dukenukem
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First, I recommend using the Search tool and input “hereditary”. This question has come up before.
I did a search of the ICPR database and found:
Of the 177 entries there were the following relationships between cholangiocarcinoma patients:
1 grandparent
1 mother
1 sister
2 biological child.Remember this is a voluntary database so it may not be representative of all the family CCA patients, but it’s the best we have now.
This was done back in September, so there may be new data. If there is, I will update this post.
Duke
Julie –
I looked into BGJ398. Not eligible – I don’t have the FGFR alteration and it specifically excludes CCA.
Not sure how Patty got into it. Will ask anyway.Duke
I’ve decided to go with irinotecan first. See how I tolerate it. From posts here, it seems to be 50-50 on whether or not it even works. Then another 50-50 about the side effects. Time to throw the dice and see what comes up.
Duke
Interesting, the more you read it.
I wish they had included the population in the various areas so you could get a better idea of the actual percentage of the population affected.
Duke
After four cycles both oncs will want a CT scan, so you will get a definitive answer to how the new chemo is working.
Duke
You’ve come to the best place to find out about CCA. There’s a wealth of knowledge and even more compassion here. We are all patients or care givers and we’ve seen it all. We are your extended family. Express any emotions you want – joy, fear, frustration, calmness. CCA is a roller coaster of emotions, for both the patient and the care giver. Again, we’ve experienced it all.
One thing I suggest is that you get a copy of the results of any blood work and have them explain the significance of each item – and take notes. This will help you trend results.
A good appetite is a good sign I think. I lost my appetite (lost 20 pounds) and that was what drove me to my doctor for further. I lost more but have since returned to my initial weight (plus a little more).
Not sure if a cough is a symptom. You need to make sure it doesn’t go to pneumonia which can weaken the body.
As for timelines, we say, “There’s no expiration date stamped on our heals.” You can read all sorts of timelines. It depends on whether she has intrahepatic, Klatskin’s tumors, or distal CCA. Many of the “timelines” are old and do not reflect current knowledge and treatments. There is so much happening with treatment options so quickly, what was good info last year may be out of date today.
Gavin will be answering soon – he lives in Dundee and has a great knowledge of CCA and how it is treated in the UK and the best places to go for treatment. Use the Search function to read his posts.
Duke
My CA19-9 started at 636 before treatment, dropped to low 50’s after 8 rounds of carbo/gem and 2 rounds of gem only. Since then it’s climbed to 220. Those roughly correlate to the tumor size in my liver.
Interesting is that with the clinical trial I am trying to get into, they aren’t even testing for CA19-9. They put everything into CT scans every 8 weeks.
Duke
I wonder if the data from the Mayo Clinic study supports this.
BTW, they won’t answer my emails about what they are doing and when they will report more findings. Major disappointment to me.
Duke
Your onc sounds a lot like mine – Eyeore at his best. I went to Mayo Rochester and saw Dr. Alberts to get an idea on where my next treatments might go. He was helpful but my local onc was unable/unwilling to follow up. I am now trying to get into a clinical trial in a different hospital system. Will know Monday.
I was first diagnosed in July 2013. Your onc’s estimates are based on averages in some study. There are other studies out there that are far more hopeful. I’ve got IHCC with mets to the liver, lungs, lymph nodes, and bones. You are right – you are getting the “by the book” answers.
Tears are normal, whether you are with others or alone. Don’t fight them – I’ve found them therapeutic.
You have to be aggressive and find an aggressive onc. You have to be your own advocate and never give up. Something I’ve found with doctors – when I start getting aggressive and push them, they sometimes don’t realize that I am fighting for my life.
Hang in there – there is hope beyond the standard 2 year prognosis, but only if you take control.
Duke
Kris –
Short and sweet – you can’t “pack it in”. You and Mark have come so far, it’s just not in you to go down that road. You bet , it’s certainly a downer. But, suck it up and keep on going. You’ve helped so many here, it’s time to help yourself. Know that we are with you all the way.Duke
NCT02187783
Official Title: Modular Phase II Study to Link Targeted Therapy to Patients With Pathway Activated Tumors: Module 8 – LEE011 for Patients With CDK4/6 Pathway Activated Tumors
I met with Dr. Estfan once when Dr. Sohal was on vacation. I agree, he is very good. He’s honest without being a downer. If it weren’t for the fact that Dr. Sohal is running the trial, I would welcome Dr. Estfan as my onc.
BTW, I’m in Madison, Lake County, about six miles from Lake Erie.
Duke
