frankMill

I'm still in the Mage Trial at Moffitt.  Dr. Weber tells me his trial results appear to be good. However, it could be a statistical anomaly based on a small number of people in the trial.   I'm one year into the trial and still NED.  This trial is for Stage IV ressected tumor patients.  I only had one met in my chest and an SNB.  Not sure how long I would have been NED without the trial. I certainly wouldn't put any judgement into this trial program until the stage is complete and the results are published. 

Dr. Weber is amazing.   He tells it like it is, no sugar coating.  I'm very happy with the trial and with Moffitt based upon my situation. 

My plan is that if a tumor appears, I'll work with Dr. Weber on another program and just keep throwing up roadblocks in the event that a cure appears on the horizon in in the next five years.  We are all simply buying time… enjoy every moment. 

I was diagnosed with Stage IV last August, had it removed along with an SNB.  The local hospitals here in Jacksonville are not Melanoma specialists and pushed me hard to go into the IPI vs interferon trial. IPI sounded interesting but was told that interferon has a 2-3% lift, so what?  It sounded like a full year of torture to me.  I did some research and determined MD Anderson, Moffitt, or Sloan would be good places to get second opinions from.

Thank god I made the trip to Moffitt.  I wasnt eligible for the PD-1 trial, but I did get into the Mage trial for Stage IV resected patients.  I was the 5th patient of Moffitt's to receive it.  It is not double-blind with a placebo.  You either get the Mage or Mage with a Poly immune booster.  I get the Mage with Poly IC:LC.  The side effects are minimal, fevers that decrease with each shot, a small rash at the injection site, soreness and some fatigue.  The results are really good , I'm still NED!  This may or may not be a cure.  My personal belief is that it may be a good roadblock, slowing the disease down.  If so, it's buying me time until better treatments or a cure is introduced.  Until then, I live from CAT scan to CAT scan.

All that I can say is that there is a huge diffference between visiting a local oncologist (that treats every cancer) versus going to a Melanoma specialist. Moffitt has a wing that does nothing but Melanoma treatment and research.  They have a super computer and their own laboratories with staff research scientists. There is so much research being done on Melanoma all over the U.S.

My advice? Do your own research and find a Melanoma specialist.  Spend the money, take the time,  make the trip.  Life is too precious.

I was diagnosed with Stage IV last August, had it removed along with an SNB.  The local hospitals here in Jacksonville are not Melanoma specialists and pushed me hard to go into the IPI vs interferon trial. IPI sounded interesting but was told that interferon has a 2-3% lift, so what?  It sounded like a full year of torture to me.  I did some research and determined MD Anderson, Moffitt, or Sloan would be good places to get second opinions from.

Thank god I made the trip to Moffitt.  I wasnt eligible for the PD-1 trial, but I did get into the Mage trial for Stage IV resected patients.  I was the 5th patient of Moffitt's to receive it.  It is not double-blind with a placebo.  You either get the Mage or Mage with a Poly immune booster.  I get the Mage with Poly IC:LC.  The side effects are minimal, fevers that decrease with each shot, a small rash at the injection site, soreness and some fatigue.  The results are really good , I'm still NED!  This may or may not be a cure.  My personal belief is that it may be a good roadblock, slowing the disease down.  If so, it's buying me time until better treatments or a cure is introduced.  Until then, I live from CAT scan to CAT scan.

All that I can say is that there is a huge diffference between visiting a local oncologist (that treats every cancer) versus going to a Melanoma specialist. Moffitt has a wing that does nothing but Melanoma treatment and research.  They have a super computer and their own laboratories with staff research scientists. There is so much research being done on Melanoma all over the U.S.

My advice? Do your own research and find a Melanoma specialist.  Spend the money, take the time,  make the trip.  Life is too precious.

I was diagnosed with Stage IV last August, had it removed along with an SNB.  The local hospitals here in Jacksonville are not Melanoma specialists and pushed me hard to go into the IPI vs interferon trial. IPI sounded interesting but was told that interferon has a 2-3% lift, so what?  It sounded like a full year of torture to me.  I did some research and determined MD Anderson, Moffitt, or Sloan would be good places to get second opinions from.

