Forum Replies Created
August 22, 2016 at 3:14 pm in reply to: ARQ-087 Clinical Trial : FGFR2 Tyrosine Kinase Inhibitor #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….
Oh, yeah my body is letting me know it! Bilirubin is still within normal limits, but barely. And alkaline phosphates is sky high. My care team had to discuss with the trial sponsor to keep me in the trial.
Thanks for the info on your mom. Hopefully it only lasts one night for me.
Third update for me! I’m now enrolled in another clinical trial with Dr. Nevena Damjanov at Penn Presbyterian Abrahams Medical Center. It’s a longer drive, but in 8 weeks it’s working!
And I still get to see Dr. Denlinger at Fox Chase every once in a while so I’m happy. Dr. Damjanov is a very caring onc, too. I feel like I’ve known her longer than I have.June 23, 2016 at 10:10 pm in reply to: ARQ-087 Clinical Trial : FGFR2 Tyrosine Kinase Inhibitor #91459
I got the results from my first official trial ct scan and the results are really good! All areas have shrunk. Of course we are measuring in millimeters, but I’ll take it! One of them was 2.1×1.6 now 1.6×1.3. So pretty substantial shrinkage.
Also on the report are two new items. I now have ascitis. And there’s an undetermined lesion on my spine.June 21, 2016 at 3:33 pm in reply to: ARQ-087 Clinical Trial : FGFR2 Tyrosine Kinase Inhibitor #91457
I had my first “official” ct scan yesterday. I get the results Thursday. I DO know that unofficially, one of the areas in the crowd of stuff is smaller. I also know the lesion on the right of my liver, remote from everything, is unchanged. Of course, this is from a scan while I was in the hospital, and nothing was measured.
So I wait until Thursday to find out the official news.
My phosphates have been out of whack. Not sure why. But I’m on a low phosphate diet. Anyone who knows me knows how hard this is… I LOVE my cheese and pizza!!June 17, 2016 at 3:20 pm in reply to: ARQ-087 Clinical Trial : FGFR2 Tyrosine Kinase Inhibitor #91454
I’m sorry about his bone lesion. Hope the rod is successful and comfortable. Good luck with the gem/Cis regiment.
I have my first trial ct scan on Monday. Then I have to wait until Thursday for the results. I do know from the last hospital stay that one area shows shrinkage. I also know that the lesion on the right bottom of my liver looks exactly the same. The doc in the hospital let me see the ct scans.
I sure hope I beat the average of 6.5 months. The last trial I blew the average out of the water! I believe the average for that trial was a year, and I did 2.5!June 14, 2016 at 1:59 am in reply to: ARQ-087 Clinical Trial : FGFR2 Tyrosine Kinase Inhibitor #91451
I’m sorry tom is off the trial. I hope the onc and Dr. Javli can come up with a great new game plan.
6.5 months? That’s all? So I have 5 months to go… I’m actually planning on being one of the longer lasting patients. My last trial I had everyone by about a year.
I’m sorry. I got out last Tuesday. No real idea why I spiked a fever. There was infection starting in my duodenum so that must have been part of it.June 7, 2016 at 2:20 am in reply to: ARQ-087 Clinical Trial : FGFR2 Tyrosine Kinase Inhibitor #91444
Ashley, many mutations cross cancer lines, especially in the gastric area. And cc is basically colon cancers brother or sister. They are very close, according to my surgeon they are more closely related than cc and liver cancers. In my original biopsies, I had a breast cancer mutation. Unfortunately, that is not the case anymore.
I hope Tom improves enough to get back on the trial. Have you discussed lowering the dosage? My onc says it’s a possibility if this stupid stuff keeps up. I hope the biopsy shows a mutation compatible with Keytruda or Obtivo so Tom can get on that if he has to leave the trial.
Try to stay positive. It works!
Have a wonderful week!May 22, 2016 at 5:23 pm in reply to: ARQ-087 Clinical Trial : FGFR2 Tyrosine Kinase Inhibitor #91440
What great news about Tom! Although I’m sorry about the bone lesion. I guess is was lucky with radiation… I just had a little nausea and tiredness, but it was manageable.
I’ve had a tough time since starting the drug, but I don’t believe any of it has to do with the trial. I had a blood infection and then horrible reactions to the antibiotics. 10 days total in the hospital, but I went to the one affiliated with my new oncs office so I could continue the trial while in the hospital. Finding approved drugs was unbelievably difficult.
So far, since I finished the antibiotics, I’m not having any bad effects. Of course, I’m only on week 4. I had a cat scan while in the hospital, and I believe I have another one in 4 weeks. I’m nervous, as only one of the 3 new areas was biopsied so I don’t know if all of them have this mutation. I sure hope so!
As far as the 300 mg daily… My onc said they have the option of lowering the dose if needed. Maybe you need to do that for a few weeks so he can build his levels back up? It should be an option, at least. And, yes, chemo drugs in our system continue to work for a while. So although I understand his concerns I hope he doesn’t worry too much.
I was released this morning. Yay!! Stazi is sooooo happy to see me!! She is pretty much glued to my side.
I don’t go back down until thurs. I’m sure putting a lot of miles on my car!!
I’m back in the hospital since the iv drugs didn’t bother me. No pills today = no vomiting! Although it’s been close a few times.
And to answer Marion, no, fluids don’t stay down either. It was pretty scary the first round because there was red. Then I remembered I had some watermelon!
OMG!! These antibiotics are kicking my butt! What little I eat is coming out of both ends. I’ve got to get something changed in the antibiotics dept. Or I’ll probably end up back in the hospital for dehydration.
I got my walking papers at 5pm last night. Yay! Stazi is being very clingy (for her). She actually walked onto and settled in my lap!
I couldn’t wait to get in the shower, but gave her some much appreciated brushing and petting.
They haven’t figured out whether I have an abscess or not, but are going to cautiously watch it. They have me on massive antibiotics. I never have reactions, but I AM NOW!! I think I’ve lost 5 lbs! Other than that, I’m feeling pretty good.