My Introduction
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Hi Valerie,
Thanks for sharing your story! I am so glad that you are responding to the clinical trial drug and hope you continue to respond.
My husband was diagnosed with CC in 2010 and has been treated at the James that Dr. Goldberg is his oncologist and is wonderful!! If I can answer any of your questions, please feel free to email me at lee4532@gmail.com.
Best wishes,
LeeThanks 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,
ValDear Val –
Welcome to the family….the one no one really wants to be a part of but we are always here and ready to help if needed.
Sounds like things are going pretty good for you and that makes me very happy for you. Getting on a trial like that and having everything go pretty good is wonderful.
For your feet it sound like Hand-Foot syndrome, my husband had it so bad during his treatment with 5FU that he couldn’t walk. We used Eucerin cream rubbed in carefully like three times a day then used footwear that wouldn’t rub on his feet….diabetic socks and slip on moccasins. His feet burned like they were on fire or that he had gotten burned….they were red and hot to the touch to we would wrap them in cool wash clothes or soak for a little bit in cool water. Eventually it got better as his system got used to it.
Hope things continue to go good for you.KrisV
Dear Val,
Your story brings tears of joy in my eyes. I hope and pray all works out the best possible way for you and your family.
I hate CC with passion, because it took so much from me, and I wish it would’t do this to anyone else.Keep us posted, we do care…
Hi 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.Dear Valerie, welcome to our fabulous family where you will find a ton of support for CC, but sorry you had to find us. Congratulations on your 40% shrinkage of the tumor that is wonderful news. I admire your attitude and your winning outlook! While no one would want this monster to inhabit their lives you have come to the right place for more support. I am wishing for your treatment to be highly successful and yes, you have quite a team pulling for you with us included. Please keep us in your loop so we know how you are doing!
Valerie…..welcome to our group. You are so very right in that we wish to have a different cause, but given the circumstances, we are glad to have found a meeting place for all touched by this cancer. Similar to your encounter with cholangiocarcinoma the majority of us never had heard of this cancer let alone know someone who has the disease. But, here we are and happy to have found each other.
Congratulations on the exceptional positive response to the current treatment; a 40% shrinkage of the tumor is rather respectable. What great news to share with us! Thanks you, thank you. Valerie, would you be so kind and share with us the Novartis drug you are speaking of?
I am sure for others to come around real soon and welcome you as well. Please continue to stay with us. We care and we are in this together.
Hugs,
MarionMy name is Valerie, I was diagnosed with stage 4 CC 9/12/14 at age 47. I had never heard of it, had no idea how “I got it”, what it meant etc. I was simply terrified!! I did not have any of the textbook symptoms, so initially everyone thought I picked up a “bug” while on vacation in Mexico. My symptoms were similar to being pregnant, sensitivity to smells, throwing up and sleeping a lot. Well, when I got diagnosed I was shocked and at times I still am. It’s scary, overwhelming and tough on my entire family. I have 4 children 2 boys and 2 girls ages 14-29 (the oldest are my stepchildren) and a wonderful, supportive and loving husband of 20 years. Along with an “army” of friends and family- #teamval. I also rely on my faith to get me through this, I can not imagine doing this alone…I couldn’t.
I started chemo on 9/16/14 at The James Cancer Hospital and the Solove Research Center in Ohio. I was chemo for 3 months and it started to loose it’s efficacy. In Dec. I was taken off of all chemo in hopes that I could participate in phase 2 of a clinical trial.
I started the trial in Feb. between my last scan in Nov. through Feb. there was no growth in the tumor on my liver or the lesions on my lungs.
The clinical trial drug is a genetic precision targeted drug sponsored by Novartis that is targeting the genetic mutation which caused the CC so far (praise God) it’s working!! My tumor markers dropped by 50% after 31 days on the medication. My last scan on 5/22 showed continued shrinkage of the tumor on my liver. I have not looked up the tumor markings since my first scan in March, since starting the trial it’s shrunk over 40%. While this is uncharted territory I am grateful for other options and to have been able to have some semblance of a pre-diagnosis life.
The side effects have been more of annoyances than anything else. My fingernails recently turned white, my hands and feet crack very badly making it difficult to walk at times and to do anything that may hurt my fingers, ex. using zippers. I did loose my hair but it’s starting to grow back, other than that the other side effects have subsided. I actually feel like my old self most days, which is a huge blessing.
I found this site just last week. I realized that I needed to get my head put of the sand and not rely so heavily on my husband, because while this is our battle it is my fight.
While this is not a group I want to belong to (who does), I am thankful that I found you. The information that I have learned thus far has been invaluable.Kindly,
Val
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