Need Advice please

Hi Arthur, 

So sorry for all you have gone through. Three years ago a friend of mine had a similar diagnosis. He was diagnosed with stage 4 and it was in his brain, bones and stomach. He also had a tumor on his sphine a little higher up. He ended up going to Sloan Kettering and had radiation as they could not operate, with little help. He then went to Dr. Brendan Curtis who did a combination of radiation and IL2 as a clinical trial. He has been cancer free since and feels great. Here is the docs web site. 

http://oregon.providence.org/physician-directory/c/curti-brendan/

I'm thinking of trying this out too, but I have CLL which posses a problem.

Of course, everyone is a different case and responds differently to treatments. I am not sure if you can even get to Oregon but maybe they are doing the same thing close to you.

Also, steroids (prednisone) can be tapered down. What dosage are you at right now and how long have you been on it? Usually, you taper by 10mg each week. So, if your at 30mg you go down to 20 the first week then 10, then 5 and then .25 for one more week. 

Good luck with all… Stay positive and keep on fighting. 

Hi Arthur, 

So sorry for all you have gone through. Three years ago a friend of mine had a similar diagnosis. He was diagnosed with stage 4 and it was in his brain, bones and stomach. He also had a tumor on his sphine a little higher up. He ended up going to Sloan Kettering and had radiation as they could not operate, with little help. He then went to Dr. Brendan Curtis who did a combination of radiation and IL2 as a clinical trial. He has been cancer free since and feels great. Here is the docs web site. 

http://oregon.providence.org/physician-directory/c/curti-brendan/

I'm thinking of trying this out too, but I have CLL which posses a problem.

Of course, everyone is a different case and responds differently to treatments. I am not sure if you can even get to Oregon but maybe they are doing the same thing close to you.

Also, steroids (prednisone) can be tapered down. What dosage are you at right now and how long have you been on it? Usually, you taper by 10mg each week. So, if your at 30mg you go down to 20 the first week then 10, then 5 and then .25 for one more week. 

Good luck with all… Stay positive and keep on fighting. 

Hi Arthur, 

So sorry for all you have gone through. Three years ago a friend of mine had a similar diagnosis. He was diagnosed with stage 4 and it was in his brain, bones and stomach. He also had a tumor on his sphine a little higher up. He ended up going to Sloan Kettering and had radiation as they could not operate, with little help. He then went to Dr. Brendan Curtis who did a combination of radiation and IL2 as a clinical trial. He has been cancer free since and feels great. Here is the docs web site. 

http://oregon.providence.org/physician-directory/c/curti-brendan/

I'm thinking of trying this out too, but I have CLL which posses a problem.

Of course, everyone is a different case and responds differently to treatments. I am not sure if you can even get to Oregon but maybe they are doing the same thing close to you.

Also, steroids (prednisone) can be tapered down. What dosage are you at right now and how long have you been on it? Usually, you taper by 10mg each week. So, if your at 30mg you go down to 20 the first week then 10, then 5 and then .25 for one more week. 

Good luck with all… Stay positive and keep on fighting. 

Oh yes, my friend said it was the worst experience in his life going through the treatment but if you can come out like he did then!!!!!!!!!!!!!

Oh yes, my friend said it was the worst experience in his life going through the treatment but if you can come out like he did then!!!!!!!!!!!!!

Oh yes, my friend said it was the worst experience in his life going through the treatment but if you can come out like he did then!!!!!!!!!!!!!

Artie,

So sorry to hear your new plight.  I'll be praying for you.  The first thing I thought of as I was reading your post was Sarah Canon ADC treatment with Dr. Infante so I was happy to hear you have already started that process.  I will also say that I have a friend I've met through my battle with mel whose husband was treated by Dr. Curti.  They absolutely loved him.  He is doing some pretty neat stuff that really hasn't gotten a whole lot of publicity.  Hang in there.

Brian

Artie,

So sorry to hear your new plight.  I'll be praying for you.  The first thing I thought of as I was reading your post was Sarah Canon ADC treatment with Dr. Infante so I was happy to hear you have already started that process.  I will also say that I have a friend I've met through my battle with mel whose husband was treated by Dr. Curti.  They absolutely loved him.  He is doing some pretty neat stuff that really hasn't gotten a whole lot of publicity.  Hang in there.

