How are people with liver mets doing?
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@husband11 - Like others, my heart breaks for you and your wife right now. I'm praying for both of you.
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Husband 11 - Liked others here it is hard to know exactly what to say. I am so sorry to hear about your wife. May you both find comfort during this time. Hoping you can feel the love and support from this group albeit not in person.
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Dear Husband11, It really is heart-breaking, I have no words:/ As you are your wife's fiercest advocate and care-taker, it is our privilege and honor that you are here with us. If you think there's something we can help you with, we are always here. Lot's of hugs,
Saulius
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Thanks all. Her problems are on many different fronts now, the ammonia in her blood from the tipps procedure, her fatigue, her terrible, terrible cough, and now the rising tumor markers. Its overwhelming. We have no idea what brought her cough on around 10 months ago, it started with a cold and then covid, but its lasted way too long. She did have something show up on her xrays of her lungs, and it has cleared up on the imaging (say 5 months ago), but the cough has gotten worse. Her fatigue is terrible, she is up for only a couple of hours a day. I suspect its the ammonia from the tipps procedure. After the tipps, your liver doesn't detoxify ammonia as efficiently, so it builds up as a toxin in your blood. She is on something to combat it, but it continued to rise. And her fatigue is still very prevalent. Her mental confusion is gone though.
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@husband11 I wanted to send my thoughts and prayers for both your wife and yourself. It's good that her confusion has cleared up. Hopefully that is a good step in the right direction. Please take care of yourself, too.
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Hello.. unfortunately I am coming with some sad news: our dear Nicole passed away on the 23rd of September. In case someone want to write their condolences, please write to beesy_the_other_one - she will pass them on to her husband David. Yours,
Saulius
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I’m so saddened to learn of @nicolerod passing. I hope she met her goals of being together with her family, she so very much wanted. I am sending my condolences to her Dear Husband and her family at this time. My prayers are with them.
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I am very sad to hear of the passing of Nicolerod. We discussed many matters relating to this disease, and strategies to combat it. She cared so much for her family, and I hope her dying wish to have them all together came to fruition. I would also add that her faith in God was strong and that she died firmly in the belief that she will be with her lord and saviour.
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Condolences to nicolerods friends and family. She had such a difficult time trying to find a medication which would work for her. which caused her so much anxiety. I hope she has found peace.
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thank you for letting us know, Saulius
It is a strange and funny world we live in. I am probably perversely pleased that her last post on this board ( was it in July?) was very coherent. Nothing in life is more certain than death and I hope Nicole had a good one - feels that I will see again her posting here - strange to think I will not …
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Dear anotherone, yes, I absolutely agree that we live in a funny world, and Nicole will be dearly missed:/ I know she hears and reads us, and therefore I am very happy I got to "know" her and that she is part of everything that happens here. And she always be.
Saulius
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Dear all,
I found out of Friday that Xeloda is not working either. This is my 3rd line of treatment since Jan when metastasis to the liver has been confirmed (only had 3 small tumors at that time); we tried Ribociclib for 5 cycles and it didn't work, Alpelisib for the PI3K mutation which worked for 1 month only and then Capecitabine for 2 cycles. My liver is in the meantime infested with tumors, they extended to the spine, supraclavicular lymph nodes for which I made radiation in Sept.
Now I'll start Paclitaxel (which I've been taking 6 years ago when primary diagnosis and except allergic reaction it was ok in terms of tumor shrinkage).
I feel a bit desperate I must say as I'm going thru treatment options with such speed; is there something I'm missing/my doctors are missing?
I am in the Netherlands and although the medical system is good, I feel US is so much more advanced in the onco area and I have found so much useful info here, maybe someone can advise what to do, where to look, is there something we are missing?
The mutation analysis is: "A pathogenic mutation found in exon 21 of the PIK3CA gene (c.3140A>G, p.H1047R)
in 77% of reads.
In the Ion AmpliSeq panel being tested:
AKT1 (exons 3, 6),
AKT2 (3),
AKT3 (2, 7, 13), BRAF
(11, 12, 14, 15), FGFR2
(6, 8, 11), FGFR3 (7,
9, 14, 16, 18), GNA11 (4,
5), GNA14 (5), GNAQ (4,
5), GNAS (8, 9),
HRAS (2, 3), IDH1 (4),
IDH2 (4), KRAS (2-4),
KRT1 (1, 2, 5, 7),
MAP2K1 (2, 3, 6), MTOR
(30, 39, 40, 43, 47, 53,
56), NRAS (2-4),
PIK3CA, PIK3R2 (10),
PTEN, RASA1 and TEK
(17, 22)."ER positive 90%, PR negative, HER negative
On hormone therapy with zoladex only, they stopped fulvestrant as no response.
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I'm sorry to ear that.
I'm in Italy and feel the same way you do. Like US is so much more advanced. After ribociclib they immediately put me in capecitabine, and I don't think in US they would of. They didn't try any other EI, or anything else, and my tumor wS 98% estrogen positive...
I read of many good cancer center in USA that offer virtual second opinion, may be worth trying? Thay are expansive, like up to 3 or 4 thousands euro, but if can be an option for you, you may want to try that...
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Have you talked about Enhertu @kariz with your team (we apologize if you've already tried it, and we missed it)?
