Mets to liver

Hi Raindrop, I heard Xeloda is supposed to work very well for liver mets. You've had liver mets since 2014? That is great but I'm sure absolutely NO consolation when you're faced with progression.. thinking of you

lucia

Raindrop There is a ton of information on the "How are people's doing with liver mets? Thread. You'll find lots of answers there. I've had liver mets for 2 1/2 years, Failed IF, AA and am now on X, third cycle. Find out if it's working in June. I also post on X thread and on local treatments thread, y90, etc.

That's understandable. Did you know you can put in one person's name and look at past posts for that person only?

Ask away. I cannot answer all, only my experience. I'm very much a y90 fan because it made my numerous liver mets inactive for 18 months.

It is hard not to get discouraged, depressed when progression occurs. Each of us is so different in how we respond to TX. My encouragement came from ladies on this forum. The general public and friends seem to say ignorant stuff like oh, honey you're gonna be just fine. They don't have a clue how it feels to have " liver monsters" growing inside them. It's scary as ----! Coping is key. Knowledge is key. Laughter is key.( That's why I call them liver monsters). Some think that's silly, actually I like to be silly. Hahaha it lightens a serious subject.💞

Rainedrop, I had an "explosion" when Ibrance/Faslodex/Aromasin stopped working for me. In one scan, I had no evidence of active disease (I had tumors but they were all metabolically inactive), 3 months later, 70% of my liver was mets. I went on to take Xeloda next and my liver was back to no evidence of active disease again in 3 months time by my next PET scan. Xeloda worked better than any other medication for me. My liver has never been that bad again since then, which was over 3 years ago. Don't get scared about the post Ibrance "explosion". It has been my observation that many people suffer a major explosion when Ibrance fails. I think it has something to do with the aggressive nature of the pathway the cancer uses to work around Ibrance/hormone therapy.

I sometimes have liver pain from growing mets or have a generalized discomfort when the liver is enlarged and putting pressure on the capsule that contains the liver. However, I seem to have a bit more pain when I start a new treatment and the liver mets are shrinking. Everyone certainly is different as far as liver pain goes. Do you think some of the pain is caused from the gallbladder removal? Your procedure was pretty recent!

As for orange pee, before jumping to conclusions, you may want to significantly increase your water intake to rule out that it is caused by simple dehydration. When my liver or belly hurts, I unknowingly stop drinking as much water.

Hang in there. This all sucks but there is hope and I think Xeloda will help you a lot.

Raindrop. I can show you pics of me when I looked like I had a right-sided baby bump( I'm 71). It looked the worst after my y90's. The liver gets angry when it's messed with, I think. It must swell as a response an alien invasion of y90 or X trying to kill tumors. But, surprisingly, for me, it didn't cause much pain. When I do have pain, it's in my right shoulder blade area, referred pain. During my six months of no effective TX my pain was more noticeable. I tried taking more of my tramadol but it just made me hyper weird. I'm allergic to most other pain meds.

I believe as X starts working your swollen belly will decrease and your also your pain. I don't know what pain med you take but I do know that some meds make people feel much worse than the pain itself. Ask your MO.

Rainedrop, your 8 months pregnant comment reminded me of my stomach when I found out I had ascites. My liver has diffuse mets and it caused fluid to build up in my peritoneal cavity. I gained 10 lbs in a week and 5 each week thereafter for a month. Suddenly my 170lb body weighed 200!!! I'm not sure if you've noticed any weight gain but if you do you should let you oncologist know. I know have a Pleurx drain in my abdomen and I drain 1,000mls in the morning and another 1,000mls at night. It's the only way to stay comfortable. I hope you get some answers and relief. I freaked out when I found out it was in my liver but I'm doing well on Eribulin for now 🤞🏻-Jill

That's good, Rainedrop, that they'll drain the fluid and that your your pain is controlled. Sounds like you did the right thing.

They want to wait a couple more weeks before deciding on a drain. Seeing if the Xeloda and the different diuretic help. Crossing my fingers

wow, it took from June to August to finally drain fluid? That must have been horrible. I have just started to get a fluid build up and have been wondering how long they wait. Last CT stated small volume ascites, I don’t feel it and they are not worried about it but I was curious.

I hope you’re able to find relief for your breathing some how