Alternative Treatments?

Hi Maggie,

First and foremost i  am so sorry you have had to join the stage IV club.  First and foremost take a deep breath.  I will share my story with you.  I was dx in 1995 with an ulcerated mole on my back, which I had asked the derm if in doubt do no do the shave biopsy.  He did and I was dx as a stage II. 

My oncologist at Sloane Kettering chose to wait and see instead of having me do Interferon, which was about the only treatmet at the tine .  Thankfully for me he made that decision.  From all the research I have done I know it is one treatment I personally would not do.

Four years and 8 mon. after original dx I was dx with mets to both lungs… inoperable.  It was recommended I have one lung removed.  After careful consideration I decided not to have the surgery.  I chose to see an alternative doctor  ( MD)  who had trained at Sloane Kettering.  This doctor is an oriental doctor who combines both eastern and conventional medicine.  I saw him for about one year. 

He also recommended I see a specialist at NYU, whihc I did.  He had me do full body scans (again)  He also had me do a Brain Scan which showed a brain met and confirmed with and MRI..  Longs story short.

I felt I had to do something  and I wanted to live to laugh and to love for whatever time I had left. 

I heard from three or four people about Iscador , MIstletoe Therapy.  which is what I chose. It isn't right for everyone but it was right for me.  I am currently 13 yrs. NED.  Please know I am here I wil help you in any way you need me to be  Hang tough!!!!

Sending Healing hugs and positive thoughts

Love and Light

Carole

Hi Maggie,

First and foremost i  am so sorry you have had to join the stage IV club.  First and foremost take a deep breath.  I will share my story with you.  I was dx in 1995 with an ulcerated mole on my back, which I had asked the derm if in doubt do no do the shave biopsy.  He did and I was dx as a stage II. 

My oncologist at Sloane Kettering chose to wait and see instead of having me do Interferon, which was about the only treatmet at the tine .  Thankfully for me he made that decision.  From all the research I have done I know it is one treatment I personally would not do.

Four years and 8 mon. after original dx I was dx with mets to both lungs… inoperable.  It was recommended I have one lung removed.  After careful consideration I decided not to have the surgery.  I chose to see an alternative doctor  ( MD)  who had trained at Sloane Kettering.  This doctor is an oriental doctor who combines both eastern and conventional medicine.  I saw him for about one year. 

He also recommended I see a specialist at NYU, whihc I did.  He had me do full body scans (again)  He also had me do a Brain Scan which showed a brain met and confirmed with and MRI..  Longs story short.

I felt I had to do something  and I wanted to live to laugh and to love for whatever time I had left. 

I heard from three or four people about Iscador , MIstletoe Therapy.  which is what I chose. It isn't right for everyone but it was right for me.  I am currently 13 yrs. NED.  Please know I am here I wil help you in any way you need me to be  Hang tough!!!!

Sending Healing hugs and positive thoughts

Love and Light

Carole

Hi Maggie,

First and foremost i  am so sorry you have had to join the stage IV club.  First and foremost take a deep breath.  I will share my story with you.  I was dx in 1995 with an ulcerated mole on my back, which I had asked the derm if in doubt do no do the shave biopsy.  He did and I was dx as a stage II. 

My oncologist at Sloane Kettering chose to wait and see instead of having me do Interferon, which was about the only treatmet at the tine .  Thankfully for me he made that decision.  From all the research I have done I know it is one treatment I personally would not do.

Four years and 8 mon. after original dx I was dx with mets to both lungs… inoperable.  It was recommended I have one lung removed.  After careful consideration I decided not to have the surgery.  I chose to see an alternative doctor  ( MD)  who had trained at Sloane Kettering.  This doctor is an oriental doctor who combines both eastern and conventional medicine.  I saw him for about one year. 

He also recommended I see a specialist at NYU, whihc I did.  He had me do full body scans (again)  He also had me do a Brain Scan which showed a brain met and confirmed with and MRI..  Longs story short.

I felt I had to do something  and I wanted to live to laugh and to love for whatever time I had left. 

I heard from three or four people about Iscador , MIstletoe Therapy.  which is what I chose. It isn't right for everyone but it was right for me.  I am currently 13 yrs. NED.  Please know I am here I wil help you in any way you need me to be  Hang tough!!!!

