How are people with liver mets doing?

BevJen

Folks,

Living Beyond Breast Cancer is having their conference virtually, and it's FREE. There are some interesting sessions for all. The conference will be held on June 13 and 14. There are some heavy hitters talking about lots of interesting topics.

To register, go to: https://metsconf.lbbc.org/en/

There is no charge to attend.

SandiBeach57

Thanks BevJen. I registered.

After completing (or attempt to complete!) 2 cycles of Xeloda, my liver enzymes are within normal range and Ca15.3 dropped 50%

In June, a MRI to see how my liver mets are doing.

I had a bowl of ice cream to celebrate. It is amazing how just good news from labs can elevate your spirits.

I miss my Ibrance/Letrozole combo, but here's hoping I get quality time on Capecitabene ( Xeloda).

What is next? Who knows. Even with my newly discovered FGFR1 amplification, my MO suggested aromasin and afinitor. It would be great if there was a anti FGFR2 drug approved for breast cancer at that time. A triple combo would be perfect.

S

Zillsnot4me

Thanks for the info. I’m trying to get a second opinion locally. I’m in KY. Not really looking to travel. I don’t like all this waiting time. I know none of us do.

I was on arimidex for a long time. Tried femera. Didn’t agree with me. Then a last try with faslodex before I went off ibrance. Then xeloda. Now?

I’ll ask about priquy.

SandiBeach57

Zills..what is going on? Are you progressing with liver mets? Was a bx done to check your hormonal status with genetic testing? Are you on anything right now?

Bliss58

BevJen, thanks for the conference info and link. I just registered.

So happy and encouraged to read about those with good news. Congrats! Hugs and best wishes for those struggling and working on tx options.

JFL

Thanks, BevJen, for the mention about the conference. I will be registering as well!

BSandra

Thank you BevJen, I have registered. Should be very interesting, and hopefully... hopeful. Also best wishes to all dear stage IV'ers. I carry every one of you in my heart. Saulius

Grannax2

Everything went well today. I saw the NP and she did order the PET for June 29. I’m staying on Faslodex until/if the PET shows a reason not to. The only problem is my weight gain. She says a common SE.

I’ll find out in a couple of days if it has affected my diabetes. I think it has but I’ll get the A1c results soon. If it has she will give me a higher dose of Trulicity. It has an SE of some weight loss. Maybe it will cancel out the weight gain from Faslodex.

I’ll let you know.

BSandra

Dear Grannax, I don't know if I should say this but in last photos you posted not so long ago you looked stunning and a few pounds cannot change that! I know, discussing womens' weight is not appropriate for men but, come on, you look amazing. I sincerely think so. Saulius

candy-678

Grannax- Noted your PET on 6/29. Will be waiting to hear your report.

Grannax2

Thank you, Saulies. Add about $10 pounds onto those pics! I’m not quite 5’1’. So each pound feels like a lot.

Bottom line, I’d rather be a little plump and have mets that are decreasing than be skinny and have progressing mets. So, I’m 😊

BSandra

Dear Grannax, right on point:) Your optimism is super-inspiring and brings a lot of joy to all of us!:) Saulius

NicoleRod

Well...I spoke to soon (as usual) about my bilirubin being low...and thinking..hoping it was because the doxil was working... My MO said yesterday that what was making my Bilirubin SO high (2.9, 3.2 etc) was most likely the Xeloda. I know shes most definitely right because my sacrum is hurting still and periodically my liver (where the tumors are, down low) still So once again I am not having high hopes now for the Doxil either. We decided to stay on the every 2 weeks infusion instead of once a month because I am tolerating it really well...I should have known for a chemo to literally be this easy with almost ZERO side effects, it wasn't going to work. I am not giving up all hope...just being realistic. Will Cross post in Doxil.

Grannax2

I got my A1c report back, not good. It went from 6.6 t 8.1. 6.6 was in January, that's a good range for type 2 diabetic. To jump 2 points in 4 months is bad. So, she's going to change me to a higher dose of Trulicity. We've got to get this down into normal range.

I've been moaning about not getting to hug my grandchildren.because of this COVI D 19 restrictions. I talked to my son and he says my three month wait is over. Maybe this weekend I'll get to have real hugs. Yay. I've missed them so much. 💞

SandiBeach57

Nicolerod, are you saying that your TBil is elevated again since starting Doxil? Does your MO think that Xeloda is still causing you problems..even now off it?

I am sorry that your TBil is not behaving. Is Doxil making it worse? When is your next scan? There is a treatment for you..don't give up.

Grannax2. I wonder why Fulvestrant is elevating for A1C? Is that common for diabetics? Does metformin help at all?

Why do we keep getting beat up? I am so proud of all of you for reaching out, talking to us and not giving up.

NicoleRod

Sandi... when I was on Xeloda my bilirubin was higher than my normal high (I normally my whole life always ran high like 1.3...1.4 1.2.. the range is 1.0 - 1.2) So on Xeloda I was like 3.4 , 3.2 ...2.9... Then on Doxil I am better 1.2 and yesterday 1.5 she said that she believes the reason it had been running high was the xeloda right now she considers 1.5 good for me...and 1.2 - 1.5 ok and normal. She has been tracking my Direct and In Direct Billy too... when Direct is high that is indicative of a blockage when in direct is high that is usually from other things...like Gilberts syndrome (which they though I had my whole life, its when your bilirubin runs high for not real reason) or it could be supplements, meds etc. Turns out it's always my In Direct that is high so that is good...bc if it was the Direct that would mean a blockage.

