Return from NIH after TIL

This topic has 24 replies, 9 voices, and was last updated 13 years, 2 months ago by boot2aboot.

Post

- September 20, 2011 at 3:05 pm
- Quote
ValinMtl
Participant
Hello everybody, I'm back. I was going to post last night but sadly saw the news about NicOz and decided to wait. May God be with her and watch over her dear young daughter.

I started Aug 18-22

cytoxan (chemo) IV for 1 hour on day -7 and day -6

   developed arrhythmia…need to see cardiologist now…hope it has kicked back in place

You will be given Mesna through IV. Mesna protects the bladder from irritation.

fluderabine (chemo) not as strong day-6, day-5 and day -4, day-3

Hello everybody, I'm back. I was going to post last night but sadly saw the news about NicOz and decided to wait. May God be with her and watch over her dear young daughter.

I started Aug 18-22

cytoxan (chemo) IV for 1 hour on day -7 and day -6

   developed arrhythmia…need to see cardiologist now…hope it has kicked back in place

You will be given Mesna through IV. Mesna protects the bladder from irritation.

fluderabine (chemo) not as strong day-6, day-5 and day -4, day-3

TBI (total body irradiation -if on that arm) day-3, day-2, day -1

   I have definitely had achy bones and still do.

TIL cells – day 0

IL-2 (Aldesleukin) – day-0, day +1, day+2, day +3, day+4

       you received IL-2 every 15 minutes until your body can't take it…I couldn't after two treatments, kidneys were giving out.

When I did return to Montreal on September 10, I was back in the hospital with slight hullacinations. These were straightened out…too many cross over on drugs? Back as home, I am slowly gaining my strenghth, I couldn't keep anything down for the longest time except except gatorade. But I travel back next week for a review and hopeul it will show regression, let's pray. I'll keep you posted. As Warren says, one step at a time. I'm still very sore and can't write that well but maybe in a month or so. Soon as I hear results I'll let you know. Val xx

Viewing 11 reply threads

Replies

- - September 20, 2011 at 4:03 pm
  - Quote
  Jan in OC
  Participant
  Val, so glad to hear from you. I have been thinking about you a lot.
  
  We are in Houston now. Dirk was going to try the TIL trial. They removed a large tumor from his brain last month and sent it for TIL harvest, but new brain mets have been giving him some problems. He is now day 3 of BioChemo and then WBR. But the T-cells are growing in their little dishes for later use. I would be very interested to hear more about the whole TIL experience.
  
  Hope you see great results from this and feel better soon.
  
  Jan
  - September 20, 2011 at 4:30 pm
    
    Quote
    Terra
    Participant
    
    Glad your back home Val – we are heading down in about 2 weeks or so to see if they can do Derek's surgery – we had to wait 3 weeks for steriods tobe out of his system from his asthma haler. We are crossing our fingers that everything also looks good in his chest they were concerned about his breathing because a tumour was causing issues – he had radiation so we need it to work in order to do til. I wish you luck and will be thinking of you and hope you are feeling better quickly.
  - September 20, 2011 at 4:30 pm
    
    Quote
    Terra
    Participant
    
    Glad your back home Val – we are heading down in about 2 weeks or so to see if they can do Derek's surgery – we had to wait 3 weeks for steriods tobe out of his system from his asthma haler. We are crossing our fingers that everything also looks good in his chest they were concerned about his breathing because a tumour was causing issues – he had radiation so we need it to work in order to do til. I wish you luck and will be thinking of you and hope you are feeling better quickly.
  - September 20, 2011 at 4:31 pm
    
    Quote
    Terra
    Participant
    
    Glad your back home Val – we are heading down in about 2 weeks or so to see if they can do Derek's surgery – we had to wait 3 weeks for steriods tobe out of his system from his asthma haler. We are crossing our fingers that everything also looks good in his chest they were concerned about his breathing because a tumour was causing issues – he had radiation so we need it to work in order to do til. I wish you luck and will be thinking of you and hope you are feeling better quickly.
  - September 20, 2011 at 4:31 pm
    
    Quote
    Terra
    Participant
    
    Glad your back home Val – we are heading down in about 2 weeks or so to see if they can do Derek's surgery – we had to wait 3 weeks for steriods tobe out of his system from his asthma haler. We are crossing our fingers that everything also looks good in his chest they were concerned about his breathing because a tumour was causing issues – he had radiation so we need it to work in order to do til. I wish you luck and will be thinking of you and hope you are feeling better quickly.
  - September 20, 2011 at 10:02 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Val,
    
    So good to hear from you! I understand the treatment now, thanks so much for spelling it out! I hope you continue to get stronger and stronger and that melanoma is history!!
    
    Hugs,
    
    Vermont_Donna, stage 3a. NED
  - September 20, 2011 at 10:02 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Val,
    
    So good to hear from you! I understand the treatment now, thanks so much for spelling it out! I hope you continue to get stronger and stronger and that melanoma is history!!
    
    Hugs,
    
    Vermont_Donna, stage 3a. NED
- - September 20, 2011 at 4:03 pm
  - Quote
  Jan in OC
  Participant
  Val, so glad to hear from you. I have been thinking about you a lot.
  
  We are in Houston now. Dirk was going to try the TIL trial. They removed a large tumor from his brain last month and sent it for TIL harvest, but new brain mets have been giving him some problems. He is now day 3 of BioChemo and then WBR. But the T-cells are growing in their little dishes for later use. I would be very interested to hear more about the whole TIL experience.
  
  Hope you see great results from this and feel better soon.
  