Sending Healing hugs and positive thoughts

Love and Light

Carole

Maggie,

Have you found a melanoma specialist to guide you through the traditional treatment options yet? If not that's probably the first thing you should consider. The word traditional is probably a poor choice of words as much of the drug treatments are actually very new and focused around immunotherapy whereby the human body's natural healing functions are unleashed and allowed to work longer against the cancer invader. I am not against alternative therapies but have a difficult time embracing something with results that might be more difficult to measure as compared to some of the current breakthrough drugs. I took Yervoy with very manageable and minor side effects and have read good things about the minor side effects of the Anti Pd-1 drugs currently being tested. I am hopeful that if my current yervoy treatment is not long term durable it will carry me along until one of the current or new breakthrough drugs is available and needed. I think its great that you are approaching this challenge with an open mind towards alternative therapies but would urge you not to overlook some of these new drugs with measurable and successful results as well as minor to moderate side effects. I do look forward to hearing more about some of the alternative options you uncover that might be worth a deeper look. 

Maggie,

Have you found a melanoma specialist to guide you through the traditional treatment options yet? If not that's probably the first thing you should consider. The word traditional is probably a poor choice of words as much of the drug treatments are actually very new and focused around immunotherapy whereby the human body's natural healing functions are unleashed and allowed to work longer against the cancer invader. I am not against alternative therapies but have a difficult time embracing something with results that might be more difficult to measure as compared to some of the current breakthrough drugs. I took Yervoy with very manageable and minor side effects and have read good things about the minor side effects of the Anti Pd-1 drugs currently being tested. I am hopeful that if my current yervoy treatment is not long term durable it will carry me along until one of the current or new breakthrough drugs is available and needed. I think its great that you are approaching this challenge with an open mind towards alternative therapies but would urge you not to overlook some of these new drugs with measurable and successful results as well as minor to moderate side effects. I do look forward to hearing more about some of the alternative options you uncover that might be worth a deeper look. 

Maggie,

Have you found a melanoma specialist to guide you through the traditional treatment options yet? If not that's probably the first thing you should consider. The word traditional is probably a poor choice of words as much of the drug treatments are actually very new and focused around immunotherapy whereby the human body's natural healing functions are unleashed and allowed to work longer against the cancer invader. I am not against alternative therapies but have a difficult time embracing something with results that might be more difficult to measure as compared to some of the current breakthrough drugs. I took Yervoy with very manageable and minor side effects and have read good things about the minor side effects of the Anti Pd-1 drugs currently being tested. I am hopeful that if my current yervoy treatment is not long term durable it will carry me along until one of the current or new breakthrough drugs is available and needed. I think its great that you are approaching this challenge with an open mind towards alternative therapies but would urge you not to overlook some of these new drugs with measurable and successful results as well as minor to moderate side effects. I do look forward to hearing more about some of the alternative options you uncover that might be worth a deeper look. 

Hi Maggie,

I was diagnosed with stage 4 in February and am now on the GSK BRAF / MEK Combo with no side effects.

Only in May will I know if those 2 do their magic as I am hoping for.

I had the same thought as you looking into alternative therapies and therefor am currently doing the following:

1. Reduce my stress: I am working but from home and not full time

2. Change my diet: Much less or almost no red meat, almost no sugar, bread and pasta only made from wholegrains, lots of fish and vegetables, sometimes white meat. You can read all about this in the most common anticancer diet books on Amazon.

3. Make sure I have a good people I trust that help me in my spiritual and psychological "being" and handling the fact that death does not seem something that might occur in 40 years only but might be closer.

4. I have made an appointment at a private clinic for hyperthermia. I have read, however, that this is more common as a treatment in Europe than in the US. There is whole body hyperthermia and partial hyperthermia. Of course there is no evidence that it helps at all but in brief whole body hyperthermia should cause fever that is then maintained for 4 hours and should strengthen your immune system. It is not covered by my insurance and I am not so sure whether my oncologist will like the idea! However, it seems clear to me that at least it cannot do any damage or make anything worse than it is already!

Hope this helps,

tcell

Hi Maggie,

I was diagnosed with stage 4 in February and am now on the GSK BRAF / MEK Combo with no side effects.

Only in May will I know if those 2 do their magic as I am hoping for.

I had the same thought as you looking into alternative therapies and therefor am currently doing the following:

1. Reduce my stress: I am working but from home and not full time

2. Change my diet: Much less or almost no red meat, almost no sugar, bread and pasta only made from wholegrains, lots of fish and vegetables, sometimes white meat. You can read all about this in the most common anticancer diet books on Amazon.

3. Make sure I have a good people I trust that help me in my spiritual and psychological "being" and handling the fact that death does not seem something that might occur in 40 years only but might be closer.

