May 21, 2014 at 3:16 am #79253scheitrumcParticipant
So happy for you. I hope you have continued success with the trial.
CarlMay 20, 2014 at 11:17 pm #79252
Yeah, Kris!May 20, 2014 at 7:34 pm #79251marionsModerator
Kris…so happy to hear that the edema is controlled. Congrats on completion of the 14th cycle. You are superwoman.
MarionMay 20, 2014 at 5:40 pm #79250gavinModerator
Great stuff Kris! Hope that cycle 15 goes well and looking forward to hearing about these idea’s in the works!May 20, 2014 at 3:41 pm #79249lainyParticipant
Kris, Congrats but honestly wish I could see you on your Harley Cycle instead of these cycles! Thinking of you all the time, miss my Cookie!May 20, 2014 at 3:35 pm #79248
Cycle 14 is complete! Still have adema, but it’s ok. Met with Dr. Denlinger about results of genomic testing, and she has a couple of ideas in the works. I have some homework to do!
Meanwhile, on to cycle 15!
Will post genomic stuff in the other thread.
By the way, CA19-9 is 39.8. Still higher than normal, but low for most of this fight.April 23, 2014 at 5:10 pm #79247
Thank you Julie. Hearing that helps keep my spirits up.
Carl, I got to cru shortly after you left. I did hear Lynn is able to stay in the trial. I’m hoping the reduced dosage works for her (fingers crossed!), I will be waiting to hear what happens in 6 weeks! I guess it will be a couple of months before we cross paths again… 12 weeks, to be exact!
I did discuss the CD45 study and the new one in Thailand with Dr. Denlinger. She said the Thailand one sounds much like one at Fox Chase. So there ARE options out there! With more options monthly!!April 23, 2014 at 12:10 am #79246iowagirlMember
Kris, Congratulations on the year milestone. I hope that the increase in Lasix will help the edema in your left leg. You are one of my inspirations on this website…..and I’m so glad to have met you at least on line. You’ve helped me in more ways than you could ever know.
Julie T.April 22, 2014 at 8:34 pm #79245scheitrumcParticipant
Congratulations on your one year success with this trial drug. I hope you find continued success and that you can keep the side effects under control.
It turns out we did not have to stay after taking the pill today. Blood work with the pill and then we could leave. Sorry we missed you.
We will continue on the trial for at least 2 more cycles – for Lynn, that means 6 weeks as each cycle for her part of the trial (part D) is only three weeks v. four weeks for the original part you are on. We are actually glad we will only have to wait 6 weeks for a new scan to assess whether the pill is working for Lynn. Since she had the allergic reaction to cisplatin, she is no longer doing chemo (the purpose of this part D). She is able to stay on the trial with just the pill, but it’s at a lower dosage and the sponsor won’t change the dose fort part D patients. So while the scan today showed ‘stable’ results, we have not gone a complete cycle with only using the pill. We have learned twice now that Lynn’s cancer is very aggressive and grows rapidly without treatment. Dr Denlinger will not wait long to get Lynn off the trial if this lower dosage is proving ineffective.
In addition to the good news of a stable CT scan, the fact that Lynn will be off chemo for 6 weeks is quite nice. It will be the longest time period of no chemo since we began this journey a year ago.
Take care. We will see you soon.
CarlApril 22, 2014 at 6:49 pm #79244
So… 12 cycles down. It’s been a year! Where DID the time go?
CA 19-9 is up to 40 again
But other blood work looks good. Unfortunately, we are doubling the Lasix because the left foot is SWOLLEN.
I saw Lynn and Carl today, although it was just in passing. I wanted to get to Dr. D and they were on their way back to cru. By the time I got to cru, they were gone.March 30, 2014 at 5:25 am #79243mcwgoatParticipant
Thank you everyone for your prayers, kind words and warm wishes. They mean a lot to me. I’m getting stronger every day and that is making me happy. I have chemo – gemcitabine and irinotecan – this Friday and that scares the heck out of me. My quality of life has changed but it is still worthwhile to try and continue to live. The irinotecan is what gives me the extreme fatigue. Doctor gave me Ritalin for that and I’m hoping it will help.
I always keep everyone here in my prayers and will continue to do so, including our caregivers, who give up so much of their life to be with us.
Thank you moderators. Without you we wouldn’t get the info we need from this web site. You work tirelessly for us and we all so appreciate it.
Stay well Percy and continue the good fight!
Love, Peace & Hugs,
MaryMarch 29, 2014 at 1:14 pm #79242
Please repost your introduction under new topic, introductions. More people will be able to see it and give advice. Sorry to hear of your husbands situation. Like Marion said, the molecular testing gives information that can sometimes guide treatment though it’s relatively new and many drugs are still in the experimental testing stages. Best to you.. Lots of support here.
WillowMarch 29, 2014 at 1:08 pm #79241
Mary and Percy,
You are both in my heart and on my mind… Sending love and comfort.
WillowMarch 29, 2014 at 11:15 am #79240marionsModerator
Jan…..correct. Providing drugs are available, molecular testing of tissue or blood may allow for a more personalized treatments. It replaces the one size fits all approach and moves science into the “personalized” treatments for each individual. Some institutions perform this test automatically; others may not.
MarionMarch 29, 2014 at 10:21 am #79239jan1etMember
My husband was diagnose with cc seven weeks ago, had surgury were they were not able to get all the cancer. So, no radiation for him and he wont go on chemo again. This is his third cancer. He has the defective gene so dr at Tgen have asked for sample to see if he will wualify to see if there is a medication to stop the growth. Is this the genomic testing that Kris has been mentioning? Its all new to us. Any one have any luck with this?
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