I was looking for you two on Thursday. Dr. Damjanov and crew aren't very talkative about other patients. Dr. Denlinger knows she can give out my number or email to any fellow cholangio patients. No HIPPA here! lol
I'm so sorry things didn't work out, and there are more mets to his spine. I hope you can get into Keytruda, too. At least that will be much closer, too!
The optivo is also with Something, possibly interferon. I have to meet with Dr. Denlinger to get the details. Next Monday is that day.
And Lainy... Thanks so much. You are a very special lady, too.

I will be there this Thursday!

I'm next week. We're a week off! Darn.
Lainy and Melinda, you are so sweet. Two of the best people I know. And cc ambassadors, too!

Marion, I did have cc in my bile duct, but never tumor sized. It was enough to close up the duct, tho. I am ecstatic about that! The other new areas are either stable or shrinking. I hope it works as well at the 100mg dosage.
The vision started slowly then continued to decline. I think it's been pretty stable (not good, but stable) for the past few weeks. Going to eye dr. again soon for yet ANOTHER prescription!

Googily, my next appt is wed for ct scan at 11:00. Thurs with Dr. Damjanov at 9:15. Will be there until around noon prob. Look for the tallest woman in the room who is playing Pokemon or on my iPad. Sitting by myself.

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.


(2 replies, posted in Members' Cafe)

Hi, all. I know I've been absent but between all my naps I've been busy looking for a new place to live and working.
Anyway... Four of us met in NYC for lunch today. 2 were there for treatment believe it or not with Dr. Kemeny. They both say she talks to them. So I guess she just didn't like me!
Anyway, here's the pic! Hoping to do an overnight next time they are in town and enjoy NYC for an evening before they have to go for treatment.


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.

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....


(6 replies, posted in Members' Cafe)

A little Facebook birdie says its your birthday! I hope you have a wonderful one! And that you celebrate through the weekend.


(4 replies, posted in General Discussion)

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.


(127 replies, posted in Hospitals)

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.


(4 replies, posted in General Discussion)

I had my first of many (God willing) stent replacements today. The pain is minimal... A wonderful change from the first time. But my throat feels like someone took a hacksaw to the inside of my throat.
I layed down for a nap, and the acid reflux-like symptoms started again. I DONT have acid reflux.
Does anyone else have vomit in the back of their throat after this procedure?

Thanks Marion.
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 2.1x1.6 now 1.6x1.3. 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.

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!!

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!

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.


(2 replies, posted in Members' Cafe)

Love it! Very funny. Sad, but funny.

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.

This is getting old! I spiked a fever Thursday night and was told to go to my local hospital for blood cultures. I really figured I'd go home that day or the next. Nope. I got my first ambulance ride Fri night when they transferred me back to Penn Presbyterian. The local hospital had a ct scan done, and sent the disc with me. Unfortunately, they don't read discs on the weekend. So I was getting antibiotics this weekend, but they stopped them today. I was hoping to hear something from I.r. Today but unfortunately I didn't. So I wait. I've run out of things to eat on the menu!

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!


(7 replies, posted in General Discussion)

Have a wonderful week!

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.



(8 replies, posted in Members' Cafe)

I'm so sorry to read this. My prayers are with you.


(26 replies, posted in General Discussion)

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!!


(26 replies, posted in General Discussion)

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!