2 places testing my biopsy that was done locally – did I make a mistake?
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2 places testing my biopsy that was done locally – did I make a mistake?

› Forums › General Melanoma Community › 2 places testing my biopsy that was done locally – did I make a mistake?

  • Post
    • May 8, 2015 at 12:03 pm
    arthurjedi007
    Participant

    Did I make a mistake? Went to 2 long distant places and signed the forms so they can get my biopsy material that was done locally so they can do their test to see if I qualify for their trial. The tests will be done at different places.

    Wont that create a bottle neck where only the first place that got the material sent to them would do the test then the other place would have to wait until that test is done? Or would the local place send only a small amount to each? Good luck trying to get any info from the local place. It took my doc 3 months to get the result from a trial he tried to get me into.

    If I did make a mistake then I need to call the place that I'm not sure about their trial anyway and have them not do the test. The other place I really want in that trial.

    Artie

Viewing 5 reply threads
  • Replies
      • May 8, 2015 at 12:56 pm
      Bubbles
      Participant

      Hey Artie,

      Given all you've had done (sadly!) you should have enough biopsied material to send to both places. However, you have the right to call the lab's pathology department yourself to confirm that. It's your tissue, your body, your life and they are REQUIRED to answer your questions. Which trial ended up being your preference? I was sorry the LAG3 option seemed further out for enrollment than some of the info reported. Hang in there. You are always in my thoughts. Love, c

        • May 9, 2015 at 6:42 pm
        arthurjedi007
        Participant

        Thank you Celeste. I have a report the biopsy was done so I guess I'll start there to see what is going on. That's the biopsy that took weeks last January for my doc to get it done. Once they changed it to a different area of Barnes it got done the next day. I've never seen the result show up on either of their patient websites.

        I liked all 3. The lag3 pd1 combo would be good. The other 2 he says he's seeing them better than pd1. The paper he gave me on cd40 seems to work like pd1 and pdl combined in one med except it's cd40 instead of pd1. Xo40 he didn't give a paper.

        The 4th requires the b7-h3 on the tumor. Med is mga271. I thought he said it was brand new but I guess I misunderstood. It is brand new for the phase 1b part of the trial. Because the paper he gave talks about other people on it and some have even died but there was no indication it was the med that caused it but other issues. They have completed the dosing part and are now expanding to more patients. This is for several types of cancer.

        At u of I chicago they have the pac-1 med ready for enrollment. Someone on here posted about it awhile back. But I wasn't ready to sign yet. They are testing to see if I have igf-1 for a chemo med called igf-methotrexate. I'm not excited about this med. They have 3 patients on it. One is cycle 7 and one cycle 3. One quit at cycle 1 because he didn't want to tolerate the gi issues. This is for several types of cancer not just mel.

        Artie

        • May 10, 2015 at 12:03 am
        Bubbles
        Participant

        Well…that all sound pretty good to me!!  Like you, I like your top three picks best.  The CD40 stuff does seem promising!  I think you have done a super job at plowing through all this mess.  It's crazy, but you have really stayed on top of it.  I wish you my best with whichever way you end up going.  How are you feeling?  C

        • May 10, 2015 at 1:16 am
        arthurjedi007
        Participant

        Physically I feel great except I'm starting to feel some pressure in the back at that t10 spot. No big deal except I now know the tumor is almost at the spinal cord again according to the 4/20 scan. My saint Louis doc wants to wait until it gets bad again then try surgery again. So I heard from my mayo doc and he's asking his folks if they can freeze so waiting to hear about that. Also there is that chemo combo I think Shane did for his groin tumor that I might try. But for now it has almost no symptoms. I walk a couple hours a day. I can sit and touch my toes fine. When I was almost paralyzed last year that would cause a tight tugging all down my spine like maybe the spinal cord. I have little pain but back then last year until they had me on that mri bed I had little pain. Then it was massive but was gone by the next day. So pain is no indicator for me of being almost paralyzed.

        Mentally I'm a trying hard. At least going to Chicago has given me hope again so I'm better.

