Randomized to TIL (TBI) at NIH
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Randomized to TIL (TBI) at NIH

› Forums › General Melanoma Community › Randomized to TIL (TBI) at NIH

  • Post
    • July 30, 2011 at 2:54 pm
    ValinMtl
    Participant

    Just to let you know that I have been randomized and will be in the TIL (total body irradiation).  I have been down here doing final tests this past week which have to be done within 3 weeks of treatment, the colonoscopy was a bit of a scare, biopsy showed something but proved to be most likely from ipilimumab drug and was healed..thank goodness, or I would have been off the trial.  If I hadn't been on TBI arm, I would be flying home today but now I'll be staying another week for them to do apheresis to harvest my stem cells for radiation.  So today, I'll jus

    Just to let you know that I have been randomized and will be in the TIL (total body irradiation).  I have been down here doing final tests this past week which have to be done within 3 weeks of treatment, the colonoscopy was a bit of a scare, biopsy showed something but proved to be most likely from ipilimumab drug and was healed..thank goodness, or I would have been off the trial.  If I hadn't been on TBI arm, I would be flying home today but now I'll be staying another week for them to do apheresis to harvest my stem cells for radiation.  So today, I'll just be a tourist in Bethesda and take a break from it all. 

    I can't say enough about how blessed I am to be accepted into this trial.  THANK YOU AGAIN WARREN, a million times for the contacts.  I know it's tough..but that's how it is with melanoma and my right leg is sooo nasty now with many smaller sub-qs and some terrible weeping large ones – to be cleaned daily.  The good news is that the two masses are gone from left groin since they were used for removing the white cells…which are still being fed in the lab until they are ready for re-entry.

    Val

Viewing 17 reply threads
  • Replies
      • July 30, 2011 at 4:03 pm
      bcl
      Participant

      Congratulations Val- I hope you will share Warren's results!

        • July 31, 2011 at 1:26 pm
        ValinMtl
        Participant

        Thanks for your words of encouragement.  Linda, if you have a minute could you send me an e-mail via my profile.  There is somebody on Vancouver Island with melanoma and has questions.  I know you are better-versed with BC's medical system and wondered if you could touch base with her.  If you can, send me an e-mail and I will forward her e-mail to you.  Val

        • July 31, 2011 at 1:26 pm
        ValinMtl
        Participant

        Thanks for your words of encouragement.  Linda, if you have a minute could you send me an e-mail via my profile.  There is somebody on Vancouver Island with melanoma and has questions.  I know you are better-versed with BC's medical system and wondered if you could touch base with her.  If you can, send me an e-mail and I will forward her e-mail to you.  Val

      • July 30, 2011 at 4:03 pm
      bcl
      Participant

      Congratulations Val- I hope you will share Warren's results!

      • July 30, 2011 at 4:46 pm
      King
      Participant

      Val,

      Best of luck!  I hope you have an enjoyable day playing tourist.  Try to slip in as much fun as possible while having this very tough treatment.  Thinking of you.  Keep us posted when you can.  One day at a time.

       

      Stay Strong

      King

      Stage IV 7/05 Liver mets

        • July 31, 2011 at 1:27 pm
        ValinMtl
        Participant

        Thanks King.  I will try to update as much as I can.  Val

        • July 31, 2011 at 1:27 pm
        ValinMtl
        Participant

        Thanks King.  I will try to update as much as I can.  Val

      • July 30, 2011 at 4:46 pm
      King
      Participant

      Val,

      Best of luck!  I hope you have an enjoyable day playing tourist.  Try to slip in as much fun as possible while having this very tough treatment.  Thinking of you.  Keep us posted when you can.  One day at a time.

       

      Stay Strong

      King

      Stage IV 7/05 Liver mets

      • July 30, 2011 at 6:18 pm
      kylez
      Participant

      Congratulations Val for getting into the TIL arm. You're getting a very advanced treatent — you're in line to be 1 of about 100 patients in the U.S. to get this treatment so far! (that figure's from Feb. 2011.)

