INCB 54828
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Hi Kathy,
Thank you for the encouraging update on Brian’s super long run with this trial. Hopefully the next trial will bring yet more positive outcomes. Please let us know which trial comes next.
Wishing you and Brian all the best as you navigate this fork in the treatment path.
Regards, Mary
My husband finished cycle 26, but has now been removed from the trial due to lesion growth. We are now evaluating two other trials: TAS 120 at U of Penn and Entinostat in Combination With Nivolumab at Johns Hopkins. He had a really good run on Pemigatinib (INCB54828). He had 69% shrinkage of lesions. I hope we are just as fortunate with the next trial. I consider us incredibly fortunate that there are other trials available to him as he has had 3 lines of treatment to-date. Good luck to others on the trial.
My hubby and I are at a JHopkins today for scan results and to start cycle 26. Last scan was iffy; it showed some progression of a non-targeted lesion. I’m hopeful for good results today.
Terrence and Kathy,
Thank you for sharing the positive results you are seeing from the INCB 54828 trial. This is indeed good news.
Take care, Regards, Mary
Thank you for the update on how your husband is doing on the trial….it sounds like things have been going very well for him. I hope he continue to see stable or shrinking tumors. It is nice to see the updates on how people are doing on the trial. I am embarrassed that I haven’t posted any updates since December. I have just completed my 19th cycle and I am very happy to report that I have now had 5 clean scans. My blood work continues to gradually improve except for my Vitamin D (the lack of dairy maybe). My side effects have been similar but it sounds like more manageable.
Dry skin, mouth and eyes (I use systane ultra eye drops). My hair got much thinner and lighter in color. Long eyelashes and eyebrows. Joint pain. Phosphorus levels are at the low end of normal by the 3rd week (not really sure how high it is during the first 2 weeks on drug). I am tired the first four days starting each new cycle. The biggest issue has been that I have started getting migraines after only having 1 prior to starting this trial. I don’t believe this is a side effect that they have seen on others and something that we are monitoring to see if they become more frequent.
My husband is still on this trial at Johns Hopkins. He began cycle 17 today. In the beginning he had terrific shrinkage…total of 57% shrinkage. That has stopped, but his last 3 scans all show stable: all lesions smaller than 1cm.
Side-Effects:
Dry, blistered, cracked lips
Dry mouth, eyes, and skin
Lost toenails and fingernails
Head and body hair loss
Long eyelashes, some of which grow toward his eyes and lie right on his eyeball, so they are a little bothersome sometimes
Sore joints
Phosphorus hasn’t been a problem
Hi Kim,
Thanks for the update. Fingers crossed that the TAS-120 gives Rich another good run of positive results. We look forward to hearing how this new trial goes.
Regards, Mary
Rich has been taken off the trial, after a 2 week break and a dose reduction his scan this week showed tumor growth and 2 new spots on his liver. We are now going to Mayo for the TAS120 trial and pray that one will work longer and have less side effects.
Wish everyone on this trial the best of luck.
Kim
We always love to get updates and see members stop in. Although many have gone over to FB or other media, I think the posts like your are something that even if people don’t respond, will be read by so many. There are many times I have used the search function here and find info that helps. With Mom’s recurrence, I’ve started looking for info on how CC patients are doing with the clinical trials.
Fingers are crossed that next time you check in, it will be to share great results from the Keytruda trial. If you do check in, can you give the number of the new trial and location?
Best wishes,
Catherine
Y’all! I feel so foolish. I started this thread nearly a year ago after I attended the conference in SLC.
I always forget about this forum. I am sorry. I’d love to give my update so others will know.
I did end up choosing this trial and started on March 2, 2017.
My first scans were amazing, a nearly 25% shrinkage over all. Each scan, I continued to have shrinkage, averaging about 7.5% from the previous scans. In mid-September during a check in, we decided to take a two week break because of the hand/foot syndrome. When I went back in early October we realized that I the break came during a time I would have needed a scan so we did one that day.
