utahgal90
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I am also in this clinical trial at The James Cancer Hospital and the Solove Research Center in Columbus, OH. I was diagnosed with stage 4 CC on 9/12/14. I started on Chem 9/16/14 and was on chemo for 3 months before it began to lose its effacy. I did genomic testing and was advised that this drug was specific to this genetic mutation and phase 1 results were promising.
I started the trial in February, like Patty I too struggled with managing my phosphate levels, I was obsessed with monitoring any foods with phosphate, but it did not matter, the drug itself causes the high phosophate levels. I was taken off the trial for week in Feb. and March, it was devastating to be taken off of the drug but once I got the first scan I see that it did not matter. Everyone in the trial has been taken temporarily off of the trial for the same reason.
I have had two scans and the tumor on my liver has shrunk by 40%. Tumor markers down by 50% in March; I have not checked the May numbers.
The only side effects that I have trouble managing the hand foot syndrome and my hair falling out initially. Additionally, recently all food taste bland-the exact same. Small price to pay to feel good.
I feel like my pre-diagnosis self 95% of the time, which is a blessing!!Thanks Kris,
I’ve been using CeraVe (after trying Vaseline, coconut oil, Eucerine and Udder Cream) which helps somewhat. I have not tried diabetic socks so I will look for them.
Yes, they feel like they are on fire, it hurts so much to walk…ugh!
I”ve already learned so much from this site and I’m so grateful to have and offer support.Kindly,
ValHi All,
I wrote my “Introduction” email at almost 2 AM, ET after a very trying day, so it was not my best work.
The clinical trial drug that I am on has no name yet, it simply goes by the product code# K8TMOC.
I had to pass the baseline tests, which is one of the reasons that I entered the trial a little later than expected. The baseline tests consisted of: bloodwork, heart scans and an eye exam. I was so nervous when I attempted the heart scan that I did not pass the first test.
One of the side effects that each of us in the trial (there are 4, of course because of confidentiality laws I have not met any of them) at The James have experienced are increased phosphate levels, which for two months caused them to withhold treatment for a week. Everyone has to take phosphate blockers and avoid foods that are high in phosphates, which is not easy as I have learned that almost everything has phosphate in it.
I am happy to answer any questions that I can about the trial. I do know that there are 12 participants worldwide and that we all have different types of cancers but share the same genetic mutation, which is why this targeted medication is the future. My oncologist told me that this is a paradigm shift for doctors and they are learning just as all of the participants are.
Prayers are appreciated that we all continue to exceed all expectations.