        Artie

        • May 10, 2015 at 2:14 pm
        Bubbles
        Participant

        Oh, Artie. I am glad to hear you are still feeling well.  I know the feeling of pressure in your back along with the scan results are very worrisome. I think you are doing a really great job of searching out options and then keeping them open. You are one tough dude. Let me know what you end up choosing. Hope you have a beautiful day! love, c

        • May 10, 2015 at 2:14 pm
        Bubbles
        Participant

        Oh, Artie. I am glad to hear you are still feeling well.  I know the feeling of pressure in your back along with the scan results are very worrisome. I think you are doing a really great job of searching out options and then keeping them open. You are one tough dude. Let me know what you end up choosing. Hope you have a beautiful day! love, c

        • May 10, 2015 at 2:14 pm
        Bubbles
        Participant

        Oh, Artie. I am glad to hear you are still feeling well.  I know the feeling of pressure in your back along with the scan results are very worrisome. I think you are doing a really great job of searching out options and then keeping them open. You are one tough dude. Let me know what you end up choosing. Hope you have a beautiful day! love, c

        • May 10, 2015 at 1:16 am
        arthurjedi007
        Participant

        Physically I feel great except I'm starting to feel some pressure in the back at that t10 spot. No big deal except I now know the tumor is almost at the spinal cord again according to the 4/20 scan. My saint Louis doc wants to wait until it gets bad again then try surgery again. So I heard from my mayo doc and he's asking his folks if they can freeze so waiting to hear about that. Also there is that chemo combo I think Shane did for his groin tumor that I might try. But for now it has almost no symptoms. I walk a couple hours a day. I can sit and touch my toes fine. When I was almost paralyzed last year that would cause a tight tugging all down my spine like maybe the spinal cord. I have little pain but back then last year until they had me on that mri bed I had little pain. Then it was massive but was gone by the next day. So pain is no indicator for me of being almost paralyzed.

        Mentally I'm a trying hard. At least going to Chicago has given me hope again so I'm better.

        Artie

        • May 10, 2015 at 1:16 am
        arthurjedi007
        Participant

        Physically I feel great except I'm starting to feel some pressure in the back at that t10 spot. No big deal except I now know the tumor is almost at the spinal cord again according to the 4/20 scan. My saint Louis doc wants to wait until it gets bad again then try surgery again. So I heard from my mayo doc and he's asking his folks if they can freeze so waiting to hear about that. Also there is that chemo combo I think Shane did for his groin tumor that I might try. But for now it has almost no symptoms. I walk a couple hours a day. I can sit and touch my toes fine. When I was almost paralyzed last year that would cause a tight tugging all down my spine like maybe the spinal cord. I have little pain but back then last year until they had me on that mri bed I had little pain. Then it was massive but was gone by the next day. So pain is no indicator for me of being almost paralyzed.

        Mentally I'm a trying hard. At least going to Chicago has given me hope again so I'm better.

        Artie

        • May 10, 2015 at 12:03 am
        Bubbles
        Participant

        Well…that all sound pretty good to me!!  Like you, I like your top three picks best.  The CD40 stuff does seem promising!  I think you have done a super job at plowing through all this mess.  It's crazy, but you have really stayed on top of it.  I wish you my best with whichever way you end up going.  How are you feeling?  C

        • May 10, 2015 at 12:03 am
        Bubbles
        Participant

        Well…that all sound pretty good to me!!  Like you, I like your top three picks best.  The CD40 stuff does seem promising!  I think you have done a super job at plowing through all this mess.  It's crazy, but you have really stayed on top of it.  I wish you my best with whichever way you end up going.  How are you feeling?  C

        • May 9, 2015 at 6:42 pm
        arthurjedi007
        Participant

        Thank you Celeste. I have a report the biopsy was done so I guess I'll start there to see what is going on. That's the biopsy that took weeks last January for my doc to get it done. Once they changed it to a different area of Barnes it got done the next day. I've never seen the result show up on either of their patient websites.

        I liked all 3. The lag3 pd1 combo would be good. The other 2 he says he's seeing them better than pd1. The paper he gave me on cd40 seems to work like pd1 and pdl combined in one med except it's cd40 instead of pd1. Xo40 he didn't give a paper.

        The 4th requires the b7-h3 on the tumor. Med is mga271. I thought he said it was brand new but I guess I misunderstood. It is brand new for the phase 1b part of the trial. Because the paper he gave talks about other people on it and some have even died but there was no indication it was the med that caused it but other issues. They have completed the dosing part and are now expanding to more patients. This is for several types of cancer.

