Re: Question for liver metsters
 

Maybe we need a new CT thread. Yeah--I think I'll start one.

I get a full abdominal CT. No enteric contrast, just the intravenous contrast.

Last Tuesday I had a CT-guided biopsy of my lung. No contrast at all.

Re: Question for liver metsters
 

So my update is good news: My cancer is half the size. It was 4.5 x 4.1 and shrunk to 2.5 x 1.7 - Doctor said it lost 60% of the volume. Also, I didn't know these two things: That it was abutting the portal vein, and that I had enlarged lymph nodes near by. It's still near the vein but is not encroaching on it and the lymph nodes have shrunk.

The leads to the bad news: Gemzar is working, and so I am going back on it. It was my decision, the doctor would have let me go on TDM1. But, TDM1 is not going away and we can keep that for next time when the gemzar stops working. He is going to cut my dose down to 600 l instead of 1000 and see if I can tolerate it better, and then we'll check back in a month.

He said this always seems to happen: when a chemo works for a patient, they can't seem to tolerate it! Well, I'll manage. I need to get that thing shrunk far away from the portal vein and maybe ablated again.

So next week I'll start my Gemzar, perjeta, herceptin regimen again.

I am very happy that I got regression for the first time but not crazy that it was gemzar that did it. But if it'll get me a step closer to my sons graduation - so be it.

I was really shocked at the news: my pain is way up, I am having all sorts of GI problems - ever one you can have. I can't eat, no appetite and sleep 14-15 hours a day. I thought for sure he was going to tell me it's grown. Somebody else told me their doctor said the liver is the one organ that "complains" when cancer is dying so I am going to assume that's what's going on. :)

So anyway, it was good news for me. I hope all get the same good news I got or better - NED!

Re: Question for liver metsters
 

Glad it is good news - sorry you are still having trouble. Would he keep perjeta going within the TDM1? I am glad you are staying on the perjeta - it may be the key ingredient here.

Coul Perjeta be causing some of the GI trouble? I certainly am very loose from it and take one gastro stop a day to control it. For me the carbo is giving me grief so hopefully I too am having a "response" . I hope this cycles is better side effect wise.

Yeah for a good result!

Re: Question for liver metsters
 

I suppose the perjeta could be causing the GI problems. They are worse since I started it but I haven't been normal since I had c.diff. I'm just all over the map, with everything you can have. Constipation, tenesmus, other things I won't mention for that end, plus upper GI problems like heartburn, plus zero appetite and feeling full if I eat anything, which are classic "sick liver" problems.

But they are all relatively minor problems that I can live with. Because of c.diff, I can't take any meds for any of it anyway so I will just deal. Nobody said it was going to be easy and hey, I finally got the longed for regression. Can't complain.

Re: Question for liver metsters
 

Hi CoolBreeze,

So glad to hear you finally found the "one"

Very happy, happy for you...

Love,

Adriana

Re: Question for liver metsters
 

Yay! So happy for you! Thank You, God!

- Penny

Re: Question for liver metsters
 

Ann,
That is just the news you needed to kickstart kicking butt again-
Excellent,
Karen

Re: Question for liver metsters
 

Really happy for you that the current combo is working.

Re: Question for liver metsters
 

Oh Ann, this is such great news! I'm so happy for you to hear about the regression:) guess it's a wonderful birthday present for you;)

Hope Gemzar works for you for a long time to come!

Re: Question for liver metsters
 

Such wonderful news! Thanks for sharing. Praying for continued shrinkage ...

Re: Question for liver metsters
 

My thought process during chemo was -- if I feel this lousy -- JUST THINK HOW MY CANCER CELLS are doing!!!

Kind of like passing a kidney stone. The pain is intolerable, brings you to your knees and then flat out on the floor, but the pain means -- THE STONE IS MOVING and that is a very good thing! You need to get it out of you. So, I relaxed into the pain, knowing I was making progress.

Go, Ann, go...

Re: Question for liver metsters
 

Ann,

This is awesome news. I'm so glad for you.

Sorry it comes with so much suffering.

Keep up the good work.

Re: Question for liver metsters
 

Ann, how many Gemzar treatments did you take to get the 50 percent reduction? Im so sorry the side effects are so nasty for you. I sure hope the dose reduction makes it more manageable. Im sending lots and lots of prayers and positive energy. Im just so happy that you and your doc have found something that brought about some regression I have tears in my eyes. Big hugs to you.
Andrea-I have the elevated liver enzymes too, and my doctor did the exact same thing. Well, they don't seem TOO high, lets check them again in a couple months. Of course this is the same doctor that said, we will wait until you have symptoms to do a brain scan...and six weeks later I ended up in the hospital with five brain tumors. Seriously thinking about switching oncs!

