kris00j
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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!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!I guess I should update this.
Started April 2011 at Memorial Sloane Kettering. Dr. Kemeny was my onc and Dr. Fong was my surgeon.
Surgery was cancelled completely.
In 2012 I went to Fox Chase for SBRT radiation with Dr. Meyer.
In March 2013 I transferred my care to Fox Chase with Dr. Denlinger and began the trial I am currently on.
I never was comfortable with Dr. Kemeny. I am much happier with Dr. Denlinger.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.Christine, I answered your email.
As to who is “right”, it’s more of who you feel more comfortable with. Who you think has your best interests at heart.
I was not on this trial, although I have the pump. I wonder if I should check on this trial as a possibility IF the trial I’m on stops working.I hope you get some energy back. I had already lost 2 hepatic arteries when they did the portal vein embolization… We thought I could finally have surgery! Well, they nicked my lung and gave me a pleural effusion instead, so my breathing and energy were nill.
I will say that after the effusion was better, I didn’t notice any drop in energy.
Although they downplayed the difficulty, it can be tricky. Give yourself some time… The body has to adjust to the changes in blood flow, along with the necrosis of part of your liver.
If you are concerned, ask your onc. They are there for you, after all. Maybe his or her assistant can help if you can reach them.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!!Thank you so much for the news! It sounds so promising! I have talked to my onc about this drug and she knows I am veryveryvery interested!
Me, too, Duke!! I was devastated when my surgery was cancelled. But have learned I CAN and WILL live with this bast#rd!
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!
Sandie, have a wonderful trip. Fill it with amazing memories and come back ready to fight again! I wish you all the best!!
The nurse did put in the clot breaking med. And we still had a bit of a problem. But Tuesday was better. Not the best, but much better!
As far as the ct scan… No measurable difference. So, the word is stable!! lolCycle 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!
