Topic: How are people with liver mets doing?

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Aug 16, 2013 04:02PM

Posted on: Aug 16, 2013 04:02PM

blondie1 wrote:

I continue to be very scared once I found my liver mets progressed after having to go off doxil. I am hoping to find some support in alleviating my deep seated fears by hearing other stories of people living and dealing with liver mets. My onc says I have such a petite frame (105) that an enlarged liver will definitely cause me some pain until chemo takes care of it.

How are others doing and getting through this with a positive attitude?

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Oct 18, 2017 02:38PM momallthetime wrote:

Artist from what I know Cipro and Levaquin are a nasty bunch, maybe strong atibiotics, but Levaquin cause my sister to go bunkers, and Cipro could cause what you are saying. One thing, maybe is to lower the dosage lie 250mg instead of 500 etc… And it could cause GI issues also.

Grannax thanks for the info, let's see what the guy says tomorrow.

Z interestingly i know of someone that had liver mets,and she itched terribly, until we put 2 and 2 together, she was using Atarax it helped somewhat but it makes ppl sleepy. I do think it has a correlation.

Bluebird the liver biopsy results did not take more than 10 days. Not to worry, Onco at that time did not inform us, i kept calling and asking, and got somehow pathology, cytology to send it to PCP, so we knew b4 they bothered to tell us.Oh and waiting on the answers re: hot pack.

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Oct 18, 2017 08:21PM JFL wrote:

Bluebird, I use a heating pad on my liver (front, side and/or back) nearly every night. It helps with pain/aches. Hyperthermia is supposed to kill cancer. It is not thought that a heating pad is strong enough to have an impact on a deep organ like the liver but it can't hurt. On my first Abraxane, I even put a heating pad over my liver during the entire treatment. My liver was really sore for a week and I suspect it turbo boosted the circulation of chemo into my liver.

Chart your own course. Dx at 30. Dx with mets at 38 while pregnant - extensive liver & bone involvement. Currently on Enhertu & XGeva. ER+/PR+, HER2-low (IHC equivocal, +2/FISH negative). Y90 liver radioembolization in 2018. Dx 9/2006, IDC, Right, 1cm, Stage IIB, Grade 3, 1/16 nodes, ER+/PR+, HER2-, Surgery 9/22/2006 Mastectomy: Left, Right Chemotherapy 11/5/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/15/2007 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/2014, IDC, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2- Surgery 12/26/2014 Prophylactic ovary removal Hormonal Therapy 12/26/2014 Aromasin (exemestane), Faslodex (fulvestrant) Targeted Therapy 6/18/2015 Ibrance (palbociclib) Chemotherapy 3/10/2016 Xeloda (capecitabine) Hormonal Therapy 5/13/2017 Aromasin (exemestane) Targeted Therapy 5/13/2017 Afinitor (everolimus) Chemotherapy 8/17/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 3/22/2018 Doxil (doxorubicin) Chemotherapy 4/25/2019 Navelbine (vinorelbine) Hormonal Therapy 4/25/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 11/26/2019 Gemzar (gemcitabine) Hormonal Therapy 8/24/2020 Faslodex (fulvestrant) Targeted Therapy 8/24/2020 Piqray (alpelisib) Targeted Therapy 10/1/2020 Enhertu (fam-trastuzumab deruxtecan-nxki)
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Oct 18, 2017 09:16PM artistatheart wrote:

Thanks Bluebird, I'll give those a shot!

Mom. I just know that Cipro was a nasty toxic med. I barely made it to the last pill. I truly believe that is what exacerbated my problem with muscle weakness.

Dx 7/22/2015, ILC, Left, 4cm, Stage IV, Grade 3, ER+/PR+, HER2- Hormonal Therapy 8/9/2015 Femara (letrozole) Targeted Therapy 8/24/2015 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Oct 18, 2017 11:14PM LisaY wrote:

Hi everyone,

I just posted in the brain mets thread but wanted to let you know that surgery went well on Monday, and I am recovering in hospital, looking forward to checking out trials. Thanks for the info about your consult at DF, Rhonda.

I will keep reading this thread, I have a feeling that my liver mets are going to be acting up. I have a liver MRI coming up. This is a lot to process, isn't it? Does anyone here have experience with trials at NIH? There is one with TDM1 for patients post-brain surgery. There is so much going on right now, thanks for all the info about mushrooms, too.

