Gene S-how are you doing!
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Gene S-how are you doing!

› Forums › General Melanoma Community › Gene S-how are you doing!

  • Post
    • June 11, 2011 at 4:44 pm
    killmel
    Participant

    Hi Gene,

     

    I have been off the board traveling so I have lost track of many people's progress on MPIP.

    If I recall you had surgery weeks ago, how are you doing & are you having any form of treatment? If so, where.

    Looking forward to your update.

    Best to you.

    Douglas

    Hi Gene,

     

    I have been off the board traveling so I have lost track of many people's progress on MPIP.

    If I recall you had surgery weeks ago, how are you doing & are you having any form of treatment? If so, where.

    Looking forward to your update.

    Best to you.

    Douglas

Viewing 1 reply thread
  • Replies
      • June 12, 2011 at 2:11 am
      Gene_S
      Participant

      Thanks for your inquiry.  I will give the cliff notes version of my melanoma.  It started from a mole in 2007 on the back of my scalp.  As a typical male, I ignored my wifes request to go see a Dr.  It finally started seeping so I knew that I should listen to her and went to see a dermatologist.  He removed the seeping mole and sent it out for testing.  It came back melanoma and was 10.5 mm deep and the journey began.  I have had 4 surgeries to remove melanoma that kept reoccurring. Last fall when I thought I was all done with this beast another lesion was discovered growing on the back of my scalp.  This time surgery was not an option as it was to close to the spine to do surgery.  I tried to get into the Oncovex trial only to be turned down because the liver melanoma lesions were to large.  I was accepted for the IPI with GM-CSF arm trial.  I started on the trial in March 2011 and did 4 treatments.  After the second treatment the lesions on the back of my scalp started shrinking very quickly.  My 12 week follow up scans showed that the lesions in my liver, lungs and scalp have shrunk by more than 50%.  Thank God and all the people that are praying for me!!!!!   I am a firm believer that family and prayers as well as high dose of Vitamin D3 and selenium daily and not to forget the red wine helped along with the treatments to send my melanoma into regression.  Now I am on the maintenance schedule for IPI and the GM-CSF.  My next visit to my Dr. will be June 17 and I will let you know the results from that visit.  I am scheduled for more scans the end of July.  Best Wishes,  Gene Stage IV, scalp/head/liver/lungs

        • June 13, 2011 at 7:22 pm
        TracyLee
        Participant

        Gene,

        I am ecstatic to see this post. I'm stage IV also. Scalp/neck/lungs, just like you. I'm on my second dose of Ipi this Thursday, and am excited to see your excellent Ipi response!

        Did you have any Ipi reactions, and if so, when?

        What is the maintenance schedule for Ipi? I'm only aware of the 4 doses, once every three weeks?

        God is in control.

        TracyLee

        • June 13, 2011 at 7:22 pm
        TracyLee
        Participant

        Gene,

        I am ecstatic to see this post. I'm stage IV also. Scalp/neck/lungs, just like you. I'm on my second dose of Ipi this Thursday, and am excited to see your excellent Ipi response!

        Did you have any Ipi reactions, and if so, when?

        What is the maintenance schedule for Ipi? I'm only aware of the 4 doses, once every three weeks?

        God is in control.

        TracyLee

        • June 18, 2011 at 2:38 am
        Gene_S
        Participant

        Hello TracyLee,

        Sorry for the delay in replying as today was a follow-up day with the oncologist.

        As far as side effects from Ipi at the very beginning I had rashes and itching.  Keep in mind that I am doing a trial with the GM-CSF so it is a possibility that the side effects may be from it and not the Ipi.  Keep in mind it is called the Ipi itch with or without a rash mostly on the back and chest is what my oncologist says.    My response to Ipi was dramatically noticed after the second infusion and I hope that yours shows a significant regression.

