TUMERIC

Learn about a treatment for adult patients with KIT+ GIST, Ph+ CML, or other rare diseases. 

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Your medical problemw sound a  lot like my wife's.  She may not leave the house for weeks and then often uses an electric cart in stores.  She has even much more pain and fatigue that I do. She spends about 16 hours a day sleeping and the resst of the day in bed, most days. So I too am a full  time caretaker in additiion to needing to do even more than I ever did  in the past.  Some things are just impossssible!.  She will not take hardly any supplements that I suggest. (Like long term doxycycline for RA -per Dr Gabe Mirkin or any other pills .)

To date, no melanoma tumors have been found to contain both c-kit and BRAF DNA mutations.  They are currently believed to be mutually exclusive. (Not like BRAF and KRAS).  There are at least 4 targeted chemo's that have some effect against some of the c-kit mutations.  Trials are underway to determine which drug has what effect against which c-kit mutation.  I was  lucky enough to have found out about the first published peer reviewed report about c-kit and Gleevec.  I also talked with Dr Wen Jen Hwu at MDA who was also working with the combination.  This was before the IL-2 stopped working, but the delay in progression had let me make it to the point that this report was published.  I presented my findings  to my great Melanoma team and after they checked into they agreed to try me off label on the FDA approved drug (Not approved for melanoma).  It was amazing that these great Melanoma Oncologists listened to me, who didn't know what an Oncologist was, until the month before I met them.

     I also learned that Gleevec is delivered into melanoma cells by riding in with oxidants.  I used to take higher levels of anti-oxidants but reduced the amounts of anti-oxidant supplements to hope that more of the Gleevec would get into the tumors.   I still eat foods with a fair amount of anti-oxidants in them.  Most of my Fathers side of the family has died from circulatory problems (Heart attack, stroke, congestive heart problems) So I am concerned about taking things that help this side of the body.  The Neurological ICU Doctors were amazed that my heart kept functioning in 2010 when they were sure the horse had killed me.  I do not know now if my extreme fatigue and anemia is due to problems relating to Melanoma, melanoma treatments, or the extreme head and body damage from the horse accident.

• Gleevec 400 mg (Started March 2009)

• Curcumin 500 mg (Started March 2009)

• Slo-Niacin  500     Triglycerides plus

• Fish Oil 1000 mg (Started 2009)

• Vit D3 2000 IU  (Started March 2011)

• Glucosimen/msm (For joints busted up in 1980)

NOON

• Vit E 400 (Brain and body- took 2000 units daily before Gleevec)

• multi-vitamin  (Kirkland Mature)

• B-12  Recently started – hoping to reduce fatigue)

• Vit C 500 (down from 1000/d pre Gleevec)

SUPPER

• TriCor 145 mg  (Triglycerides)

• Saw palmetto/Pumpkin seed (Prostate)

• CoQ10 300 mg

• Aspirin 325 mg  (Heart/Melanoma/sometimes headache)

Bedtime

• Gleevec 400 mg

• Slo-Niacin 500  (Triglycerides plus)

• Fish Oil 1000 mg

• Tums-2  500  tabs to reduce cough for sleeping – prescribed by ENT doc)

as needed:: Ambein 10 mg Ref

                    Quinine-leg cramps                 

As Available:  (Hard to get prescribed for long term usage).  Doxycycline 100 mg twice a day  For lungs and melanoma

Learn about a treatment for adult patients with KIT+ GIST, Ph+ CML, or other rare diseases. 

************************************************

Your medical problemw sound a  lot like my wife's.  She may not leave the house for weeks and then often uses an electric cart in stores.  She has even much more pain and fatigue that I do. She spends about 16 hours a day sleeping and the resst of the day in bed, most days. So I too am a full  time caretaker in additiion to needing to do even more than I ever did  in the past.  Some things are just impossssible!.  She will not take hardly any supplements that I suggest. (Like long term doxycycline for RA -per Dr Gabe Mirkin or any other pills .)

To date, no melanoma tumors have been found to contain both c-kit and BRAF DNA mutations.  They are currently believed to be mutually exclusive. (Not like BRAF and KRAS).  There are at least 4 targeted chemo's that have some effect against some of the c-kit mutations.  Trials are underway to determine which drug has what effect against which c-kit mutation.  I was  lucky enough to have found out about the first published peer reviewed report about c-kit and Gleevec.  I also talked with Dr Wen Jen Hwu at MDA who was also working with the combination.  This was before the IL-2 stopped working, but the delay in progression had let me make it to the point that this report was published.  I presented my findings  to my great Melanoma team and after they checked into they agreed to try me off label on the FDA approved drug (Not approved for melanoma).  It was amazing that these great Melanoma Oncologists listened to me, who didn't know what an Oncologist was, until the month before I met them.

