Thanks Marion.
I got the results from my first official trial ct scan and the results are really good! All areas have shrunk. Of course we are measuring in millimeters, but I'll take it! One of them was 2.1x1.6 now 1.6x1.3. So pretty substantial shrinkage.
Also on the report are two new items. I now have ascitis. And there's an undetermined lesion on my spine.

I had my first "official" ct scan yesterday. I get the results Thursday. I DO know that unofficially, one of the areas in the crowd of stuff is smaller. I also know the lesion on the right of my liver, remote from everything, is unchanged. Of course, this is from a scan while I was in the hospital, and nothing was measured.
So I wait until Thursday to find out the official news.
My phosphates have been out of whack. Not sure why. But I'm on a low phosphate diet. Anyone who knows me knows how hard this is... I LOVE my cheese and pizza!!

I'm sorry about his bone lesion. Hope the rod is successful and comfortable. Good luck with the gem/Cis regiment.
I have my first trial ct scan on Monday. Then I have to wait until Thursday for the results. I do know from the last hospital stay that one area shows shrinkage. I also know that the lesion on the right bottom of my liver looks exactly the same. The doc in the hospital let me see the ct scans.
I sure hope I beat the average of 6.5 months. The last trial I blew the average out of the water! I believe the average for that trial was a year, and I did 2.5!

I'm sorry tom is off the trial. I hope the onc and Dr. Javli can come up with a great new game plan.
6.5 months? That's all? So I have 5 months to go... I'm actually planning on being one of the longer lasting patients. My last trial I had everyone by about a year.

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(1 replies, posted in Members' Cafe)

Love it! Very funny. Sad, but funny.

I'm sorry. I got out last Tuesday. No real idea why I spiked a fever. There was infection starting in my duodenum so that must have been part of it.

This is getting old! I spiked a fever Thursday night and was told to go to my local hospital for blood cultures. I really figured I'd go home that day or the next. Nope. I got my first ambulance ride Fri night when they transferred me back to Penn Presbyterian. The local hospital had a ct scan done, and sent the disc with me. Unfortunately, they don't read discs on the weekend. So I was getting antibiotics this weekend, but they stopped them today. I was hoping to hear something from I.r. Today but unfortunately I didn't. So I wait. I've run out of things to eat on the menu!

Ashley, many mutations cross cancer lines, especially in the gastric area. And cc is basically colon cancers brother or sister. They are very close, according to my surgeon they are more closely related than cc and liver cancers. In my original biopsies, I had a breast cancer mutation. Unfortunately, that is not the case anymore.
I hope Tom improves enough to get back on the trial. Have you discussed lowering the dosage? My onc says it's a possibility if this stupid stuff keeps up. I hope the biopsy shows a mutation compatible with Keytruda or Obtivo so Tom can get on that if he has to leave the trial.
Try to stay positive. It works!

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(7 replies, posted in General Discussion)

Have a wonderful week!

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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(26 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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(26 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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(26 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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(26 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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(26 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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(26 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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(26 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