4. I have made an appointment at a private clinic for hyperthermia. I have read, however, that this is more common as a treatment in Europe than in the US. There is whole body hyperthermia and partial hyperthermia. Of course there is no evidence that it helps at all but in brief whole body hyperthermia should cause fever that is then maintained for 4 hours and should strengthen your immune system. It is not covered by my insurance and I am not so sure whether my oncologist will like the idea! However, it seems clear to me that at least it cannot do any damage or make anything worse than it is already!

Hope this helps,

tcell

Hi Maggie,

I was diagnosed with stage 4 in February and am now on the GSK BRAF / MEK Combo with no side effects.

Only in May will I know if those 2 do their magic as I am hoping for.

I had the same thought as you looking into alternative therapies and therefor am currently doing the following:

1. Reduce my stress: I am working but from home and not full time

2. Change my diet: Much less or almost no red meat, almost no sugar, bread and pasta only made from wholegrains, lots of fish and vegetables, sometimes white meat. You can read all about this in the most common anticancer diet books on Amazon.

3. Make sure I have a good people I trust that help me in my spiritual and psychological "being" and handling the fact that death does not seem something that might occur in 40 years only but might be closer.

4. I have made an appointment at a private clinic for hyperthermia. I have read, however, that this is more common as a treatment in Europe than in the US. There is whole body hyperthermia and partial hyperthermia. Of course there is no evidence that it helps at all but in brief whole body hyperthermia should cause fever that is then maintained for 4 hours and should strengthen your immune system. It is not covered by my insurance and I am not so sure whether my oncologist will like the idea! However, it seems clear to me that at least it cannot do any damage or make anything worse than it is already!

Hope this helps,

tcell

What I believe in now:

Exercise. My choice is walking, fits in with my lifestyle and age. An MD Anderson podcast suggested 10,000 steps a day which for me is about 4.5 miles. I often get close to this. Probably 

Diet. I eat for my general health (which is in turn likely good for fighting cancer), but nothing cancer-specifi. I don't shy away from dessert as long as my core diet is healthy; the body keeps blood sugar levels at a steady state so it's very hard to 'starve' cancer cells of sugar (as recently described by Dana Farber and others.)

Supplements. Been through that, don't do it anymore. Only supplement I take is 400 mg vitamin D because I stay out of sun so much. Takes slightly more effort to find small dose pills instead of megadose ones.

Sleep. I stick to good habits to promote good sleep.

What I believe in now:

Exercise. My choice is walking, fits in with my lifestyle and age. An MD Anderson podcast suggested 10,000 steps a day which for me is about 4.5 miles. I often get close to this. Probably 

Diet. I eat for my general health (which is in turn likely good for fighting cancer), but nothing cancer-specifi. I don't shy away from dessert as long as my core diet is healthy; the body keeps blood sugar levels at a steady state so it's very hard to 'starve' cancer cells of sugar (as recently described by Dana Farber and others.)

Supplements. Been through that, don't do it anymore. Only supplement I take is 400 mg vitamin D because I stay out of sun so much. Takes slightly more effort to find small dose pills instead of megadose ones.

Sleep. I stick to good habits to promote good sleep.

What I believe in now:

Exercise. My choice is walking, fits in with my lifestyle and age. An MD Anderson podcast suggested 10,000 steps a day which for me is about 4.5 miles. I often get close to this. Probably 

Diet. I eat for my general health (which is in turn likely good for fighting cancer), but nothing cancer-specifi. I don't shy away from dessert as long as my core diet is healthy; the body keeps blood sugar levels at a steady state so it's very hard to 'starve' cancer cells of sugar (as recently described by Dana Farber and others.)

Supplements. Been through that, don't do it anymore. Only supplement I take is 400 mg vitamin D because I stay out of sun so much. Takes slightly more effort to find small dose pills instead of megadose ones.

Sleep. I stick to good habits to promote good sleep.

Hi Maggie,

I am stage 4 and have chosen both alternative and conventional treatments.  I am on the anti pd1 drug trial and I see a holistic doctor as well that helps with my whole body health.

When I was diagnosed I decided to try everything I could to make my body, as a whole, healthier.  It was something that I felt I could control and therefore give my body a better chance at getting through this. 

I watched a few movies that really helped me make that change.  Like "Crazy Sexy Cancer," "Forks Over Knives," and "Fat, Sick, and Nearly Dead."  Those movies and a few books got me thinking and helped me to make some changes that I feel helped me get to where I am now…which is almost NED.  

