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Wednesday, October 22, 2014

bad news and good news

I sit here holding my breath, could something good actually be happening to me?  Let me start from the beginning...
  On our vacation a few weekends ago we sat with a pulmonologist who works for a pharmaceutical company.  He was telling the man next to him how they had just developed this immunotherapy drug that is shrinking tumors and that it has already worked on melanoma and was on the fast track to be approved in 6 months by the FDA, and has been approved.  He said that they are now testing it on 30 different cancers and it has little side effects.  Wowzers, sign me up!  So after hearing all this when I got home I got in touch with the Dr that I talk to about clinical trials at Mass General.  She told me that she had a trial similar to this with a drug that wasn't actually the one I had heard about but a different drug by another pharm company and that she could add me to the list.  (This didn't mean  much to me, you can be on waiting lists for a long time for trials)  I then proceeded to try to find a trial with the actual drug I had heard about and thought I had found one that I qualified for.  After many phone calls I found out they weren't accepting colorectal patients right now.  Big sigh of dissapointment...as I have been experiencing some concerning symptoms and wonder if the chemo is working.  Then I go to my apt monday and the Nurse Practictioner thinks we should do a scan instead of treatment to check things out.

I got a call mid day yesterday from my oncologist, realizing they would only call with bad news I cringed as I answered the phone.  She told me that the spots on my liver had grown.  She said that she would recommend adding in the drug that I am refusing to take (the one that makes me throw up before I even get home) and I gave an indication that was not happening, she then told me that my dr at Mass General had just called her asking how I was doing and telling her that she had an opening for me on a clinical trial.  The same one I had emailed with her about a few weeks ago.  These open slots are hard to come by and you have to have been without chemo for so many weeks to qualify so they are competitive and you have to jump on them.  She proceeds to tell me that the following day I need to sign consents and get this thing rolling. I was able to get an apt for today and have the research nurse send me the consent forms to read before the appointment.

The great thing about the trial is that it is a Phase B1 which means they have already come up with the therepeutic dose necessary (the other trial I had been following was only at the stage of determining the highest dose tolerable).  They are focusing on efficacy now (great to hear!)  One of the drugs is an antibody  (a protein produced by the body's immune system) that may help the immune system stop or reverse the growth of tumors.  The other drug acts by blocking a protein called MEK, which has been linked to the devlopment of growth of multiple cancers.  Basically it makes the cancer visible to the immune system so that it can do it's job.     

So I signed the consent forms and I am going to have to go through a series of tests to make sure I qualify.  I have to get an ECG, an ECHO, possibly a biopsy, an eye exam amongst other things.  This all has to happen at Mass General, so lots of driving back and forth to Boston.  The one downfall to all this is how long will it take before the drugs start working?  I'm already experiencing a lot of pain from my tumors on my belly making it difficult to sleep and also just function day to day.  I am very nervous about fluid accumulating in my belly as that causes such discomfort. 

So I am thanking you all for your prayers, this seems like exactly what we've been waiting for and wanting and hoping and praying for!  Let's just pray that everything from here goes smoothly and we can get this thing started and shrink those tumors!  I'll keep you posted on the tests and everything, my faithful followers! :)

4 comments:

  1. Oh Leah - this is beyond wonderful news! I will be praying that all of your tests to qualify go well and you can begin this soon!
    ~Dawn A.

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  2. OH MY GOODNESS!!!!!!! I am speechless!!!!!!!!!!! I am over the moon happy for you Leah!!!!!!!!!! What great news! I dont even have the words to say how awesome it was to read this, to know that you WILL be getting into a clinical trial!! Good positive thoughts and prayers being sent your way! AH! You are absolutely the healthiest person I know and I have much faith that your tests will show the same!! Amazing news hunny!!! God is Good!!!!!!! Love to you!

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  3. So happy to log on and see this post! Crossing all the things that your tests go well and you get into this trial.

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  4. I have chills reading this, Leah! I am so happy and excited for you. You and your family deserve good news for once! Hopeful that testing will go smoothly!

    missy

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