      More prestigous clinical research facilities (beyond Moffitt and MDA — e.g., Yale, Hutchinson, Penn, etc.) have been getting involved in developing the TIL treatment approach. So it seems like it may be getting validation / wings beyond NCI.

        • July 31, 2011 at 1:28 pm
        ValinMtl
        Participant

        Yes, it is all rather exciting as well as stressful.  I am blessed to be on it.  Val

        • July 31, 2011 at 1:28 pm
        ValinMtl
        Participant

        Yes, it is all rather exciting as well as stressful.  I am blessed to be on it.  Val

      • July 30, 2011 at 6:18 pm
      kylez
      Participant

      Congratulations Val for getting into the TIL arm. You're getting a very advanced treatent — you're in line to be 1 of about 100 patients in the U.S. to get this treatment so far! (that figure's from Feb. 2011.)

      More prestigous clinical research facilities (beyond Moffitt and MDA — e.g., Yale, Hutchinson, Penn, etc.) have been getting involved in developing the TIL treatment approach. So it seems like it may be getting validation / wings beyond NCI.

      • July 30, 2011 at 10:43 pm
      lhaley
      Participant

      Val,

      I am soooo excited for you!  Sending good vibes your way.  Of course you will let us all know how your doing each step of the way.

      Linda

        • July 31, 2011 at 1:33 pm
        ValinMtl
        Participant

        Me too…it was stressful getting in…surprised I didn't fail my stress test…BUT I DID IT!!  Val

        • July 31, 2011 at 1:33 pm
        ValinMtl
        Participant

        Me too…it was stressful getting in…surprised I didn't fail my stress test…BUT I DID IT!!  Val

      • July 30, 2011 at 10:43 pm
      lhaley
      Participant

      Val,

      I am soooo excited for you!  Sending good vibes your way.  Of course you will let us all know how your doing each step of the way.

      Linda

      • July 31, 2011 at 2:41 am
      MariaH
      Participant

      So very happy you got in the TBI arm – hopefully we'll see you on Tuesday!

      Best of luck to you Val!

      Maria

      • July 31, 2011 at 2:41 am
      MariaH
      Participant

      So very happy you got in the TBI arm – hopefully we'll see you on Tuesday!

      Best of luck to you Val!

      Maria

        • July 31, 2011 at 11:12 am
        Vermont_Donna
        Participant

        Dear Val,

          I was wondering how things were going. Good for you to get into the trial. I am sorry about your leg….how many sub q's and tumors would you say you have or is it just rampant? I imagine you are needing to bandage the weeping ones. How is the leg lymphadema…is the solarus still working  out ok?

          I love the profile picture too! Have fun being a tourist in Bethesda today and know my thoughts are with you daily!

        Hugs,

        Vermont_Donna, stage 3a, NED

        • July 31, 2011 at 11:12 am
        Vermont_Donna
        Participant

        Dear Val,

          I was wondering how things were going. Good for you to get into the trial. I am sorry about your leg….how many sub q's and tumors would you say you have or is it just rampant? I imagine you are needing to bandage the weeping ones. How is the leg lymphadema…is the solarus still working  out ok?

          I love the profile picture too! Have fun being a tourist in Bethesda today and know my thoughts are with you daily!

        Hugs,

        Vermont_Donna, stage 3a, NED

        • July 31, 2011 at 1:31 pm
        ValinMtl
        Participant

        Hi Donna..yep, I'm wrapping te weepers. Lymphedema is a nightmare, my leg is huge with all the sub-qs, especially around the knee.  Solaris has been wonderful, very hard to wear support stockings now, so I live mostly in the solaris which is more comfortable – it stops the throbbing…thank for the recommendation. 

