CT scan Monday April 4
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Kris….at least you are experiencing some positive out of the negative stent placement experience. Hurts to just read about it!!!!!! Although physicians don’t recommend it, my husband refused to go through 2nd stent procedure unless he was given sedation. And, so they did.
Hang in there, we are rooting for you.
Hugs
MarionKris,
I hate when posts make me mad and this one does- so sorry it didn’t go smoothly and that from here on you start feeling better and find the next treatment that will let you get back to “normal” life.
Best wishes,
CatherineKris, I just have no words right now except to say, like I told Teddy, I don’t like you in yellow. Pick another color to wear. Kris, I know you can do this, you are a strong lady. Everything has a way of working out and I do like the sound of Keytruda. It does have a little melodic name and I also know you love music! Sending you the best ever in juju, spirits and prayers. I have something to tell you. Guess who is in a relationship? Yep, me. Thought that might make you smile. Kris, I think of you every day and so wish we could get together again!
Kris, I’m sorry you are so uncomfortable. Hopefully the symptoms will clear up quickly now that the new stent is in place.
DebbieWell, I went in last Tuesday itching like crazy, with really dark urine. Scheduled an ERCP for wed. Discussed my blood work. Bilirubin over 4, ca19-9 up to 410. Yep. New lesion on my liver, again in a bad spot. Not easy to get to.
So I went in wed. for ERCP. Not very happy about it, but what choice do I have? Of course, I woke up while they were pulling the tube out. Try telling someone in that position to “calm down! We need to get this out! Quit fighting!” Like that’s making any sense to me at the time.
They placed a plastic stent and I know exactly WHERE!! I had a very specific 2″ area on my back that was a 10 on a scale of 1-10 pain wise. I’m not looking forward to doing this every 3 months. I know people do it, but it hasn’t been fun.
Itching is still pretty bad. Urine is still dark, but better. Eyes are back to non yellowish. It’s been 5 days…
There is a very specific trial geared for fgfr2 fusion genes, and I want to look into it, but right now my bili wouldn’t let me into it anyway. It has to be 1 or lower. So I’m waiting to feel better. If I don’t feel better soon, I’m calling my onc to see about Keytruda or something else.Kris…..I forgot about the restrictive diet; no nuts, dairy, chocolate, potatoes and wheat. Guess we just have to await tomorrow’s outcome. You are due some extra good news, Kris.
Tons of hugs,
MarionThanks everyone.
Marion, I know Matt is having good results on Keytruda, and after the first 1 or 2 treatments he got compassionate funding. I’ve been following him. There is also the BJG398(?) trial that Patty and a couple other people are on, but the diet is SO restrictive!
I’m hoping the radiation works for a while, but with these symptoms I fear it either spread and is finally compromising bile ducts. Or radiation did some damage. I guess I find out tomorrow.
Either way, the big girl panties slip sometimes but they are back on. I know this stress over my mom and dad doesn’t help either.Hi Kris,
You got it. Tons and tons of positive thoughts are coming your way for the test results tomorrow and of course will be keeping everything crossed as well. Wish I knew what to say to you right now but you so deserve a break, a huge break in fact what with everything that you are and have been going through with everything.
Big hug coming your way,
Gavin
Chris,
I’m praying for the best possible results from your scan, and for the most effective treatment to be identified and available for you.
Kris…. In addition to searching out a clinical trial, Keytruda (Pembrolizumab and Opdivo ( Nivolumab) molecular antibodies, different dose scheduling, but basically the same, can be prescribed off label. These Immonotherapy molecular inhibitors are investigated for cancers other than small cell lung, ovarian and melanoma, hence no one has answers in regards to efficacy for other cancers, but I believe it’s worth discussing with your physician(s).
Keytruda: Physicians can request Expanded Access (Compassionate Use)
THE MERCK CO-PAY ASSISTANCE PROGRAM
https://www.merckaccessprogram-keytruda.com/hcc/Opdivo:
Bristol-Mayer-Scibbs Patient Assistance Program
http://www.bms.com/products/patient-assistance/pages/opdivo-uninsured.aspxHugs,
MarionHi Cookie, give me a call. Let me know if you don’t have my number. For the itching there is an OTC Cream that worked fantastic for Teddy. it is called Sarna. I am wishing the best for you and PLEASE let us know as soon as you do. Kris, we are all here for you! Love you!
Kris, I can hear the loneliness and fear/desperation in your words and I am so sad for you to have to be alone through this latest CC adventure. Adventure makes it sound fun….which it certainly isn’t, I know. It’s time to take a deep breath and just push on through, as hard as I know that is. You’ve gotten new sequencing done and there’s the hope of future in a possible clinical trial. Even if your mom is no longer here, you can still talk with her. Y ou absolutely have my prayers for your scans and finding a new treatment plan. I think of you often. Hugs!
Julie T.
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