How are people with liver mets doing?
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meiard, nice to meet you & I'm sorry you find yourself here.
I think we all hope for regression but stable is considered an excellent outcome in the metastatic setting so I see where your oncologist is coming from. My inclination would be to stay on the taxol until absolutely untolerable side effects or significant progression (a minor progression in a new area I'd consider treating with radiation / SABR / SBRT) and still staying on treatment.
I hope you're icing your hands & feet. Most people who have to drop the taxanes do so because of neuropathy so anything you can do to prevent it would be beneficial.
If you're very low ER+ (like <10%) get your drs to start thinking of you as triple negative & start talking about Trodelvy. There's a big push in the UK from several breast ca charities to get trodelvy approved and funded. That would probably a good 2nd or 3rd line for you.
oh & also, if you're SE's are really bad, consider 1 dose reduction. I've managed to be on a taxane for 18 mos now, 1 dose reduction, lots of icing, B6, lots of walking & as much aerobic exercise as i can manage.
Nine weeks is still a short time on the treatment. Some people start seeing tumor changes in much longer timeframes so I'd hang in there.
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meiard- glad the taxol is keeping the cancer stable and slight shrinkage.
If you are having trouble with SE, may I suggest you discuss a dose reduction. It is a common to ask for that as a one way to stay on a drug that is working.
Another bit of info- I just read an article that <10% ER, negative PR and negative HER2 should be treated as triple negative. I’m sorry I did not keep the article. Perhaps you can find it and discuss that with your MO.
Hoping you get some relief and answers.
Dee
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Hi Meiard,
Welcome. We have similar stories as I was also almost 16 years from original diagnosis to metastasis. The one good thing, our cancers are slower growing. However, I would push for a different treatment. I recently progressed to the liver and 6 rounds of Xeloda knocked back the liver mets. (Bone seems to be trickier to eliminate - stable is typically good enough for my MO.)
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yes I have and mine did change now from ER+ to triple negative..so biopsies are very important
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The LOW ER+ is often basal like & behaves like TNBC info is here. I'm direct linking to the post in another thread as I linked within to several sources
https://community.breastcancer.org/forum/73/topics...
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Meiard- I had a wonderful 13 year remission from first time mets in 2002 (primary diagnosis 1998) with only AI (Femara) as my medication. They came back in my liver in 2015. What is important to note, that I have found from this group, is the the ILC (Lobular cancer as opposed to or in addition to ductal) component of a pathology report is becoming more important in deciding on treatment. ILC is more responsive to anti-hormonal treatments. I went on Ibrance/faslodex for 3/1/2 years until mets were found again in my intestine and liver- now on Xeloda. ILC, is only found in 10-15% of BC. ILC, is more likely to go to unusual places that oncologists don't necessarily think about. My MO had never heard of it going to the intestine. I have since sent him literature about the subject, which he has thanked me for. Eventually the anti-hormonal doesn't work but try and get the most out of it you can. Good luck with your new MO.
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Welcome to the liver mets gang, meiard, though of course we wish you did not have to be here. I hope you find the support and information you need. Fellow ILC patient here.
You live in a country where one of the very few ILC-specific clinical trials is happening! It is "Crizotinib in Lobular Breast, Diffuse Gastric and Triple Negative Lobular Breast Cancer or CDH1-mutated Solid Tumours (ROLo). So I suggest taking to your oncologist about the ROLo trial.
https://clinicaltrials.gov/ct2/show/NCT03620643
https://lobularbreastcancer.org/rolo/
If you can get it, genomic testing (next generation sequencing) can be helpful to suggest which treatments to try and which the cancer might resist. It can show if there are mutations that confer resistance to hormonal therapies, or not. What hormonal therapy were you on for those eleven years? Also, hopefully they are scanning every three months and not just going by labs. Lobular is sometimes hard to detect on scans, but not always. You might reach out to Sondra as she has experience navigating breast cancer care in England.
Here is a link for lobular mbc here on BCO:
Lobular Sucks! https://community.breastcancer.org/forum/8/topics/876844?page=1#idx_5
Here is a great resource:
Lobular Breast Cancer Alliance https://lobularbreastcancer.org/
If you can fill out your "stats" to show tumor characteristics, treatments, etc. it will help us to know what info could be helpful. (You have to make it public so we can see it; I think by clicking on the eye icon.)
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Thanks so much for all your wise advice! I feel much better prepared for the next appointment. I will be investigating the ROLO trial too!
Mary
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Hi there! was my name mentioned?