Thank god I made the trip to Moffitt.  I wasnt eligible for the PD-1 trial, but I did get into the Mage trial for Stage IV resected patients.  I was the 5th patient of Moffitt's to receive it.  It is not double-blind with a placebo.  You either get the Mage or Mage with a Poly immune booster.  I get the Mage with Poly IC:LC.  The side effects are minimal, fevers that decrease with each shot, a small rash at the injection site, soreness and some fatigue.  The results are really good , I'm still NED!  This may or may not be a cure.  My personal belief is that it may be a good roadblock, slowing the disease down.  If so, it's buying me time until better treatments or a cure is introduced.  Until then, I live from CAT scan to CAT scan.

All that I can say is that there is a huge diffference between visiting a local oncologist (that treats every cancer) versus going to a Melanoma specialist. Moffitt has a wing that does nothing but Melanoma treatment and research.  They have a super computer and their own laboratories with staff research scientists. There is so much research being done on Melanoma all over the U.S.

My advice? Do your own research and find a Melanoma specialist.  Spend the money, take the time,  make the trip.  Life is too precious.

Hi Brooke,

I see that you guys are in Colorado, I grew up there.  Too high an altitude, too much sunshine, and too many sunburns as a child!  Now in FL, I'm Stage IV and in the Moffitt Mage vaccine  trial.  The trial is going very well for me, one year out and still NED.

My doctor says that I am his healthiest Melanoma patient and I hope and pray to keep that honor.  When I was diagnosed, I changed my diet and supplements quickly.  I try to eat foods that are anti-angiogenic. Stopped eating red meat, sugar, cheese and dairy.  Research Dr. Li at the Aangiogenic  Institute and check out the video "Forks over knives".

I stopped juicing in favor of a Vitamix drink every morning with strawberries, blueberries, apple, banana, spinach, kale,carrots, brocolli and mushrooms.  It's sounds bad but its actually really good! After drinking my shake, i usually have two cups of tea, one green tea and one earl gray.

I don't take a lot of supplements but here are the ones I do take:

1 Curcumin (500 mg)

1 capful of Isotonic OPC-3 (liquid anti-oxidants that have great absorption)

2 Reishi mushroom extract capsules (500mg)

Omega D3 package

Other than MD Anderson's work on Curcumin, I didn't find any solid scientific studies that many supplements fight or prevent cancer.  If someone on the forum has the data, let me know.

 All that I can say is that regardless of the Mage vaccine, I am still NED and feel great! I intend to keep taking my supplements as a precautionary measure.

All the best!

Hi Brooke,

I see that you guys are in Colorado, I grew up there.  Too high an altitude, too much sunshine, and too many sunburns as a child!  Now in FL, I'm Stage IV and in the Moffitt Mage vaccine  trial.  The trial is going very well for me, one year out and still NED.

My doctor says that I am his healthiest Melanoma patient and I hope and pray to keep that honor.  When I was diagnosed, I changed my diet and supplements quickly.  I try to eat foods that are anti-angiogenic. Stopped eating red meat, sugar, cheese and dairy.  Research Dr. Li at the Aangiogenic  Institute and check out the video "Forks over knives".

I stopped juicing in favor of a Vitamix drink every morning with strawberries, blueberries, apple, banana, spinach, kale,carrots, brocolli and mushrooms.  It's sounds bad but its actually really good! After drinking my shake, i usually have two cups of tea, one green tea and one earl gray.

I don't take a lot of supplements but here are the ones I do take:

1 Curcumin (500 mg)

1 capful of Isotonic OPC-3 (liquid anti-oxidants that have great absorption)

2 Reishi mushroom extract capsules (500mg)

Omega D3 package

Other than MD Anderson's work on Curcumin, I didn't find any solid scientific studies that many supplements fight or prevent cancer.  If someone on the forum has the data, let me know.

 All that I can say is that regardless of the Mage vaccine, I am still NED and feel great! I intend to keep taking my supplements as a precautionary measure.

All the best!

Hi Brooke,

I see that you guys are in Colorado, I grew up there.  Too high an altitude, too much sunshine, and too many sunburns as a child!  Now in FL, I'm Stage IV and in the Moffitt Mage vaccine  trial.  The trial is going very well for me, one year out and still NED.

My doctor says that I am his healthiest Melanoma patient and I hope and pray to keep that honor.  When I was diagnosed, I changed my diet and supplements quickly.  I try to eat foods that are anti-angiogenic. Stopped eating red meat, sugar, cheese and dairy.  Research Dr. Li at the Aangiogenic  Institute and check out the video "Forks over knives".

