INCB 54828
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Rich received his test results today for the month,his tumor marker was 184 is now 84,CT Scan showed to be stable,so he has had 20% shrinkage all together since starting in June. They gave him a 2 week break from the trial because of his joint and muscle pain,also for the shape that his hands are in. When he goes back in 2 weeks they will be lowering the dose too. Not the best news but atleast there was no growth.I’m thinking this maybe the start of him being taken off the trial.
Hope everyone has a Happy Thanksgiving,we are Thankful for alot in our household this year.
Kim
Hi Sandy,
Thank you for the update. From what you describe, this all sounds very positive. Fingers crossed for more good news in December.
Regards, Mary
Good evening! Just a quick update on the trial. I just finished cycle 2 with some good news! After six weeks of being on the trial my blood work shows my liver enzymes at a lower level. My tumor marker AFP (my CA19-9 has always been normal for me) went from 350 to 30. Alkline Phos 544 to 390, alaine amino trans 66 to 22 and aspartate amino trans 67 to 27. So, something good is happening. I’ve only had a few side effects: high phosphate, dry mouth, sensitivity to spicy foods, thinning of the hair, pruney finger tips and increased energy (not a bad thing.)
This was also a round of other tests. Eye exam, EKG and CT scan. My eye exam and EKG were good. My CT scan did not show growth or shrinkage, but stable. This is good news, but not reflective of my labs. However, we know something good is going on 🙂 My next full battery of test will be on December 19 with results on December 22. I have now started cycle 3.Hi Mary,
Thank you for your well wishes, I do think they make a difference 😉
I believe keytruda is part of a trial for CC. It was either that or abraxane and gemicitabine. So lets hope for this to work !
Cheers,
Alejandro
Hi Arapro,
I am sorry to hear that this trial did not work out for you, but happy to know you have another treatment option lined up. Hopefully the next treatment will do better for you. Is the Keytruda part of a clinical trial?
Take care, regards, Mary
Hello again ! So two cycles into the trial and I got booted out 🙁 20% growth. Doctor was sadder than me that it didn’t work. I did not feel any side effects, not even my phosphorus went up, I hope it works for others. I’m going to try Keytruda now. Later !
Love hearing this news of shrinkage from all you enrolled in this trial!! Sending many prayers for continued success! Keep us posted on all the updates.
Melinda
Update on my husband, Brian…
He finished the first 2 cycles and the scan showed shrinkage with no new growths!! We’re VERY hopeful! We haven’t yet received the official % of shrinkage, but we do know there has been shrinkage (1.9 down to 1.5, 1.5 down to 1.3; a node has shown shrinkage as well). He has 15+ lesions, so the nurse explained that if the ones they are tracking shrank, all of them have most likely decreased in size. We left the hospital feeling SO HOPEFUL!!! Since May I’ve been worried sick, but now see some light around the dark clouds.
His side-effects to date have been much less severe than he had with chemo. Mainly, his hair has stopped growing in (since the end of chemo it started to regrow, but it has stopped), he has dry mouth and some change in taste, and the increased energy Sandy mentioned. He’s been undertaking major household projects of late, which I know make him feel accomplished and more like himself. His dry, cracked lips have healed as has the dry skin. His phosphorous had increased predictably, but he’s managing with diet modifications at this point. Otherwise, vision and EKG results have been normal. I continue to hope they remain so.
Thanks for all of the helpful info. and tips for side-effect relief. Wishing everyone a week of strength, healing, and peace.
Hi everyone! Just a quick update. I just finished cycle 1 and my labs show my liver enzymes at the lowest they have ever been! Good news 🙂 As far as side effects go I have had the following: dry mouth, constipation, thinning of the hair and high phosphate. I am now taking Renagel to help with the phosphate levels. I have also noticed increase energy. Not the energizer bunny, but not feeling like I need to take a nap 🙂 I will have my first scan in three weeks.
~ Sandy
Hi everyone–
I”ve been on this trial at the Mayo Clinic in Scottsdale, AZ since July 3rd. First CT six weeks into the trial showed 18 percent overall shrinkage. The 2nd CT twelve weeks into the trial showed no real shrinkage but everything did remain stable. I’m the 3rd person enrolled in this trial site and they are still recruiting. Dr. Mitesh Borad is the PI at this site (he’s also on the Cholangiocarcinoma Advisory Board/active in this organization) and he’s. also the oncologist who now oversees my care.
So far, the side effects have been manageable (stiff joints in my hands–most pronounced when I wake up), hair loss, dry eyes/nose). I’m glad to have found this discussion group.
–Andrea
Thanks for the suggestions, Kim. Brian just finished his off week and the cracked peeling skin has improved, but I did get him cream as well as lip balm which he’s been using. The nurse coordinator of his care mentioned that he’d probably start the phosperous-lowering drug eventually. Tomorrow he starts the next round of pills and meets with a nutritionist who will provide dietary suggestions.
I’m so happy to see the number of people on this board who are in this trial. I feel so positive and hopeful about it! The doctor told us we found a needle in a haystack in this study…we’re very lucky.
Good luck, Arapro!
Great information everyone, thanks for sharing! You are educating me and many other patients who view this thread! Sending good thoughts and many prayers for success on this trial to all of you!
MelindaKathy,
As for the phosphorous you can watch your diet and you can also eat some tums after eating a high phos meal that did help for a while but they finally just put Rich on a phos binding drug Renvela.
As for the lips you could try a urea cream which is what they say to use on any of the skin issue that will pop up usually on the hands and feet. Eucerin has been the brand they have been recommending and they do make something for the lips. Good luck.Kim
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