- March 1, 2019 at 8:16 pm
I just heard from Dr. Sharfman. He spoke to the radiologist, who pulled up my MRIs and said yes, there is definitely a new brain met. Very small, but it's there. So I start on Temodar, and he wants me to have my radiation oncologist zap the new spot. Temodar crosses the blood/brain barrier, so I assume that will help matters too. Then, after a couple of months of Temodar, we'll check things again and maybe at that point I can get into a trial.
Not the best news, but I'm relieved I'm going to be getting treatment. The TIL trial results had been so-so for me, and I've been out of that trial since the end of November. Over the past 5-6 weeks I've had several new skin spots pop up, and I've been quietly losing my mind over not getting any treatment other than radiation on my brain. Even though this is not what I had hoped to hear, in the 30 minutes or so since I talked to him I've felt a lot better about things.
I hope everyone has a great weekend!
- March 2, 2019 at 12:56 am
I personally donot have any experience with Temodar, but I wanted to wish you all the best with the new treatment.
I also found this past thread on the topic and I see a number of happy experiences: https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/temodar-durable-response
Finally, my mom had Gamma for brain tumor and worked very well for her. So you may want to check that with your radiologist as well
Happy weekend to you too dear 🙂
NancyGMParticipantHi Bill, I did Temodar for a mediastinum met 2007-2008 and have been “no evidence of disease”, (NED) for eleven years. I am now having a supraclivicular node checked out, but even if it’s a recurrence, I can’t believe Temodar bought me 11 years. Best of luck to you in your treatments and have a nice weekend.
- March 2, 2019 at 2:21 am
- March 2, 2019 at 8:35 pm
Thanks Nancy. I hope your new lymph node issue turns out to be nothing. I'm hopeful the Temodar will get things stabilized in my brain, and Dr. Sharfman said that they have been finding recenlty that patients like me who have had immunotherapies have a better response rate. We shall see!
- March 2, 2019 at 12:16 pm
Glad you are feeling pretty good about your plan, Bill!!! Melanoma makes us find crazy sh*t acceptable, doesn't it?? I know you will rock this out! Keep us posted on the zappage and temodar! Hugs! Celeste
- March 2, 2019 at 8:39 pm
Hi Celeste! Yes, it is amazing what the human mind will do to adapt to a less than favorable situation. After I posted my update yesterday I spoke to the radiation oncologist's nurse, and I'm set for a planning session (and another mask — fun fun!) next Friday March 8. And in a related but minor vein, I've hit my maximum out of pocket for my insurance, so anything and everything they do to me until July 1 doesn't cost me a penny! LOL
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