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Back from NIH – round 1
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Back from NIH – round 1

› Forums › General Melanoma Community › Back from NIH – round 1

  • Post
    • July 10, 2011 at 8:58 pm
    ValinMtl
    Participant

      Well, back from NIH -NCI in  Maryland.  They removed 2 masses in left groin (2 lymph nodes).  Now into lab to produce the white cells (TIL) that will be needed for trial.  Will fly back down for meeting to discuss which arm of trial I will be on.  Would prefer total body radiation arm but other arm is good as well. Thank goodness for Warren G.'s timely report on being healthy after 5 years! and for his kind assistance. I was so down about a month ago with not any other 'good' plan available in Quebec.  NIH happened to s

      Well, back from NIH -NCI in  Maryland.  They removed 2 masses in left groin (2 lymph nodes).  Now into lab to produce the white cells (TIL) that will be needed for trial.  Will fly back down for meeting to discuss which arm of trial I will be on.  Would prefer total body radiation arm but other arm is good as well. Thank goodness for Warren G.'s timely report on being healthy after 5 years! and for his kind assistance. I was so down about a month ago with not any other 'good' plan available in Quebec.  NIH happened to start up the same trial again in March and I was accepted!! 

      Can't say enough about the treatment and wonderful staff at NIH.  Warren, you were right, I'm in good hands!

      Val – stage IV (failed interferon, many surgeries, failed temodar, partial responder to ipilimumab but eventually removed from trial)    

      http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1

    Viewing 5 reply threads
    • Replies
        • July 10, 2011 at 10:50 pm
        killmel
        Participant

          Hi Val,

          I hope you feel better recovering from the surgery

          You are so brave. After reading the trial, it sounds like this trial is not a piece of cake.

          Did the doctors give you any info on how others have done on this trial??

          How many sub qs do you have & size???  How long AFTER THE  TRIAL are the doctors telling you when you will see a difffernce in your sub qs.

           

          Good Luck & Take Care

          Mary

           

            • July 11, 2011 at 2:57 pm
            ValinMtl
            Participant

              Hi Mary

              Yep, you're right, it's not a piece of cake.  I fully realize that after reading Warren's blog,,http://wgalinat.blogspot.com/   but I really have a good feeling that this might be the fit for me.

              I had two masses (lymph nodes) in left groin that they removed but my sub-qs are pretty nasty on the upper right thigh.  One is 10 x 7 mm with bleeding and the other is 7 x 5 mm ..I also have about 5 smaller  ones popping up in the same vicinity so something has to be done quickly.

              As far as responding, like ipi/yervoy..some respond quickly and some are slower. Unlike most clinical trials where the pharmaceutical companies sponsor 1000s, the trials at NIH are more limited.  Warren's trial had 25 patients, this new one has 112 divided into two arms..one with total body radiation, the other without.  I was told a number of responders in Warren's trial but I want to confirm it next time I am down…it was quite high and I think it was 'complete' responders but I don't want to say numbers until I verify, I wouldn't want to mislead anybody.    Val xx

              • July 11, 2011 at 2:57 pm
              ValinMtl
              Participant

                Hi Mary

                Yep, you're right, it's not a piece of cake.  I fully realize that after reading Warren's blog,,http://wgalinat.blogspot.com/   but I really have a good feeling that this might be the fit for me.

                I had two masses (lymph nodes) in left groin that they removed but my sub-qs are pretty nasty on the upper right thigh.  One is 10 x 7 mm with bleeding and the other is 7 x 5 mm ..I also have about 5 smaller  ones popping up in the same vicinity so something has to be done quickly.

                As far as responding, like ipi/yervoy..some respond quickly and some are slower. Unlike most clinical trials where the pharmaceutical companies sponsor 1000s, the trials at NIH are more limited.  Warren's trial had 25 patients, this new one has 112 divided into two arms..one with total body radiation, the other without.  I was told a number of responders in Warren's trial but I want to confirm it next time I am down…it was quite high and I think it was 'complete' responders but I don't want to say numbers until I verify, I wouldn't want to mislead anybody.    Val xx

              • July 10, 2011 at 10:50 pm
              killmel
              Participant

                Hi Val,

                I hope you feel better recovering from the surgery

                You are so brave. After reading the trial, it sounds like this trial is not a piece of cake.

                Did the doctors give you any info on how others have done on this trial??

                How many sub qs do you have & size???  How long AFTER THE  TRIAL are the doctors telling you when you will see a difffernce in your sub qs.

                 

                Good Luck & Take Care

                Mary

                 

                • July 11, 2011 at 12:46 pm
                Bruce in NH
                Participant

                  Hi Val,

                  Glad to hear your surgery went well. Let us know which arm you decide to pursue after your trip back to NIH. Sounds like you are in very good hands there.

                  Take care,

                  Bruce

                    • July 11, 2011 at 2:59 pm
                    ValinMtl
                    Participant

                      Hi Bruce

                      I hope you get into the NIH..we'll try and meet up there at some point.  I believe your doctor has made an excellent judgement call in trying to get you in.  Val xx

                      • July 12, 2011 at 11:56 am
                      Terra
                      Participant

                        Hi Val,

                        SO glad to hear you were accepted and have already had the surgeries.  This trial sounds so promising, I hope it is the one for ou and I'll be thinking of you as you go through it!  Please keep us posted and I pray you are one that responds.

                         

                        TRerra

                        • July 12, 2011 at 11:56 am
                        Terra
                        Participant

                          Hi Val,

                          SO glad to hear you were accepted and have already had the surgeries.  This trial sounds so promising, I hope it is the one for ou and I'll be thinking of you as you go through it!  Please keep us posted and I pray you are one that responds.

                           

                          TRerra

                          • July 11, 2011 at 2:59 pm
                          ValinMtl
                          Participant

                            Hi Bruce

                            I hope you get into the NIH..we'll try and meet up there at some point.  I believe your doctor has made an excellent judgement call in trying to get you in.  Val xx

                          • July 11, 2011 at 12:46 pm
                          Bruce in NH
                          Participant

                            Hi Val,

                            Glad to hear your surgery went well. Let us know which arm you decide to pursue after your trip back to NIH. Sounds like you are in very good hands there.

                            Take care,

                            Bruce

                            • July 17, 2011 at 12:53 am
                            wgalinat
                            Participant

                              MORE GOOD WISHES !!  KEEP US POSTED !

                              WARREN G

                              • July 17, 2011 at 12:53 am
                              wgalinat
                              Participant

                                MORE GOOD WISHES !!  KEEP US POSTED !

                                WARREN G

                            Viewing 5 reply threads
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