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.

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(8 replies, posted in Members' Cafe)

Hi Chickie! I'm SSSOOOOO happy you have found some more happiness! And comfort in the belief that Teddy "made you do it!" lol

I don't think I posted this. Shortly after my mom passed on Christmas, a dear friend of mine gave me an angel bracelet. I immediately put it on, and thanked her. It wasn't 5 minutes later that one of the Angels caught on my sweater. I unhooked it. It immediately caught on my sweater. I looked at it, and it looks so much like our family engraved Christmas ornaments. We have angels for the girls and snowmen, etc. for the guys. I knew immediately it was my mom saying hi. I wear the bracelet almost every day, and she gets caught on everything! Even t-shirt material! I figure it's her way of letting me know she's still watching over me.

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(15 replies, posted in General Discussion)

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.

It seems 4/5 of the last spring times have brought bad news for me.
Today I go for an ERCP and stent placement. Can you believe I'm into my 6th year with no stent? Well, that's over.
My bili is over 4, my CA19-9 has jumped to 410, and all the associated liver function numbers are screwed up. I had an ultrasound yesterday. She couldn't find a blockage, so it's going to be a seek and find during the ERCP I guess. There is ductal dilation, so they have an idea where to look. I just want this itching to end! And my urine to be yellow again!
Then we look at a new trial in Philly.

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(15 replies, posted in General Discussion)

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.

Hi all.
I know I don't keep in touch very well lately, but I've been licking my wounds for the past few months.
As many of you know, I had to leave the inhibitor trial I was on after more than 2-1/2 years because of progression. We decided to try radiation on the newer nodes because of where they were and the fact that they couldn't get a core biopsy, just a small needle biopsy. And core biopsies are needed to get into many trials.
Well, since we had progression while on treatment, my biopsy was sent to Foundation One. And as guessed, it mutated again. This time to FGFR2-TACC2 fusion. So looking at the trial options.
Meanwhile, I went through general radiation. Dr. Meyer wasn't comfortable with SBRT again.

Tomorrow I have a ct scan scheduled to check for progression. Still a little too early to know how well radiation worked.
My problem is that for the first time I have those symptoms everyone else discusses. ITCHING! ITCHING! From head to toes! And my urine is getting dark. My tests are tomorrow, and this pretty much started Wed. So nothing much timing wise would have changed. For the first time in almost 3 years, I'm back to being stressed out about a scan. My bile ducts have never really been affected, and I fear that has changed.

And I don't have my mom to call anymore. During all my tests in Dec. they put her on hospice and she passed Christmas Day. And then Dad had a stroke in Jan which was very scary. He's doing much better, but not 100%. I don't know that he ever will be. They say the vocal chord paralysis might still come back. He can speak, but it is hard to understand over the phone.

Sorry. This started as a please pray for good results. I get them Tues. and I can use all the help I can get.

Thanks,

KrisJ

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


MERESTINIB

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.

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(4 replies, posted in General Discussion)

I missed a phone call. When I listened to the msg it was my radiologist.... Never a good sign. I sat down, took a few deep breaths and returned his call. He says SBRT is not an option. Between the colon and the duodenum there's too much risk. Plus, there's a couple very small almost not noticed lymph nodes that lit up in the scan also. So now the plan is lower dose broader beam radiation which will cover the entire area but hopefully not harm my good organs too much. Only good news? Originally he had said 5 weeks. Now he says 3. I just pray it works!

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(27 replies, posted in Members' Cafe)

Dad has pneumonia. They are waiting for a hospital room for him. They will put him on antibiotics and hopefully get him back to the rehab center quickly. One good thing... May be what caused it, might be a result, but he spoke! In a very raspy voice, but it was speech! We hope this continues.

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(27 replies, posted in Members' Cafe)

Well, dad was doing so much better.
Now he's in the ER after vomiting and having a very low oxygen level. The scariest part? My dad does NOT VOMIT. EVER. EVER. They have his O2 level back up and are doing a ct scan. Hopefully they find out why he vomited. Hopefully it's because his vocal chords are paralyzed and they allowed him to vomit. He has no gag reflex. I don't remember him ever vomiting in my 52 years on this earth. And believe me, I've seen him drunk enough for most people to!!
Meanwhile, I'm in limbo for another week. I just put in a request to meet with a social worker wed before my appt with dr. Meyer about radiation choices....

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(27 replies, posted in Members' Cafe)

More good news today. They moved my dad to a progressive rehab center. He has regained a good portion of his right side, etc. but still can't hold a pen or pencil. And he still can't talk. They put in a feeding tube because his vocal chords are paralyzed open and there is damage to his throat so he can't pass the swallow test yet.
All professionals say the vocal chords should come back in a month or so. If not, the ENT guy is going to try something to get them moving.
I wish I could be there for him, but I know he understands I have my own fight right now. So we both fight on other ends of the country.

