Liver tumors progressed

[Mootzi]

After 7 cycles of Ibrance and Letrozole, my liver tumors have progressed. I had a liver biopsy on July 9th and the slides were just sent this week to Foundation One in Boston for Next Generation Sequencing. Unless they find a mutation, my oncologist and my second opinion oncologist want me to go on Xeloda. In the meantime I am still on the Ibrance and Letrozole. Has anyone been in this situation? Other than fatigue, I’ve felt pretty good with Ibrance and Letrozole. I’m nervous about going on Xeloda. Thanks for your input.

[Hidden]

Hi,

I'm sorry to hear of the progression to your liver. I am not on the exact same treatment as you, but I think it's a good that the samples were sent off for analysis. If there is a mutation that is identified there will hopefully be a drug that will target it. I had genomic testing done in January and I found out I have the PIK3CA mutation, which piqray (alpelisib) targets if and when I need it. So I do hope you have some positive results back from that. I'm sure other ladies with experience of xeloda will be able to answer your questions about that drug, should you need to go on it at some point.

Take care,

Sophie

[Mootzi in reply to Hidden]

Thank you, Sophie. I’m happy to hear you had positive results from your genomic testing and there is a drug out there waiting if and when you need it. I appreciate your support and I wish you the very best.

[Hidden in reply to Mootzi]

Thank you. I wish you all the best too. I hope you get some positive results back about possible future treatments.

Take care,

Sophie

[barbarac76]

Hi,

I'm sorry to hear about your progression. I understand your concern about Xeloda. I felt the same way when I had progression in my liver while on Ibrance (and Faslodex).

Here's the good news from my perspective. Based on my experience, I would rate Xeloda as one of the easier treatments. I've been on it since February 2019 with resolution of nodules in liver and stable in other areas (lymph nodes, bones, lungs).

My biggest problem has been the hand/foot syndrome, but it's been manageable with some lifestyle changes (no jogging, excessive exercising, reduced walking and hiking) and some discipline regarding treatment of hands and feet - I soak my feet in cold water after any form of exercising and use cream routinely - my cancer center recommended anything with urea - I use Udderly Smooth Extra Care.

From what I hear and have experienced, Xeloda is a good choice MBC in the liver.

If you go the Xeloda route, I hope you get a good run and have minimal side effects. Let me know if you have any other questions. Unlike many others, I take it 7 days on, 7 days off, 1500mg in am 1000mg in pm.

Barbara

[Mootzi in reply to barbarac76]

Thank you, Barbara. Thank you for the good news perspective. Ten years ago with my first diagnosis of cancer I had the red devil and then taxol. Taxol was really hard on me and I still have the neuropathy it caused. I was afraid Xeloda would have the same negative effects. Being on Ibrance and Letrozole, I almost forgot I had MBC. Now I am filled with anxiety and dread, but when I look back, I felt that way about each new treatment. I suppose the fear of the unknown is worse than the actual treatment. Thank you for your encouragement and I wish you the very best.

[barbarac76 in reply to Mootzi]

You are so right - it's the fear of the unknown in terms of efficacy and side effects. Each time a treatment stops working, I relive (to some degree), the feelings of despair I had when I was first diagnosed. But, thankfully, there are a lot of options.

[Kiera49]

I'm sorry to hear about your progression, I was on ibrance but stopped working so now just done 1st cycle of xeloda

[Mootzi in reply to Kiera49]

Thanks Kiera49. How was your first cycle?

[Kiera49 in reply to Mootzi]

I felt a bit sick at times but that was it no other symptoms and will have stronger anti sickness pills or reduced dose next time, most people dont feel sick I've just got delicate tummy, a bit tired but not too much. I wish you all the best

[Have-faith]

Hi Mootzi. I am on my 4th cycle of xeloda. I was very upset knowing I was going on my first line of chemo when I heard my former treatments had stopped working. I am grateful it is an oral pill and I dont have to go in to the hospital for IV. My biggest side effect is fatigue but I do work full time and stay up later than I should so some fatigue is my fault. I do moisturize my feet and hands alot because if I dont they get dry and peel. Dosages are figured out by your weight but your onc can adjust amount if you have side effects which are too unpleasant. Good luck! Keep us posted on how you are doing. Faith

[BluHydrangea]

Mootzi

So sorry to hear about your liver tumors progression. I’m on Ibrance— so cant help with Xeloda— but I wish you the best treatment to help you stabilize. Let us all know how you are doing and how the treatments are for you. Big hug. Cindi

[mariootsi]

I wish you well on your new treatment!

