This is the drug I was on for so long!

Yesterday began my 7th year fighting. On Feb 9, 2011 I had an ultrasound. On Feb. 10 I had a cat scan. Then the rollercoaster began.
Unresectable, but have had some lengthy pretty good outcomes with different drugs.

Googily... I had a similar conversation. I told him if he ever wanted to change careers he should read meditation and calming books for audio!

Yes, Gavin... When are you going to make it??


(7 replies, posted in Members' Cafe)

I couldn't have said it better! It was great meeting you.
It was a wonderful few days filled with reconnecting, new connections, laughter, tears, hope, and TONS of information!


(0 replies, posted in General Discussion)

Well, this post is full of stuff...
I talked to my onc about my latest scan. Some of you know I was lining up for an interferon and opdivo trial. Good news... The scan shows no new measurable areas of concern. So nothing is big enough for biopsies. Good news is that means I'm stable. But I can't get on the trial. So I get to wait again. We will get another scan in 2 months. Don't get me wrong... I'll enjoy the break! Maybe my eyesight will come back!
Other not so good news. After a good 60(?) scans I had a reaction to the contrast. Nothing major, just red face, ears and neck. BUT I had New England clam chowder saturday and got dizzy, vision went black, throat hitched a few times, had no control over my voice. I didn't go to the hospital as the breathing problem never really got out of hand. But it was enough to scare the heck outta me! A friend asked if I wanted a ride home. I told her if she was driving me anywhere it would be the hospital. But everything subsided within 20 or so minutes. But that means no more shellfish for me. I need a new favorite food group (besides chocolate). I average shrimp about 2x a week. But I don't really want to go that way. I've been fighting cancer 6 years now... I'm not gonna let an allergy get me.
Another thought I have to think about is that my brother offered me a room in his house full of females. Not sure I can take all that, but it's in San Diego, so I'm really tempted. Even if I help with the mortgage, it's still 1/2 of what I pay now. As I watch the weather and hear "snow" again, I am more and more tempted. If he had an inlaw suite, I'd be there already! I like my privacy but would also like the family support. Anyone have a quarter I can flip? Lol

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!