Monday, February 1, 2010

Got the news today. Not a good thing..

Dr. Hong from NIH called and informed us today that Jon's TIL harvest was unsuccessful. They were not able to get any TIL from his cancer and so sadly we will not be able to continue with that treatment. We really felt hopeful about the treatment and it did seem almost too good to be true, but now we won't ever be able to find out. We are sad and are both having a hard time remaining positive with the future. Our future is very much unknown right now and right now we just need something to give us time. She gave us the option of trying another treatment at NIH that uses lab created TIL and full body radiation, but she was not clear on any of the data because it was in an early clinical trial and just kept saying how dangerous it was and it was the strongest treatment they had and she had no idea even if it worked or not. We of course were very scared after getting off the phone with her and didn't feel good about the treatment at all.

We wanted to talk this treatment over with our doctor, Dr. Grossman because we very much value his opinion and he usually keeps up-to-date on all new data for Melanoma treatment. After talking this option over this afternoon with him, we decided it was not for us at this time. Dr. Grossman said that he thinks we still have options here and that Jon's cancer isn't bad enough yet to try that clinical trial. He thought that particular treatment was a joke and way to dangerous and showed almost no positive results.

So now it feels like we start at step one again.....

Dr. Grossman gave us an option of maybe joining a B-raff clinical trial if we can get in. He said that there might be a B-raff mutation phase 2 clinical trial option for us in L.A. at the UCLA. Dr. Grossman has a collegue down there that is doing this study and thinks he might be able to get us in this week. The B-raff treatment does show promise is shrinking the cancer, but really only for a short period of time. He said it would just be buying us time and that is all we have. We need to again do all of the scans and another MRI of Jon's brain and that will all take place this Wednesday up at Huntsman's. Hopefully the new treatment outline will be shown to us Wednesday.

If we are not able to get into a B-raff clinical trial this week, then we will be forced to start one of the terrible chemotherapy's this week instead. (the ones I talked about on a previous post) We have to do something now and can't delay anymore.
Please keep praying for us. We need strength right now and we need to feel comfort so badly. I am sorry about the bad news and hope and keep praying myself that something will finally touch this cancer and stop it. Even if it was short lived I would take it right now instead of nothing. I love my little family so much and feel so desperate to keep it. Man, its been one hard day :< I think I will go to sleep now and hopefully it will be a better day tomorrow. Take care everyone and may the spirit be with you. Love, Tiff

4 comments:

  1. I am so sorry! What hard news to get. I hope that something else will come up that is able to help beat the cancer. I will keep you in my prayers.

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  2. Your cute family is constantly in our thoughts and prayers! Hopefully today is a better day.

    Hugs,
    Chyenne and Cara

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  3. {{{{{{{{{HUGS}}}}}}}} We are thinking of your family and pray you can have many more days together.

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  4. I am so sorry. I will keep you all in my prayers. I hope some good news will come your way soon

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