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Dear @moderators , I have not talked to them about it; it is a great idea, thanks a lot for the suggestion, I’ll talk to them about it.
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@kariz 🤗
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Hi Kariz,
I’m sorry and I understand… I’m on my third treatment line here in the US and so far nothing has been successful that we’ve tried. I am in a clinical trial now after getting a second opinion. I am on Everolimus and a trial drug called ARV-471 which is an estrogen downgrader. I agree with the mods talking to your doctor about Enhertu is a good option. You could also talk to your doctor about Affinitor (Everolimus) and exemestane. Is Capivasertib approved where you are or are there clinical trials? It is being fast tracked here in the US and expected to be approved by the years end. Have you had molecular profiling done on your tumor? If you have an ESR1 mutation there is also Orserdu. Those were just options that were mentioned to me along with other IV chemo. My doctor hasn’t changed my treatment quickly though. We’ve waited at least 3 months each time because she said sometimes it takes that long to see if a drug is effective. But policies may be different there. Hope this helps.
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Dear @amel_83 , thank you for the support, sorry to hear you are in this situation; did they test you for the PIK3 mutations? For me Alpelisib was the 2nd treatment after ribociclib and before capecitabine, as I had the mutation.
I saw on some other thread which I cannot find now that you posted a pic that I saved, thought it was so interesting; could you please give some more details about it, is this something your team tested for you or how did you come across it?
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Dear @mommacj , thanks a lot for the tips, I'm going to ask my team about all of that.
Sorry to hear you are going thru the treatment options so fast as well; they waited for a bit too long in my case with ribociclib, but with Alpelisib and capecitabine they were quicker than that (changed it after 2 months each), as my tumors have been growing so fast.
Wish you and everyone lots of strength.
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Hi, thank you for your answer!
The image you see is my proteomic test, that show what proteins are more expressed in the cancer.
It is useful to see if certain drugs may will work or not.
I also did a liquid biopsy, that show I don't have any of the 50 mutations that they tested, so no Alpelisib for me...
I think that is why they put me on capecitabine, as I had no mutations, with a high expression of TYMP rotein, that is been related to capecitabine response (it was 10000, and in the results was written it was one of the higher ever recorded, which kind of scarred me...)
Good luck for everything!
Amel
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I'm on ORSERDU (Elacestrant) an oral SERD. I start month #3 in two days. I've started to have dull pain over my liver (right upper quadrant) and into my back. It started out intermittent and short lasting, but is now continuous day and night. I had significant progression in my liver (biggest lesion 3.5 cm) before starting this drug and suspect it is not working. I have labs and see NP early next week. I will probably ask for scans sooner rather than wait the full 3 months. Anyone else with liver mets, have liver pain?
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Weninwi - On my last CT in August I was surprised to find out I had liver mets. I have "multifocal" lesions in my liver that measure up to 13mm. Had they not been caught on the CT I would not have known the difference but maybe they are too small to be a problem yet?
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I have 2 lesions of 5 cm, and other small ones and no pain...
Before I had even more extended and no pain...I guess the pain may depend on the location, as from what I understand liver doesn't have nervous terminality, so shouldn't hurt (?).
So I don't think the fact that hurt definitely is a bad symptom...mine was larger than yours and zero pain...
Anyways I wish you good luck!
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amel,
Thanks for the comment. I also have bone pain for the first time and intermittent H/A. First thought always goes to cancer progression. I saw a NP today and I'm going to have bone scan, CT of chest/abd, and MRI of head. I just hate all these tests, but if I'm progressing I'd like to know. Thanks again.
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Anyone experience a partial blockage of the small intestine as a result of metastasis? My wife is currently hospitalized because of a blockage, and the cause is speculated to be cancer. They don't think she is strong enough to operate on her. Anyone have it and have it surgically relieved? Or through radiation (if possible)?
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@husband11 I just saw your post now. Perhaps you could start a new thread to get answers. I have had bowel blockages, but sodium magnesium was used successfully. I'm sending prayers for your wife.
Laurel
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We got very bad news when they did exploratory surgery to look at her bowel obstruction. It turns out that a tumor is wrapped around an upper area of her small intestine, and the whole of the intestine is peppered with small tumors. They can't do a re-section of the intestine, as the small cancer all over prevents making a proper re-connection. The obstruction is too high for a colostomy bag to work, as no nutrients would be absorbed by the very short area of open intestine. They say they can't put in a feeding tube, as her ascites would prevent healing of the surgical wound. They say the area of the tumor moves too much to do radiation treatment. I am not confident of a surgeon who is not an oncologist, giving oncology advice. However, they did bring in some sort of oncology person (not sure if she was a Doctor) who told us no treatment is possible and we just have to wait for her to die.
So, she is currently on TPN (total parenteral nutrition) which is intervenous. They say no cancer treatment is possible for someone who can't eat, and Tpn would not support any sort of treatment, not even an antihormonal like fulvestrant.
So, they have told her she has 2 days to 2 weeks to live. She has a private room, family is gathering around her, and we are having to say our goodbye's. We are all stunned, as a CT scan and MRI earlier in the week gave us no indiction of any problem. Cancer was pronounced to be relatively stable. All I can say is we are stunned. Stable to death sentence in the same week.
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Husband11,
I'm so sorry. You've been a remarkable advocate for your wife. You and your wife will be in my thoughts and prayers.
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