        From your posting I assume that you're not on a trial but on the regular regiment.  I do believe that there is a follow-up maintenance program,  I, however, since I am on the trial will be getting at least one more infusion of Ipi next month ( at the end of my second 12 weeks and then will have further scans to see how much regression has taken place.  The research director in charge of my clinical trial informed me today that my ratio of reduction is 39-40% for all the tumors which is very good news.  My oncologist, my wife and I are all ecstatic.  Some more than 50% while some were less.

        Again I hope that Ipi works well for you and as well as it has for me.  I previously mentioned to you about getting your Vitamin D3 checked as I am a firm believer that this is a part of my success with treatment.  Mine if very high in the test.  I have spent thousands of hours researching the causes of melanoma and Vitamin D3 defiency is one of the biggest.  If you read my other replies you will know that I feel my melanoma was caused by a lack of sunshine and the Vitamin D3 that you get from it.

        Any further questions feel free to ask.

        Best Wishes,

        Gene

        • June 18, 2011 at 2:38 am
        Gene_S
        Participant

        Hello TracyLee,

        Sorry for the delay in replying as today was a follow-up day with the oncologist.

        As far as side effects from Ipi at the very beginning I had rashes and itching.  Keep in mind that I am doing a trial with the GM-CSF so it is a possibility that the side effects may be from it and not the Ipi.  Keep in mind it is called the Ipi itch with or without a rash mostly on the back and chest is what my oncologist says.    My response to Ipi was dramatically noticed after the second infusion and I hope that yours shows a significant regression.

        From your posting I assume that you're not on a trial but on the regular regiment.  I do believe that there is a follow-up maintenance program,  I, however, since I am on the trial will be getting at least one more infusion of Ipi next month ( at the end of my second 12 weeks and then will have further scans to see how much regression has taken place.  The research director in charge of my clinical trial informed me today that my ratio of reduction is 39-40% for all the tumors which is very good news.  My oncologist, my wife and I are all ecstatic.  Some more than 50% while some were less.

        Again I hope that Ipi works well for you and as well as it has for me.  I previously mentioned to you about getting your Vitamin D3 checked as I am a firm believer that this is a part of my success with treatment.  Mine if very high in the test.  I have spent thousands of hours researching the causes of melanoma and Vitamin D3 defiency is one of the biggest.  If you read my other replies you will know that I feel my melanoma was caused by a lack of sunshine and the Vitamin D3 that you get from it.

        Any further questions feel free to ask.

        Best Wishes,

        Gene

      • June 12, 2011 at 2:11 am
      Gene_S
      Participant

      Thanks for your inquiry.  I will give the cliff notes version of my melanoma.  It started from a mole in 2007 on the back of my scalp.  As a typical male, I ignored my wifes request to go see a Dr.  It finally started seeping so I knew that I should listen to her and went to see a dermatologist.  He removed the seeping mole and sent it out for testing.  It came back melanoma and was 10.5 mm deep and the journey began.  I have had 4 surgeries to remove melanoma that kept reoccurring. Last fall when I thought I was all done with this beast another lesion was discovered growing on the back of my scalp.  This time surgery was not an option as it was to close to the spine to do surgery.  I tried to get into the Oncovex trial only to be turned down because the liver melanoma lesions were to large.  I was accepted for the IPI with GM-CSF arm trial.  I started on the trial in March 2011 and did 4 treatments.  After the second treatment the lesions on the back of my scalp started shrinking very quickly.  My 12 week follow up scans showed that the lesions in my liver, lungs and scalp have shrunk by more than 50%.  Thank God and all the people that are praying for me!!!!!   I am a firm believer that family and prayers as well as high dose of Vitamin D3 and selenium daily and not to forget the red wine helped along with the treatments to send my melanoma into regression.  Now I am on the maintenance schedule for IPI and the GM-CSF.  My next visit to my Dr. will be June 17 and I will let you know the results from that visit.  I am scheduled for more scans the end of July.  Best Wishes,  Gene Stage IV, scalp/head/liver/lungs

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