        My mantra now will be…I can do this..I can do this…gotta run..off to church at 10 to give thanks.  Val

        • July 31, 2011 at 1:31 pm
        ValinMtl
        Participant

        Hi Donna..yep, I'm wrapping te weepers. Lymphedema is a nightmare, my leg is huge with all the sub-qs, especially around the knee.  Solaris has been wonderful, very hard to wear support stockings now, so I live mostly in the solaris which is more comfortable – it stops the throbbing…thank for the recommendation. 

        My mantra now will be…I can do this..I can do this…gotta run..off to church at 10 to give thanks.  Val

        • July 31, 2011 at 1:34 pm
        ValinMtl
        Participant

        We've got a date on Tuesday!  Unless they keep you too busy.  Val xx

        • July 31, 2011 at 1:34 pm
        ValinMtl
        Participant

        We've got a date on Tuesday!  Unless they keep you too busy.  Val xx

      • July 31, 2011 at 12:32 pm
      triciad
      Participant

      Val,

      Congratulations and good luck with the trial.  Please keep us posted as to how things are going.  You will be in my prayers for complete success!

      Tricia

      • July 31, 2011 at 12:32 pm
      triciad
      Participant

      Val,

      Congratulations and good luck with the trial.  Please keep us posted as to how things are going.  You will be in my prayers for complete success!

      Tricia

        • July 31, 2011 at 1:32 pm
        ValinMtl
        Participant

        Thanks for your good wishes and prayers Tricia…much appreciated.  Val

        • July 31, 2011 at 1:32 pm
        ValinMtl
        Participant

        Thanks for your good wishes and prayers Tricia…much appreciated.  Val

      • July 31, 2011 at 8:53 pm
      killmel
      Participant

      Val,

       

      I am so happy for you. May God bless you & this treatment works to get your NED.

      I am thinking about doing IPI…scary allthe side effects. You mentioned in your post: "the colonoscopy was a bit of a scare, biopsy showed something but proved to be most likely from ipilimumab drug and was healed."

      If you do not mind me asking, what problem with your colon did IPI cause. Glad to hear it healed up.

      Stay safe

      Mary

      • July 31, 2011 at 8:53 pm
      killmel
      Participant

      Val,

       

      I am so happy for you. May God bless you & this treatment works to get your NED.

      I am thinking about doing IPI…scary allthe side effects. You mentioned in your post: "the colonoscopy was a bit of a scare, biopsy showed something but proved to be most likely from ipilimumab drug and was healed."

      If you do not mind me asking, what problem with your colon did IPI cause. Glad to hear it healed up.

      Stay safe

      Mary

        • July 31, 2011 at 9:44 pm
        ValinMtl
        Participant

        Hi Mary,

        I did the 3 mg ipi every 3 weeks…there is 10 mg…which one will you be doing? The 3 mg was not too difficult…very little nausea (I think maybe one treatment) and some diarrhea which was kept under control with immodium.  Although the pathologist said it might be ipi related again it might not be.  If it was I didn't really have any serious repercussions. Sharyn from Newfoundland (who unfortunately passed away due to brain tumors) and I were on the same treatment in Montreal and we both agreed that ipi was much easier than other treatments we had before e.g. interferon.  If you decide to go with it Mary, I wish you great success and that you have the same results as Donna in VT…she is NED.  I believe Jerry from Cape Cod did the 10 mg, more side effects but hey he is NED!!

        I was a partial responder and very happy I did it!

        Val xx

        • July 31, 2011 at 9:44 pm
        ValinMtl
        Participant

        Hi Mary,

        I did the 3 mg ipi every 3 weeks…there is 10 mg…which one will you be doing? The 3 mg was not too difficult…very little nausea (I think maybe one treatment) and some diarrhea which was kept under control with immodium.  Although the pathologist said it might be ipi related again it might not be.  If it was I didn't really have any serious repercussions. Sharyn from Newfoundland (who unfortunately passed away due to brain tumors) and I were on the same treatment in Montreal and we both agreed that ipi was much easier than other treatments we had before e.g. interferon.  If you decide to go with it Mary, I wish you great success and that you have the same results as Donna in VT…she is NED.  I believe Jerry from Cape Cod did the 10 mg, more side effects but hey he is NED!!