  Jan
- - September 20, 2011 at 11:45 pm
  - Quote
  triciad
  Participant
  Val,
  
  It is so good to hear from you. I have been thinking about you and praying for good results. I hope my prayers are answered and this treatment is the magic one for you. Take care of yourself and rest, rest, rest! Please keep us posted and you will continue to be in my prayers!
  
  Tricia
- - September 20, 2011 at 11:45 pm
  - Quote
  triciad
  Participant
  Val,
  
  It is so good to hear from you. I have been thinking about you and praying for good results. I hope my prayers are answered and this treatment is the magic one for you. Take care of yourself and rest, rest, rest! Please keep us posted and you will continue to be in my prayers!
  
  Tricia
- - September 21, 2011 at 10:42 am
  - Quote
  JerryfromFauq
  Participant
  Thank you very much for the step by step account of the TIL ativities and your reactions. I may have to go that route one day and want to learn all I can about the procedures and side effects. Yes the IL-2 can make one hve some weird side effects,.having some hulluicinations are not too unusual. And yes one will have kidney problems if not kept well "watered". Been there for IL-2 side-effects. TIL patients should look at the IL-2 side effects to have an idea off things that might occur.
  
  Keep up the good work!
- - September 21, 2011 at 10:42 am
  - Quote
  JerryfromFauq
  Participant
  Thank you very much for the step by step account of the TIL ativities and your reactions. I may have to go that route one day and want to learn all I can about the procedures and side effects. Yes the IL-2 can make one hve some weird side effects,.having some hulluicinations are not too unusual. And yes one will have kidney problems if not kept well "watered". Been there for IL-2 side-effects. TIL patients should look at the IL-2 side effects to have an idea off things that might occur.
  
  Keep up the good work!
- - September 21, 2011 at 10:42 am
  - Quote
  JerryfromFauq
  Participant
  Thank you very much for the step by step account of the TIL ativities and your reactions. I may have to go that route one day and want to learn all I can about the procedures and side effects. Yes the IL-2 can make one hve some weird side effects,.having some hulluicinations are not too unusual. And yes one will have kidney problems if not kept well "watered". Been there for IL-2 side-effects. TIL patients should look at the IL-2 side effects to have an idea off things that might occur.
  
  Keep up the good work!
- - September 21, 2011 at 10:42 am
  - Quote
  JerryfromFauq
  Participant
  Thank you very much for the step by step account of the TIL ativities and your reactions. I may have to go that route one day and want to learn all I can about the procedures and side effects. Yes the IL-2 can make one hve some weird side effects,.having some hulluicinations are not too unusual. And yes one will have kidney problems if not kept well "watered". Been there for IL-2 side-effects. TIL patients should look at the IL-2 side effects to have an idea off things that might occur.
  
  Keep up the good work!
- - September 21, 2011 at 9:30 pm
  - Quote
  wgalinat
  Participant
  Val, you got a lot of people here with a big smile today!!
  Well deserved. Good work, no…Great Work !!! Warren
  - September 22, 2011 at 2:53 pm
    
    Quote
    killmel
    Participant
    
    Val,
    
    SOOOOOOOOOOOOO Happy to see your post. Now you are safe & sound at home.
    
    When did the Doc tell you that you will see a change in your melanoma?//
    
    I pray you get a positive response.
    
    Mary
  - September 22, 2011 at 2:53 pm
    
    Quote
    killmel
    Participant
    
    Val,
    
    SOOOOOOOOOOOOO Happy to see your post. Now you are safe & sound at home.
    
    When did the Doc tell you that you will see a change in your melanoma?//
    
    I pray you get a positive response.
    
    Mary
- - September 21, 2011 at 9:30 pm
  - Quote
  wgalinat
  Participant
  Val, you got a lot of people here with a big smile today!!
  Well deserved. Good work, no…Great Work !!! Warren
- - September 23, 2011 at 2:50 am
  - Quote
  Jim M.
  Participant
  Hi Val,
  
  You're in my thoughts and prayers. I didn't realize until now that you were an avid cyclist. Me to! I loved bicycling around my home state of Wisconsin. In 82 my 3 brothers and I bicycled 5,400 miles across the U.S. We need to compare notes!
  
  God Bless,
  
  Jim M.
  - September 23, 2011 at 3:44 pm
    
    Quote
    boot2aboot
    Participant
    
    Val,
    
    Thankyou for updating us and i pray all goes well and you will get on your bike for a good ride!
    
    boots
  - September 23, 2011 at 3:44 pm
    
    Quote
    boot2aboot
    Participant
    
    Val,
    
    Thankyou for updating us and i pray all goes well and you will get on your bike for a good ride!
    
    boots
  - September 23, 2011 at 3:45 pm
    
    Quote
    boot2aboot
    Participant
    
    Val,
    
    Thankyou for updating us and i pray all goes well and you will get on your bike for a good ride!
    
    boots
  - September 23, 2011 at 3:45 pm
    
    Quote
    boot2aboot
    Participant
    
    Val,
    
    Thankyou for updating us and i pray all goes well and you will get on your bike for a good ride!
    
    boots
- - September 23, 2011 at 2:50 am
  - Quote
  Jim M.
  Participant
  Hi Val,
  
  You're in my thoughts and prayers. I didn't realize until now that you were an avid cyclist. Me to! I loved bicycling around my home state of Wisconsin. In 82 my 3 brothers and I bicycled 5,400 miles across the U.S. We need to compare notes!
  
  God Bless,
  
  Jim M.