May 10, 2015 at 2:01 am #79282dukenukemMember
I’m sure that running out of vacation is one of the best things you could hope for. Maybe your employer would support days off without pay so you can take 3 day weekends. You’ve got DC, the Virginia coast, Delaware, Shenandoah Valley, and lots more within driving or train range.
DukeMay 9, 2015 at 4:56 am #79281
Kris…..wonderful, wonderful news. It always is great to see you popping in on us. Wondering whether you can raise your leg (intermittently) and whether that would help reduce the swelling?
Wonder also what is causing it to happen in the first place?
Stay well, enjoy life (I know you do) and know that we want this thread to continue to grow year by year.
MarionMay 9, 2015 at 12:59 am #79280middlesister1Moderator
What wonderful news!!! I could do without chocolate, but salt/potato chips would be VERY difficult.
I think this board is so important since people like you and my Mom are still alive and doing great (even if legs are swollen). I think it’s been a while, but I loved your post regarding the need to have to rethink the need for money in retirement. For me it was taking lots of vacations during the year that Mom was told she had left. Now I’m almost out of vacation time and Mom is still going strong.
So happy for you!
CatherineMay 8, 2015 at 9:24 pm #79279
I started cycle 27! Yep, I said 27. That’s over 2 years of stability on this drug. We have decided Lilly doesn’t want to deal with the added work of making this a phase 2!!! They have arms A, B (I’m in , C, D, E, F. C-F have additional drugs with the treatments.
I’m kind of getting the idea I’m an enigma on this… Still stable after 2 years. I know I’m one of 2 they know if that’s on year 2. The other person is a month or so ahead of me. Many people have dropped out.
Hair is staying stable, too. As long as I keep it short, that is. When it gets longer (shoulder length) it gets really straggly.
And we have upped my Lasix again. I’m now on 60 mg a day. The left leg is almost always at least a little swollen, with really bad cankles by the end of the day. Unless I wear compression stockings! And I like sandals! Without socks, thank you! So I have to be careful about wearing non supportive sandals, etc… And the left leg almost always hurts now…
But that’s my rant. Not much to complain about! So I’ve got a bum leg! I’ve got a bum liver, too!! Trying to change my diet to a low sodium diet… Unfortunately, bagels are now off my diet!
It could be worse… They could have told me no more… (SHUDDER)… CHOCOLATE!!February 17, 2015 at 9:49 pm #79278
Thanks Marion. It was interesting reading. I just wish it could move faster!February 17, 2015 at 9:38 am #79277
Kris……the study you are participating in is a bit different than many others. This Phase I trial includes a dose-expansion for additional study participants (cohort) in spite of the fact that the maximum-tolerated dose (MTD) has been established. The cohort (additional study participants) will aid in the understanding of how much of this drug is too much and perhaps show that it works at lower doses as well.
Cetuximab (Erbitux) is a medication that interferes with one of several pathway leading to cancer growth called’ the MET pathway. I like to think of different highways leading to a particular City; I call it the City of Cancer.
The MET highway is pronounced in carcinomas. Carcinomas develop in the epithelial tissue. Interestingly enough, our skin is epithelial tissue. This type of skin covers all organs inside the body as well. And, not only does it cover the organs of the digestive system, but it also lines the chest and abdominal cavities.
Your study includes patients with different types of cancers i.e. adenocarcinoma of the colon or rectum, head and neck squamous cell carcinoma, uveal melanoma with liver metastasis, and cholangiocarcinoma.
An additional part of the study has been added in November of last year. Researchers are trying to identify the dosage of Erbitux while combining it with Cisplatin for Cholangiocarcinoma patients. Yes, it appears a long study, but results should be in by next month. Please make sure to stand your ground: you are entitled to know the study results.
Here is the link to your study: https://www.clinicaltrials.gov/ct2/show/NCT01285037?term=LY2801653&rank=1
MarionFebruary 16, 2015 at 9:39 pm #79276
Thanks for the update! Happy to hear cycle 24 and you are still going strong…..keep it up!
MelindaFebruary 12, 2015 at 4:17 am #79275
Here’s the skinny on this trial. I thought it had gone to phase 2, but was told yesterday that there are a number of “arms” to the phase 1 trial. It has been phase 1 since something like 2008????
The one arm, which I’m on, is solely the LY drug. The arm with LY and Cisplatin is closed. They have another arm with gem/cis and I think another arm opening up. I don’t understand why it’s taking so long to get to phase 2?
Personally, I’m on cycle 24 and going along as expected. Still full of water weight but it beats the alternative!January 9, 2015 at 5:05 am #79274
Kris…..absolutely, fantastic, overwhelmingly joyful news. This is what we hope and wish for with clinical trials.
MarionDecember 26, 2014 at 6:29 pm #79273iowagirlMember
Kris….fantastic news and just in time for the holidays and starting another new year. I agree….since retiring and selling my cake decorating business a year ago, I can’t imagine how I juggled everything either. Keep on with the great news. I’m so thrilled for you to hear that great news. Julie T.December 26, 2014 at 6:12 am #79272
Kris….that is great news! 19 months on one drug is amazing and STABLE is even better! Keep up the good work! I don’t know how I used to work full time….there is not enough time in the day for everything!!
MelindaDecember 20, 2014 at 2:31 am #79205
Cycle 22 started on Tuesday… That’s 19 months on this drug! And I have edema and a pimply reaction. All in all, not bad.
Stable is still the word of the month. And normal ranges for CA19-9 and bili. Still a bit off on the albumins and esonophils but I’m not too concerned.
Just wanted to post an update! Sorry I don’t stop in often but with organizing the apt. and working (how do people work FULL TIME???) I just don’t seem to have spare time anymore! I’ve even cut down on poker and karaoke!July 17, 2014 at 2:43 am #79271darlaParticipant
Great news Kris. Enjoy your time off, your trip and your family. You deserve this break.
DarlaJuly 17, 2014 at 2:35 am #79270
Awesome news Kris! You deserve it….have an amazing time!July 16, 2014 at 12:43 pm #79269iowagirlMember
Whoohoo Kris…..go get ’em! Congratulations on the break and enjoy, enjoy, enjoy!!!!
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