How are people with liver mets doing?
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BSandra, I have worked as a nurse navigator for breast cancer patient for years. Even though this was my area of expertise, I ended up here despite my best efforts. We are a gene negative but high risk family so I was planning prophylactic mastectomies. After a normal mammogram I had a final screening breast MRI. They found a 1,5cm mass and could see my liver and thought there might be something there too. Yup stage 4, surgery off the table. I was just a few months too late. I am back working and keep my eye out for ER - PR - HER2+ as I have an interest and soft spot for those like me. I wondered if they had missed something on my mammogram that could have been caught 5 months earlier? Why didn't I get to be an earlier stage. Cancer with these bio markers is just that aggressive. Often earlier stages of high grade finish their year of Herceptin to reoccur stage four a short time later, giving cancer a chance to mutate and seed. I cope by saying that I'm lucky that I will not stop treatment. Sure there maybe cells hiding that no one can see. I do know that De nevo ER-PR- HER2+ tends to spread to the liver and a large group of us are NED and still here.
So I'm sure one month delay in diagnosis did not change too much, I'm sure she was already stage 4 and if she wasn't after they stopped the year of Herceptin it would have came back. We are not ER positive so there is no endocrine therapy they would have given her, no treatment. Just want to maybe help you see it differently. Maybe the delay will be what saves her life. They are coming up with a subcutaneous H&P injection. Sure it is hard to think you might not be able to travel for more then three weeks. My research indicates they are trying to figure out if it is ever safe to stop after years NED...I'll stay on it as long as they give it to me. For a small percentage it is but for many It is not. I don't want to risk a good thing..Thinking of you both,
Barb0 -
Alabama- In your pocket for your scans.
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Hi Saulis. I had initial tx of TCHP in 2015 followed by a year of Herceptin, Letrozole & Zometa. MO stopped H and switched me to Xgeva & Aromasin 6 mos later because Letrozole was killing my joints. Now I'm on Tykerb and back on Letrozole because that's the protocol. I haven't updated my profile, but I'm on my 5th cycle of Tykerb. MO prescribed it when suspicion of liver mets arose, but I'm not sure if it's working since the 2nd PET showed no change. Once we get results for HER2 status, I'll talk with MO about the tx plan.
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Grannax, thanks and I agree. I've already learned so much from reading past pages.
Dee, good luck with your scans.
Best wishes and hugs all around.
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Hi Ladies - I just got my markers back and I am up 10 points. From the time I've been on halaven I've been down about 200 points, stayed there a few weeks, now seem to be coming back up? I am due for a scan this month but wanted to get a sense of those on (if they are still on) of signs that they needed to switch treatment. Thanks!
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Dee...good luck with scans here sending you ((((hugs))))
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Hi all. I have been reading here for awhile and post occasionally. My oncologist called me this morning with news that after four years on Ibrance/Letrozole I have progression in my liver (ten new spots) sternum, and spine. I expected the news simply because of the speed of the appointment. She is trying to get approval for a liver biopsy to determine if it is still all BC. Her thoughts are to switch to Xeloda if possible and I post here because so many of you have experience with this. I appreciate your suggestions and prayers. I have been a Christian for many years and trust that God holds me in His hands and will be with me each step of the way. I know my Redeemer Lives and in the end will stand as Victor of all.
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Light, fwiw a liver biopsy and Xeloda seem to me to be the correct next steps.
Nbnotes, hoping you get through this rough part quickly and settle back into an effective, tolerable treatment.
Moth, wow, your onc is just Little Miss Sunshine, isn’t she? She is ticking me off. I wish you could have an onc who is more encouraging.
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Hi friends,
I hope everyone is doing ok.
I have not been able to keep up with this list recently as I'm homeschooling my two kiddos! So apologies for jumping in her with all MY stuff.
Found out today that Everolomus + Flasodex not working for me after just 2 months. So I'm onto my 7th treatment in one year. Whew. I am exceedingly grateful to my awesome liver which continues to function well despite a very heavy cancer burden.
My MO wants me on Carbo + Doxil. Typically used in ovarian cancer and TNBC. But cuz my cancer is acting like TNBC, this is her choice. I also responded very well to AC last summer (the only chemo I responded to), so that is also why we will try this. I was really wanting to do Y90, bu t she feels like it will burn all my systemic treatment bridges and doesn't want to do it yet. So we hold.
