How are people with liver mets doing?
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LFF I remember feeling exactly like that when my HGB went down to 5.2. Yep hospital and two units of blood. That was a almost two years ago but I won’t forget to listen to my body.
BLMike. I’m so sad to hear this news about your wife. Prayers for both of you.
Kattysmith. It’s good to hear from a fellow Texan. But, of course, I don’t like to hear that you got the talk. We all know we’ll get the talk at some point but I dread it. I’m too close for comfort. Nothing is working for me. Chemos are fail, fail, fail. I’m taking a three month break from any TX so that I can make some good memories with my family. My grandson is 9. I may consider a clinical trial in the fall but I don’t think I will do anymore chemo.
Wish we didn’t have such tough decisions to make
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BLMike, I’m so sorry to hear about Polly. While we all know we will get to that point eventually it’s impossible to be prepared. You are both in my thoughts and prayers.
Kattysmith and Grannax, I’m also sorry you are reaching such a difficult place in your treatment decisions. Sending virtual hugs to you both.
I’m behind with the thread but my heart goes out to all of those struggling right now.0 -
cross posting with local liver procedures...
Has anyone had local liver treatments to liver mets at Memorial Sloan Kettering? If so, what kind of treatment(s) have you had?
After my hyper explosion of mets from my short period on immunotherapy, my interventional radiologist at Hopkins said he wouldn't do anything else local with my liver. I am currently on xeloda and neratinib. Bone mets are stable but the issue is the liver mets.
I have watched for about two years the expansion of material on the MSK site about liver treatments, especially mets, and it seems that they are talking about a lot of options in a lot of situations. On a short video that I watched, they were talking about how many procedures they do in a year, and how it may be best to go to a high volume center for these types of treatments.
Thanks for any info you can provide. I've had 3 microwave ablations.
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BLMike & Polly, oh damn, I'm sorry to hear your news.
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BLMike so sorry to hear this!!!!!!!! UGHHHHHH I am so angry for you both!!!!!! There are no other words.... except prayed for you both.
Saulius you both look so great and so healthy. I pray we all soon get drugs like HER2+ has so we all have the same chances that you both are getting its so great for you both!!! I am so happy you both look...so happy!!!
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I just received the results of the pet scan and it’s not good. My liver is covered with tumors ranging in size from 3.5 cm to 10 cm that involves most of segments 5 and 6.
They is a lesion on the right iliac bone that measures 1.6 cm.
There is an enlarged hyper metabolic portacaval lymph node that measures 2.1 cm.
it’s just too widespread and too large. I can’t see how treatment can really do anything at this point.I was first told that it didn’t look like cancer, than it was 3 CM and than the cat scan read 7 cm and now this. I can’t deal with this
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Kabuki,
With the right treatment it is possible to greatly knock it back down. It's just as important how you respond to treatment, as the starting point. Treatment type will depend on the characteristics of the cancer. Have they done a biopsy and given you back results on hormone receptor status and HER2 status?
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Husband11,
They did do a liver biopsy. ER+ PR- H2 waiting fish test.
Im on Verzenio 150mg and start Faslodex injections on Monday.My oncologist is sending me to UCSF to see if there are any studies but it’s so overwhelming right now
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BLMike, I too am very sorry to hear of Polly's recent downturn. It's hard to read that one of our own is at the point of hospice. Sending you both warm thoughts and a wish that you can feel the support coming from this group.
Thinking of Grannax2, Kattysmith, Nicole, and Kabuki. Each of you have different things to get through, and I hope each of you comes out in a good place.
Saulius, It's so nice that you posted that pic for us to have a real image of you as we read your posts. You both look fabulous!
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kabuki- UCSF is where I went for a clinical trial. They were great and knew their stuff. They will be a good source of information and hopefully treatment.
At one point I had to switch to weekly taxol treatments to try and control niumerpus liver tumors. I was on taxol foe 2 years. It worked wonders when to get rid of my liver spots.
I wish you wel
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BLmike and Polly- you are exactly right- too soon. We appreciate your candid sharing of your situation. Hoping for the best and enjoy each day forward. 🌞
Salina- thanks for sharing your beautiful photo. NED is awesome. I know those 3 LN are frustrating to be sticking around but 7 months stable is great. Enjoy🎉
Kattysmith- This is a treatment I was pursuing for neuroendocrine BC. Contact Susan Cork if you are interested. https://clinicaltrials.gov/ct2/show/NCT04276597
Buttons- is it cellulitis in the LE arm? I hope you get answers. I know how awful LE is to live with.DEE
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leftffotforwarward,
I had heard that Hope Rugo is the best breast cancer specialist but the oncologist is sending me to Michele Milisko.
Does anybody have experience with either of them
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BLMike, I am so sorry, my thoughts and prayers are with you and your wife.
Kabuki, When I was diagnosed with liver mets last year the pet scan results said: “liver engulfed in metastatic tumors”. I had ascites and was in a lot of pain. Taxol worked wonders for me.
