kris00j
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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.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.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!
lolI 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’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.
KrisI’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.