Would love to know if any of you have don't this regimen. Any thoughts?
Thank you so,
Leda
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Dear bstein, there's a lot of truth in your words - I try to see it differently, I do not blame anyone, especially her... I am happy she gets HP treatment too, and that liver is 2 years NED but it is very scary as she progressed on HP locally in the breast with inflammatory features. means there were some HP resistant clones (not surprising as initial tumor size was so huge). She reacted well to added chemo (docetaxel one more time) again and had a mastectomy (pathology found cancer in the skin and another 1 cm tumor) and radiation. 7 months have passed after radiation, she feels very well now, and I pray every day this continues. We can just hope but any month won in this fight is important...
Dear Bliss, thanks for explanation, but I am surprised your MO stopped Herceptin after one year. Hope biopsy answers last questions and you can come back to NED soon!
Saulius
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Thanks Saulius. Many are surprised she stopped H, but she's kind of a less is more doc. My cancer burden was so low and I was more hormone positive than HER2, so she thought I could stop it. I agreed with her at the time, but in hindsight that may have been the wrong move. Awaiting results if I'm still HER2 or not.
My best to all.
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Saulius....you wife has progressed?????? When did this happen I thought she was NED what did I miss or am I wrong???
Intothelight...I am sorry you progressed...and you are confirming my fears and what I been hearing about Ibrance when it fails... lots of mets once it fails.... UGHHH!!!! Well I still kind of envy you 4 years on 1 treatment...some us can't even get 4 months...
My personal opinion on Xeloda is not good. Goldie is the ONLY one I have met with LONG term success on Xeloda and I don't know that all consider "stable" to be success...I mean yes, it's better than progression...but ya know what I mean... between Facebook and here she is the ONLY person I met with any long term success. If I had the choice to do over I would have went straight to doxil. Its easier way easier and seems way better to me just MHO.... If you have any specific questions of course you would get a lot more answers in the Xeloda thread..you can PM me too! (((((hugs))))
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Dear Nicole,she was NED until Feb 2019, then progressed locally in her breast with everything else being NED further, and after all above written procedures (chemo, mastectomy, radiation) she's NED again. Hope that stays for many years to come... Saulius
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I'm still doing liver function tests every 3 days and the numbers are jumping all over
makes me think the MO is correct and this is progression and not damage from treatments - as this week is my "off" week. Only getting the ipatasertib/placebo until tomorrow, then really off every chemo/immunotherapy for a week. Scans May 11. I'm not feeling optimistic.
And then if I have progressed I have to make a decision on Wednesday between xeloda or gemzar +cisplatin. How am I supposed to decide??
I've become a superstitious hippie person. Eating foods to "strengthen" the liver. No supplements just foods. I feel like I'm grasping at straws and suddenly threw all my evidence based practice training out the window
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Hi Nicole, rapid liver mets progression has occurred while on just Aromatase Inhibitors, before Ibrance was on market. It is just the nature of our specific cancers. This is from my MO plus literature I have stumbled upon in my copious readings.
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Sandi...I see what your saying...but I met 3 woman on FB that had what was refered to by their MO as "an EXPLOSION of mets"...with one of those MO's telling his patient he is not prescribing Ibrance any longer as too many of his patients had Massive increase in Mets once it fails....unlike anything he has seen in all his years or with any other treatments he puts his patients on.....
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bbpie , sorry to hear about your reaction to Halaven. Hope everything goes well with your next dose.
Bliss58 , sorry about the diagnosis of liver mets. Hopefully your next treatment will take care of this. Do you know what you will be getting?
Grannax2 I am so sad to read about our dear friend, Gumdoctor. She went through so much. Hopefully she is in a pain-free world.
I had a PET scan last week and the results were mixed - liver mets were stable or slightly increased but all the bone mets showed progression. My MO recommended that I get a tumor marker test and if that showed an increase, I will have to start on a chemo or Piqray. I am not very enthusiastic about either of them! I have gone through 11 lines of chemo with progression every 4 months. I haven't stayed on a treatment for too long since I got diagnosed with liver mets in late 2018.
