Anyone 5+ years with liver mets and ER+ Her2-?
Comments
-
Nicole, That's a good question. In 2012, before it mets in liver, it was a grade 2. He did not discuss what it is now and have not received my copy of the pathology report yet. We are still waiting on some further genetic testing. The onco type was done in 2012 and yes, onco type of 7 is low. My doctor in 2012 decided, because it was so low, that chemo was not necessary. So I did lumpectomy and radiation and tamoxifen/examastane. So in August, I went for my one year follow up my ca-15/tumor marker had elevated. We were surprised. Have you had any side effects on your medications?
0 -
Well..you should be glad you are a Grade 2 I am sure that hasn't changed. I am a Grade 3.
The ONLY good thing (if we can call it that) about Grade 3 (from what I am told) is that it responds well to chemo. I too never had any chemo with my first breast cancer it was a Stage 0 in 2014. I only had Lumpectomy and Radiation. I refused the Tamoxifen because really they said the stats were the same for the people at stage 0 that took it and did not take it . Any way here I am now. As far as side effects the Letrozole gives the most...lots of hot flashes of course. The Ibrance kept lowering my Neutophil count so after the 1st month on the highest dose of 125 we reduced down to 100mg I stayed on that for 2 more months but then I got these 2 mouth sores...OMGOSH they were horrible....1 canker sore and 1 fever sore that turned into a canker sore...I had to go off the Ibrance for 14 days until they went away. So now they dose reduced me again to 75 mg. I just started that last Friday. I am on my 4th month of Ibrance. So besides the mouth sores and low blood count I would say I have had and still do off and on eye twitches, fatigue and most of all sore joints but I think that is from the Letrozole.It's minimal and I am grateful, compared to what some experience with chemo. I am going to PM you.
0 -
Schnauzermom and Sandi beach.....what grade are your cancers? It looks like the Grade 1 and Grade 2 have the most positive longer NEDs...?
0 -
NicoleRod. I do not have data from my liver bx that indicates the grade, Ki67, luminal, etc. I believe since I was in an emergent situation, that the hormonal data was from the FNA (fine needle aspirate). I do have bx material, just saved at this time. No Foundation1 was sent as my MO wanted to wait to see how I responded to Tx. When I progress, a fresh bx will be sent. I did have blood drawn for genetic mutations..none found at that time.
The DCIS in 2006 and 2007 were both high grade, comedonecrosis, sentinel node negative, ER+PR+ with close margins. My MO suspected there were some IDC cells out there, but couldn't find them and you just can't put someone on chemo without proof! 10 years later..well, here I am.
I do not know why I am still responding. At the start of 3rd year of mets dx, my MO is now alternating CT/bone scan with MRI abdominal scan every 3 months. I still have monthly labs with Ca15.3.
Just a final note. I am protective of my liver. I carefully research any supplement that might put unnecessary burden on my liver. My MO knows and advises me if she has concerns. I had widespread mets.
No regeneration will occur where the lesions were as there is no parenchyma to help regrowth. This is what my MO told me. If the remaining tumors did not respond with tx, she would have considered some form of ablation. But that came with a warning that she had seen tumors grow back in those treated lesions. Thankfully, my liver responded..it took about one year.
Ask me any questions..always want to help a fellow metser.
Also, I will attach the liver mets link. Others might like to reply to your question.
https://community.breastcancer.org/forum/8/topics/...
0 -
sandiBeach- please let me know if I should PM these kind of questions or two many questions!! I’m so happy you are NEAD and doing so well on treatments. What a inspiration to read😊. I’m wondering about your monthly Ca.15 tests. Does your MO feel like it’s accurate? Is it in the normal range each month? Does it reflect your scan results? My MO gets mine each month and mine has reached the normal range after a year of treatment. Now I hold my breath each month for the results and this month he hasn’t released them yet😬. I had a scan before I started I/L and finished carbo/taxol that showed reduction in all tumors then moved me to I/L. MO said scan on TM or Symptoms or if I request he will order. I’m PR-95%,ER5%Her2-. Thank you for sharing 💞
0 -
NicoleRod, sorry that I don't my cancer grade. Good question. Probably I should try to find out.
0 -
Hi Newbreath, I don't mind answering your questions..it could help others. Shetland might be pondering why this discussion is on this topic! But if she forgives me, I will certainly tell you about how my MO addresses my CA 15.3. Meanwhile, I will find the appropriate thread to continue any discussions on tumor markers. If I find it, I will edit my response to include the link.
My Ca15:3 is ordered only to MONITOR THE TREND of the tumor marker for breast cancer. So based on that, I have never run in the normal range and my MO would never change course of tx based on a Ca15:3.results. If there is a dramatic increase, we are to repeat for several months, then if a trend upwards is recognized, then a scan will be ordered. With saying that, some folks the Ca15:3 is NOT reliable source of info for their cancers. Sometimes I have a slight increase due to inflammation.
https://community.breastcancer.org/forum/106/topic...
