Ter23
Forum Replies Created
-
Posts
-
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.
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
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