IntoLight

Grannax, I feel your pain about not hugging your grandkids. I am so excited mine are flying in on the 11th. I get to hug my three grandsons for a whole week (if they will let me LOL!) And a bonus--they are opening the beaches!!!

SandiBeach57

Nicolerod. Nice job explaining that. I was worried you were being taken off Doxil. Hopefully, scans will show it is working. Keep us posted.

HopeandGratitude

Nicolerod- never give up hope. Keep the faith. God bless.

NicoleRod

Thanks Hope

Grannax2

Sandibeach. Because Faslodex is causing weight gain, weight gain causes diabetes to get worse.

Intolight Yay for grandchildren hugs. And open beaches. 💞

TurtleLuv

Hi warriors! I haven't posted in a very long time but I have been keeping up with the posts.

I have been on ribociclib and AI since January and just found out that my liver cancer has progressed. It is now taking up 80% of my liver.😳 Luckily my liver enzymes are still normal. My MO has taken me off of targeted therapy and will be starting chemotherapy on Thursday (docetaxel). A biopsy through Foundation One has also been scheduled to assess any mutations of the cancer cells.
I've been readinga few medical articles about taking DHA while receiving chemotherapy. Has anyone taken DHA/ omega 3 while on chemotherapy? If so, how much? Was it recommend by your MO?
Also, has anyone had the biopsy done through Foundation One? I would love to hear about your experience.

Thanks

Anonymous

hi Turtlelove

I had my biopsy done through MDACC instead of foundation one. I had 2 blood biopsies with no mutations. The tumor showed only five mutations and ESR1 is the only actionable one right now. I take fulvestrant instead of an AI.

Hope you get actionable results. And your round of doxataxel works well.

Dee

BevJen

Hi, Turtlelove,

I had my liver biopsy and they retrieved tissue for Foundation One at the same time. My doc arranged the whole thing. It takes a bit of time -- at least 3 weeks, I think -- for the F1 report to come back. It identifies mutations plus provides some drug therapy suggestions based upon those mutations plus provides possible clinical trials for what they've found. They also provide an extensive list of published papers related to your findings. I thought the info was very informative and helpful.

If you are asking about the actual biopsy of your liver, for me, they did it with CT guidance (although they also said they could see it on a sonogram, but went with the CT.) They will give you some medication to calm you -- it's similar to twilight but not quite. Do not be shy about that -- I had a new nurse who was controlling the meds and man, I felt when they went in for that biopsy. I guess when I screamed, he gave me more, and then I fell asleep. But don't be a martyr, because a liver biopsy can hurt if you are not properly medicated. F1 has their own procedures for preparation and shipment of the sample to them, but if your doc is arranging it, they will know what to do.

Good luck.

SandiBeach57

Has anyone heard from nbnotes?

Kattysmith

Grannax, I miss our 5 yr. old grandson so much! They just live across town from us but none of us are ready for visits yet although I keep gently pressing my son! I've been sending homemade secret code messages through the mail for my grandson as well as badly drawn pictures of MeMe and Pepe which he thinks are very funny! I also started writing a story for him and will be sending him a new chapter every week. My son sent me a video of him reading the first chapter and laughing! He loved it and told his dad that he that he bet there would be 100 chapters! Welp, I better get cracking!

Wishing you all the best you're such a bright light here!

Kattysmith

Cross-posting from Xeloda thread:

After 5 months of not having had a CT scan ( my 3-month scan scheduled for late March got bumped because their radiology department closed down except for emergencies until this past week), I finally got scanned on Friday and the results were great! Both the radiologist and my MO agreed that there had been significant shrinkage in my liver tumors and no new lesions! Although my tumor markers have increased quite a bit, the rest of my blood work was good and there are no indications of any new activity anywhere, so I will take those results.

I'm over the moon!!!

SandiBeach57

Kattysmith! Yeah!

BSandra

Dear Kattysmith, huuuge congratulations, we are celebrating with you! Are you staying on Xeloda only (as you posted on Xelode thread)? Do you have a feeling why it works? Can it be that the immunotherapy "unlocked" something because if I remember correctly you were on some immuno-clinical trial before (was it Opdivo because of mutations)? I don't want to say that Xeloda is not working for you by itself but I'd like to dig deeper. I posted one interesting article (https://www.onclive.com/publications/Oncology-live/2020/vol-21-no-10/looking-forward-to-a-new-wave-of-breast-cancer-therapies) some time before and the story is about an exceptional responder advanced TNBC who reacted super-well to conventional chemo after immuno-therapy, although she was not reacting to the same chemo before. This topic is starting to circle slowly around the cancer research... Saulius

Kattysmith

Saulius, I honestly have no idea why I'm responding so well. I am only on xeloda and have been since November 2019.

I did have immunotherapy with opdivo plus the study drug for 6 months ending in August 2019.

Before I started they clinical trial in late 2018 the next option for me as far as standard treatments was xeloda, but my original MO decided that wouldn't be strong enough. He and a clinical trial colleague of his head MD Anderson discuss my various options as far as clinical trials. I was scheduled to start at trial combining Taxol with a study drug but an opening came up in the immunotherapy trial and they did a hard sell to get me to enlist, so I took a deep breath and jumped. I was their only enrollee in Houston and their only ER PR positive her2 negative patient in the study - I've never been sure why they thought I would be a good candidate, because I only have two mutations and they didn't know what they were at the time. The head of my study was thrilled with my initial good response and I do have my very own celll lline now for them to research.