April 3, 2016 at 9:50 pm #79297
One last post from me about this trial… Firstly, I miss being stable! I miss my fat ankles! I feel that was a nice trade off for stability.
Ok, the reason for the post. The drug has now been named. It is
Good luck to anyone getting into any of the arms of the trial. It’s obviously working well enough to be continuing, as it now has a name.December 21, 2015 at 5:12 am #79296
I am so sorry to hear this news, but agree with you about this being a success. Two and a half years is nothing to scoff at. You keep those big girl panties pulled up and stay positive, there is more to come for treatment and new breakthroughs everyday!! Thinking of you and sending lots of hugs your way!
MelinaDecember 16, 2015 at 4:54 pm #79295
All in all, I consider my time on this trial a success. It bought me 2-1/2 years of pretty darned good health. That’s 2-1/2 years of research breakthroughs too. I think I was the longest lasting on this drug.
I’ve almost forgotten how to be a cancer patient, but I’m sure I’ll remember pretty quick. I already got the gut punch… Now for the testing and waiting… Then a plan. And there’s so many new options that weren’t out there 2-1/2 years, let alone 5 years ago.
I do have to say I’m looking forward to getting my ankles back! And losing the puffy eye look!December 16, 2015 at 4:09 am #79294marionsModerator
Oh, Kris. It confirms again that this cancer resembles that of a chronic disease. The good news is that this time -unlike 2011 – when first diagnosed, many more treatment options are available to you. Let’s await the outcome of the molecular testing. Although I am disappointed, I am very hopeful for you as well. Hang in there, dear Kris. The power of positive thinking is heading your way.
MarionDecember 16, 2015 at 4:07 am #79293darlaParticipant
I replied to this on Facebook, but wanted to add here that I’m truly sorry you are going through this and that my thoughts and prayers are with you.
Love & Hugs,
DarlaDecember 16, 2015 at 3:41 am #79292lainyMember
Oh, Kris, honestly I was thinking about you a couple of days ago as my 3 amigos from Milwaukee (Stan, Neil and Jeanne whose lake house we were at) came in for their 21st Thanksgiving with me. Stan asked me if I had heard from you as he sent you a couple of emails and never heard back. I felt you must be doing great and wanted a break from here. I am so sorry about your latest post. I am sending prayers and good vibes and great JUJU your way in hopes you can try the Keytruda. Please, Cookie, keep us posted. Love You!December 16, 2015 at 3:02 am #79291
We knew this day would probably come, but it’s still a shock. I am no longer in the clinical trial.
Disease progression to two new lymph nodes. Possible progression elsewhere, but ct scan is not definitive. The plan is to get a biopsy of the new area to see what kind of mutations have occurred. This is #3. Also to get a pet scan to see whether the little lights are cancerous or not. Hopefully they can figure that out. If the little lights are from the cold I’m dealing with or something else, then I have the option of radiation again. It takes 4-6 weeks to get the genomic testing done. If radiation is not an option, I’m praying the mutations would still allow me to try to get on keytruda. If not, we look elsewhere. Either a trial, or (and I said this would be my last choice) gem/Ox with 5fu. Oxaliplatin kicked my butt the last time so we know I can only get about 3 rounds before I have to stop.
That’s it. As you can guess, I’m pretty much a mess, but determined to put my big girl panties on again. Time to become a cancer patient again. Ugh!September 5, 2015 at 2:50 am #79290
Hang in there and get that unruly little lymph node back in check!! Scanxiety….no escape! You got this, sending hugs and prayers your way!
MelindaSeptember 5, 2015 at 1:29 am #79289lainyMember
Hey, Cookie, it is so good to see your smiling face!!! Glad you had such a good summer and I have do doubt you will master that pest before too long! You are a much welcomed visitor from Christmas past!! Keep on keeping on.September 5, 2015 at 12:44 am #79288
Hi everyone. Long time no update. I was having so much fun being “normal” this summer! But, like the summer passes, so does feeling “normal”. My latest scan shows a slight increase in the targeted lymph node. It’s slight, but it’s an increase. So it’s back to being a patient! I’m now on cycle 31! Yep, I said 31!! And I’m hoping the node stops growing so I can stay on the trial. Now I get to deal with scanxiety again.
All in all, I’m still doing good. Except for that nasty lymph node.May 16, 2015 at 1:23 am #79287
Awesome news!!! Stable is so good! Thank you so much for contributing to this research and being involved in this trial so we can have more options for our futures! Keep up the good work.
I still have swelling in my feet as well…..I think it is due to the neuropathy from all the chemo. I love my sandals as well but by the end of the day I have sausages for toes!!
Hugs to you,
MelindaMay 10, 2015 at 6:17 pm #79286gavinModerator
Great news Kris!!! And glad to hear that they did not say no to having to give up chocolate!!!
Hope that the Lasix works with the swelling, grr to swelling!
GavinMay 10, 2015 at 3:50 pm #79285iowagirlMember
Catherine….sometimes, I think that the “Quality time” on the deck is the best time.May 10, 2015 at 2:13 pm #79284dukenukemMember
Is it too early for whale watching off the Cape? That’s one thing Aimee and I try to do whenever we are on a coast.
DukeMay 10, 2015 at 11:16 am #79283middlesister1Moderator
Agree- it’s a “hardship” that we are so lucky to have and we are in a great location for the short getaways . If needed, I could do LWOP, but when traveling, the money seems to disappear as well as the vacation time: ) Next trip is a full week in Cape Cod; then we stay put and let the bank account and vacation time build back up. The folks live 3 miles from us so we can have the quality time here on the deck as well.
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