Annalive

Hi Patrick,  

I have Stage 4 Met/Mel with a current re-occurance, surgically removed,  after 3 1/2 years of remission.  My doc ordered genetic testing from ,"Caris Life Sciences, " covered by insurance, to see which drugs might best work for me.  Much to my surprise I had 0% of PD-L1… which in my understanding means that for me, Opdivo and Keytruda would not work as I do not posess the mutation that it uses. t Wishing you all the best.  Ann

Hi Anonymous,

Ty Bollinger wrote a book called "Cancer, Step Outside the Box."

He also recently produced a series of interviews with different health 

professionals on alternative and complimentary cancer treatments

called "The Truth about Cancer."  Very informative.   

There are ways to deal with cancer, even Melanoma, other  than standard of care.  

I had Malig Mel 23 years ago. It re-emerged 3 years ago in axillary

lymph node as St 3C.  I am fully informed on standard treatment and

see my oncologist regularly. I have a surgeon, radiologist, and Naturopathic Oncologist

on my team.  The naturo/Onco is my main guide and I keep my docs informed.  I have, after the first year, had a couple of surgeries and

a few months ago Steriotactic highdose radiation post  2nd surgery

(now St 4) on a tumor which was , as it turned out, only partially resectable.  Initially I did hyperthermia 

treatments, full body and local in Canadal, Vit C and alpha lipoic acid IVs, a series of supplements,

low dose pharmecuticals, Mistletoe injctions, dietary changes… I am listing a few things to say that there

are options.  The thing is, the patient has to embrace the possibility and make changes in

their lifestyle.    I am, at his point, tumor free-NED. I did everything I could to support my immune

system and avoided things that would harm it.  My oncologist says I'm remarkable.  All I can tell you is that in the world… there is a lot more going on in cancer treatment.   I wish you and your dad well.  Ann

Hi Anonymous,

Ty Bollinger wrote a book called "Cancer, Step Outside the Box."

He also recently produced a series of interviews with different health 

professionals on alternative and complimentary cancer treatments

called "The Truth about Cancer."  Very informative.   

There are ways to deal with cancer, even Melanoma, other  than standard of care.  

I had Malig Mel 23 years ago. It re-emerged 3 years ago in axillary

lymph node as St 3C.  I am fully informed on standard treatment and

see my oncologist regularly. I have a surgeon, radiologist, and Naturopathic Oncologist

on my team.  The naturo/Onco is my main guide and I keep my docs informed.  I have, after the first year, had a couple of surgeries and

a few months ago Steriotactic highdose radiation post  2nd surgery

(now St 4) on a tumor which was , as it turned out, only partially resectable.  Initially I did hyperthermia 

treatments, full body and local in Canadal, Vit C and alpha lipoic acid IVs, a series of supplements,

low dose pharmecuticals, Mistletoe injctions, dietary changes… I am listing a few things to say that there

are options.  The thing is, the patient has to embrace the possibility and make changes in

their lifestyle.    I am, at his point, tumor free-NED. I did everything I could to support my immune

system and avoided things that would harm it.  My oncologist says I'm remarkable.  All I can tell you is that in the world… there is a lot more going on in cancer treatment.   I wish you and your dad well.  Ann

Hi Anonymous,

Ty Bollinger wrote a book called "Cancer, Step Outside the Box."

He also recently produced a series of interviews with different health 

professionals on alternative and complimentary cancer treatments

called "The Truth about Cancer."  Very informative.   

There are ways to deal with cancer, even Melanoma, other  than standard of care.  

I had Malig Mel 23 years ago. It re-emerged 3 years ago in axillary

lymph node as St 3C.  I am fully informed on standard treatment and

see my oncologist regularly. I have a surgeon, radiologist, and Naturopathic Oncologist

on my team.  The naturo/Onco is my main guide and I keep my docs informed.  I have, after the first year, had a couple of surgeries and

a few months ago Steriotactic highdose radiation post  2nd surgery

(now St 4) on a tumor which was , as it turned out, only partially resectable.  Initially I did hyperthermia 

treatments, full body and local in Canadal, Vit C and alpha lipoic acid IVs, a series of supplements,

low dose pharmecuticals, Mistletoe injctions, dietary changes… I am listing a few things to say that there

are options.  The thing is, the patient has to embrace the possibility and make changes in

their lifestyle.    I am, at his point, tumor free-NED. I did everything I could to support my immune

system and avoided things that would harm it.  My oncologist says I'm remarkable.  All I can tell you is that in the world… there is a lot more going on in cancer treatment.   I wish you and your dad well.  Ann