        I was a partial responder and very happy I did it!

        Val xx

      • July 31, 2011 at 11:17 pm
      JerryfromFauq
      Participant

      Congrates at getting in the trial.  Am waiting and praying for the good result reports.

      • July 31, 2011 at 11:17 pm
      JerryfromFauq
      Participant

      Congrates at getting in the trial.  Am waiting and praying for the good result reports.

      • August 2, 2011 at 7:48 pm
      Bruce in NH
      Participant

      Hi Val, glad you continue to make progress at NIH. I'm pulling for you to have a successful treatment program there. I have completed 4 of 10 Whoe Brain Radiation Treatments now, ending on 8/10/11. Then another brain MRI in 3-4 weeks after that, so you will probably be gone by then! Keep us posted on your progress. You are a fighter!!!

      Bruce

      • August 2, 2011 at 7:48 pm
      Bruce in NH
      Participant

      Hi Val, glad you continue to make progress at NIH. I'm pulling for you to have a successful treatment program there. I have completed 4 of 10 Whoe Brain Radiation Treatments now, ending on 8/10/11. Then another brain MRI in 3-4 weeks after that, so you will probably be gone by then! Keep us posted on your progress. You are a fighter!!!

      Bruce

        • August 3, 2011 at 1:09 pm
        MariaH
        Participant

        Hey Bruce – I was curious, did NIH ask you to come back once the brain mets are gone?  My husband Dave didn't make it into the TIL trial because they can't get tumor out (too risky).  If he progresses, then he can go back.  But I  was worried about spread to the brain.

        • August 3, 2011 at 1:09 pm
        MariaH
        Participant

        Hey Bruce – I was curious, did NIH ask you to come back once the brain mets are gone?  My husband Dave didn't make it into the TIL trial because they can't get tumor out (too risky).  If he progresses, then he can go back.  But I  was worried about spread to the brain.

        • August 4, 2011 at 12:03 pm
        Bruce in NH
        Participant

        Hi Maria, I can't answer your question at this time as my oncologist is doing all the interaction with NIH on my behalf. However, this brain MRI was my last challenge to get entry and until I get my mets down to 3 or less for NIH, I don't think I will quality. My recent MRI on July 8th showed more than 10. I am having another brain MRI at a different facility today just to reassure myself that my films were really mine on the 8th. I was told yesterday that I can only undergo WBRT once in my lifetime, so this is really important. I complete my 6th of 10 WBRT's this morning and the MRI this afternoon, then another MRI on 8/29. I've been doing a lot of praying and I'll add your husband to my list.

        Take care,

        Bruce

        • August 4, 2011 at 12:03 pm
        Bruce in NH
        Participant

        Hi Maria, I can't answer your question at this time as my oncologist is doing all the interaction with NIH on my behalf. However, this brain MRI was my last challenge to get entry and until I get my mets down to 3 or less for NIH, I don't think I will quality. My recent MRI on July 8th showed more than 10. I am having another brain MRI at a different facility today just to reassure myself that my films were really mine on the 8th. I was told yesterday that I can only undergo WBRT once in my lifetime, so this is really important. I complete my 6th of 10 WBRT's this morning and the MRI this afternoon, then another MRI on 8/29. I've been doing a lot of praying and I'll add your husband to my list.

        Take care,

        Bruce

        • August 5, 2011 at 2:29 am
        Terra
        Participant

        Good Luck Val – i am happy you are in the total body radiation arm of the trial.  Looking forward to hearing good news from you inthe future and will be thinking of you in the next several weeks – stay strong

        • August 5, 2011 at 2:29 am
        Terra
        Participant

        Good Luck Val – i am happy you are in the total body radiation arm of the trial.  Looking forward to hearing good news from you inthe future and will be thinking of you in the next several weeks – stay strong

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