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(16 replies, posted in General Discussion)

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?

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(16 replies, posted in General Discussion)

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!

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(16 replies, posted in General Discussion)

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!

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(25 replies, posted in General Discussion)

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!

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(16 replies, posted in General Discussion)

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!!

Well, tomorrow is the big day. In a little over 12 hours I find out the results of the pet scan. I meet with my onc first and discuss options, choices, suggestions, etc. with her. Then I meet with my radiologist about the same stuff. I wish I could do the meetings together. It would make it so much easier.
After the month I've had, I'm BOUND to have some good news, right??
I haven't really had to be nervous for 2 years, since the trial drug was keeping things in check. Now it's time for fighting, nerves, questions, what ifs??
I'm hoping keytruda is an option. That and/or radiation.
So keep me in your thoughts tomorrow, and send some positive vibes my way if you can. I'd appreciate it.

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(27 replies, posted in Members' Cafe)

My dad is walking with the walker and an aid!! If you had said I would be saying this today after I left Sat. morning I would have smacked you!
He's sitting up, using BOTH arms, and able to walk. And he was in ICU until Sat. Night.
One thing still...he can't pass the swallow test or talk well. They think a vocal chord may be paralyzed, but they say it often comes back. As for the swallow test... He can do apple sauce, ice cream, and ice but his throat will not react quickly enough to water. It goes straight down the wrong pipe.
I so wish I could still be there for him, but tomorrow is my big day.
I get the results of my pet scan and hear about suggestions and options from both my onc and my radiologist.

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!

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(27 replies, posted in Members' Cafe)

I travelled down to Alabama to be with my dad and brothers. My moms wishes are for us to spread her ashes on a sunny lake or lovely stream in North Dakota. The plan was to do it in June or so.
I was supposed to return home on Tues Jan 5. We woke up to find my dad had a stroke. He was in FICU until last night. He has gotten so much better in 5 days. But he is still unable to swallow water, and his speech, when there, is slurred and hard to understand. I believe his tongue was partially paralyzed. His right side was not moving at all, but he has regained movement. Still can't make a fist, but he's getting better every day.
I had to return yesterday to prep for my own dr. appt. on Tuesday. I was unable to stay to see him out of ICU, but my brother kindly sent a pic of my dad sitting up.
I made my dad promise to worry about himself and not worry about me. I said I would worry about me. He actually said promise to me. I know he will worry, but he has to focus on getting better.
My biggest problem with this, for lack of a better word, is that my dad hasn't been able to grieve for my mom. It was only 10 days. We had finally seen the old "dad" on Monday night. He was laughing and talking about him and Laurie (my mom) with fondness, not just lost sadness.
I don't know how long or hard his journey is going to be, but I know it's going to be months. As I sat alone with him Tues. I actually thought he wanted to go. He kept looking above me and mouthing mom. I told him he had made me strong, and told me to keep fighting. I wanted him to keep fighting, but I also understood if he was talking to mom. I said I wanted him to be happy more than anything. With that, he gave me a clear stare, I saw his eyes soften, and he went to sleep. I was terrified he had picked the "happy." But he ended up picking the fight.
I know this is long, but I had to get it off my chest. As I write this I am crying like a baby for my dads lost love of 57 years, and the fight he chose in order to stay with us.
http://s21.postimg.org/w7ndpfm4z/image.jpg

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(27 replies, posted in Members' Cafe)

http://s9.postimg.org/8j6yx611n/image.jpg

A pic of my mom from a couple of years ago.

http://s21.postimg.org/43f7voweb/image.jpg

And me and mom the year after I was diagnosed (2012)

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(27 replies, posted in Members' Cafe)

I know I should be happy I'm alive, and trust that God has a plan, but this has been the worst month ever for me.
I found out on Dec. 15 that the cancer has spread, causing me to be kicked off the trial I was on, and making me have to go through a biopsy again and all that entails. I could live with this, having been through it twice before. It's stressful, but it, unfortunately, is expected.
To make matters worse, a good friend of mine and my mother were both put on hospice this month. My friend, Maria, died Christmas Eve morning from kidney failure due to pancreatic cancer, chemo, diabetes and who knows what else.
My mom passed away a little over an hour ago, 1000 miles away. She was recently diagnosed with dementia.
I think God believes I'm much stronger than I want to be.
I don't know what to do. I can't think. I can barely breathe. I am broken.

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!