Hi,

Below ar some links which speak about Immune response and radiation.   It is a new area of study, but it makes sense from what I learned while doing hyperthermia.  I couldn't find the one that talks about an actual clinical trial… I'll send it along if I can find it.I just did the Tomotherapy high dose radiation after a surgery  into my Lumbar area.  It was to deep an area to get all of the tumor so thats why  I did it. The high dose (for me 3 treatmenrs,15 Gy each) are apparently so different than traditional radiation , and, for Melanoma more useful.  The first time I had surgery in left axilla, 2 years ago, I did a 6 week protocol of hyperthermia to "clean up" the area.  The docs suggested radiation (SOC) but I did not want to do it.  I have had no re-occurance in that area. And, no side effects.  If you would like to contact me off the group post please do,  [email protected].  For what it's worth, I have grown to appreciate all of my docs… the Onco, surgeon, radiologist , but it is amazingh how much they don't know.  It is so important to question, research and look beyond Standard of care (SOC) … Then, there are the Naturopathic Oncologists and Integrative Medical docs… who have a more wholisitc view.  Wouldn't be where I am now without them.  Then, there is the internet which has gleaned so much and then these groups of patients sharing with each other.  Wishing you the best for your son.    ALoha, Ann

http://mcpharmacol.com/index.php/Journals/article/viewFile/190/179

http://www.hindawi.com/journals/bmri/2013/658126/

http://www.thetcr.org/article/view/2091/html

http://www.nejm.org/doi/full/10.1056/NEJMc1203984

http://cancerimmunolres.aacrjournals.org/content/2/9/831.full?ijkey=FR7okPG3V49mU&keytype=ref&siteid=aacrjnls

Hi,

Below ar some links which speak about Immune response and radiation.   It is a new area of study, but it makes sense from what I learned while doing hyperthermia.  I couldn't find the one that talks about an actual clinical trial… I'll send it along if I can find it.I just did the Tomotherapy high dose radiation after a surgery  into my Lumbar area.  It was to deep an area to get all of the tumor so thats why  I did it. The high dose (for me 3 treatmenrs,15 Gy each) are apparently so different than traditional radiation , and, for Melanoma more useful.  The first time I had surgery in left axilla, 2 years ago, I did a 6 week protocol of hyperthermia to "clean up" the area.  The docs suggested radiation (SOC) but I did not want to do it.  I have had no re-occurance in that area. And, no side effects.  If you would like to contact me off the group post please do,  [email protected].  For what it's worth, I have grown to appreciate all of my docs… the Onco, surgeon, radiologist , but it is amazingh how much they don't know.  It is so important to question, research and look beyond Standard of care (SOC) … Then, there are the Naturopathic Oncologists and Integrative Medical docs… who have a more wholisitc view.  Wouldn't be where I am now without them.  Then, there is the internet which has gleaned so much and then these groups of patients sharing with each other.  Wishing you the best for your son.    ALoha, Ann

http://mcpharmacol.com/index.php/Journals/article/viewFile/190/179

http://www.hindawi.com/journals/bmri/2013/658126/

http://www.thetcr.org/article/view/2091/html

http://www.nejm.org/doi/full/10.1056/NEJMc1203984

http://cancerimmunolres.aacrjournals.org/content/2/9/831.full?ijkey=FR7okPG3V49mU&keytype=ref&siteid=aacrjnls

Hi,

Below ar some links which speak about Immune response and radiation.   It is a new area of study, but it makes sense from what I learned while doing hyperthermia.  I couldn't find the one that talks about an actual clinical trial… I'll send it along if I can find it.I just did the Tomotherapy high dose radiation after a surgery  into my Lumbar area.  It was to deep an area to get all of the tumor so thats why  I did it. The high dose (for me 3 treatmenrs,15 Gy each) are apparently so different than traditional radiation , and, for Melanoma more useful.  The first time I had surgery in left axilla, 2 years ago, I did a 6 week protocol of hyperthermia to "clean up" the area.  The docs suggested radiation (SOC) but I did not want to do it.  I have had no re-occurance in that area. And, no side effects.  If you would like to contact me off the group post please do,  [email protected].  For what it's worth, I have grown to appreciate all of my docs… the Onco, surgeon, radiologist , but it is amazingh how much they don't know.  It is so important to question, research and look beyond Standard of care (SOC) … Then, there are the Naturopathic Oncologists and Integrative Medical docs… who have a more wholisitc view.  Wouldn't be where I am now without them.  Then, there is the internet which has gleaned so much and then these groups of patients sharing with each other.  Wishing you the best for your son.    ALoha, Ann

http://mcpharmacol.com/index.php/Journals/article/viewFile/190/179

http://www.hindawi.com/journals/bmri/2013/658126/

http://www.thetcr.org/article/view/2091/html

http://www.nejm.org/doi/full/10.1056/NEJMc1203984

http://cancerimmunolres.aacrjournals.org/content/2/9/831.full?ijkey=FR7okPG3V49mU&keytype=ref&siteid=aacrjnls

IBecause of the Tomotherapy I have been reading abut something called the "Abscopal" Effect.  In essence,

when a tumor is treated with highdose radiation, sometimes the immune system responds with recognizing other tumor sites in the body and reducing them too.  They say it's rare… but it makes so much sense from everything I've come to understand about this disease.  

