Not only a Plan B, but Plans C and D, and maybe even E

Discussion Board Forums General Discussion Not only a Plan B, but Plans C and D, and maybe even E

Viewing 15 posts - 16 through 30 (of 73 total)
  • Author
    Posts
  • #86467
    iowagirl
    Member

    Duke…see you are still up tonight…..per your wee hours post to me.. Thanks for sending the link to the study….aka “Option E.” It looks really interesting and not that hard to understand….at least on a superficial level.

    I can imagine the engineer in you will be checking up on everything they’re doing once you get into the trial (I’m assuming you are going to go for the trial…right?????).

    Husband went to bed hours ago…turned down the heat…..and I’m freezing cold right now…..must get an afghan….or give it up and go to bed. Probably the latter soon enough.

    JT.

    #86466
    dukenukem
    Member

    https://clinicaltrials.gov/ct2/show/NCT01237236

    https://clinicaltrials.gov/ct2/show/study/NCT02187783?show_locs=Y#locn

    Phase 2

    This is an experiment with a study drug. I’m an engineer – you’ve got me hooked.

    Don’t look for me on YouTube dancing – ain’t gonna happen.

    Duke

    #86465
    iowagirl
    Member

    Dang it Duke…..you keep using up the letters of the alphabet. But, you can go to lower case, if you run out of upper case. Plan D and E sounds excellent. I am soooo glad to hear that new opinion of your scan compared to the last one. It does make a HUGE difference who is reading the scans…and the more experience the better. (When I was being diagnosed….the radiologists and other doctors wrung their hands….not being able to figure out what the tumor was….and even initially at Mayo, one of the two oncologists…the “Fellow” in oncology I saw first, did not draw any conclusions. The oncologist who was mentoring him, (obviously a lot more experience in oncology) said it looked to be cholangiocarcinoma. Then, the surgeon, who only operates on livers and pancreases, said, when she saw the scan, “I’ve seen this before…it’s CC.” It truly makes a difference….and experience means everything.

    What is the LEEO11 Trial?

    Happy Dance?…..Oh man…..good thing there is no video here….
    Good vibes being sent your way.

    Julie T.

    #86464
    marions
    Moderator

    Duke…long face put away – happy dance right along with you. You send me your picture – I will send mine!!!!
    Your posting is indicative of difference of opinions when it comes to specialists and a valuable lesson to us all…..continue to search for answers -.
    Hugs and a big “hurray”, dear Duke.
    Marion

    #86463
    dukenukem
    Member

    What a difference a day and a different doctor make.

    Yesterday went to my local center for FOLFOX treatment. Met with the doctor and she said the radiologist evaluated the scan from last Friday and determined that the FOLFOX was not working (larger and more numerous tumors and possible met to the spleen. She was stopping the FOLFOX treatment and sending me to the Cleveland Clinic for further treatment. She also said I could stop all treatments and just be content with being comfortable. Not something to inspire hope and confidence in a patient.

    Anyway, the onc I saw at the Cleveland Clinic is on vacation so I got an appointment today with Dr. Estfan. He and a radiologist reviewed the CT scan from last Friday and compared it with the scan from the end of November. They had a totally different read on it. There was some growth but it was less than 10% which is considered stable. His recommendation was to continue with FOLFOX for four more rounds, get another scan, and re-evaluate options. He was going to have the scans reviewed by others and then contact my Mentor onc with a recommendation to continue FOLFOX in Mentor.

    Interestingly, I got a call from my Mentor onc this morning. She had just gotten word that University Hospitals in Cleveland had approved a clinical trial for LEE011 which was opening next week. Dr. Sohal already was conducting this trial at the Cleveland Clinic since last August. It was Option E on my list.

    So put away the long faces for now and join me in a happy dance!

    Duke

    #86462
    lainy
    Participant

    I’m serious!

    #86461
    darla
    Participant

    If it includes the Dobash torte, I’m in!

    #86460
    lainy
    Participant

    ANY TIME! Come on over. You don'[t even have to bring anything, I will make it all. I am a control freak!!!

    #86459
    middlesister1
    Moderator

    Party at Lainy”s:)

    #86458
    lainy
    Participant

    I have a GYM about 20 feet from my door and a pool so you have all the comforts you want.

    #86457
    gavin
    Moderator

    No apologies ever for smilies Darla! I read somewhere that it takes more facial muscles to frown and less to smile, so…… smile! :)

    And Momma, one day I will get there and join you in eating my way through Phoenix….

    Gav vs Phoenix food! Burgers, yep, BBQ, YEP!! I soo need to get to the US!

    Hope you have gym’s there though to work off all of that eating!

    #86456
    dukenukem
    Member

    Aimee has a thing about driving over bridges, so I do most of that. Avoided an opportunity to go over the Driscoll Bridge on the Garden State Parkway. When I lived in Jersey that one scared even me. Lots of fast moving traffic and no place to hide or dodge if there was a problem Plus it was high, rose fast and seemed to drop even faster. Truckers called it “The bridge over the top of the world.”

    Duke

    #86455
    darla
    Participant

    Love It! I’m really grounded! The only real down side to being short is that every pound shows. :( Same here. Nothing much on TV and it has been nice sharing stories with you. I’m sure we have kept they others amused too. :)

    #86454
    lainy
    Participant

    Darla, I am 5’1″ and I love that saying too. Recently saw a new one with a Penguin that said ‘short is being more grounded’.
    I remember I worked for the Milwaukee School Board as a substitute secretary. I was the only one who would go into the core. It was no big deal. Anyway this cute little girl came in the office one day and she says to me, “Miss, you sure are short!” I said yes, but only on one end!
    Funny, I don’t notice myself shrinking. Teddy was 5’5″ and Robin called us the wedding cake toppers. Well, girl, I hope we are giving our family some chuckle tonight! There is nothing good on TV so thanks for spending the evening with me!

    #86453
    darla
    Participant

    I am proud of you! Never could understand how he could fly but even in a car was terrified. He enjoyed driving and did most of it, but I had to drive us through the Smokey Mountains at night while he slept. With all the traveling we did you would think he would have gotten more accustom to it, but I guess it doesn’t work that way. Interesting that we went on several cruises, one on a 5 mast schooner and being on deck looking out at the sea didn’t bother him. Go figure.
    I guess the fear of heights is a very personal, quirky fear.

    We were pretty much like your parents. We had friends and acquaintances, but it was pretty much just us against the world. Nothing else mattered and we knew that together we could handle it all. So you can imagine the shock I had having to face going it alone. Never thought I would be the one left behind. Amazingly, I am still here and doing OK. For all the others out there, you can do it. Back to one of my favorite sayings. You never know how strong you are until being strong is the only choice you have.

    On a total different note. I have always been a short person. Was 5’1″ and have now shrunk to
    4′ 11″. For all those short people out there, a saying I came across:

    God only lets thing grow until they are perfect. Some of us didn’t take as long as others! :)

Viewing 15 posts - 16 through 30 (of 73 total)
  • You must be logged in to reply to this topic.