Im not liver OR ILC, but I checked out that trial and the Chair is my former MO and the contact is my current MO. If you need to find out more about the trial, Dr Okines is an excellent communicator and well organized, with the majority of her experience in ER+ MBC.
Breast Cancer Now has more info on the trial:
https://breastcancernow.org/breast-cancer-research...
Looks like it has been running for a while, perhaps there is difficulty in finding enough participants? Are you near any of those sites?
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Dear BAP, how are you? I was worried... sorry... Saulius
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How do you know you have ascites?. There’s so much I don’t know.0
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scan showed some reduction in size of some liver masses so getting a chemo break. Will still get Herceptin and Perjeta every 3 weeks for 4 treatments. I’:m hoping my taste comes back. Haven’t been able to eat much mostly liquid protein drinks. Still some discomfort in abdomen liver area. I’m almost 76 and not sure if I will do chemo again. Quality is more important than quantity for me now. Our adult son died 2/1/21 suddenly just 4 days before my Mets dxand life has been very hard. I will continue to pray for all of you. I enjoy seeing the photos.
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Ohio Nana, I am so sorry for the loss of your son. What a terrible, terrible year this has been for you. I hope that your strength and appetite increase and that you find comfort when and where you can.
In sympathy,
Katty
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OhioNana, I too am so sorry to hear about your loss. There are no words to express what a terrible year you are having. Hugs.
I get the challenge of losing one’s taste. I had trouble with Verzenio and then about two months of taste issues after radiation to my neck/skull. It was horrible. We know how important it is to eat but when things taste like nothing? Bleah… My weight is still okay but well below normal so, I get it. Hopefully things get back to normal soon.
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ohionana, im sorry for your loss. i like to believe that those who pass away go to a better place. my condolences.
there are many signs of ascites. tiredness, getting out of breath easily, not being able to eat or drink as much as you used to, feeling full after a couple of bites, bloated belly, tenderness in the abdominal area etc. a very simple ultrasound scan can confirm fluid accumulation and fluid can be drained slowly ( over 5-6 hours) which will provide major relief.
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ohionana - thank you for being vulnerable to share about your son’s death. Your situation is so tough, we can be here to cheer you on ( yay for some reduction and chemo break) and be online support with our experience and empathy.
Keep checking in.
Dee
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thank you, Katy.
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. I mean thank you all. I am “pressing on.”
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Dear OhioNana, thank you for telling us how you feel. We are here for you... Our knowledge is limited but hearts and minds are open, and many here have gone through a lot. And sometimes experience outweighs theory. Please be very welcome here - this is a god's blessed community that helped me and so many others through very hard times. Saulius
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Ohionana, I’m on a chemo break too. Although my mets are not stable. I am 73 so I agree with you about quality of life. All the chemos failed anyway. In October I’m going to try a Clinical Trial that is not so toxic.
I just had a fabulous weekend with my family. We went to Beaver’s Bend State Park in SE Oklahoma. My teenage stomping grounds. Lol. Lots of nostalgia for me because I spent every summer there with my grandmother. Lots of family pics to come, I don’t have them yet. I will share one of my granddaughter. I was her age when I went to thisriver with my friends to swim.
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grannax What wonderful memories you made with your family and fond remembrances! Thanks for sharing!
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Dear All, this is the message I got from BAP - she said I could share it here on the forums:
"I've had better times. I've been in the hospital for more than two weeks with ascites, portal hypertension. I went to get tapped before I was admitted and they looked over my scans and they swore up and down that whatever they saw wasn't cancer. Atleast 10 drs said so. So I had a liver bx and it came back cancer. Everyone was floored. Pet scan came back extensive but just to the liver. I had one treatment and then my bilirubin kept going up along with everything else so I had to delay treatment for now. I ended up in icu for a bit. It's a bit of a long story. I'm just hoping we can figure this out so I can get out of here and see my baby. Hope this isn't too vague. You can update the liver board if you like. I don't want to repeat it
"Let's give her our thoughts and hugs, and hope she with her team will turn things around quickly.
Saulius
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BAP, you are in our prayers. Thanks for posting this Saulius.
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BAP, well fuckity fuck. Sneaky bastard cancer. Sorry this is all happening, thinking of you. You just need one thing to stomp those liver tumors and turn this car around. All the fingers and toes crossed!
Saulius, thx for being a good friend and following up
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Saulius- Thanks for the update. I just hate to hear BAP is going through so much. 🙏🏻 Hoping she gets through this setback and on the mend with the perfect treatment.
Dee
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Just prayed
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BAP
In my daily thoughts.
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BAP, I'm holding you in my heart.
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BAP, in my thoughts and prayers.
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