[Mootzi in reply to mariootsi]

Thank you, marioots!

[hdhonda]

Dear Mootzi,

It breaks my heart that Ibrance has quit working. Fortunately, there are others that will. A lot of ladies have had good results on Xeloda. Fatigue seems pretty common with all of the drugs. I am wishing you the very best with Xeloda. Blessings, Hannah

[Mootzi in reply to hdhonda]

Thank, you Hannah! Many blessings to you!

[hopenowandtomorrow]

Sorry to hear the news of progression. Praying that the alternative options work well for you for a good long time. ❤️🙏❤️

[Mootzi in reply to hopenowandtomorrow]

Thank you so very much for your prayers and positive thoughts, Hope now and tomorrow!

[8576]

I have had that feeling also. I thought that a change was not necessary. I would have liked to try staying on the Letrozole till the next scan. And actually my second opinion Oncologist thought that was a viable option. Then repeat the scans in 3 months. It also depends on the amount of growth on the present scans. Just my thoughts.

Cheers, June S.

[Mootzi in reply to 8576]

Thank you, for your thoughts and support. Cheers to you, too, 8576!

[PJBinMI]

Progression can be really scary! So can med change....off into the unknown and feelings of being so out of control! I'm a long timer with mbc (bone mets only) and have made a point of learning all that I can about mbc and the many things that go with it. When I saw that you have progression of liver mets, I wanted to jump right into the conversation to let you know about what I have seen several times with friends with liver mets! The liver is a really remarkable organ and can actually recreate its own cells! I've known some women, I forget the exact number, who have been hospitalized with failing livers from mbc, had a great response to a new (to them) treatment and gone on to live for more years! That really amazed/surprised me the first time it happened to a friend but after a couple of more people had similar experiences, I realized it does happen. We each have our very own individual experience with everything about this lousy cancer but it can sure help us ease up on anxiety to know that others have done better than we are scared about. Foundation One does usually tell us more about what won't work for us than what will but even that helps with decision making. Another suggestion is to see a bc specialist onc at a major cancer center, a Comprehensive Cancer Center if you are in the US. Those are the top tier cancer centers and they are listed on the website of the National Cancer Institute--there is a link on the healthunlocked mbc home page to the right under resources. Oncs there see patients and do research and are the oncs that speak at major bc conferences the most often. I hope you will do well and that your liver will keep doing its job for a long long time for you.

[Mootzi in reply to PJBinMI]

Thank you so very much for your informative reply, PJBinMI! I appreciate your encouragement. It does help my anxiety to read about others doing well. I wish you many, many more years of success with your MBC!

[RLN-overcomer]

I hope/pray that Xeloda works, and that you will have no debilitating side effects. Stay strong sister/warrior

[Mootzi in reply to RLN-overcomer]

Thank you for your encouagement and good wishes. I am sending best wishes to you.

[Tryingtosurvive]

I have MBC too. My last scans in June were all good except one of my 2 tumors on my liver grew from 1.0 to 1.7. The other ironically shrunk from 2.4 to 2.0. My Oncologist recommended 5 rounds of spot radiation on the tumor that grew. When consulting with the Radiologist, he said because both tumors were so close together he wanted to zap them both. I finished my radiation 11 days ago. My next scan is in late October so fingers crossed they are both gone or close to it. I don't know how many you have but maybe that's an option for you? Thank God He made our livers to be able to regenerate.

[Mootzi in reply to Tryingtosurvive]

Thank you for your reply. My doctors have never mentioned radiation. I will inquire about that treatment option during my next visit. Blessings to you.