0 -
I would like to share my experience with liver regeneration, as my experience was different than what SandiBeach's doctor mentioned. In 2016, after I failed my first line (Ibrance, Aromasin and Faslodex), my liver had an explosion in 3 months' time to where my liver was 70% mets and virtually the entire left lobe was mets with no healthy liver tissue. After I started Xeloda, the lesions shrunk, and continued to shrink over a year's time. At best since then, my liver has been 10% mets (but all inactive). At worst, 30%, despite failing numerous treatments since then, each time in my liver. My liver regenerated the areas that were previously mets. In live liver transplants, a portion of the healthy donor's liver is removed with the idea that it will grow back significantly.
0 -
sandibeach5, I’ll reply to you on the tumor marker thread. Thank you for adding the link. Sometimes the discussion can hit on multiple threads. I don’t have a lot of experience with communication on the boards and when I read your post about “ask me questions”. I just didn’t even hesitate. Sorry, i’ll Be more alert to what thread I’m on.
JFL, truly fascinating how robust our liver is. That makes me really admire the work it does! I was devastated after 10 years of thinking I was cured to a liver full with widespread mets. This regrowth really gives hope! Your excellent explanation makes feel like it’s possible for ourtreatments to kill or put to sleep our cancer cells and regrow healthy non malignant tissue?
0 -
JFL, I'm hoping for an appointment with a new oncologist soon and plan to ask her about Xeloda, so your post gives me encouragement!
0 -
Lol, SandiBeach. Thanks for keeping up with this thread! To our new sisters, I do recommend the thread Sandi linked called “How are people with liver mets doing?” It’s kind of liver mets central, where we discuss treatment, scans, tests, and just the whole liver mets experience in general. Lots of people there, so there is usually someone who can address any question or direct you to a thread with a detailed discussion of it.
A note about NED/NEAD. There is someone here on BCO who has survived quite a along time, and she has never been NED/NEAD. I wish I could remember more right now, but I can’t. We all want NEAD, but it is possible to do well without it.
0 -
Shetland, I think it is Janice (enjoyeverysandwich). She must be going on 9 years or so now.
For newbies with liver mets who have not yet discovered it, I also recommend the liver mets thread that Sandibeach and Shetland mentioned. It is a great thread and I have learned so much there and received so much support..
0 -
Bump.
Just interested to see if there is anyone out there who has liver mets, ER+ and HER2- and still have good quality of life at 5+ years..
0 -
0
-
Agree NR.
0 -
Hello,
Posting an update here. Today is 8 years since I was diagnosed with liver mets! I am very grateful. Still doing pretty well. Some meds have not worked, but I've been on Verzenio for two years now, and it's been effective thus far. Never been NED, and there have been some hard times, but,on the whole, a pretty good quality of life. I do hope the checkered history of this very ordinary person can give hope. Wishing you all well !
0 -
I forgot about this topic. Thank you for posting your good news here!! Shetland started this thread.
May I ask you if you ever had genomic testing, like F1? If so, what was found? I see you are ILC. What scans worked the best for you?
I am so happy you posted, mainly to know you are doing well in our cancer met world.
0 -
SchnauzerMom, congratulations on teaching the 8-year mark. Your experience certainly gives others hope
0 -
SchnauzerMom you give us hope even though our roads through cancer may be different. Thanks for posting!
De
0 -
SchnauzerMom WOW just WOW !!!!
0 -
Schnauzermom, “checkered history” indeed. Congratulations on eight years, and thank you for posting and giving hope.
This month marks six years since I began treatment for mbc, liver mets, ER+PR+Her2- ILC. I gave my oncologist and oncology nurse some gifts and notes telling them how much I appreciate them. It just seemed like a great time to do this, having reached the six-year mark together. There have been fairly normal times and other times when things got complicated and I did not feel well. Still glad to be here! “Fall down seven times, stand up eight.“
0 -
SP you mutated to HER2+??? and Wow I so envy you you got like 2 years out of a few treatments
0 -
SP- Yes celebrate 6 years. A milestone for us.
This month I am celebrating 3 years with MBC--- wow hard to believe it has been 3 years already. And I am on first line therapy--- sorry NicoleRod. I am thankful, but waiting for the other shoe to drop. The tide has to turn at some point. Next scan on the 28th, will it be this scan???
0 -
Candy NOOOOO you will stay Stable!!!
0 -
Nicole- That is what my MO said. We was talking about my white count issue with Ibrance and I said if scan shows progression we would be making med change anyway. She said "It will be stable".
0 -
Nicole, no it did not mutate to Her2 positive. It is still Her2 negative and has developed a Her2 (ERBB2) mutation, thus the phase 2 trial that includes neratinib and herceptin for several types of Her2-mutated cancers. It is a case of being unlucky-lucky for me. I do seem to have a pattern. So far, when something works, it works fast and I get NEAD for two years. When something doesn't work, it clearly doesn't work and I move on. The original cancer was grade 1, but I had the mets after three years. The biopsy at mbc diagnosis showed grade 2. It is typical for ILC to be grade 2. Wishing you your “magic bullet", Nicole.
Now there’s Schnauzermom, eight years and never NED. Who can say how this all works?
0 -
same for me. I am 10.5 years out. Just diagnosed with liver mets. Going back intoIV chemo.
0 -
Bump.
Just seeing if there are any others who have been treated for liver mets for over 5 years and ER+, HER2-.
0 -
0 -
I know Nicolerod. .be nice to have a little hope.
0
