New Member – Wife of newly diagnosed
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What is so frustrating though, is my husband had the genetic testing and then the insurance wouldn’t pay for the meds because there wasn’t any proof to show it would work.
we were so excited about the testing until we got to the insurance part. Just to refresh my husband is 45 w/ 8cm tumor in liver diagnosed a year ago. It’s been chemo chemo chemo. No surgery yet and hoping that is what we find out in a couple of weeks but we don’t have our hopes up for that just praying control. We have a 6 year old that has become a little clingy but we give extra hugs and honest reassurance. A lot of praying, nothing sweeter than a little one praying for cancer to go away 
Heather
Hang on… And I agree when you do have a plan it does seem to ease some anxiety
Hey Carrie,
I sent you a private message!! We may be at MDA at the same time, would love to meet up with you guys!!! This is so rare and I think it would be good to be in contact with families who are going through similar experiences…here is my email hwomble@austin.rr.com
Heather
I just want to let you know you and your family are in my prayers! I hope your husband can be around a long time for you and your children. Stay strong !
Hi Carrie,
Welcome, although I have only recently been welcomed myself to this community. My 47 year old husband, father of three, was diagnosed with icc on Aprill22 of this year. Our oncologist immediately sent us to Mayo in Rochester . We’ve been there twice. Our first visit was to confirm diagnosis and second visit (this past week) was to do therasphere (targeted radiation). My husband was symptomless other than a pain in abdomen. Since our first Mayo trip and the trip this past week (3 weeks about) the tumor has become aggressive. He is distended with fluid in his abdomen (drained twice and again tomorrow) and this will continue. He was not a candidate for surgery.
. He has lost a lot of muscle tone and is so very tired.So we are living with this, one day at a time and a lot of prayer. A LOT!
Thanks, Christine
Hello All, I just want to add my prayers and support to all of you just starting out with this crazy ride. Thought its horrible at any stage of life, I especially have deep reserves of compassion for you with young children (like my sister). It’s so hard to stay “normal” and upbeat and patient with the kids when you’re in this extremely stressful time. Like many have said in the last on this site, it does get easier to manage (the anxiety I mean) when a plan is in place.
Peace, WillowWe must know that that science has not identified a gene for this cancer in fact, we lack even a basic understanding of the cause or underlying molecular mechanisms of this disease.
Tests can however predict good or poor responses to tumor receptors; for
example: mutations in the KRAS gene predict poor response to EGF receptor (EGFR.)
Hugs,
MarionOne last piece of friendly advice. If possible suggest you ask for genetic testing for chemo-sensitivity so that you have more information possibile. i believe MDA do it via a company called Foundatione One
Rain – Thank you so much for your info and thank you for taking the time to read our posts and blog. Thank you most of all for your prayers from Australia!!!
I am sorry to hear about your husband however you have definitely come to the right place. I spend a lot of time looking through various posts to see what has worked for some and what others are trying.
From other people being treated at MDA I believe you have definitely gone to the right place to seek advice.
I have read your posts and website and am just inspired by your faith and courage. Your have a beautiful family and I wish all the best for you.
Not being an oncologist I can’t give advice however am happy to pass on what we are trying with my father whom has stage IV metastatic CC.
He is currently on chemotherapy (in the middle of second cycle so very early days). He is doing a trial with GEM/CIS and panitumumab (the drug being tested in the trial).
On top of this I also give him vitamin D twice daily ( tested his vitamin D levels and they were low likely due to malabsorption after his whipples operation). From an alternative / natural medicine side I also juice a bitter melon daily (tastes terrible however do a search on this site for this Asian fruit and you will see why I thought we might as well try it)
Other than that we do not routinely try alternative meds or herbs and everyone is right in that you should check with oncologist first. Many oncologists seem not to like high dose anti-oxidants with chemotherapy as it may make chemotherapy less effective hence I am wary of these.
This morning at church I prayed for your family so just know that even someone in Australia praying for your family
Lainy–
Thanks for that info (sorry to threadjack orig thread–)
did NOT know we could send info off to other dr’s.That is good to know since travel is not an option!
Treysam–GREAT news on “shrinkage!”
“in the lungs” means that the cancer has spread to my husbands lungs
as well–he had his first PET scan thursday- after 9 weeks of treatment!
Hi Carrie and Travis,
I just wanted to welcome you to this site, but so sorry you had to find us. My daughter, Lauren is the one with CC. She is 27 now and was diagnosed at age 25. As long as you are questioning things, I would keep on getting opinions until you are satisfied. We are in the minority, I think. We were confident and happy with the surgeon and oncologist we met from the get go. It probably didn’t hurt that my daughter and her husband work at the facility we go to and they knew the surgeon and how good he was from personal experiences. Lauren will be having the second part of a two part resection this coming Wed. and she was told she was inoperable at first also. She has been through many different chemos, Theraspheres, and was finally ready for surgery!! So, don’t give up hope and try and keep a positive outlook. This cancer is compared to a roller coaster often on this site. it is so true. Sometimes things look great and other times things can’t get much worse, but we are all here to help one another. I wish you and Travis all the best.
Hugs,
-Pam
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