I've read some cases where , when a patient is on Yervoy and has the radiation treatment, this can happen more often as there are more immune cells … please forgive me, I don't remember if its NK or T-cells.  Anyway, There are more cells activated in the immune system.  There are even some trials going on.   How is your son (what age?) responding to Yervoy?  How is he doing?  ALoha, Ann

IBecause of the Tomotherapy I have been reading abut something called the "Abscopal" Effect.  In essence,

when a tumor is treated with highdose radiation, sometimes the immune system responds with recognizing other tumor sites in the body and reducing them too.  They say it's rare… but it makes so much sense from everything I've come to understand about this disease.  

I've read some cases where , when a patient is on Yervoy and has the radiation treatment, this can happen more often as there are more immune cells … please forgive me, I don't remember if its NK or T-cells.  Anyway, There are more cells activated in the immune system.  There are even some trials going on.   How is your son (what age?) responding to Yervoy?  How is he doing?  ALoha, Ann

IBecause of the Tomotherapy I have been reading abut something called the "Abscopal" Effect.  In essence,

when a tumor is treated with highdose radiation, sometimes the immune system responds with recognizing other tumor sites in the body and reducing them too.  They say it's rare… but it makes so much sense from everything I've come to understand about this disease.  

I've read some cases where , when a patient is on Yervoy and has the radiation treatment, this can happen more often as there are more immune cells … please forgive me, I don't remember if its NK or T-cells.  Anyway, There are more cells activated in the immune system.  There are even some trials going on.   How is your son (what age?) responding to Yervoy?  How is he doing?  ALoha, Ann

For me, Integrated Health Clinic in B.C. was a bright light in the often scary world of Oncology.  At the time I was so greatful to find a treatment that supported my immune system rather than to harm it.  It's a long story… 3 years at it now with Met/mel.  As far as I know, they are the only place in NorthAmerica to do WHole body hyperthermia.  Rx was 3x local hyyperthermia per week and 1 whole body per week for 6 weeks.  Also, took Iscador Pini Mistletoe, IV Vit C or Alpha Lipoic Acid, many nuritional supplements , 4 lowdose pharmecuticals known as "metronomic" therpay.  Celebrex, Metformin, Cemitidine and Tamoxifin (Melanoma being estrogen sensitive.)  Many dietary protocols as well.  I've done this 6 week protocol 3 times now. First time  5cm tumor shrank 30% … based on PET/CT scans) I have had 2 surgeries and most recently Steritactic Tomotherapy (3 Rx, 15 Gy each), post last surgery.  This disease takes us on a journey.  There is no one right way to go… At this point I live with it…  LOL, Ann

For me, Integrated Health Clinic in B.C. was a bright light in the often scary world of Oncology.  At the time I was so greatful to find a treatment that supported my immune system rather than to harm it.  It's a long story… 3 years at it now with Met/mel.  As far as I know, they are the only place in NorthAmerica to do WHole body hyperthermia.  Rx was 3x local hyyperthermia per week and 1 whole body per week for 6 weeks.  Also, took Iscador Pini Mistletoe, IV Vit C or Alpha Lipoic Acid, many nuritional supplements , 4 lowdose pharmecuticals known as "metronomic" therpay.  Celebrex, Metformin, Cemitidine and Tamoxifin (Melanoma being estrogen sensitive.)  Many dietary protocols as well.  I've done this 6 week protocol 3 times now. First time  5cm tumor shrank 30% … based on PET/CT scans) I have had 2 surgeries and most recently Steritactic Tomotherapy (3 Rx, 15 Gy each), post last surgery.  This disease takes us on a journey.  There is no one right way to go… At this point I live with it…  LOL, Ann

For me, Integrated Health Clinic in B.C. was a bright light in the often scary world of Oncology.  At the time I was so greatful to find a treatment that supported my immune system rather than to harm it.  It's a long story… 3 years at it now with Met/mel.  As far as I know, they are the only place in NorthAmerica to do WHole body hyperthermia.  Rx was 3x local hyyperthermia per week and 1 whole body per week for 6 weeks.  Also, took Iscador Pini Mistletoe, IV Vit C or Alpha Lipoic Acid, many nuritional supplements , 4 lowdose pharmecuticals known as "metronomic" therpay.  Celebrex, Metformin, Cemitidine and Tamoxifin (Melanoma being estrogen sensitive.)  Many dietary protocols as well.  I've done this 6 week protocol 3 times now. First time  5cm tumor shrank 30% … based on PET/CT scans) I have had 2 surgeries and most recently Steritactic Tomotherapy (3 Rx, 15 Gy each), post last surgery.  This disease takes us on a journey.  There is no one right way to go… At this point I live with it…  LOL, Ann

HI JERRY,  wow! Thanks for the informative post.  I am curious about the oncogene protein test.  I have a BRAF-pos St 3? Met/Mel… Is there a broad range panel  test for onco genes? How does one know what to test for?  I have Onco and Naturopathic Onco. I have used hyperthermia, nutritional protocols, surgery and most recently Tomotherapy.  I have never used the "designer drugs," (I say that because of their price,) they have for us.  Wishing you the BEST…. we are each a clinical trial of one.  I had Mel 22 years ago.  It went dormant for 20 years then re-emerged.  Go figure?  Aloha, Ann