November 26, 2016 at 11:10 pm #91419
Oh, Kris, stupendous news about no cancer sighting!!! I am over the moon for you. You are such a good model for hope and miracles. My wish is for everything to continue in the right direction and wish for good news about the eyes! I just want it all to come together in the best way cause you sure deserve a great break!November 26, 2016 at 10:51 pm #91420
I’ve been on this trial since late April. In Oct. I went to have my biliary stent replaced, and the doc said it was wide open, so no stent! Cancer is not visible in bile duct anymore! Yay!
Bad news… I had my 4th hospital stay since starting the trial. And my vision has gotten really bad, esp in the left eye. So now I am on 100mg a day, instead of 300 mg. I find out how things are in two weeks. CT scan then doc appt a couple of days later. I’m figuring my next scan will really let us know how things are, provided my eyes don’t get any worse. I’ve had 3 prescriptions since July, and need to go back to see how things are.November 15, 2016 at 9:30 pm #91421
Hi, JD! Good news about your DH and hope for his ‘no side effects’ to continue. Good road you are on and here is wishing for the road to be smooth with no bumps! Good going!November 15, 2016 at 9:05 pm #91423
googily….great to hear that everything is moving along just fine. Crossing my fingers that response to treatment is everything we expect to see.
MarionNovember 15, 2016 at 5:36 pm #91422
My DH did indeed start this trial, last week. Six days of the pills so far, and no obvious side effects yet.November 1, 2016 at 6:16 pm #91405
Agree, googily, we see clinical research studies accepting patients declining first line of treatment (Gem/Cis) Until not too recently patients needed to fail or reach maximum benefit to first line prior to enrolling in a clinical trial. Exciting world.
Best of luck,
MarionNovember 1, 2016 at 6:09 pm #91404
Yes, he had his CT scans done this morning. And tomorrow he’s getting a Zometa infusion to strengthen his bones (okayed by the trial team, even though he hasn’t started the trial yet).
We are still in his washout period, so at least right now we aren’t feeling like his care is being alarmingly delayed.
We also saw a different oncologist yesterday, for a 2nd opinion, at Georgetown, who agrees that at this stage, particularly given how good Bill still feels, that clinical trials are the way to go. I must say that it is becoming much more of a common refrain from oncologists that “chemo really doesn’t get you very far” with cholangio. They are all about the clinical trials, as many of them as you can daisy-chain together.November 1, 2016 at 4:30 am #91406
googily….I assume he will be scanned prior to beginning of treatment?October 31, 2016 at 12:00 pm #91408
Hi Marion–Yes, he’s starting to feel some pressure under his rib cage again.October 30, 2016 at 4:34 am #91407
googily…..so many snafus along the way. Finally, you are getting somewhere. Are you pretty sure his lesions are growing because of symptoms your husband is experiencing?
MarionOctober 29, 2016 at 1:43 pm #91410
It looks like my husband will be starting this trial in November, if biopsy bureaucratic issues can get handled to get him set up without too much delay past his four-week washout date. (We are pretty sure his lesions are growing, so this makes for a sort of tense waiting period.)
We had looked at the NCI MATCH AZD 4547 FGFR inhibitor trial, which is close to home, but I wasn’t all that impressed with the numbers they had reported in the Phase 1 trials. Driving to Philly isn’t optimal, but isn’t the end of the world, either.
(This ARQ trial is now a Phase 2 trial for intrahepatic cholangio patients with an FGFR2 fusion.)August 23, 2016 at 11:40 pm #91466
Kris…. what is it that you can eat?
MarionAugust 23, 2016 at 1:22 am #91465
I was using boost in my smoothies but it’s pretty high in phosphates. And since my phosphates are high, it got cut out.
I think of you, too. I hope you’re doing well.August 22, 2016 at 3:37 pm #91464
Dear Cookie, just a note to say I am always thinking of you and as we all know stable is a very good word. Have you tried any of the nutrient drinks like Boost or etc? Always thinking about you and of course wishing for the next scan to show more shrinkage!August 22, 2016 at 3:14 pm #91463
Well… Results of scan #2 on the trial. Mostly stable or minimal shrinkage. Nancy of you know this part… It seems I gave small nodules on my lungs and my kidney. Too small to determine anything at this point, so that’s hopeful. But they were there last scan and not reported! Ugh! I hate lazy radiologists. I know many gave had nodules for years, but it was still a bit of a heart stopper for me.
I am still on the trial. My phosphates are getting lower, but still high. My blood counts were low, esp. WBC, which was extremely low. But my onc said she’s willing to wait and see…
Overall a positive report, I think. Major side effects are lots of reactions to foods, esp fruit for some reason. So my main source of nutrition has become an issue….
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