Tuesday, December 1, 2015

Third Party MRI Results

We have the third opinion MRI report. If you had missed it, we were told by University of Washington that my MRI was stable, dating back for three years. Then, UCLA reviewed my MRI scans and told me that there had been changes in my brain, that the scans were showing recurrence and that I needed to start radiation and enroll in one of their clinical trials. (Click on the above links for the posts.)

UCLA did not review my file before looking at my brain scans, they did not look at my treatments before recommending radiation and the clinical trial. Had I not dogged them and asked many, many specific questions, I would be starting unnecessary radiation. I would be enrolled in a clinical trial for a drug that I do not need at this point in time. The treatment that I do, the dendritic cell therapy, causes some inflammation and slight increased FLAIR, but I find it very interesting that two facilities do not find reason for additional conventional treatments when UCLA made me feel like recurrence was a fact.

It is so important to ask questions, as many as you can think of. It is important to follow your gut, your intuition. You are in control of your body, and to a certain extent, your fate.

Thankfully, my family is stubborn, and we went out on our own to a private facility that reviews MRI scans. They don't recommend or provide treatment, they only analyze the images and report what they see. It's wonderful, and worth the money to get an unbiased review.

I hope you can read the report, it's fascinating. It's definitely the most in depth radiology report I've ever received. I feel relieved, and tomorrow I am going to celebrate by running a one person 5k. It has become my favorite distance.

Thank you for all of the love and support and kindness. I live on an inevitable roller coaster, but today I can hop off for a minute and just breathe.


7 comments:

  1. This news allows me to breathe more easily for YOU! Going through what I did with my Sweetie but having to sit back while he made the decisions for himself was difficult--I would have been more stubborn. It makes me happy to cheer you on from the sidelines! As always, thanks for sharing...

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    1. Thank you so much. And thank you for always cheering me on! You have been through so much, and I am really grateful that you continue to help share your strength with me. xo

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  2. Wonderful wonderful l news Jessica, Dan and family !!! Have a good celebration 5K run of one :-) We are running with you in spirit :-) I'd keel over the first half mile LOL We have been "there" in hearing the wonderful news of "no new tumor" so understand feeling like you are holding your breath waiting and waiting.
    Blessings & prayers dear one

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    1. Thank you thank you thank you! Sending blessings and prayers and lots of love right back atcha. :)

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  3. It's scary when you put your trust and faith into a person or a program when you feel differently in your gut. Our instincts are usually right, but mentally it is hard to wrap our brains around the fact that the professional(s) might not have it correct. You are a battler, so stick with it. We are thinking of you.

    Kacey @ Glendale MRI

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