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Thank you D37 and leftfoot for the Taxol reports. Maybe that’s what I should be on
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Kabuki
1st Dx, widespread liver mets, adriamycin, cytoxan for 3 months then switched to Letrozole, Ibrance, 3+years
1st Progression, widespread liver mets, Xeloda, 15 months
2nd Progression, widespread ( diffuse with tumors from 3 cm to 10 cm), Weekly Taxol, just started, we will see!
So many options Kabuki. Your MO will find the right combo.
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Sandibeach,
I hope the taxol works for you. We have identical size of liver mets0 -
Kabuki - liver mets only , but 11.8 cm (on MRI, larger on PET-CT), 4. 8 cm + numerous other tumors. NED within 8 months on Verzenio + Anastrazole. Hang in there.
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Conratulations SeeQ! You give me hope. I read that ER and PR+ have a very good response to treatment. ER + only is more aggressive and resistant to treatment
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Mermaid007- I was on letrozole alone for 14 years- I was immediately switched from Tamoxifen to letrozole after finding a liver met (3 years after initial BC diagnosis). After 6 months it disappeared just as I was planning on an ablation, and stayed gone for 14 years. This was the first drug I took once I was metastatic ( I had IV drugs for my initial diagnosis for Stage 3-AC and Taxatere). I think I was highly ER+ and the AI kept my estrogen level low so as not to feed my liver tumor. I don't know anyone where the drug worked this well.
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Nina,
Thank you for your reply. I am highly estrogen positive too. I'm not sure if it's the same in the USA but in the Uk we use a test called the Allred score. The highest number for estrogen is 8 which is what I am, although negative for PR and HER. My primary was in 1999 but found in my bones 16 years later ! Then spread to liver. Treatment has been Exemestane then Verzinio/Faslodex now Xeloda. So I was encouraged to hear that Letrezole can also work on liver mets.
You also mentioned the high dose of Xeloda that I was started on. How do your MO's decide on dosage? Here they use BSA so it's based on height and weight. Because I am 5'6" and quite well built ( US size 12) my dose was 4300 per day!!! I was so ill and managed to get it reduced to 3000 per day. It seems a crazy way to determine dosage.
I'm glad Xeloda is working well for you, you are an inspiration to me.
Take Care
Debs xx
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Kabuki I think you are right about those that are ER+ but PR- HER2- are more resistant to treatments. That is what I am and I have not gotten a treatment to work more than 4 months..I just finished 5th line.
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Grannax, it's good to hear from you and I think taking a few months off to spend time with family and friends is a great idea. I'm focusing on that this summer as well!
Dee, thank you for the link to the clinical triaI . I know we spoke about it when you contacted me privately a while back and I appreciate it. I like my oncologist but he is very old school and has pooh-poohed any suggestion that my neuroendocrine features should be factored in to any treatment decisions, so he wouldn't order the tests that you had recommended based on your experience. Depending on how doxil works out I will definitely keep this in my pocket although I do have serious financial limitations etc etc etc.
He did say that at this point my liver is only 5% compromised. My blood work has been pretty much all within normal range most of the time but I did notice that my last blood work showed a big spike in my ALT... or maybe it was AST, I need to go back and look it up.
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NicholeRod, How frustrating for you. I’m still waiting for the FISH test for Herception. The oncologist said even if it comes back negative he may recommend Herception. He said in some cases they are seeing some success with the drug.
I’ll let you know what he says the next time I see him. I was PR+ with the original breast cancer do the histology is changing to adapt. Not a good thing
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NicholeRod,
This is the study that I found
https://bmccancer.biomedcentral.com/articles/10.1186/s12885-015-1121-4
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Kabuki...wait...I am confused what was your original... ER+ PR+ HER2-??? My originial BC Stage 0 was ER+ PR+ HER2-...recurrence Stage 4 was ER+ PR- HER2-....and my HER2- (at that time 2 years ago) was 0% for HER2+..... I don't expect that has changed except to go to Triple Negative....
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NicholeRod,
My primary 11 years ago was ER+, PR+, HER-.The liver biopsy was ER+, PR-, and waiting on FiSH for HER2 status. It looks like HER2- but the oncologist said that if a small amount is shown they are treating with Herceptin
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Will be cross posting on Bone mets thread.
I just got a call from Nicole a few minutes ago. I hope I can relay this well, in tears trying to write this and was in shock to hear where she was when she called. Nicole is in the hospital. She fractured C7 this morning when she woke up. I didn't get to speak to her long because she is on alot of pain medication right now, she said that there isn't anything they can do about the fracture. (Could they do anything?). She asked me to let you all know where she is and I know she would definitely appreciate prayers for her as she said and sounded like she's in a lot of pain.
I hate this disease, i really really do.
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oh no ! Hopefully they can manage the pain . I can’t imagine how awful that feels.
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oh no. Poor Nicole. She just can’t catch a break. Surely there is something they can do to stabilize the spine??? Nicole, thinking about you.
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I am so sorry to hear this. They have got to find good pain management for her
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