that said the side effects I had were extreme sun/light sensitivity (I got 2nd degree burns on my knuckles and the side of my face while driving in a car on a sunny day…that was fixed with lots of sunscreen and driving gloves). Lactose intolerance which was remedied with lactaid before dairy. Migratory joint pain: one day my elbow would hurt, the next my knee. Some days no joint pain. Rough skin/hyperkeratosis/and uncomfortable calluses on hands and feet all managed with Ceravie Lotion and urea cream and careful foot care. Erythema nodosa (painful lumps of inflamed fat cells under the skin) those were really only painful to touch and most of the discomfort went away after a couple of days and the lumps disappear after about a weeks time. Now all of these side Effects sound like a lot but they really can be well managed and I still went to work and exercised and went on vacation. Bonuses of BRAF: 90% reduction of disease in 3months. That was reason enough for me. Extra bonuses: body hair loss but significant growth of nails and head hair..not kidding.

After the zelboraf I went through lots of other treatments including proton beam radiation to my brain mets And the immunotherapies. each one I had a fair response to but the anti-pd1 trial drug just took too long I think and things got a little too worrisome for my oncologist to let it ride. So now I am in a BRAF MEK inhibitor trial and I have been for over 2 years now (there is one combination that has already been FDA approved I think) and I have seen the reduction of my disease to where it is almost non-existent. There are side effects…a big one being fatigue and weight gain but it’s hard to say if that is truly caused by the drug or the fact that I am in menopause (had surgery due to large masses that just turned out to be benign Cysts). The sun sensitivity and skin changes are a lot less, and the Joint discomfort is still there but more chronic in nature and less intense. Nothing a little stroll can’t Loosen up.

In my opinion as crappy as this disease is, the treatments are far less horrible than for other cancers and more and more targeted therapies are being researched every day. If you want to chat more or if your daughter has any questions feel free to message me. I am happy to discuss more.

Hi Julie,

I am sorry to hear about your CT results. I know the kind of anxiety that can produce. I was actually scanned early (1week after ipi was completed) because I had a rapidly growing subq met as well as 3 new brain mets discovered on a follow up MRI done 6 weeks after my Stereotactic radiation ( for a single brain met found 2 months ago). My onc suggested the scans because I already had sizable mets before ipi was started and he was concerned that given the MRI results and the subq growth my other mets might have been growing. This scan showed growth in all my mets but no new mets. He decided to stay the course and I was re-imaged 4 weeks later. This scan showed stability in some mets and a small amount of shrinkage in others. It wasn’t an amazing result but he is optimistic that things may be turning in the right direction. Like you my pain has started to regress, so I think that you should take that as a good sign. Please don’t give up hope, the waiting game is the hardest, and things can turn around.

Hi Julie,

I am sorry to hear about your CT results. I know the kind of anxiety that can produce. I was actually scanned early (1week after ipi was completed) because I had a rapidly growing subq met as well as 3 new brain mets discovered on a follow up MRI done 6 weeks after my Stereotactic radiation ( for a single brain met found 2 months ago). My onc suggested the scans because I already had sizable mets before ipi was started and he was concerned that given the MRI results and the subq growth my other mets might have been growing. This scan showed growth in all my mets but no new mets. He decided to stay the course and I was re-imaged 4 weeks later. This scan showed stability in some mets and a small amount of shrinkage in others. It wasn’t an amazing result but he is optimistic that things may be turning in the right direction. Like you my pain has started to regress, so I think that you should take that as a good sign. Please don’t give up hope, the waiting game is the hardest, and things can turn around.

Hi Julie,

I am sorry to hear about your CT results. I know the kind of anxiety that can produce. I was actually scanned early (1week after ipi was completed) because I had a rapidly growing subq met as well as 3 new brain mets discovered on a follow up MRI done 6 weeks after my Stereotactic radiation ( for a single brain met found 2 months ago). My onc suggested the scans because I already had sizable mets before ipi was started and he was concerned that given the MRI results and the subq growth my other mets might have been growing. This scan showed growth in all my mets but no new mets. He decided to stay the course and I was re-imaged 4 weeks later. This scan showed stability in some mets and a small amount of shrinkage in others. It wasn’t an amazing result but he is optimistic that things may be turning in the right direction. Like you my pain has started to regress, so I think that you should take that as a good sign. Please don’t give up hope, the waiting game is the hardest, and things can turn around.

I am so happy for you!!! I just Received my first ipi infusion on thursday. I hope that I have as good results! I had an 85% reduction in disease burden in 2 months on zelboraf and I was nervous about coming off it to start ipi but now to hear so much good news here it gives me hope!! Have a great holiday season!!

I am so happy for you!!! I just Received my first ipi infusion on thursday. I hope that I have as good results! I had an 85% reduction in disease burden in 2 months on zelboraf and I was nervous about coming off it to start ipi but now to hear so much good news here it gives me hope!! Have a great holiday season!!

I am so happy for you!!! I just Received my first ipi infusion on thursday. I hope that I have as good results! I had an 85% reduction in disease burden in 2 months on zelboraf and I was nervous about coming off it to start ipi but now to hear so much good news here it gives me hope!! Have a great holiday season!!