Results showed a very small new spot on the liver. Strangely it was not even visible to my oncologist. The radiologist had to point it out to him and then he realized, yeah there is something new there. When the scans were looked at by 2 different independent radiologists for the trial company, neither one of them could see it. They wanted me back on the trial. So 9 weeks later I get my next scans with new growth. Yes, the spot no one could see before grew. So, I’m off the trial.
Now this was a great trial with shrinkage which is marvelous. My side effects included;
High phosphate levels – which I kept under control with diet changes and Tums
Some strange rash – no cream did anything for it but eventually went away on its own.
Alopecia – I completely lost all hair on my body. (But eyelashes started growing in mid way through and now I’ve got killer lashes. Literally when I put mascara on, they’re as high as my eyebrows
Hand/food syndrome – very hard to treat for me. I eventually settled on a mixture of O’keefes Working Hands and coconut oil. But had problems walking, I wore Berks and socks (lol) because the friction of shoes made my heels bleed. Lost all my toenails and had lifting of my fingernails.
Mouthsores – Magic Moutheash was helpful in numbing sore spots.
Joint pain (thumbs, elbows, knee and hips) – settled on a hydrocodone/naproxen combo that helped make it tolerable.
Dry Eyes – got worse throughout treatment. Artificial tears throughout the day and a gel and thicker eye drop at night soothes this. Overall a very drying med. I ended up twice a week in for hydration which helped me feel better.
Im currently looking at a new trial that includes Keytruda in combo with two other meds. Fingers crossed.
Thank you Mary and Catherine.
Catherine,
I will be praying for a very successful surgery for your mom. I was also worried about what they would find when they opened me up. There is nothing that anybody can say to her to calm those concerns but she should know that she is not alone thinking about that and all of us that have gone thru that were thinking about the same thing. I hope that makes sense.
I pulled my Foundations Report to confirm all of the alterations:
FGFR2 amplification, FGFR2-RABGAP1L and FGFR2-LAMC1 fusion.
MEN1
MCL1 amplication
ZNF703 amplification-equivocal
I hope this helps.
Terrence
Terrence-
What a great way to start my day! I am so appreciative of you checking in ( sending hugs to Jill too) and sharing your success. My mother is having surgery on the 20th to remove a met and very worried that there will be more lesions once they open her up that were not seen on the scans. Being able to share stories like yours that give hope are so important in addition to us being so very happy for you and your family. If you have time, can you remind us of what mutation you have?
Best wishes,
Catherine
Terrence,
Thank you for sharing your wonderful news. I hope your next round of treatment is uneventful and your next scan is equally positive. What a great holiday blessing for you and your family.
Regards, Mary
Hi Everyone–
I wanted to provide an update. My sister in law Jill originally posted my information a few months back after my first scan. Some quick background: I was diagnosed in March 2016. After a rather minimal impact with Gem/Cis combo I was able to have major surgery in July 2016. This was followed by Folfironox and 2 ablations. In late June 2017, they found 4 new tumors (all under 1.2 cm). At that time, I started this trial (first pill was 7/6). The first scan (as Jill mentioned) had fantastic results. 2 of the 4 tumors disappeared completely and the other 2 shrank from 1cm to 0.7cm. The second scan showed continued improvement as the largest tumor shrank to 0.6cm. My latest scan from last week showed the most amazing news that all of my tumors are now GONE!!! The results are truly amazing and we are so excited. I will continue on the pills and my next scan is in 9 weeks.
So far my side effects have been managable. I had to adjust my diet because of the phosporous but these changes have brought my numbers back to the low end of average by the end of the 3rd week (2.6 on my last blood work). Taste change, dry mouth-i didn’t get any sores like some people have (lemon drops, salt walter/baking powder rinse and biotene – seem to help me a little), dry eyes, and I am extra tired the first few days after starting a new round of the pills.
I hope everyone can see the same benefit that I have.
Terrence
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