        At u of I chicago they have the pac-1 med ready for enrollment. Someone on here posted about it awhile back. But I wasn't ready to sign yet. They are testing to see if I have igf-1 for a chemo med called igf-methotrexate. I'm not excited about this med. They have 3 patients on it. One is cycle 7 and one cycle 3. One quit at cycle 1 because he didn't want to tolerate the gi issues. This is for several types of cancer not just mel.

        Artie

        • May 9, 2015 at 6:42 pm
        arthurjedi007
        Participant

        Thank you Celeste. I have a report the biopsy was done so I guess I'll start there to see what is going on. That's the biopsy that took weeks last January for my doc to get it done. Once they changed it to a different area of Barnes it got done the next day. I've never seen the result show up on either of their patient websites.

        I liked all 3. The lag3 pd1 combo would be good. The other 2 he says he's seeing them better than pd1. The paper he gave me on cd40 seems to work like pd1 and pdl combined in one med except it's cd40 instead of pd1. Xo40 he didn't give a paper.

        The 4th requires the b7-h3 on the tumor. Med is mga271. I thought he said it was brand new but I guess I misunderstood. It is brand new for the phase 1b part of the trial. Because the paper he gave talks about other people on it and some have even died but there was no indication it was the med that caused it but other issues. They have completed the dosing part and are now expanding to more patients. This is for several types of cancer.

        At u of I chicago they have the pac-1 med ready for enrollment. Someone on here posted about it awhile back. But I wasn't ready to sign yet. They are testing to see if I have igf-1 for a chemo med called igf-methotrexate. I'm not excited about this med. They have 3 patients on it. One is cycle 7 and one cycle 3. One quit at cycle 1 because he didn't want to tolerate the gi issues. This is for several types of cancer not just mel.

        Artie

      • May 8, 2015 at 12:56 pm
      Bubbles
      Participant

      Hey Artie,

      Given all you've had done (sadly!) you should have enough biopsied material to send to both places. However, you have the right to call the lab's pathology department yourself to confirm that. It's your tissue, your body, your life and they are REQUIRED to answer your questions. Which trial ended up being your preference? I was sorry the LAG3 option seemed further out for enrollment than some of the info reported. Hang in there. You are always in my thoughts. Love, c

      • May 8, 2015 at 12:56 pm
      Bubbles
      Participant

      Hey Artie,

      Given all you've had done (sadly!) you should have enough biopsied material to send to both places. However, you have the right to call the lab's pathology department yourself to confirm that. It's your tissue, your body, your life and they are REQUIRED to answer your questions. Which trial ended up being your preference? I was sorry the LAG3 option seemed further out for enrollment than some of the info reported. Hang in there. You are always in my thoughts. Love, c

      • May 8, 2015 at 1:15 pm
      A
      Participant

      Artie, I believe there are several new trials available at Sloan Kettering in NYC.

      https://www.mskcc.org/cancer-care/clinical-trials/search?keys=&disease=1383&location=&phase=All&investigator=

      I would check there site to see if some of them may be of interest.

       

        • May 9, 2015 at 6:43 pm
        arthurjedi007
        Participant

        Thank you. Yes there a couple of trials mentioned I would like to be in.

        Artie

        • May 9, 2015 at 6:43 pm
        arthurjedi007
        Participant

        Thank you. Yes there a couple of trials mentioned I would like to be in.

        Artie

        • May 9, 2015 at 6:43 pm
        arthurjedi007
        Participant

        Thank you. Yes there a couple of trials mentioned I would like to be in.

        Artie

      • May 8, 2015 at 1:15 pm
      A
      Participant

      Artie, I believe there are several new trials available at Sloan Kettering in NYC.

      https://www.mskcc.org/cancer-care/clinical-trials/search?keys=&disease=1383&location=&phase=All&investigator=

      I would check there site to see if some of them may be of interest.

       

      • May 8, 2015 at 1:15 pm
      A
      Participant

      Artie, I believe there are several new trials available at Sloan Kettering in NYC.

      https://www.mskcc.org/cancer-care/clinical-trials/search?keys=&disease=1383&location=&phase=All&investigator=

      I would check there site to see if some of them may be of interest.

       

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