How are people with liver mets doing?

GracieM2007

I can, it’s about thirty minutes up and back. I’m going to try the water and see if it helps

50sgirl

Gracie, it might be worth that trip to your PCP. Even dehydration can progress quickly. If you don’t see a quick improvement, more aggressive steps , such as IV fluids, could work better. Jaundice, of course, is also nothing to take lightly. Please see a doctor if it gets worse. Keep us updated. We are worried about you.

Hugs and prayers from, Lynne

leftfootforward

Gracie- listen to yourself. If you are becoming yellow and previously had not been I’d be a little worried.

Please don’t wait to long to be seen if you don’t start feeling better I’m married to a ER dr. And don’t usually encourage people to just go to the ER, but in this case I would tel you to not be afraid to go.

Please take care of yourself

GracieM2007

Thanks ladies! I know liver counts can go up on Xeloda, but didn’t realize it could mean an end to chemo!!!!

GracieM2007

ok will let you all know something later, my son is taking me to the E

JFL

Gracie, glad you are heading to the ER. I hope they can help you and your liver situation will turn around.

ShetlandPony

Make the ER doctor call your oncologist.

GracieM2007

Ok, my bilirubin and other markers were not bad enough to keep me, am glad to be home! Will post more tomorrow, am exhausted

leftfootforward

glad you are home Gracie. Rest up.

GracieM2007

Thanks everyone! My markers are actually down from last Friday’s number, five days! Which I’m praying means Xeloda is finally kicking in. I am a little jaundiced, but he said he’s seen much much worse. So just get my blood workup on Friday, and if it continues to get worse he said just run back in, it only takes an hour to get blood work up done. My onc is actually gone this week, so he would have only been able to talk to another onc who is on call for mine.

Frisky

Gracie, I’m so happy to know xeloda is working for you. I believe taking it half hours after a meal makes it work a lot better. I always took it with meals, I didn’t suffer from SE but the cancer also progressed in my liver....

BevJen

Cross posted with liver treatments thread -- sorry if you're reading this twice!

Hi to all! Just had my consult with an interventional radiologist from Hopkins about my liver mets. His suggestion is to do chemoembolization rather than Y 90. He thought that this was a good starting point. I believe that this is the TACE that has been written about before on BCO (although he didn't call it that.) I have 5-6 liver spots according to my scans, with the largest being about 2 cm, and the others being sub centimeter in size, scattered across both lobes. He said that he would not treat all at one time, but would do some, starting with the largest, on the first go-round, have me scanned within the month, and then see me in about a month to decide if we go back in or not to go after any remaining spots. He said side effects are mainly a dip in energy a week to 10 days later for a few days. He also wants me on systemic treatment, of course, so I am waiting for a call from my oncologist to see what this does with respect to Ibrance (because of the possibility of infection.). Right now, I am still on letrozole, but she wants me to change to fulvestrant and Ibrance. Didn't know if this info would help anyone.

Grannax2

Gracie glad you got your labs done. And that they are better.

Bev Jen. Interesting news from IR. I was able to stay on IF during y90 but my counts never went too low. That certainly could make a difference if your counts are going too low.

Grannax2

Gracie glad you got your labs done. And that they are better.

Bev Jen. Interesting news from IR. I was able to stay on IF during y90 but my counts never went too low. That certainly could make a difference if your counts are going too low.

Leee

I'm on 4/12 Gem/Carbo and the skin on my hands feel sensitive like a raw feeling. Tastes are dulled as well.

If this neuropathy - any advice?

bwdearing

My wife has extensive Liver Mets. Doctor changed her chemo around. She is starting on Gemzar / carboplatin next week. Here liver enzymes and bilirubin very high.

Has anyone else had success on these drugs? Did it get your liver back under control

sbaaronson

I have been on the AA combo for about a month, aside from the fatigue and a couple of odd, small rashes that came and went fairly quickly, I am NOT having a hard time on the drug. I was really scared after reading the side effects but thus far, very doable. Now if it will just clobber this cancer

Grannax2

bwdearing. Looks like Leee can help answer your questions. I've never been on that combo. Wishing the best for you and your wife.

Leee

bwdearing-

I haven’t had scans since starting Gem/Carbo. But it’s more aggressive treatment so I hope it works really well for us!!

Side effects for sure have been fatigue and low counts.

Keep us posted!

hartrish

bwdearing: I have been on carbo and Gemzar for 22 months. I had diffuse liver mets at the beginning. Tumor marker CA 27.29 was 3580. Now I have very little cancer and TM varies between 55-75.

Have tolerated this combo well. Fatigue, constipation and low wbc (on neulasta). About 3 days after treatment my back skin and muscles are sensitive to touch. Only last 24 hours.

Hoping this regimen works well for your wife.

Tricia

Novagirl

Bev Jen, thank you for the TACE info. I have two friends with liver Mets. One is triple negative and one is on Ibrance first line since February. They said Ibrance didn’t work. They are moving her to Xeloda then going to drain the ascites.