At present I am on Letrozole since Jan2020. It felt great to be normal and eat all the foods I love! I'll find out on Friday about my next chapter - stay on Letrozole for some more time or move on to something else.
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intothelight......I’m sorry you are moving on from ibrance! I’ve so admired your dance! I’m praying for you! Maybe even back on a CDK’s after it’s under control once again😊
I’m praying that the rebound effect will be controlled when my treatment stops working and I have to make a change. The “rebound” effect that happens(per my, MO) once's our treatments stop working on the tumor is like holding a beach ball under water and letting it go. My hope is that the progression rate will come back down over time and a treatment change will halt progression too. Is this correct or should I be more concerned with my treatment plan
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S3K5- I’m sorry for the mixed results. It sounds like you and I have similar problems- what keeps my liver stable doesn’t help my brain, what keeps my brain stable doesn’t work for my liver. In your case it’s your bones and liver. May they find the right balance for you to keep them both stable.
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Sk35, thank you. Sorry to read of your mixed results, but hopefully the next treatment will be the success for you. Fingers crossed. I'm still awaiting genomic testing results, so I don't know yet what treatment I'll be on, and won't talk with my MO until then. She did previously mention y90 to me, but we'll see.
Best wishes to all and big virtual hugs.
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I have read your reports and care about each of your situations. Prayers for wisdom and healing and good results.
MY Great news! 🙌🏻 RESPONSE AND SHRINKAGE of current liver tumors and they did not light up on PET which means they are not active. These are the ones that had Y-90 and bland embolization. 1 small lung nodule weakly lit up that was seen on previous MRI- we will be watching it.
Home MO recommends staying on current medications. Afinitor/Faslodex/Sandostatin.So good to be able to say that for the first time! 😉We will need labs to watch WBC and ANC, probably weekly.
Sending scans to MD Anderson and will have video call with her after she reviews them. Their reports are much more detailed than my home clinic. So I am hoping those diffuse small mets that were previously reported on MRI andCT are just plain gone since nothing lit up Or showed beside the one in the lung.
Next scans in 3 months. Hopefully in TX but we will be smart.
PRAISE GOD. This is a such a joy to report to you all.
💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻HAPPY DANCE
Now COVID has to go so I can see my kids and grandbaby again.
Dee
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Praise GOD DEE!!!!!! AMEN!!!! So happy for you!!!!
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Dee, that is WONDERFUL!!!!!!!!!
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Wow Dee! That is absolutely fabulous news! You dance that happy dance. So very happy for you.
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Dee,
Terrific news! So happy for you.
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Thanks SK35. I wasn’t able to have the Halaven treatment. My liver enzymes increased and bilirubin jumped from 1.7 to 8.8 in only one week! I am so perplexed as to the jump after the stent exchange. I asked for Ct scans. An antibiotic to rule out infection. I have a 2.5 cm new tumor in my left lobe, nothing in the left lobe since August 2018 when mets were first diagnosed. Moderate ascites, narrow hepatic vein. MO also stated the bilirubin just doesn’t go into the liver and ducts it’s also in the tissue
MO is strongly suggesting to start hospice. I asked her what exactly will happen is similar to what I’ve read and on these boards and the thread a place to talk death and dying issues. I will eat / drink less, sleep more and eventually go to sleep. It sounds simple but does not lessen the fear of the the unknown. Given my situation I may have 5 weeks.
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So bbpie, are there really no other options? It just seems you still want your life. Anything? 2nd opinion?
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Yes, I have a strong will to live am not ready to give in. I’ve been asking since the beginning about Y90, chemobilization, surgery, radiation all the things I’ve learned in these boards. They are treating the cancer as a whole. I’m sure my long list of meds were keeping me stable with minimal growth at times. The Taxol worked in the beginning, I know the MO discusses with the tumor board to help determine a course of action. It’s an a great idea to get a 2nd opinion, but will they tell me the same thing? I think my liver is not processing the meds as they should. Thanks for listening
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Bbpie, would you consider a second opinion? Aren’t there any options of targeted treatments for you? Any local treatments for the liver? I feel so sad to hear that your MO mentioned hospice.
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Great news Dee!
bbpie - keeping you in my thoughts that you will find another option.
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