April 13, 2017 at 2:23 am #94210
Kris…has an external stent been mentioned?
Good luck with the transfusion. I expect you to immediately feel better.
Thinking of you and sending tons of hugs your way,
MarionApril 13, 2017 at 1:48 am #94209
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.April 11, 2017 at 7:03 pm #94208
Lol Lainey. But with no seafood or cabbage(?)????April 11, 2017 at 4:03 am #94207lainySpectator
Dear Kris, you are the little engine that could and you will climb that hill and I am wishing for everything to turn out good. I sure don’t know how you keep track of it all! Hang in and hang on. Sure wish you loved closer so I could help. At least pick up some egg rolls!!! lolApril 11, 2017 at 3:57 am #94206
Kris….tons of information to sort through, but as always you are on your toes. Don’t think they need to use your periotoneal fluid for the liquid biopsy. Tumors shed in into the blood stream, hence a blood test should do.
Sorry to hear of the upcoming stent exchange. Sure wish there was an easier way to drain bilirubin.
Hang in there, dear Kris, as I know you will.
Fingers and toes crossed for a clearer treatment picture to emerge.
MarionApril 11, 2017 at 2:34 am #94205
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.April 6, 2017 at 8:38 pm #94198
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.April 5, 2017 at 1:58 pm #94195grsharpMember
Kris, my wife took Keytruda and it was paid for by Medicare. She was not in a clinical trial. However, it did no seem to help her. CA19-9 went from 500 to 6300 during the 6 months she was on it.
How do you arrange a phone consult with Dr Javle?
Wishing You Well,
BenApril 3, 2017 at 1:12 am #94204lainySpectator
Kris, sounds like you are getting your ducks in a row and yes , you look great! I am anxiously awaiting good news!!!! Sending much love and hugs!April 2, 2017 at 9:43 pm #94203
Kris….the blood transfusion worked like a charm for my sister in-law. Different cancer. She immediately regained her energy.
Consulting with Dr. Javle doesn’t necessarily mean treatment at MD Anderson. As you know, some of this can be handled at a different location and oncologist.
I know that your next step of action will evolve. Given your history, you are the living proof that searching and connecting with the right team of physician(s) continues to offer answers otherwise not found.
Thinking of you and sending a tidal wave of hugs your way
MarionApril 2, 2017 at 4:58 pm #94202darlaSpectator
Kris, I was so surprised to hear this after you had been doing so well that I was at a loss for words. Still am, but want you to know I too am thinking of you and hoping you will get some answers and a plan to move forward with. It sounds like right now everything is up in the air and you aren’t sure which way to go on all of this. Hopefully after talking to Dr. Javle and a few others you will be able to begin to sort it all out and get a plan of attack in place. Take care and make sure to update us all when you can.
Love & Hugs,
DarlaApril 2, 2017 at 4:39 pm #94201
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.April 1, 2017 at 5:54 pm #94200gavinModerator
Real sorry to hear this latest news from you on everything. I am keeping my fingers crossed for you and hoping that there is def a plan in place to deal with all of this ASAP! Loads of positive thoughts and huge hugs as well coming your way from me.
GavinApril 1, 2017 at 10:32 am #94199middlesister1Moderator
I agree it sucks.. So sorry that you will have to add more to the wealth of knowledge you’ve already shared with the board over the years.
Love and hugs coming your way,
CatherineMarch 31, 2017 at 9:31 pm #94197FaySpectator
Fed Hutch in Seattle is heavily involved in cancer reasearch. My mom lives in Canada but I took her across the boarder for a second opinion to see Dr. William Harris at Seattle cancer care alliance. He was excellent. If you do decide to consult there, you can stay at my place. I live five minutes away from SCCA and work in the ER so am not home very often.
Stay strong and think positive. Today may suck but tomorrow is a new day. A much better day.
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