kris00j
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The blood infection is no longer growing in the cultures. So that’s one thing down. Unfortunately the cough is getting more productive. I now have a pleural effusion. Again. We’re gonna work on that then deal with the liver. The attending doc stops by every day. Today I asked him if it would be a drain or a needle aspiration. He looked at me and then called me Dr. Jacobson. lol
He’s not a radiologist so he can’t answer. That’s for a radiologist to decide after I get this cough under control.
I feel fine, and wish I could go home, but I understand the need to keep me here to heal. I had a couple of visitors today. I now have 3 caps and a scarf to cover the hospital hair!The infection is called seraschia (spelling is probably wrong. I did phonetically)
The team was just here, and I’m not too happy about part of what the attending said. There’s an area in the liver he’s unsure about, but he thinks it’s an abscess. He mentioned a drain. That concerns me. I’m hoping we can come up with a different decision.
I’m on the antibiotic to fight that specific blood infection. I can’t take levaquin on the trial. There’s a list of Nono drugs. Everyone worked very hard to come up with a plan to keep me on the trial.I started this trial yesterday. 3 pills every day, so another no infusion trial! I can get used to this! I just hope it works as well as the docs hope.
My bili is down to 1.4 so it’s getting better since the stent placement earlier this month.
Strange things I can’t have tho… I’ve been on omeprazole for 5 years because of the infusion pump. I can’t take it. I’m trying to switch to some other “–azole” drug. And no melatonin, so I can’t take the natural sleep aid. Of course I just stocked up on both of them for the next few months. Ugh! And I have to pay attention to oxycodone. It might have extra effects on me. All drugs I’ve taken for so long!
Also, no caffeine, brussel sprouts, cauliflower, cumin, grapefruit juice, and BROCCOLI! I LOVE broccoli! And it’s so good for you! I wish I had known… I would have had it for dinner on wed.
But if this trial works as well as we hope, it’s a small price to pay. And after a couple of months I might be able to have broccoli in small quantities.Hi Ashley. I’m trying to get into this trial, too, so hopefully there will be 2 of us posting about it. Unfortunately my bilirubin is too high this week. I’m hoping it drops more now that the stent has been in place for 10 days.
I’ll be getting new blood work Thursday and am hoping things are better by then.Well, 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.Thanks 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.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 isMERESTINIB
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.
Lainy, I can only do the Statue of Liberty if I can be holding a really big egg roll! lol
Debbie, you sometimes just gotta be wacky to keep from breaking things! And Lainy helps us stay wacky.Julie,
For my own comfort I would still want regular appts., at least for the usual 3 years or whatever it is.
But great news if they all concur!! Maybe you really DO get the brass ring on this merry go round. Wouldn’t that be great?Oh how I wish it was jello! That at least would be soft! lol
Actually they lay you on this surface. Inflate sides, etc. to “fit” your body. And it either stays filled or hardens. Can’t remember. But my last one had a seam around my shoulder blade. Very bothersome!Tomorrow afternoon is the simulation for radiation. Boy, I can’t wait to get to lay in the mold they make just for me!! (Can you hear the sarcasm?) I just want to hear in about two weeks that SBRT is a go! I certainly don’t want 5 or 6 weeks of that crap!
OH!OH!OH! I forgot! I get MORE tattoos!! At least 3 or 4!!!! Yay!
Lainy, you certainly do like to be different! I hope you have the pirate eyepatch bought? And just get the pirate hat to cover your head! Just make sure it’s soft so it doesn’t hurt.
Seriously, good luck with the surgery. It really does help to trust the doc. I know Teddy is watching from above, but I sure hope he doesn’t send those lights blinking and scare your health team. Please, Teddy, wait until they are done. THEN blink those lights!It’s been a long day. I found out there were THREE lymph nodes, but that’s not that important. My onc and my radiologist both suggest radiation. The radiologist wants to do SBRT again, which bought me 9 or so months of no treatment a few years ago. His only concern is the nodes are close to my colon. If the colon gets SBRT radiation, it could be very bad for me! If he doesn’t feel comfortable with the calculations, he wants to do 5-6 weeks of daily lower dose radiation. All I could think of was “there goes my new job!”
After radiation, we watch and wait. Meantime, dr. D has sent the biopsy to foundation one for genomic testing. And has put my name on the list for nivolumab (opdivo) which is the Bristol Meyers squib version of keytruda. If all goes according to plan (boy, I hate that thought!!) I will hopefully be accepted before the radiation has quit. Only problem with all this is I get to be a patient again. She wants to pair it with another drug that will make me feel like I have the flu.
Still, it’s better than the alternative!!Maribel,
I was diagnosed in 2011 with unresectable cc. The tumor had wrapped itself around my vena cava and 2 of my 3 hepatic arteries were involved. Gem/Ox and FUDR shrank the tumor considerably, but due to other complications, I was never able to have surgery. I had to quit chemo for a while and cc spread so no surgery. I did sbrt radiation which worked fairly well for about 7 months, then was accepted into a trial. That drug worked for 2-1/2 years. Unfortunately the cancer had spread again so I am waiting until Tuesday to see if my onc and radiologist have any brilliant ideas. They are brilliant, so I’m sure hoping they figure something out. I have had one of the new areas biopsied for mutations, so hope to get that into the decision making quickly.
I’m sorry this is so long, but I wanted you to know that although surgery is the best option for all of us, some of us do get some good results with drugs and radiation.
By the way, I was a courier part time until last month… I just started working at Sam’s Club part time (although this may prove too much), I play local poker games and sing karaoke. Oh, yeah, I’m single….. So I don’t have a partner to worry about or to worry about me (good and bad points). But I’m pretty healthy, although I require more sleep than I used to.Tiah, I was on similar… Gem/Ox with FUDR which is a little stronger than 5fu.
Good luck to both. I hope surgery becomes an option!
Sherri,
Thanks for that info. I know Oxaliplatin is too toxic for me, so maybe that is an option.
My ca19-9 is still at 40, so it hasn’t gone up. My bilirubin is also only .6. None of my blood work levels have changed much. So I’m not sure why it’s growing and spreading, but it is… Hopefully I find something soon!