Brian

Artie,

So sorry to hear your new plight.  I'll be praying for you.  The first thing I thought of as I was reading your post was Sarah Canon ADC treatment with Dr. Infante so I was happy to hear you have already started that process.  I will also say that I have a friend I've met through my battle with mel whose husband was treated by Dr. Curti.  They absolutely loved him.  He is doing some pretty neat stuff that really hasn't gotten a whole lot of publicity.  Hang in there.

Brian

Artie, first I would like to say "Thank you" for asking your college "Sistah" to provide us with periodic updates. That was extremely considerate of you– I know that a lot of people here were thinking about you and praying for you every day. Getting the updates was very helpful.

Given the precariousness of your condition and the devastating news you just got regarding your T10 surgery, I can't believe that you are already back here with your head on straight looking for advice and information about your next steps. Talk about gutsy!! Good for you! You are one heck of a warrior, man!

As for your specific questions… No, radiation therapy will not eliminate or alter the BRAF mutation in your melanoma tumors. I know that we are all taught from infancy that radioactivity is dangerous because it damages and mutates DNA. But really, the chances of any one cell being damaged is very, very slight and the chances of the radiation actually changing a BRAF V600E mutation in one melanoma cell is practically impossible. To change a V600E mutation in all melanoma cells is impossible. Furthermore, many patients have had radiation (especially WBR or SRS to the brain) and subsequently had good success with BRAF inhibitors. So radiotherapy does not adversely effect the tumor's response to BRAF inhibitors. 

That being so, I think that for now you should follow your oncologist's advice. Try the Tafinlar + Mekinist combo. Of all the treatments out there, it has the best chance of working quickly and with minimal side effects. Studies have shown that even people who became resistant to Zelboraf are able to respond well to Tafinlar + MEK. Not all of them, of course (like everything else melanoma) but a good response after failing Zelboraf is not uncommon. You should see results from the combo in 2 or 3 weeks; just about everything else takes at least 2 or 3 months. 

Yes, most people do become resistant to Tafinlar + MEK eventually. But right now you are trying to get your tumors under control, ease your pain and buy yourself some time to investigate other, more long-term optons. And, of course, your doctors will still need some way to stabilize your T10 vertebra. They probably need time to figure that one out, too.

Contrary to expectations, experience has shown that taking steroids does not stop ipi from working. Steroids do, however, make you feel crappy, screw up your blood sugar and cause weakness and atrophy in your lower limbs. If you stop taking steroids "cold turkey" you can get into all kinds of trouble. But they can be tapered down slowly without adverse effects. Listen to your doctor; take the steroids you need to control your symptoms. But know that the ipi is still working for you and your doctor will have you taper off the steroids once it is medicallly safe. Then you will probably feel a lot better and quickly regain your strength.

Hang onto your PMA! The Tafinlar + MEK will work for you! Your doctors will find a way to stabilize your vertebra! You will be able to taper off the steroids! And before you know it you will be feeling much better and be able to travel– to Sarah Cannon or wherever your heart desires. 

Artie, first I would like to say "Thank you" for asking your college "Sistah" to provide us with periodic updates. That was extremely considerate of you– I know that a lot of people here were thinking about you and praying for you every day. Getting the updates was very helpful.

Given the precariousness of your condition and the devastating news you just got regarding your T10 surgery, I can't believe that you are already back here with your head on straight looking for advice and information about your next steps. Talk about gutsy!! Good for you! You are one heck of a warrior, man!

As for your specific questions… No, radiation therapy will not eliminate or alter the BRAF mutation in your melanoma tumors. I know that we are all taught from infancy that radioactivity is dangerous because it damages and mutates DNA. But really, the chances of any one cell being damaged is very, very slight and the chances of the radiation actually changing a BRAF V600E mutation in one melanoma cell is practically impossible. To change a V600E mutation in all melanoma cells is impossible. Furthermore, many patients have had radiation (especially WBR or SRS to the brain) and subsequently had good success with BRAF inhibitors. So radiotherapy does not adversely effect the tumor's response to BRAF inhibitors. 

