Ashley,
What great news about Tom! Although I'm sorry about the bone lesion. I guess is was lucky with radiation... I just had a little nausea and tiredness, but it was manageable.
I've had a tough time since starting the drug, but I don't believe any of it has to do with the trial. I had a blood infection and then horrible reactions to the antibiotics. 10 days total in the hospital, but I went to the one affiliated with my new oncs office so I could continue the trial while in the hospital. Finding approved drugs was unbelievably difficult.
So far, since I finished the antibiotics, I'm not having any bad effects. Of course, I'm only on week 4. I had a cat scan while in the hospital, and I believe I have another one in 4 weeks. I'm nervous, as only one of the 3 new areas was biopsied so I don't know if all of them have this mutation. I sure hope so!
As far as the 300 mg daily... My onc said they have the option of lowering the dose if needed. Maybe you need to do that for a few weeks so he can build his levels back up? It should be an option, at least. And, yes, chemo drugs in our system continue to work for a while. So although I understand his concerns I hope he doesn't worry too much.

Kris

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(8 replies, posted in Members' Cafe)

I'm so sorry to read this. My prayers are with you.

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(24 replies, posted in General Discussion)

I was released this morning. Yay!! Stazi is sooooo happy to see me!! She is pretty much glued to my side.
I don't go back down until thurs. I'm sure putting a lot of miles on my car!!

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(24 replies, posted in General Discussion)

I'm back in the hospital since the iv drugs didn't bother me. No pills today = no vomiting! Although it's been close a few times.
And to answer Marion, no, fluids don't stay down either. It was pretty scary the first round because there was red. Then I remembered I had some watermelon!

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(24 replies, posted in General Discussion)

OMG!! These antibiotics are kicking my butt! What little I eat is coming out of both ends. I've got to get something changed in the antibiotics dept. Or I'll probably end up back in the hospital for dehydration.

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(24 replies, posted in General Discussion)

I got my walking papers at 5pm last night. Yay! Stazi is being very clingy (for her). She actually walked onto and settled in my lap!
I couldn't wait to get in the shower, but gave her some much appreciated brushing and petting.
They haven't figured out whether I have an abscess or not, but are going to cautiously watch it. They have me on massive antibiotics. I never have reactions, but I AM NOW!! I think I've lost 5 lbs! Other than that, I'm feeling pretty good.

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(24 replies, posted in General Discussion)

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!

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(24 replies, posted in General Discussion)

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.

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(24 replies, posted in General Discussion)

I just can't seem to catch a break these past few months. I guess I shouldn't complain, since for most of the 5+ years I've been battling this monster I've felt pretty healthy.
I'm making up for it now! I'm in the hospital with another blood infection and not sure what else. They've been running test after test. I'm a pincushion! They can't draw blood cultures thru the port so since Tues I've been stuck 6 times! And I don't have that many veins left! I'm not sure if my one vein got blown or I just got a hematoma. We shall see.
I've had a chest X-ray, ct scan and lots and lots of medical personnel visiting me. When I do something, I do it BIG!!
I've been spiking a fever of 103. So far today it's only been 101 so I'm hoping something is going in the right direction. But I have this horrible cough. It's strong and takes over my whole body. But nothing is coming up. So they are stumped. Tested me for the flu: nope. Chest X-ray shows a possible pleural effusion. But I don't remember a body shaking cough when I had the first P.E. Between the coughing and the fever, it's been fun. I need housekeeping to come change my bedding as I soaked it ALL last night. Right now I'm sitting in bed on top of a blanket.
They keep asking if I have pain when urinating: nope. Does my abdomen hurt: only where they placed the stent. I know EXACTLY where they placed the stent, even a month later. My urine is very dark and it STINKS! So I was worried there's a problem with the stent, but I don't itch and my total bili is still 1.4. So I don't even have a guess.
I've never been NED in all this time, but basically I've felt much healthier than my docs have said I was (except for chemo!). In the last few months, I've actually felt like a person with cancer. I feel this need to get my affairs in order. Just in case. Stazi is my first priority. I don't think it's fair to leave her alone like I've been doing. My neighbors feed her, but it's not the same.

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.

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(15 replies, posted in General Discussion)

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!