new to the disease and to this link
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Diane……I too would like to welcome you to our site and wish you the best of luck with the clinical trial. I assume it is this trial:
https://clinicaltrials.gov/ct2/show/NCT01828034
Hugs,
MarionDiane –
You have to go where you are comfortable and that is the most important thing. I live halfway between Portland and Seattle and the last thing I wanted to do was drive either direction. We have a cancer center in our town but it’s so small and I knew they wouldn’t have a clue and certainly could not do my husband’s surgery. We went to Seattle for treatment. That meant a 2-3 hour drive up there and what could stretch into a 4 hours drive home – so dependent on what traffic was like.
I did it for 2 years and for a 6 week period of time, it was daily M-F for his radiation. I would not change one moment of that either. Often times he slept but more often he was awake and we talked…..about everything and probably more that we had in the 11 years of marriage before that.
I wish you such good luck with your trial.KrisV
Thanks, I have to tell you that I was so comfortable after meeting everyone at MSK. Dr Lowery is wonderful and that’s just after one meeting. This is her speciality. I didn’t think I wanted to travel back on forth to the city for treatment and with the clinical trial I have to go to that office. But everyone there makes you feel good and important. We had some questions before we were about to leave and the young woman behind the desk instead of picking up the phone and calling, went to the back and got someone in about 1 minute. They didn’t say oh we’ll get back to you or wait while I try to get someone to answer your questions. They all seem to be attentive.
This clinical trial is in phase2 already. Hoping that it works and moves onto phase 3.
I wish everyone on this site good luck .Dear Diane –
Welcome to the best little family that no one wants to be a part of. Sounds like you have actually done so much of the hard work already. And great news that you are able to get into a trial. I know that you are good hands at Memorial-SloanKettering. I hear wonderful things about that center.Good luck and keep us posted.
KrisV
Dear Diane,
Welcome to our family. My mother was in her early 70s, and no experience with MEK162, but hoping that your post may get others to chime in if they have been treated with the inhibitor.
All of us are in your corner with best wishes for low side effects and great results.
Take care,
CatherineThanks, always been a positive person, hoping it makes a huge difference now.
Just curious how many people here are woman and in their 50s. Any using MEK162 inhibitors and how they’re doing with it.Dear Diane, welcome to our remarkable family and I can tell from your attitude you ARE a WINNER! WOW! You took the bull by the horns and went right at it. I want to wish you much success on the trial and your treatment and we are all here for you and to applaud your progress.
Perhaps the link below can be of some help and please do keep us updated as we truly care.http://cholangiocarcinoma.org/newly-dx/
I was recently diagnosed bile duct cancer. I look and feel fine. I’ve been going to a hematologist/oncologist for 12 years due to essential thrombocytosis. I went for my usual 3 month check up and he noticed that my liver enzymes were slightly elevated. He took my blood two more times and no change. Sent me for an ultra sound thinking that maybe I had gallstones that was irritating my liver causing me to have high liver enzymes, but the ultra sound showed a spot on my liver, so then I got a Cat Scan. That showed what appeared to be a mass on my liver involving my bile ducts and a couple of tiny lesions also on my liver. Went for a liver biopsy and that unfortunately showed that I had liver cancer. Went for a Pet Scan and that showed a spot on my spine. I’m stage IV. I’m not jaundiced, I’m not feeling sick, just have a smaller appetite. I went for two consultations both stating the same thing. I’ve decided to go with Dr M Lowery at Sloan. I found all the people there to be very nice and accommodating. I decided to be in a clinical trial MEK162 along with chemo. I’ve started on the pills this week and will be going for my 1st chemo this Wed. The hardest part was telling my 3 children and having my husband hearing the bad news. I’m a positive person and have awesome family and friends. Hoping to live as normal life as possible for as long as possible. I’ll have the summer to find out how the drugs will affect me. Hoping that I can work atleast 4 days a week come September.
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