BevJen

I had a further conversation with the IR doc yesterday afternoon. I asked him which chemotherapeutic agents they use in the injections into the tumors themselves. He said that it's doxirubicin and mitomicin-C, I believe (not sure about my spelling of those). He said that those agents are NOT specific to BC or even liver cancer in general, but they mix well with the oil that they use in the injections and they seem to have some efficacy. Still investigating.

Grannax2

Doxirubicin is also called Adriamyacin. If I'm right about that, it is used on BC. I had it for my first TX, FAC, in 93. I don't know about the other one. It's a hard chemo but since it's only going to the tumor, not systematic, it should not cause SE.

BevJen

Grannax, Thanks for that info and you are absolutely correct. I hadn't yet googled the drugs, but I, too, had adriamycin in 2004 with my initial diagnosis (ACT chemo). Now I am a little bit concerned about this treatment because I just read something about a lifetime max of dosing. That also explains why the IR doc told me that alpoecia is a possible side effect of the treatment, but that it only happens in about 10% of the people who have chemoembolization. It would be nice if the right hand talked to the left hand when you have more than one doc involved, wouldn't it?

bwdearing

My wife has extensive Liver Mets. Doctor changed her chemo around. She is starting on Gemzar / carboplatin next week. Here liver enzymes and bilirubin very high.

Has anyone else had success on these drugs? Did it get your liver back under control. HR + PR- Her2

Greenteatwo

That is positive and encouraging news Sabarrason. I've been on A/A for 13 months now. Liver mets have regressed and bone mets have stabilized. SE of elevated blood sugar and elevated blood pressure have been effectively managed. I hope you get many months progression free!

SandiBeach57

I need suggestions for a good multivitamin that would eliminate some of these pills.

I currently take the following:

Calcium 1200mg, D3 2000mg, C 1000mg, K2 100mcg, Magnesium citrate 250mg, B complex, glucosamine, chondroitin, fish oil

theresa45

Cross posted on Clinical Trials thread. I'm struggling with a tough decision and would greatly appreciate input. I recently progressed on Xeloda and had my first liver lesion appear on PET/CT (1.7cm SUV 9.6). My liver was clear on PET/CT 3 months ago. My oncologist suggested a Phase 1 oral SERD trial (G1T48). Other options were Affinitor/Aromasin or Alpelisib/Faslodex. I have an ESR1 mutation and have progressed on tamoxifen, letrozole and Faslodex/Ibrance. I told my oncologist that I wanted local liver treatment, so she referred me to an interventional radiologist and liver surgeon. I chose the oral SERD and took one dose last Tuesday and did blood draws all day. I'm scheduled to start daily treatment this Friday. I met with the liver surgeon on Friday. A liver MRI showed only the single lesion at the edge of the liver which is "easily resectable." The surgeon will be gone for 4 weeks, so kindly offered to fit me in tomorrow (Monday). We were thrilled! Then my trial coordinator said my oncologist advises against surgery because I may/will be eliminated from the trial. I asked before going on the trial whether liver biopsy/resection was allowed and was told yes by trial coordinator (oncologist was at ASCO). Now trial coordinator says can't have liver resection within 14 days of starting trial. The surgeon's scheduled is extremely booked when he returns in mid-July. I LOVE my oncologist and don't want to go against her recommendation or hurt her trial, but I'm terrified that by July I will no longer be eligible for liver resection due to progression. Should I postpone the surgery with the hopes of rescheduling in July? Any thoughts?

Thanks! Theresa

ABeautifulSunset

Theresa, i have had a liver resection. It's fairly painful for a good couple of weeks. With one small liver met, a resection wont do tooo much. It's more important to treat it systemically. I mean, what happens if you resect that one and two more pop up next month? It's a probable scenario. My humble opinion, based on not really knowing you or your history, is to do the trial. Or, better yet, DONT do a phase one trial when you still have known options. But do tryyour systemic options first. You can always do a local liver treatment later, if still needed. The systemic route is more important.

One more thought: check out Dr Robert Nagourney at Rational Therapeutics in Long Beach, Ca. IF someone is going to resect your tumor, at least have it tested to see what treatments will and won't work in it. It could save you.

Sunset

theresa45

Sunset, Thanks so much for your input!!! I realize that more liver lesions could pop up. My cancer appears to be hormone resistant and the liver met developed during the last 3 months of my 6 month run on Xeloda, normally an excellent chemo for liver mets. So, I'm wondering if local treatment with systemic treatment might be my best option at slowing this down in my liver. You make an excellent point about sending some tumor to Dr Robert Nagourney at Rational Therapeutics. If I delay local surgery then I could line that up! You also make an excellent point about trying approved systemic treatments before phase 1 trials. The oral SERD has low toxicity risk and is aimed at patients who are hormone resistant due to ESR1 mutations... the drawback is that it is new and may very well not work.

Many, many thanks and best wishes for your treatment!!

Theresa