Dx 7/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR+, HER2+ Chemotherapy 8/27/2016 Taxol (paclitaxel) Targeted Therapy 8/27/2016 Herceptin (trastuzumab) Targeted Therapy 8/27/2016 Perjeta (pertuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 18, 2017 11:44PM zarovka wrote:

Grannax - in my case when my liver mets are growing and/or under assault as they are with chemo and immunotherapy at the moment, I'll get rashes anywhere on my body where I put lotion, soap or sunscreen. My face blew up like a football from sunscreen 6 months before I was diagnosed even though previously I used sunscreen without a problem. Here the rash has developed where I sweat against clothes laundered in Japan. My theory is detergent. I washed everything with no soap the the rash subsided.

A couple of experts have confirmed that a stressed liver will present in skin symptoms generally and that skin sensitivity will develop. Not an expert in why, but it is an interesting possible source of skin issues that I had never considered.

>Z<

Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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Oct 19, 2017 08:56AM Grannax2 wrote:

Thanks Z. Kinda scary to think about. My next PET will be mid November, I think. As you know, in the August PET there was no up take in any of my liver mets. I'm trying to be hopeful that there won't be any new liver mets. But, I know it can happen. If growth is happening, there could be a correlation between that and "my face blowing up like a football".

I know it's not the same thing, but my husband's first symptom of pancreatic cancer was a itchy red rash all over his body. I understand how/ why that happened. The bile duct was blocked by the Cancer.

I'm going to pay more attention to my skin from now on. Hope you're doing well and coming to an end of your travels.

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Oct 19, 2017 04:00PM artistatheart wrote:

LisaY, i am so glad you came through your surgery OK! Phew huh? Now I hope you find that the liver mets are quiet and you find a good trial to get you back on track!

Dx 7/22/2015, ILC, Left, 4cm, Stage IV, Grade 3, ER+/PR+, HER2- Hormonal Therapy 8/9/2015 Femara (letrozole) Targeted Therapy 8/24/2015 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Oct 19, 2017 07:25PM momallthetime wrote:

Every day I think, we think can't get much worse, and then it does.

The Intervention Radiologist seemed smart (he does not look it, don't judge by the cover..) and caring. He was extremely concerned, he said and showed it to me on the screen, D did not want to be in the room, he showed how the tumors took 50% of the liver, pretty much the whole right lobe, the left is not so bad comparingly. First to the bottom line, he called the Hospital and cancelled some of the ppl he had on schedule for Monday, and told the assistant THIS is urgent and get her in. He said there is still a very small window, if it gets worse no one is gonna wanna do it.

The procedure: Let's say, Monday, it would be something like an angiogram, to make sure that no physical aberration would interrupt the process, and that there is no pathway to the lungs ( so this radiation does not get into the lungs)etc... if she is approved, then they would order this treatment from Syrtex in Australia, it is specially dosaged (my word) to the person, and it is time sensitive, in other words, it should be arriving about a week after the order, and they will call exactly what time she has to be there, then they insert this high radiation thingy, he explained but i can't relate back, and she is "suppose" to go home the same day. BUT she cannot be near the children for at least 3 days.

So of course she is very upset about that, her life is really being turned upside down. My SIL said he will tell the kids they are going away for 3 days and I'd move in, yes, but they are middle of the school year, they won't like it, they will smell a rat.

I asked IR do we have an option? He said no. Life would be much shorter. This monster needs to be stopped. The liver metabolized the chemo, and if she will need chemo of some kind, if it won't do the job there is no need for the chemo.

Going back to the AM, long long visit with new RO, she could not believe the amount of mets. Damaging ones at that. The orbital area, is in danger of causing visual loss it's that bad, nerves on the lateral is causing numbness, her shoulders, other lesions that are pushing into the skin on the chest, and much to her concern the thoracic she is very scared what she will find when she sees the MRI specific to the spinal area that she is ordering, she is afraid she will see dangerous compression. NOW, this girl was being cared for by top docs in top Hospital. I have an email i just reviewed from June, RO telling me she reviewed THE REPORTS, and it's stable. No it was not stable, and she did not bother looking at the images herself, i think, because this is a train wreck it did not happen overnight. I can't even, because i'll explode. How could they? New RO says you can't just treat little pieces always, you gotta look at the big picture. Conservative is not always good. And then I ask you, they know the situation, just do it damn it, what are they protecting her for 20yrs down the road, she told them this hurts this hurts, and they kept saying systemic systemic, of course you can't do every bone, BUT her pictures are horrible.

