fdess056

Hi, Wendy.  I haven't read your profile but have been through several sessions of high dose radiation including a possible new treatment on my knee that was previously treated this way..  The tumor seems to have come back after 1 1/2 years    .  Docs have told me on several occasions that melanoma is resistant to radiation but does seem to respond better to higher doses.  My orthopedist has recommended a knee replacement instead of more radiation as a possible long-term alternative.    I also had a  similar radiation treatment of 5 doses at high level on my neck (post dissection).  That area has remained melanoma free for over 3 years.   Hope this is helpful.  Best of luck to you

FrankD Brooklyn

Hi, Wendy.  I haven't read your profile but have been through several sessions of high dose radiation including a possible new treatment on my knee that was previously treated this way..  The tumor seems to have come back after 1 1/2 years    .  Docs have told me on several occasions that melanoma is resistant to radiation but does seem to respond better to higher doses.  My orthopedist has recommended a knee replacement instead of more radiation as a possible long-term alternative.    I also had a  similar radiation treatment of 5 doses at high level on my neck (post dissection).  That area has remained melanoma free for over 3 years.   Hope this is helpful.  Best of luck to you

FrankD Brooklyn

Hi, Wendy.  I haven't read your profile but have been through several sessions of high dose radiation including a possible new treatment on my knee that was previously treated this way..  The tumor seems to have come back after 1 1/2 years    .  Docs have told me on several occasions that melanoma is resistant to radiation but does seem to respond better to higher doses.  My orthopedist has recommended a knee replacement instead of more radiation as a possible long-term alternative.    I also had a  similar radiation treatment of 5 doses at high level on my neck (post dissection).  That area has remained melanoma free for over 3 years.   Hope this is helpful.  Best of luck to you

FrankD Brooklyn

Hi, Wendy.  I haven't read your profile but have been through several sessions of high dose radiation including a possible new treatment on my knee that was previously treated this way..  The tumor seems to have come back after 1 1/2 years    .  Docs have told me on several occasions that melanoma is resistant to radiation but does seem to respond better to higher doses.  My orthopedist has recommended a knee replacement instead of more radiation as a possible long-term alternative.    I also had a  similar radiation treatment of 5 doses at high level on my neck (post dissection).  That area has remained melanoma free for over 3 years.   Hope this is helpful.  Best of luck to you

FrankD Brooklyn

Hi, Wendy.  I haven't read your profile but have been through several sessions of high dose radiation including a possible new treatment on my knee that was previously treated this way..  The tumor seems to have come back after 1 1/2 years    .  Docs have told me on several occasions that melanoma is resistant to radiation but does seem to respond better to higher doses.  My orthopedist has recommended a knee replacement instead of more radiation as a possible long-term alternative.    I also had a  similar radiation treatment of 5 doses at high level on my neck (post dissection).  That area has remained melanoma free for over 3 years.   Hope this is helpful.  Best of luck to you

FrankD Brooklyn

Hi, Wendy.  I haven't read your profile but have been through several sessions of high dose radiation including a possible new treatment on my knee that was previously treated this way..  The tumor seems to have come back after 1 1/2 years    .  Docs have told me on several occasions that melanoma is resistant to radiation but does seem to respond better to higher doses.  My orthopedist has recommended a knee replacement instead of more radiation as a possible long-term alternative.    I also had a  similar radiation treatment of 5 doses at high level on my neck (post dissection).  That area has remained melanoma free for over 3 years.   Hope this is helpful.  Best of luck to you

FrankD Brooklyn

Hi, Denise.  I too was diagnosed with brain mets last Christmas.  I saw a neurosurgeon/radiation oncologist.  The 1st thing he asked me was if I had WBR.  When I said "no" he replied "good thing".  The course of action was to continue systemic treatment with Zel and Gamma Knife any new brain mets that might turn up.  Since then we've done this 5 times.  I'm also on Dexamethasone and am able to run a few miles almost every day.  I'm feeling better now than at any point since my original diagnosis just over 3 years ago.   The zel has reduced my body tumors (knee bone, lungs, stomach) and stabilzed the original brain mets.  But new brain mets seem to be developing from time to time.  I have them gamma knifed.  So, far this course has proven to work very well for me.

Best of luck and Happy Holidays to you

FrankD Brooklyn

Hi, Denise.  I too was diagnosed with brain mets last Christmas.  I saw a neurosurgeon/radiation oncologist.  The 1st thing he asked me was if I had WBR.  When I said "no" he replied "good thing".  The course of action was to continue systemic treatment with Zel and Gamma Knife any new brain mets that might turn up.  Since then we've done this 5 times.  I'm also on Dexamethasone and am able to run a few miles almost every day.  I'm feeling better now than at any point since my original diagnosis just over 3 years ago.   The zel has reduced my body tumors (knee bone, lungs, stomach) and stabilzed the original brain mets.  But new brain mets seem to be developing from time to time.  I have them gamma knifed.  So, far this course has proven to work very well for me.

