mbachini
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Dear Nancy,
I am so sorry for the loss of your mother. Sending prayers for peace, comfort and strength to get through this difficult time.
MelindaWanted to share some more on the research of my clinical trial. A paper was again published in Science journal yesterday, but here is a write up about it from National Cancer Institute.
http://1.usa.gov/1Sc2xRwDear Annie,
I am so very sorry for the loss of your father. I wish I could take the pain away……I pray for peace, comfort and strength for you and your family.
MelindaColleen,
I am so happy that your mom is doing great and living live to the fullest! I think about you guys all the time and always keep you in my prayers!! Thanks for the update and give Rose a big hug for me! Hugs and love to you,
MelindaCathy,
Sending prayers and lots of hugs your way!! Please let us know what the plan is for your treatment and care. You got this!!
MelindaMatt,
Can’t wait to see your great results and that line on your graph going way down!!! Happy there are no side effects and that life is good! You are always in my prayers! Hugs to you!
MelindaDear Rosalie,
My biopsy pathology was not definitive either, and it was also sent off to mayo clinic, and they continued to hunt for a primary tumor. When no other was found they assumed it was Cholangiocarcinoma but that was not confirmed until my liver resection three weeks later. Is your tumor contained to the liver? Hang in there! They will get it! Hugs and prayers sent your way.
MelindaIt has been TWO YEARS since my last treatment!
I just returned from NIH, where my scans still show no change. I am beyond thrilled with this news! Even though it never gets easy no matter how many times I go for scans, waiting for the results, always wondering what is going on in my body……you all know what I mean. Next checkup in 3-4 months and they will do a PET scan to see if there is any metabolic activity going on in what is left.
Some details about the trial. There have been a total of 10 patients treated in the past two years, counting me, with the mutation reactive t-cell treatment. Unfortunately, not a lot of success yet. One other patient with a response. I learned that for some reason my t-cells seem to stay alive in my blood, longer then others and they are trying to understand why. They are working on figuring out how to fix that, and a new trial protocol has just been written, but trial won’t be open for about another 3 months that involves putting the mutation reactive receptor on healthy t-cells in the lab. (remember this is my lame description, but hopefully you get the gist of it.)
Lori, the other cholangio patient I posted about last time, unfortunately at her second checkup had quite a bit of growth, after having almost 50% shrinkage the first month. The exciting thing is she was just retreated with her mutation reactive t-cells with the addition of the pd-1 receptor added to them. Her tumor expressed the pdl-1 or whatever is expressed for the pd-1 so there is still hope. She is the first and only patient to have this done so far. Her results will be November 5th, so please keep her in your prayers. Wouldn’t it be great to have something else in our arsenal!!
Charmin the other cc patient hoping to do my treatment, didn’t have any cells that grew. She entered into another trial https://clinicaltrials.gov/ct2/show/NCT01853618 so hopefully she will have good news as well!
As always, you are all in my daily prayers. I am so thankful for this board and all the support I have received over the past almost 6 years. There is hope in the future of this dreadful cancer. So many, working so hard to make a difference. Thank You!!
Lots of love,
Melinda
