We went in to see my oncologist today and as I should have expected she had a new plan. She had presented my case to the Phase 1 Trial Tumor Board and the consensus was that I could/should go back on the Tykerb trial I was on before the brain tumor made itself known. Their reasoning is...
1. I had a really good response the first time around.
2. Trying it again doesn't burn any bridges, I can stop if I don't respond (or if I just can't deal with it).
3. Tykerb is a drug that may well keep brain tumors from popping up (it doesn't work as well at shrinking pre-existing tumors - probably what I had when I started the trial).
4. It isn't chemo, so I won't get run down physically and I won't lose my hair (seems like a silly thing, but I was kinda dreading losing my hair for the third time in 2 years).
I'm not excited to start this up again, but it seems like the right thing to do. I mean, if the experts at UCSF are recommending it I figure it's worth a try. The only sticking point (and maybe it isn't a bad thing) is that I can't start the trial for a month. One of the requirements of the trial (and most trials) is that you wait a month after any brain radiation. This means I'll be starting up again right before X-mas. Here's hoping that my present is lots of dead cancer cells!
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After radiation hope Keith refrained from a chorus of " You Light up my life".. sure you do anyways!
ReplyDeleteIn general they must feel the treatment did a good job for you to put you back on it.. all for stuff that is doing the job with fewer side effects.. and this does seem more targeted than chemo. Enjoy the holidays, stay upbeat.. thoughts and prayers with Keith and you!
Dear Eileen- Going back on the trial probably wasn't your first choice...... but the way you put it, it does make sense. I am so thankful you are getting such good care! Enjoy the next month and stay strong.
ReplyDeleteLove,
ann
Thanks for the update on the doc's plan - I was wondering what the recommendation was. Sorry to hear that the drug of choice is Tykerb with those horrible side effects, but I'm sure the UCSF folks know their stuff. Hope you've learned some tricks to lessen the side-effects. You'll have to plan some good times for those 9 days in between the doses.
ReplyDeleteHappy Thanksgiving to you and Keith. Hope you can get in some rest and relaxation. Love from all of us,
Ellen, Robert, Meaghan & 2 feline friends
Thanks for the update. I am sorry to hear that you have to go back to Tykerb, but hopefully it will be worth it!! And, as you say, it does not have the same nasty side effects as chemo drugs.
ReplyDeleteI hope that you and Keith are able to work in some fun things!! You need some treats!!
Take care.
Love, Jane
Eileen, I so sorry that you have the black cloud of Tykerb induced nausea & the runs over your head but I'm glad to learn that the Board figures you're strong enough to deal with something that did work for you. When's your 1st dose of Tykerb scheduled for? I'll echo Ann's comment that it's so good to know that you're getting what sounds like very top quality care. Hope you and Keith have something very pleasant planned for the Thanksgiving holiday. love, Sheila, Larry and purrs from Nona
ReplyDeleteEileen,
ReplyDeleteSorry to hear that you and Tykerb will be spending time together again. We'll be sending you good thoughts and well wishes that with your previous experience perhaps you can control those awful side effects a bit more.
Hope you can do some fun things in the next couple weeks prior to the Tykerb regime (and forget it's coming down the pike).
Lots of Love,
Kate and Doug
Happy Thanksgiving!! Hope you enjoy the holidays, our thoughts are with you!
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