So new RO says oh this urgent, so i called her in the PM, and i told her you told us this is urgent, but IR is saying the liver is urgent. So she said liver is MORE urgent. She'd give her a break of one day after the Y90 and then she'd start her on extensive daily Rads for up to 3 weeks. Mind you, IR told me that after Y90 there will be great fatigue. I asked him what kind of fatigue, he showed me like the sleeping kind! So hmmm how are we gonna drag her to Rads....I don't know.

Grannax does any of this ring a bell for you? Did you go through the same steps? Was it very tiring after. I wish we could all hear from more ppl that went through it.

I asked how many he has done? He said about 150 p/year. The truth is from what he says, we don't have the luxury of waiting for appointments to get other ppl and delay this. And the other Rads are being held back because of this.

She is taking the Neratinib it's causing abdominal pain, i hope she could tolerate it.

Yes, my friends, honestly it's unthinkable.

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Oct 19, 2017 07:50PM Liwi wrote:

Mom I am so sorry for what Dani is going through. It sounds like her new treatment team has some good plans though challenging treatments. I’ll be keeping you both in my healing thoughts and hoping for much better news after the y90.
Dx 9/2014, ILC, Left, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 10/23/2014 AC + T (Taxol) Dx 4/2015, ILC, Left, 6cm+, Stage IIIA, Grade 2, 3/3 nodes, ER+/PR+, HER2- Surgery 4/1/2015 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 4/19/2015 Arimidex (anastrozole) Radiation Therapy 5/6/2015 Dx 7/2017, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 8/9/2017 Faslodex (fulvestrant) Targeted Therapy 8/10/2017 Ibrance (palbociclib) Dx 8/1/2018, ILC, Stage IV, metastasized to other, ER+/PR-, HER2- Chemotherapy Doxil (doxorubicin)
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Oct 20, 2017 05:41AM kaayborg wrote:

Mom, what a scary time and the decisions we have to make are never easy or clear cut. I wanted to offer you some of what I know about Y90 from my consultation about a year ago with an RO and my MOs comments to me when I mentioned trying it recently after carbo failed. I've been meaning to post this for a while as many have been looking into Y90 of late.

First, I believe I understand where doctors are coming from when they keep emphasizing systemic, especially for those of us with cancer of the rapidly aggressive variety. In the year since my consult, my MO had multiple patients try Y90 and it did not turn out well for them. She seemed very upset by this and thus, while saying she doesn't mean to practice anecdotal medicine, she just couldn't recommend it for me. In short, in the time they wait for liver inflammation to subside so they can begin systemic treatment again, mets popped up in other locations and they lost control of the disease.

Those with slower growing cancers or who have other systemic options available to them besides chemo and can stay on this while Y90 is done, I think have no reason not to try it. For others, I do have some reservations. I haven't completely ruled it out for myself but would like to put it further down the line, if I am blessed with more years, so there perhaps will be more data on what this procedure is doing for breast cancer patients and when it's best to try and when not.

The rads immediately after Y90 sounds tough and it surely will be but I think if Y90 is done, you simply cannot ignore other mets in the meantime, especially the brain.

Finally, I received different information from my RO consult regarding being around kids and other people. They said there is not reason to be as conservative about this as was once thought. No one should be right up against my liver for hours at a time (no sitting on lap all day or cuddle sleeping all night) but otherwise no restrictions. I was even allowed to teach my 6 and 7 year olds. He also said most do not experience excessive fatigue. Not sure what you do with that but there's a second opinion of sorts from my RO.

Prayers to you as you wade these horrible waters.

Dx 6/24/2014, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 7/16/2014 Lumpectomy: Left Chemotherapy 8/20/2014 AC + T (Taxol) Surgery 1/4/2015 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/31/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 7/24/2015, 6cm+, Stage IV, Grade 3, ER-/PR-, HER2- Chemotherapy 8/3/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 6/20/2016 Carboplatin (Paraplatin) Chemotherapy 9/12/2017 Xeloda (capecitabine) Chemotherapy 9/25/2017 Halaven (eribulin) Targeted Therapy 11/13/2017 Chemotherapy 2/5/2018 Gemzar (gemcitabine)

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