I stopped juicing in favor of a Vitamix drink every morning with strawberries, blueberries, apple, banana, spinach, kale,carrots, brocolli and mushrooms.  It's sounds bad but its actually really good! After drinking my shake, i usually have two cups of tea, one green tea and one earl gray.

I don't take a lot of supplements but here are the ones I do take:

1 Curcumin (500 mg)

1 capful of Isotonic OPC-3 (liquid anti-oxidants that have great absorption)

2 Reishi mushroom extract capsules (500mg)

Omega D3 package

Other than MD Anderson's work on Curcumin, I didn't find any solid scientific studies that many supplements fight or prevent cancer.  If someone on the forum has the data, let me know.

 All that I can say is that regardless of the Mage vaccine, I am still NED and feel great! I intend to keep taking my supplements as a precautionary measure.

All the best!

I was Stage IV NED last fall in the same situation.  I didn't want to do a double blind placebo study.  Made the trip to Moffitt and met with Dr. Weber.   In all of their trials, every patient gets the good stuff!

I was not elibible for PD-1, but I was eligible for the Mage.  Dr. Weber thinks that the early results for Mage look very promising.   I have another quarterly round of tests next week (I really dread those things).

Yes, I did have the option of not doing a trial and waiting for another met to appear, but I'd rather be proactive or throw up some potential road blocks.  From everything I've learned about melanoma, you can't just hope that it's gone.  Most likely, it's still in our bodies trying to cluster new tumors.

I wish you all the best!

Frank

I was Stage IV NED last fall in the same situation.  I didn't want to do a double blind placebo study.  Made the trip to Moffitt and met with Dr. Weber.   In all of their trials, every patient gets the good stuff!

I was not elibible for PD-1, but I was eligible for the Mage.  Dr. Weber thinks that the early results for Mage look very promising.   I have another quarterly round of tests next week (I really dread those things).

Yes, I did have the option of not doing a trial and waiting for another met to appear, but I'd rather be proactive or throw up some potential road blocks.  From everything I've learned about melanoma, you can't just hope that it's gone.  Most likely, it's still in our bodies trying to cluster new tumors.

I wish you all the best!

Frank

I was Stage IV NED last fall in the same situation.  I didn't want to do a double blind placebo study.  Made the trip to Moffitt and met with Dr. Weber.   In all of their trials, every patient gets the good stuff!

I was not elibible for PD-1, but I was eligible for the Mage.  Dr. Weber thinks that the early results for Mage look very promising.   I have another quarterly round of tests next week (I really dread those things).

Yes, I did have the option of not doing a trial and waiting for another met to appear, but I'd rather be proactive or throw up some potential road blocks.  From everything I've learned about melanoma, you can't just hope that it's gone.  Most likely, it's still in our bodies trying to cluster new tumors.

I wish you all the best!

Frank

I'm still in the Mage Trial at Moffitt.  Dr. Weber tells me his trial results appear to be good. However, it could be a statistical anomaly based on a small number of people in the trial.   I'm one year into the trial and still NED.  This trial is for Stage IV ressected tumor patients.  I only had one met in my chest and an SNB.  Not sure how long I would have been NED without the trial. I certainly wouldn't put any judgement into this trial program until the stage is complete and the results are published. 

Dr. Weber is amazing.   He tells it like it is, no sugar coating.  I'm very happy with the trial and with Moffitt based upon my situation. 

My plan is that if a tumor appears, I'll work with Dr. Weber on another program and just keep throwing up roadblocks in the event that a cure appears on the horizon in in the next five years.  We are all simply buying time… enjoy every moment. 

I'm still in the Mage Trial at Moffitt.  Dr. Weber tells me his trial results appear to be good. However, it could be a statistical anomaly based on a small number of people in the trial.   I'm one year into the trial and still NED.  This trial is for Stage IV ressected tumor patients.  I only had one met in my chest and an SNB.  Not sure how long I would have been NED without the trial. I certainly wouldn't put any judgement into this trial program until the stage is complete and the results are published. 

Dr. Weber is amazing.   He tells it like it is, no sugar coating.  I'm very happy with the trial and with Moffitt based upon my situation. 

My plan is that if a tumor appears, I'll work with Dr. Weber on another program and just keep throwing up roadblocks in the event that a cure appears on the horizon in in the next five years.  We are all simply buying time… enjoy every moment.