MRF-Logo2019-Horizontal-RGB
I’m in at NIH!!!!
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

I’m in at NIH!!!!

› Forums › General Melanoma Community › I’m in at NIH!!!!

  • Post
    • July 1, 2011 at 12:57 pm
    ValinMtl
    Participant

      I'm so excited that I'm jumping in the air (well as best I can with my bad leg).  NIH has accepted me for a clinical trial, I went down last week.  I passed their interview and now I will be going down for surgery next Thursday to remove that nasty left lymph node in left groin.  They will use the lymphocytes to grow more in the lab.  After healing and in a few weeks, I will have chemo and most likely full body irradiation to destroy immune system then they will add lymphocytes and IL-2.  Should over about a 3-week period.  I know it's tough an

      I'm so excited that I'm jumping in the air (well as best I can with my bad leg).  NIH has accepted me for a clinical trial, I went down last week.  I passed their interview and now I will be going down for surgery next Thursday to remove that nasty left lymph node in left groin.  They will use the lymphocytes to grow more in the lab.  After healing and in a few weeks, I will have chemo and most likely full body irradiation to destroy immune system then they will add lymphocytes and IL-2.  Should over about a 3-week period.  I know it's tough and I am sure nervous but having failed ipi and reading Jimmy B. comments and many otehrs, I know it is the best way to go.  I have to get rid of all the sub-qs plus any other surprises that melanoma has waiting.  I am praying that the good Lord will help me slay the dragon.

      A million thanks to Warren G. for his support!!!   Val, stage IV xx

    Viewing 11 reply threads
    • Replies
        • July 1, 2011 at 1:02 pm
        lhaley
        Participant

          Val,

          So glad you got this option!  The best thing is getting rid of that nasty huge lymph node that ha been bothering you!  

          This will work and then you can post along with Warren years from now and help guide others. Make sure to post whenever you can so we hear from you during the process.

          Linda

            • July 1, 2011 at 3:34 pm
            ValinMtl
            Participant

              Thanks Linda…I was so nervous about being accepted that I didn't want to say too early what I hoped would happen….I always think of your surgeon and how it gets the cancer out and I am delighted that is their first step with the lymph node…I hated the fact that it was there since November and here it is July!  This trial is very very similar to what Warren did years ago and I hope to be able to talk about years from now.  I will definitely keep everybody posted as best I can.  Val

              • July 1, 2011 at 3:34 pm
              ValinMtl
              Participant

                Thanks Linda…I was so nervous about being accepted that I didn't want to say too early what I hoped would happen….I always think of your surgeon and how it gets the cancer out and I am delighted that is their first step with the lymph node…I hated the fact that it was there since November and here it is July!  This trial is very very similar to what Warren did years ago and I hope to be able to talk about years from now.  I will definitely keep everybody posted as best I can.  Val

                • July 1, 2011 at 5:21 pm
                lhaley
                Participant

                  Val

                  For me they actually did surgery in Nov and it came back and had surgery again 4 weeks ago today. This if it is mel is another recurrance.  Scans are being scheduled. Have a feeling the surgery route is ending…..  They stopped the radiation until they knew what the scans said.

                  Is the HLA 0201 positive marker still needed for NIH's trials? 

                  Linda

                  • July 1, 2011 at 6:36 pm
                  ValinMtl
                  Participant

                    For the trial I am on HLA 0201 is what they requested at first but then I am now led to believe it wasn't 100% necessary. They can 'man make' lymphocytes thanks to HLA 0201 but what they prefer are your actual tumors untouched by radiation – removing the lymphocytes from there and growing them in larger numbers in the lab..hence that is why they are taking the lymph node from left groin and not lower sub-qs on right (just in case they were 'touched' by the radiation on my upper thigh)…I was so fortunate that I postponed the palliative radiation on lymph node a week or so before (call it 'gut instinct')! 

                    I pray your feeling is wrong and that scans will be good.  Val xx

                    • July 1, 2011 at 6:36 pm
                    ValinMtl
                    Participant

                      For the trial I am on HLA 0201 is what they requested at first but then I am now led to believe it wasn't 100% necessary. They can 'man make' lymphocytes thanks to HLA 0201 but what they prefer are your actual tumors untouched by radiation – removing the lymphocytes from there and growing them in larger numbers in the lab..hence that is why they are taking the lymph node from left groin and not lower sub-qs on right (just in case they were 'touched' by the radiation on my upper thigh)…I was so fortunate that I postponed the palliative radiation on lymph node a week or so before (call it 'gut instinct')! 

                      I pray your feeling is wrong and that scans will be good.  Val xx

                      • July 1, 2011 at 5:21 pm
                      lhaley
                      Participant

                        Val

                        For me they actually did surgery in Nov and it came back and had surgery again 4 weeks ago today. This if it is mel is another recurrance.  Scans are being scheduled. Have a feeling the surgery route is ending…..  They stopped the radiation until they knew what the scans said.

                        Is the HLA 0201 positive marker still needed for NIH's trials? 

                        Linda

                      • July 1, 2011 at 1:02 pm
                      lhaley
                      Participant

                        Val,

                        So glad you got this option!  The best thing is getting rid of that nasty huge lymph node that ha been bothering you!  

                        This will work and then you can post along with Warren years from now and help guide others. Make sure to post whenever you can so we hear from you during the process.