     I also learned that Gleevec is delivered into melanoma cells by riding in with oxidants.  I used to take higher levels of anti-oxidants but reduced the amounts of anti-oxidant supplements to hope that more of the Gleevec would get into the tumors.   I still eat foods with a fair amount of anti-oxidants in them.  Most of my Fathers side of the family has died from circulatory problems (Heart attack, stroke, congestive heart problems) So I am concerned about taking things that help this side of the body.  The Neurological ICU Doctors were amazed that my heart kept functioning in 2010 when they were sure the horse had killed me.  I do not know now if my extreme fatigue and anemia is due to problems relating to Melanoma, melanoma treatments, or the extreme head and body damage from the horse accident.

• Gleevec 400 mg (Started March 2009)

• Curcumin 500 mg (Started March 2009)

• Slo-Niacin  500     Triglycerides plus

• Fish Oil 1000 mg (Started 2009)

• Vit D3 2000 IU  (Started March 2011)

• Glucosimen/msm (For joints busted up in 1980)

NOON

• Vit E 400 (Brain and body- took 2000 units daily before Gleevec)

• multi-vitamin  (Kirkland Mature)

• B-12  Recently started – hoping to reduce fatigue)

• Vit C 500 (down from 1000/d pre Gleevec)

SUPPER

• TriCor 145 mg  (Triglycerides)

• Saw palmetto/Pumpkin seed (Prostate)

• CoQ10 300 mg

• Aspirin 325 mg  (Heart/Melanoma/sometimes headache)

Bedtime

• Gleevec 400 mg

• Slo-Niacin 500  (Triglycerides plus)

• Fish Oil 1000 mg

• Tums-2  500  tabs to reduce cough for sleeping – prescribed by ENT doc)

as needed:: Ambein 10 mg Ref

                    Quinine-leg cramps                 

As Available:  (Hard to get prescribed for long term usage).  Doxycycline 100 mg twice a day  For lungs and melanoma

Learn about a treatment for adult patients with KIT+ GIST, Ph+ CML, or other rare diseases. 

************************************************

Your medical problemw sound a  lot like my wife's.  She may not leave the house for weeks and then often uses an electric cart in stores.  She has even much more pain and fatigue that I do. She spends about 16 hours a day sleeping and the resst of the day in bed, most days. So I too am a full  time caretaker in additiion to needing to do even more than I ever did  in the past.  Some things are just impossssible!.  She will not take hardly any supplements that I suggest. (Like long term doxycycline for RA -per Dr Gabe Mirkin or any other pills .)

To date, no melanoma tumors have been found to contain both c-kit and BRAF DNA mutations.  They are currently believed to be mutually exclusive. (Not like BRAF and KRAS).  There are at least 4 targeted chemo's that have some effect against some of the c-kit mutations.  Trials are underway to determine which drug has what effect against which c-kit mutation.  I was  lucky enough to have found out about the first published peer reviewed report about c-kit and Gleevec.  I also talked with Dr Wen Jen Hwu at MDA who was also working with the combination.  This was before the IL-2 stopped working, but the delay in progression had let me make it to the point that this report was published.  I presented my findings  to my great Melanoma team and after they checked into they agreed to try me off label on the FDA approved drug (Not approved for melanoma).  It was amazing that these great Melanoma Oncologists listened to me, who didn't know what an Oncologist was, until the month before I met them.

     I also learned that Gleevec is delivered into melanoma cells by riding in with oxidants.  I used to take higher levels of anti-oxidants but reduced the amounts of anti-oxidant supplements to hope that more of the Gleevec would get into the tumors.   I still eat foods with a fair amount of anti-oxidants in them.  Most of my Fathers side of the family has died from circulatory problems (Heart attack, stroke, congestive heart problems) So I am concerned about taking things that help this side of the body.  The Neurological ICU Doctors were amazed that my heart kept functioning in 2010 when they were sure the horse had killed me.  I do not know now if my extreme fatigue and anemia is due to problems relating to Melanoma, melanoma treatments, or the extreme head and body damage from the horse accident.

• Gleevec 400 mg (Started March 2009)

• Curcumin 500 mg (Started March 2009)

• Slo-Niacin  500     Triglycerides plus

• Fish Oil 1000 mg (Started 2009)

• Vit D3 2000 IU  (Started March 2011)

• Glucosimen/msm (For joints busted up in 1980)

NOON

• Vit E 400 (Brain and body- took 2000 units daily before Gleevec)

• multi-vitamin  (Kirkland Mature)

• B-12  Recently started – hoping to reduce fatigue)

• Vit C 500 (down from 1000/d pre Gleevec)

SUPPER

• TriCor 145 mg  (Triglycerides)

• Saw palmetto/Pumpkin seed (Prostate)

• CoQ10 300 mg

• Aspirin 325 mg  (Heart/Melanoma/sometimes headache)

Bedtime

• Gleevec 400 mg

• Slo-Niacin 500  (Triglycerides plus)

• Fish Oil 1000 mg

• Tums-2  500  tabs to reduce cough for sleeping – prescribed by ENT doc)

as needed:: Ambein 10 mg Ref

                    Quinine-leg cramps                 

As Available:  (Hard to get prescribed for long term usage).  Doxycycline 100 mg twice a day  For lungs and melanoma