I don't know if jumping on my mini-trampoline is helping a lot, or helping a little…but I will keep doing it because people say it really helps the body pump out toxins and my body does seem to feel better on the days that I do it.  I don't use my Microwave anymore to heat up food and instead I use the stove….and my gut is telling me that this is a very good decision.  I use the Infared Sauna once a week at my holistic clinic to help de-toxify my body….and at the very least I know it helps my digestion.  I've tried several other things and I feel happy that I have opened my eyes to trying different things.  I don't put a label on myself as eating only this way or that way or anything, I just try and feed my body more of the things that are more raw and natural and less processed….and that seems to make me feel better all around. 

I, like all of us, wish we knew EXACTLY what it was that we could do to fix this and make it all go away for good.  Is it the conventional pd1 treatment or the alternative health….I like to think it is a bit of both.  I have made so many great changes for my health, that it is hard to say which thing is helping the most and which things don't really help at all.  But since I am getting better, I will keep up doing all the healthy things I have been in hopes that I have found the "magic pill" so to speak.  🙂

Laurie

Hi Maggie,

I am stage 4 and have chosen both alternative and conventional treatments.  I am on the anti pd1 drug trial and I see a holistic doctor as well that helps with my whole body health.

When I was diagnosed I decided to try everything I could to make my body, as a whole, healthier.  It was something that I felt I could control and therefore give my body a better chance at getting through this. 

I watched a few movies that really helped me make that change.  Like "Crazy Sexy Cancer," "Forks Over Knives," and "Fat, Sick, and Nearly Dead."  Those movies and a few books got me thinking and helped me to make some changes that I feel helped me get to where I am now…which is almost NED.  

I don't know if jumping on my mini-trampoline is helping a lot, or helping a little…but I will keep doing it because people say it really helps the body pump out toxins and my body does seem to feel better on the days that I do it.  I don't use my Microwave anymore to heat up food and instead I use the stove….and my gut is telling me that this is a very good decision.  I use the Infared Sauna once a week at my holistic clinic to help de-toxify my body….and at the very least I know it helps my digestion.  I've tried several other things and I feel happy that I have opened my eyes to trying different things.  I don't put a label on myself as eating only this way or that way or anything, I just try and feed my body more of the things that are more raw and natural and less processed….and that seems to make me feel better all around. 

I, like all of us, wish we knew EXACTLY what it was that we could do to fix this and make it all go away for good.  Is it the conventional pd1 treatment or the alternative health….I like to think it is a bit of both.  I have made so many great changes for my health, that it is hard to say which thing is helping the most and which things don't really help at all.  But since I am getting better, I will keep up doing all the healthy things I have been in hopes that I have found the "magic pill" so to speak.  🙂

Laurie

Hi Maggie,

I am stage 4 and have chosen both alternative and conventional treatments.  I am on the anti pd1 drug trial and I see a holistic doctor as well that helps with my whole body health.

When I was diagnosed I decided to try everything I could to make my body, as a whole, healthier.  It was something that I felt I could control and therefore give my body a better chance at getting through this. 

I watched a few movies that really helped me make that change.  Like "Crazy Sexy Cancer," "Forks Over Knives," and "Fat, Sick, and Nearly Dead."  Those movies and a few books got me thinking and helped me to make some changes that I feel helped me get to where I am now…which is almost NED.  

I don't know if jumping on my mini-trampoline is helping a lot, or helping a little…but I will keep doing it because people say it really helps the body pump out toxins and my body does seem to feel better on the days that I do it.  I don't use my Microwave anymore to heat up food and instead I use the stove….and my gut is telling me that this is a very good decision.  I use the Infared Sauna once a week at my holistic clinic to help de-toxify my body….and at the very least I know it helps my digestion.  I've tried several other things and I feel happy that I have opened my eyes to trying different things.  I don't put a label on myself as eating only this way or that way or anything, I just try and feed my body more of the things that are more raw and natural and less processed….and that seems to make me feel better all around. 

I, like all of us, wish we knew EXACTLY what it was that we could do to fix this and make it all go away for good.  Is it the conventional pd1 treatment or the alternative health….I like to think it is a bit of both.  I have made so many great changes for my health, that it is hard to say which thing is helping the most and which things don't really help at all.  But since I am getting better, I will keep up doing all the healthy things I have been in hopes that I have found the "magic pill" so to speak.  🙂

Laurie