Best of luck and Happy Holidays to you

FrankD Brooklyn

Hi, Denise.  I too was diagnosed with brain mets last Christmas.  I saw a neurosurgeon/radiation oncologist.  The 1st thing he asked me was if I had WBR.  When I said "no" he replied "good thing".  The course of action was to continue systemic treatment with Zel and Gamma Knife any new brain mets that might turn up.  Since then we've done this 5 times.  I'm also on Dexamethasone and am able to run a few miles almost every day.  I'm feeling better now than at any point since my original diagnosis just over 3 years ago.   The zel has reduced my body tumors (knee bone, lungs, stomach) and stabilzed the original brain mets.  But new brain mets seem to be developing from time to time.  I have them gamma knifed.  So, far this course has proven to work very well for me.

Best of luck and Happy Holidays to you

FrankD Brooklyn

Hi, Karen.  I think everyone finds out the hard way.  When I first started zel my wife and I went to an outdoor pool but sat under a shade canopy near the deep end of the pool.  I did not use lotion but kept my shirt on as I walked to the shallow end, swam one lap and walked back.  I wound up with severe burns on my head, face, legs and feet.  I also got burned again on a very cloudy day while doing a 5 kilometer benefit walk.  Now I don't go out at all without sunscreen.  A few notes on new laws regarding sunscreens:

They are no longer allowed to use the terms "sweat proof" or "water proof"  Its suggested that all sunscreens be re-applied verey 2 hours no matter what

You'll need something labeled "broad spectrum" which means it protects from both UVA a and UVB

Only SPFs of 15 or higher are allowed to advertise that they can lower the risk of skin cancer

I've been OK with SPF 30 along with a separate lip balm of 30 or more but I still avoid direct sunlight if at all possible

Sunscreen should be applied at least 15-20 minutes before going outside and should be rubbed well into the skin.

I live i NY, as you do so right now I seem to be having less sun issues due to both the weakened sun rays this time of year and maybe the fact that I've been on ZEL for 5 months and the side effects may be weakening.

Best of luck to you!

FrankD Brooklyn

Hi, Karen.  I think everyone finds out the hard way.  When I first started zel my wife and I went to an outdoor pool but sat under a shade canopy near the deep end of the pool.  I did not use lotion but kept my shirt on as I walked to the shallow end, swam one lap and walked back.  I wound up with severe burns on my head, face, legs and feet.  I also got burned again on a very cloudy day while doing a 5 kilometer benefit walk.  Now I don't go out at all without sunscreen.  A few notes on new laws regarding sunscreens:

They are no longer allowed to use the terms "sweat proof" or "water proof"  Its suggested that all sunscreens be re-applied verey 2 hours no matter what

You'll need something labeled "broad spectrum" which means it protects from both UVA a and UVB

Only SPFs of 15 or higher are allowed to advertise that they can lower the risk of skin cancer

I've been OK with SPF 30 along with a separate lip balm of 30 or more but I still avoid direct sunlight if at all possible

Sunscreen should be applied at least 15-20 minutes before going outside and should be rubbed well into the skin.

I live i NY, as you do so right now I seem to be having less sun issues due to both the weakened sun rays this time of year and maybe the fact that I've been on ZEL for 5 months and the side effects may be weakening.

Best of luck to you!

FrankD Brooklyn

Hi, Karen.  I think everyone finds out the hard way.  When I first started zel my wife and I went to an outdoor pool but sat under a shade canopy near the deep end of the pool.  I did not use lotion but kept my shirt on as I walked to the shallow end, swam one lap and walked back.  I wound up with severe burns on my head, face, legs and feet.  I also got burned again on a very cloudy day while doing a 5 kilometer benefit walk.  Now I don't go out at all without sunscreen.  A few notes on new laws regarding sunscreens:

They are no longer allowed to use the terms "sweat proof" or "water proof"  Its suggested that all sunscreens be re-applied verey 2 hours no matter what

You'll need something labeled "broad spectrum" which means it protects from both UVA a and UVB

Only SPFs of 15 or higher are allowed to advertise that they can lower the risk of skin cancer

I've been OK with SPF 30 along with a separate lip balm of 30 or more but I still avoid direct sunlight if at all possible

Sunscreen should be applied at least 15-20 minutes before going outside and should be rubbed well into the skin.

I live i NY, as you do so right now I seem to be having less sun issues due to both the weakened sun rays this time of year and maybe the fact that I've been on ZEL for 5 months and the side effects may be weakening.

Best of luck to you!

FrankD Brooklyn