Liver mets: After a year on Ibrance 12... - SHARE Metastatic ...

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Liver mets

After a year on Ibrance 125, Faslodex and Xgeva. My pet CT shows Mets in my liver. Once has offered a clinical trial with Tesetaxel and Capecitibine,. Has anyone been in this study?

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I was in a study at John Hopkins in Baltimore Maryland. It was a disaster. I’m stuck with a huge bill for treatment that the research nurse said was covered by the study. Either she didn’t know or was leaving out important information. My advice would be to read every single paper before you sign. It’s my fault for being to trusting.

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That is really lousy! Johns Hopkins is a top flight place and it's scary that something like this can happen there! Are there appeal processes with your medical insurance company or a department at JH that helps patients find funding resources? I've only had to deal with one large unexpected medical bill, and I don't think there were resources to cover it for me, but I made an appt and went in and talked with one of the patient financial people and was able to negotiate a reduction in the bill. Part of my strategy was to offer cash right now if they would accept half. That didn't work but I did get them to take 1/4 of the total off. I think it was 1/4--it was several years ago. I also worked out a payment plan that we could afford on a monthly basis. If you don't have the energy for that, see if a close friend or relative will do that for you! I worked in health care for a number of years and have more understanding of the system than most, but I still get frustrated at times. I don't know what poor people without experience with this kind of thing do! It's awful and makes me angry as a citizen of our country!

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I was very disappointed in the shadiness of the entire trial and the information and lack of stated. But it was my fault for being too trusting!

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One of the important things to know about a clinical trial before seriously considering it, is what stage trial it is. Stage I trials are generally the first time the trial drug has been used in human beings and is primarily to determine safety of the drug. Personally, I would not consider a stage I trial unless I had totally run out of other options, including later stage trials but that is me. Generally only about 10% of trial drugs that have seemed successful in mice turn out to be effective for human patients. Stage III and IV trials have some success with people and are aimed more at determining dose and gathering more data about side effects and success rates. Did you have a period of success with the Faslodex, Ibrance, Xgeva combo? Success with a hormonal other than Faslodex? Is your onc a bc specialist onc, one who treats only bc? If not, this might be a good time for a second opinion with somebody like that. Unless your liver is failing, you probably have a good amount of time to make decisions and get other opinions. The liver is a remarkable organ, and the only one that can replace itself. I have known of several women with liver mets who were in the hospital, considered to be dying, and then a new cancer treatment has worked for them, their livers healed and they went on to live for years more. Spread to another organ is never a good thing, but at least with the liver, it can heal itself if the growth of cancer is stopped.

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I was offered this trial but since I had been on a trial previously and had such bad side effects I opted not to do this trial. Plus, as vain is it might sound, I was over losing my hair again!! I am just on the Capecitibine (Xeloda) and so far things have been stable. My mets is to the liver. Will have scans next month so I continue to pray for either being stable or of course shrinkage. Good luck with your decision.

Kim

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Just got back from my oncologist, and was also changed to a new med today, Xeloda. Indicators were telling us it was time. I had been on Ibrance and Faslodex for 18 months. I also have mets to the liver. Can you tell me how you are doing on Xeloda? I am scared of the new meds and side effects, as Ibrance was a very kind drug to me.

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Overall it has not been to bad for me. The one side effect that freaked me out is the hand and feet stuff. I am dealing with it but I started early putting a thick cream (I actually use aquaphor) on my feet and night with footies. I hate sleeping in socks but I guess there could be worse things. It took about 3 months to really have any issues and then my doctor lowered the dose so I take 3 pills in the morning and 2 at night. My hands are not to bad. They kind of just feel like the skin on my palms has shrunk a little and feel kind of slick but I haven't really had any issues with cracking and peeling on my hands. And I am not really careful about how hot the water is. They say to stay away from hot water. I also work out 3 times a week and it hasn't made it any worse. When I first read about the hands and feets side effects I thought Holy $!!! but it hasn't been that bad. I live in So CAL so when I am not at work and on the weekends I wear flip flops just so my feet aren't enclosed all the time. I guess those are physical things but other than that I have had no other physical side effects. I know everyone is different so I am hoping this drug will be kind to you also. Let me know if you have any other questions.

Kim

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Thank you for your response. The potential side effects of this trial are rather scary but my Oncologist says there are so many meds to keep them under control.

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Keep us posted as to how you are doing. I hope they kick cancers ass!!!

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I 'm in the of process of being accepted in to the clinical trial.

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For what?

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Rbeth, metastates to my liver

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