Well... I got the zonk. The doc was unable to insert the stent. Not sure what to do about that.
Tomorrow I get a blood transfusion... Hopefully I'll feel better after that.

Lol Lainey. But with no seafood or cabbage(?)????

Long day today. Dr. Denlinger did not agree with irontecan. She thinks TAS 120 is still a trial available at MD Anderson, so I will call Cooper tomorrow. They have partnered with MD Anderson and are less than an hour away.
She is also going to call Dr. Javle personally and ask about TAS 120 and Cyramza. She's never heard of Cyramza being used for cc.
I have an ERCP on Wed. to put the stupid stent back in. My bilirubin is now 1.9.
I'm having a transfusion on Thursday. She had to warn me that there is a slight chance that I may contract HIV or Hepatitis. I told her I have cc: who cares? I want my energy back! I'm tired of getting dizzy while standing up. It's getting old!
Mon 4/17(?) I meet with her again. Thurs. 4/20 I have gem/Cis scheduled. I'm doing everything I can to keep that from happening.
I am waiting for Moores at UCSDMC to get off their butts and give me SOMETHING to think about! Eli Lilly actually contacted dr. D about a new trial and wanted to know if I was interested. There are no spots, but since they specifically want to see me in it maybe they will squeeze me in there.
Nothing is biopsy able. Either too small or not reachable. I asked about a liquid biopsy from the peritoneal cavity and she said she would check that out.

All this was discussed today! Poor Dr. D gets just as much info as she gives! She learns so much more because I won't stop looking! lol

Ok, that's about it. I know... That's enough for now. I told them I'm taking up residence at Fox Chase for the next couple of weeks.

Dr. Javle had a few suggestions. None requiring me to go there. Irontecan -- CPT11. TAS120. Cyramza (not that toxic). I also am emailing with UCSDMC. There's a trial they are discussing but I have no details yet. I hopefully know in a few days.
I see Dr. Denlinger Monday and will discuss these options, as well as her thoughts. Also discuss a transfusion.

Tomorrow I have a phone consult with Dr. Javle. Not sure how I would accomplish going there, tho. In emails he sounded like he possibly had ideas.
I'm waiting for San Diego to get back with me. I'm figuring it'll be tomorrow, with my luck while I'm talking to Dr. Javle. Even tho it will be difficult, I think I am leaning more towards moving there in the near future. I think it's time to lean on family
A very sweet fellow warrior sister I met in SLC has offered rooming for me if I end up at Georgetown. So all my ducks are falling in as much as a row as they can considering I don't have a definitive answer or even much insight yet.
I'm also considering trying the fox chase trial and watching my eyesight carefully. This would at least hopefully buy me a few months to get ready to move... So many thoughts and questions!
Lainy, just to be clear: except for tiredness and breathing issues, I still don't think I look that sick. And after looking at my bloodwork, I think I can guess why I'm so blasted TIRED! RBC and hemoglobin levels are considerably low. So much that I'm surprised Dr. Denlinger didn't ask if I wanted a transfusion. I have yet to get one, but maybe it will help. Definitely part of my discussion next Tues.

Here's the news from Monday's appt... It's not good. The few small areas I had eight weeks ago have doubled in size. I have one or two new tumors on the right side of my liver. I have another new note in the midst of all the previous ones. The area by my bile duct where the stent was has come back and is over two centimeters in 8 weeks. And scariest of all is it spread to my peritoneal cavity.
As of right now there is no plan. Dr. Denlinger only had a few minutes to look at the scan and try to think about things. We spent a long time discussing options. One option is possibly trying interferon with keytruda, but that's in Georgetown Maryland. And the trials not open yet. The interferon and obtivo trial is now closed to all but 2 types of cancer of which cc is not one of them. Dr. D and I are both going to reach out to University of San Diego Medical Center to see if they possibly have any ideas. They've opened up that Research Unit to study 60 different rare diseases and I believe that cc is one of them.
We discussed the pros and cons of putting me on gemzar, oxaliplatin and 5-fu. Or gemzar cisplatin and 5-fu. I'm not looking forward to either of those choices. I told her that we already know I'm only going to get 3 or 4 Infusions before they're too toxic.
She will be having my latest brushing from April of last year tested for MSI High to see if I can get keytruda off label at Fox Chase. But thats a long shot since I haven't been on the two previous biopsies.
I have another appointment with her in two weeks. Hopefully there's some semblance of a plan put in place by then.
All in all I would say this day kind of sucks.

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.


(128 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.