                        Linda

                        • July 1, 2011 at 2:16 pm
                        Bruce in NH
                        Participant

                          Hi Val,

                          Congratulations on your acceptance to NIH! This is great news! My hope is that I'll be right behind you. NIH wants a brain MRI and CT scan now scheduled for next Friday. Good luck on your surgery and I'll follow your posts. If I am accepted I'll be 3-4 weeks behind you. Take care and have a great day!

                          Bruce in New Hampshire

                            • July 1, 2011 at 3:38 pm
                            ValinMtl
                            Participant

                              Hi Bruce,

                              As Warren always says…you can do this.  You are getting closer and closer!  I'm sending you lots of best wishes that you too are accepted.  After my surgery on Thursday, I'll be coming home until I heal…so perhaps at some time we'll cross over…looking forward to meeting you!   I'll do my best to keep everybody posted.  Val

                              • July 1, 2011 at 3:38 pm
                              ValinMtl
                              Participant

                                Hi Bruce,

                                As Warren always says…you can do this.  You are getting closer and closer!  I'm sending you lots of best wishes that you too are accepted.  After my surgery on Thursday, I'll be coming home until I heal…so perhaps at some time we'll cross over…looking forward to meeting you!   I'll do my best to keep everybody posted.  Val

                              • July 1, 2011 at 2:16 pm
                              Bruce in NH
                              Participant

                                Hi Val,

                                Congratulations on your acceptance to NIH! This is great news! My hope is that I'll be right behind you. NIH wants a brain MRI and CT scan now scheduled for next Friday. Good luck on your surgery and I'll follow your posts. If I am accepted I'll be 3-4 weeks behind you. Take care and have a great day!

                                Bruce in New Hampshire

                                • July 1, 2011 at 6:00 pm
                                shellebrownies
                                Participant

                                  Congrats Val! I'm so happy for you!

                                  Michelle, wife of Don

                                    • July 1, 2011 at 7:38 pm
                                    Vermont_Donna
                                    Participant

                                      Dear Val,

                                      I am ecstatic to hear this news!!!! You have done all your homework and are such a good advocate for yourself, navigating Canadian and American healthcare systems…no easy task!! Are you getting any support for your airfare and hotel stays and meals?? Just wondering. I am not sure what is out there but maybe others will know.

                                      Good luck Val, I'll be thinking of you!

                                      Hugs,

                                      Vermont_Donna, stage 3a, NED

                                      • July 1, 2011 at 7:38 pm
                                      Vermont_Donna
                                      Participant

                                        Dear Val,

                                        I am ecstatic to hear this news!!!! You have done all your homework and are such a good advocate for yourself, navigating Canadian and American healthcare systems…no easy task!! Are you getting any support for your airfare and hotel stays and meals?? Just wondering. I am not sure what is out there but maybe others will know.

                                        Good luck Val, I'll be thinking of you!

                                        Hugs,

                                        Vermont_Donna, stage 3a, NED

                                      • July 1, 2011 at 6:00 pm
                                      shellebrownies
                                      Participant

                                        Congrats Val! I'm so happy for you!

                                        Michelle, wife of Don

                                        • July 1, 2011 at 9:30 pm
                                        Carol Taylor
                                        Participant

                                          Great news and happy for you, too. It sounds tough, but you're tougher!

                                          Lord, in Your mercy and goodness, you're the toughest of all. Thank You for what you're doing and continue please opening doors for Val. Amen and Amen.
                                           

                                          Grace and peace,

                                          Carol

                                          • July 1, 2011 at 9:30 pm
                                          Carol Taylor
                                          Participant

                                            Great news and happy for you, too. It sounds tough, but you're tougher!

                                            Lord, in Your mercy and goodness, you're the toughest of all. Thank You for what you're doing and continue please opening doors for Val. Amen and Amen.
                                             

                                            Grace and peace,

                                            Carol

                                            • July 2, 2011 at 4:44 am
                                            wgalinat
                                            Participant
                                              Go get em my friend !! Wishing you and yours all the best. You are with the best and after a few days you’ll get more and more comfortable. Know you can and will make it. Nothing but positive thoughts. Keep me posted pal. Warren G
                                                • July 4, 2011 at 3:40 am
                                                boot2aboot
                                                Participant

                                                  Valin,

                                                  good luck to you…i am anxious to hear your results

                                                  boots

                                                  • July 4, 2011 at 3:40 am
                                                  boot2aboot
                                                  Participant

                                                    Valin,

                                                    good luck to you…i am anxious to hear your results

                                                    boots

                                                  • July 2, 2011 at 4:44 am
                                                  wgalinat
                                                  Participant
                                                    Go get em my friend !! Wishing you and yours all the best. You are with the best and after a few days you’ll get more and more comfortable. Know you can and will make it. Nothing but positive thoughts. Keep me posted pal. Warren G
                                                    • July 13, 2011 at 10:08 pm
                                                    soniagodwin
                                                    Guest

                                                      [email protected]
                                                      Hi Dear
                                                      How are you today, I hope all is well. My name is  miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response
                                                      ([email protected])

                                                      • July 13, 2011 at 10:08 pm
                                                      soniagodwin
                                                      Guest

                                                        [email protected]
                                                        Hi Dear
                                                        How are you today, I hope all is well. My name is  miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response
                                                        ([email protected])

                                                    Viewing 11 reply threads
                                                    • You must be logged in to reply to this topic.
                                                    About the MRF Patient Forum

                                                    The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                    Popular Topics