That being so, I think that for now you should follow your oncologist's advice. Try the Tafinlar + Mekinist combo. Of all the treatments out there, it has the best chance of working quickly and with minimal side effects. Studies have shown that even people who became resistant to Zelboraf are able to respond well to Tafinlar + MEK. Not all of them, of course (like everything else melanoma) but a good response after failing Zelboraf is not uncommon. You should see results from the combo in 2 or 3 weeks; just about everything else takes at least 2 or 3 months. 

Yes, most people do become resistant to Tafinlar + MEK eventually. But right now you are trying to get your tumors under control, ease your pain and buy yourself some time to investigate other, more long-term optons. And, of course, your doctors will still need some way to stabilize your T10 vertebra. They probably need time to figure that one out, too.

Contrary to expectations, experience has shown that taking steroids does not stop ipi from working. Steroids do, however, make you feel crappy, screw up your blood sugar and cause weakness and atrophy in your lower limbs. If you stop taking steroids "cold turkey" you can get into all kinds of trouble. But they can be tapered down slowly without adverse effects. Listen to your doctor; take the steroids you need to control your symptoms. But know that the ipi is still working for you and your doctor will have you taper off the steroids once it is medicallly safe. Then you will probably feel a lot better and quickly regain your strength.

Hang onto your PMA! The Tafinlar + MEK will work for you! Your doctors will find a way to stabilize your vertebra! You will be able to taper off the steroids! And before you know it you will be feeling much better and be able to travel– to Sarah Cannon or wherever your heart desires. 

Artie, first I would like to say "Thank you" for asking your college "Sistah" to provide us with periodic updates. That was extremely considerate of you– I know that a lot of people here were thinking about you and praying for you every day. Getting the updates was very helpful.

Given the precariousness of your condition and the devastating news you just got regarding your T10 surgery, I can't believe that you are already back here with your head on straight looking for advice and information about your next steps. Talk about gutsy!! Good for you! You are one heck of a warrior, man!

As for your specific questions… No, radiation therapy will not eliminate or alter the BRAF mutation in your melanoma tumors. I know that we are all taught from infancy that radioactivity is dangerous because it damages and mutates DNA. But really, the chances of any one cell being damaged is very, very slight and the chances of the radiation actually changing a BRAF V600E mutation in one melanoma cell is practically impossible. To change a V600E mutation in all melanoma cells is impossible. Furthermore, many patients have had radiation (especially WBR or SRS to the brain) and subsequently had good success with BRAF inhibitors. So radiotherapy does not adversely effect the tumor's response to BRAF inhibitors. 

That being so, I think that for now you should follow your oncologist's advice. Try the Tafinlar + Mekinist combo. Of all the treatments out there, it has the best chance of working quickly and with minimal side effects. Studies have shown that even people who became resistant to Zelboraf are able to respond well to Tafinlar + MEK. Not all of them, of course (like everything else melanoma) but a good response after failing Zelboraf is not uncommon. You should see results from the combo in 2 or 3 weeks; just about everything else takes at least 2 or 3 months. 

Yes, most people do become resistant to Tafinlar + MEK eventually. But right now you are trying to get your tumors under control, ease your pain and buy yourself some time to investigate other, more long-term optons. And, of course, your doctors will still need some way to stabilize your T10 vertebra. They probably need time to figure that one out, too.

Contrary to expectations, experience has shown that taking steroids does not stop ipi from working. Steroids do, however, make you feel crappy, screw up your blood sugar and cause weakness and atrophy in your lower limbs. If you stop taking steroids "cold turkey" you can get into all kinds of trouble. But they can be tapered down slowly without adverse effects. Listen to your doctor; take the steroids you need to control your symptoms. But know that the ipi is still working for you and your doctor will have you taper off the steroids once it is medicallly safe. Then you will probably feel a lot better and quickly regain your strength.

Hang onto your PMA! The Tafinlar + MEK will work for you! Your doctors will find a way to stabilize your vertebra! You will be able to taper off the steroids! And before you know it you will be feeling much better and be able to travel– to Sarah Cannon or wherever your heart desires.