Re: Question for liver metsters
 

People react so differently. The two times treatments (Tykerb & Taxotere) were the roughest on me are when I had the most progression. Strange.

- Penny

Re: Question for liver metsters
 

Hi There CB. Glad to hear of your significant tumor shrinkage. It's really good news, that you're responding. I hope you feel better and are able to get your appetite back. I know that's hard, just try to take in enough calories in order no to lose any weight.

Re: Question for liver metsters
 

KsGal, I started Gemzar January 15th, I think. With this chemo, a round is 3 on, one off.

I think I was only able to make it through the first round before I had to skip one. Not only did it destroy my white and red blood counts but it made me physically sick: nausea, exhaustion, pain, just completely unable to get out of bed. And, I never made it through a round without skipping one.

After about two rounds, my doctor lowered my dose. (Normal dose is 1000 ml, and he lowered it to 800 ml). Even then, I couldn't make it through the next round, and then in March we gave it up. I honestly was surprised that I wasn't turning yellow yet - I thought my liver was giving up, I sleeping so much, having bathroom problems, just zero energy to the point where my husband was thinking I needed to go to the ER. Also, lots of pain in my right side, liver, under the shoulder. I thought I was declining fast, but it was the gemzar.

We decided to go on TDM1, but have a baseline scan first, and then the scan showed the 50% reduction in tumor size. Wow. First regression I've had and I had half my liver cut out!

So, by my choice, I said I'd try and tough it out and go back on Gemzar. He said this time at 500 ml and if I can't tolerate it, we still have TDM1. We'll see if I can manage with that. I better refill all my anti-nausea pills and arrange for somebody to get my child from school on Thursdays since I won't be getting out of bed.

It's been nice not feeling horrible, you know? Since I stopped the Gemzar, I haven't felt well, but I have felt better. You forget when you take this forever chemo journey what is is like to not be on it. And of course, when you are not on it you are still sick so I'll never feel healthy again......but I do feel better. It's been about a month since I've had any and I wake up at 11:00 now (instead of 1:30 with alarm) and I can do a couple things around the house, including cook dinner. I was too shaky to stand before.

I can't eat anything much yet though. I used to not eat a lot but want a big piece of cake every day which kept my calories up (and my doctor said any calories count) and sit with my family and eat something - and that craving is gone so I'm not really eating, and even with my family I just pick. Except a coconut popsicle at night, I still eat one of those, which is a weird craving but I love them. I have been stable at 99 pounds for a couple of weeks, so as long as i don't go down it's good. I also don't expend a lot of energy. :)

Liver disease just causes problems everywhere. I am curious - does lung do that too? If I had lung mets, would I have the weakness, the gastro problems, the eating problems, the energy problems? It's a legit question, I'm curious. Brain is a different animal so I don't want to include that but am curious about other organ. Maybe all these are just late stage cancer problems and we all get them? Maybe it's chemo although my month off hasn't led me to believe it entirely - some is cancer, some is chemo. Maybe if I could get six months off I'd feel different.

Oh well, at least I have a few things in the arsenal yet, not complaining. Funny how we can live this way. If you had dropped healthy Ann from four years ago into the body I occupy now, I think she would be shocked and scream to get out, but it's just me now.

Re: Question for liver metsters
 

Coconut popsicles? Sounds yummy. I don't think I've ever seen them. Wonder if I can get them here in Jersey.

- Penny

Re: Question for liver metsters
 

I agree, coconut popsicles do sound wonderful. Im having most the same symptoms you are, Ann, and my liver enzymes are crazy elevated, so maybe it is liver mets related. But who could tell...Im sleeping all the time. Im never hungry..you know that craving we used to get for a burger or whatever, never feel like that. Food sounds nauseating pretty much no matter what it is, but when I do eat its mostly greek yogurt or cottage cheese..something cold. I thought it was my steroids, but Im pretty much off them now and still battling the calorie issue.
I just keep thinking...I hope that this isn't my new, new normal. lol You got such good results with the gemzar, even with skipping treatments, I sure hope with the dose reduction you are able to tolerate it much, much easier. Still praying for you, as are many others. Jody