October 27, 2015 at 3:07 pm #84686
BEAUTIFUL! Thank you for that, Colleen. Your Mom is just beautiful as are the children. The little girl on your Mom’s left side looks just like my Granddaughter, years ago. Mine is now 23. Don’t blink as the time just sails by too quickly!October 27, 2015 at 5:03 am #84685October 27, 2015 at 3:53 am #84684
Dear Colleen, what great news. YEA and YIPPEE! If Mom can babysit twins we know she is doing good! You are so right in that HOPE.ATTITUDE and BELIEVING can conquer anything! Hoping for another excellent update down the golden road!October 27, 2015 at 3:49 am #84683
Wonderful, exciting and over the moon good news. Thank you for sharing.
MarionOctober 27, 2015 at 3:23 am #84682
It’s been awhile, but I wanted to provide an update on my mom’s status. She’s still doing well and there continues to be NO new growths. As you can imagine, we are absolutely ECSTATIC about her progress! She looks great, feels great, and has been busy babysitting my brother’s twins. We are so incredibly thankful for each and every day that we have with her.
Please see below for an email update that she provided to her friends in late August 2015.
“My treatment continues to be going in a positive direction. There is really not much new to report. I am in my second year of the immunotherapy clinical study and have treatments every other Tuesday at UCSF. The UCSF staff has been outstanding. My usual routine is to do blood lab work and, if everything looks good, the pharmacy is instructed to prepare the drug. Then the nurses administer the 30-minute infusion, and I’m done. You won’t believe how many times I’ve been poked, and sometimes my small veins can be hard to find. A PET/CT scan performed earlier this month indicates everything is still good with no significant interval change. The shrinkage of remaining tumors appears to have slowed down a bit and there is no evidence of new nodules – which is great news! My oncologist is still very pleased with my progress. So am I – particularly since I feel absolutely fine and experiencing no side effects whatsoever. I am optimistic for a total remission. Let’s keep our fingers crossed for that miracle to happen someday soon.”
#hope #endcancer #believeJuly 22, 2015 at 12:09 pm #84681kpowenSpectator
Hi there I am hoping that your mother is still going well on the Keytruda. I am just wondering g if she had any advanced tumor profiling done prior to going on the trial to see what mutations her tumor had?
Many thanksJuly 15, 2015 at 1:58 pm #84680jeanne031Member
I have never written here before and I am so thankful that there is so much support on this site!! You have no idea how ecstatic I am to hear about your mother!!! My sister has had intrahepatic CC for three years and two months . . . she has been through, chemo, dentrite therapy, Y-90, ablations, and more. Can’t seem to get a hold on this. I have done a lot of research on Keytruda and it looks very promising. My sister tried two trials having to do with her mutation and they “cut her loose”, which was disappointing, but maybe it is allowing us to get into something more promising. . . Keytruda.
We are trying to get into a solid tumor trial of the Keytruda , but are willing to go “off-label” if allowed. I have a very important question(s) that might be able to guide us. Can you please find out if your mom is MSI positive (has Lynch syndrome) or is positive for PD-1? Should we contact your wonderful Dr.?
Thanks so much,
Jeanne,March 3, 2015 at 9:54 am #84679
Thanks much, Colleen.
MarionMarch 3, 2015 at 5:51 am #84678
Thank you everyone for your warm wishes and thoughtful words. I will definitely relay them to my mom. We are all in this together. Your support means the world to my family and I.
I’ll see if I can get more information from my mom’s appointment with Dr. Munster. Keep you posted.
Take care & stay strong everyone,
ColleenMarch 2, 2015 at 11:55 pm #84677mbachiniModerator
Great news! Thanks for posting the update! I think of you and your mom often and keep her in my prayers. Give her a hug and tell her thank you for giving more HOPE for the future of CC!
Love and hugs,
MelindaMarch 2, 2015 at 4:26 pm #84676rainMember
Thank you so much Colleen for updating everyone. It is so nice to see good news on this board and gives the people in difficult situtions the courage to continue our path.
I wish you and your mum all the best
TeresaFebruary 28, 2015 at 6:33 pm #84675gavinModerator
Thanks for the update on your mum and what brilliant news this is!!! No new growths and shrinkage as well, love it! My fingers are crossed for the good news to continue on rolling for your mum and please keep us updated on everything if you can.
My best wishes to you and your mum,
GavinFebruary 28, 2015 at 11:12 am #84674middlesister1Moderator
Thank you for letting everyone know how well your Mom is going. We are so happy for you and Looking forward to many more positive reports in the future!
CatherineFebruary 28, 2015 at 11:09 am #84673
ctwong….great news. Congratulations; I wish for continued success. Thanks so much for keeping us in the loop.
Interesting to know that the cohort of only 20 US CCA patients are included in this multi-institutional PD-1 research study. I wonder how many other solid tumor patients are participating and what the ratio of each disease is. Also, in reference to Dr. Munster’s comment re: your Mom’s most likely only response of 30% – is there any available data? We would love to know more.
Again, thanks for keeping us informed of the fantastic results.
MarionFebruary 28, 2015 at 7:11 am #84672
Dear Colleen, this is such great news! YIPPEE! Thank you for this as it gives such great hope to others. Much continued success to your Mom and we will be so excited to read the next update. YIPPEE!
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