Topic: How are people with liver mets doing?

Forum: Stage IV/Metastatic Breast Cancer — 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 07:02PM

Posted on: Aug 16, 2013 07:02PM

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 26, 2017 08:46PM Grannax2 wrote:

Bluebird De. I think you know that I had y90 in April and May. It was very successful, August PET showed no uptake. Anything you want ask me, I'd be glad to try to answer.

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Oct 26, 2017 10:06PM - edited Oct 26, 2017 10:06PM by ShetlandPony

Grannax, to answer your earlier question: After a year of NEAD and then a year of slowly rising TMs on Ibrance + letrozole, my scan finally did show definite progression. So I switched to Faslodex + Afinitor, but after four months we could see it was not working. So then my onc put me on Xeloda. That was about 4 1/2 months ago. I had two weeks of Xeloda behind me when I went to see the interventional radiologist to arrange for Y90 mapping. At the end of that appointment that morning's tumor marker number came through on the computer, and it had dropped by more than half! So the IR and my onc said we should save Y90 for later since X was working so well. My TM has been very reliable and has been normal for three months. The IR is keeping me on his radar so we can employ Y90 at the right time in the future. I feel lucky to have these people looking after me.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast Surgery Lumpectomy
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Oct 26, 2017 10:22PM momallthetime wrote:

Zar when will you know how helpful all this trouble was? So your plan is to be home by next week? Well so sorry you missed out the terrible winds 😉

Artist how are you coping with your pain? Anything makes it feel better?

Hey Lalady1 I'll pm you, thanks for your suggestions. SO what can you do for D AND V? There is nothing stronger than fancy Imodium? Glad you were able to get chemo after all.

Shetland i'm glad things are working out for you. And it's really special to be able to relax with docs. Good for you. Grannax were the results immediate for you?

Jena I think we all adopted this name, actually I've been reading a lot about triple neg, and they have so many good treatments geared especially for triple neg, all new. You have many options. So sorry things changed.

Kaption oh my, no words. Are you remaining in the same treatment?

Anita those pictures, unreal

Babs keeping you in my thoughts as you go to prepare for your Rads. Thanks for keeping tabs on us.

Hey LindaE how are you doing?

Bluebird very curious on what you will find out about Y90.

Yesterday was a big scare again, after spending 7 hours, MRI again this time specific to thoracic, 2 docs visit, Faslodex shot - I left and she stayed on, just as I was getting home, she calls me the bleeding returned. I headed back asap, which was 1 hr, MO sent her to see URO, he was doing proceures, her hubby came running,we spent 4 hrs with much anxiety, then URO came and said, if it's not clotting, there is nothing they could do. This is gonna happen. The Hemangiomas had been fulgarized, and this is expected, something about the scabbing coming off, the truth IS it's so rare for a young woman to have it in the bladder, that they don't really know. In the bladder as is, about 3% of ppl only get it, males more than females, and certainly older ppl. Freaking unbelievable, that's what it is. We were sent home happily and scared stiff.

She was just trying to do all the things that are scheduled and settling with what's ahead, and to have to deal with this level of anxiety, am I gonna bleed at the grocery suddenly? Is this gonna be the night to run to the ER due to retention, pain, clotting? How could this be any way normal?URO said, I'm sorry you have to deal with this crap, but… AND never mind that the 1st URO at that horrendous factory, told us unequivocally there would be NO bleed? Hmm that's weird.

If anybody ever hear of this in the bladder, I'd love to hear. One URO at a dif place, was asked by our friend for an opinion, he said "formalin embolization" , this URO said that's crazy treatment for her, totally inappropriate.

Today D started Rads for the thoracic and Orbital, and I gotta look at the reports than I'll know exactly details. Pray and pray that she should be able to be ok so she makes it to the intended day for Y90. A nurse there was trying to make me feel better, she said just pray, I kinda gave her that look like hmm yeah I am and …so she said don't give up praying until you get what you are praying for. Deep and sweet. But it's hard.

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Oct 26, 2017 10:24PM ShetlandPony wrote:

Lisbet, I see that you started Taxol. I know that took a lot of courage; good for you. I would certainly use some cold on hands and feet, as marylark suggests. My own experience with Taxol neuropathy is that I started to get some tingling and numbness in fingers and toes, as well as random "zaps" in various places on my body, around my fifth infusion. When it got to the point of pain in my fingers and toes, I had completed five cycles and my scans showed NEAD, so my onc said let's stop, and not do a sixth cycle, so the neuropathy does not become permanent. The tingling, numbness, and pain went away after I stopped.

I have only read of one person here on BCO that had the rare lung problem with port installation. Like you, I had my port installed just before my second infusion. I was scared, but once I had it, wow, was I glad not to have the vein hunt and the iv. The pre-med antihistamine put me to sleep big time and my hubby would push me in a wheelchair after infusion because I was so wobbly. I'm a lightweight, just can't hold my benadryl!

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast Surgery Lumpectomy
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Oct 26, 2017 10:33PM ShetlandPony wrote:

Momall, I'm so sorry this continues to be such a rough ride for you and Dani and the whole family. You guys are incredible. For days I have been silently willing, "Let Dani stay in shape for the Y90. Let her get to that day."

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast Surgery Lumpectomy
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Oct 27, 2017 06:14AM zarovka wrote:

Mom -

The doctor said, that looking at a population, it takes 3-6 months to differentiate outcomes between people who follow this treatment and people who do not. I will be on US standard of care over that period; therefore, at some level I will never know which treatment I responded to. I see this as a 2-3 year project If I have a good outcome over that period then will suspect this helped. Certainly I progressed fast on Ibrance and letrozol, far less than the mean time from the trials, so I have an active and sneaky cancer. If I am still around in 3 years it's a sign the treatment had impact.

I do expect to come back again. We discussed various the various points in treatment when this treatment makes sense. The treatment can be repeated and has different effects at different points in the evolution of the cancer. When I do return I will better prepared.

I was not able to get full information about the treatment from the US. I just jumped on a plane to come figure this out. I know now there are things I can do in advance to improved the outcome of future treatments if I need to come back.

For the moment I do standard of care and monitor and we'll see how it goes.

Last treatment today included aphaeresis ... they extracted white blood cells to hold in a blood bank for me. Next time they can expand the cells before I arrive so I only need to be here for 2 weeks for the actual infusions.

Thinking of Dani. The next two weeks are really tough. What a strong daughter you have. We are all praying and praying for Dani... that she gets what she wants.

>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 1/17/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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Oct 27, 2017 06:34AM Lindalou wrote:

Mom, I have many hemangiomas in my liver, so a biposy of the liver is too risky for bleeding. I have not heard of them in the bladder but suspect it is rare as the URO said. She surely doesn't need additional complications. Are you getting any sleep or rest?


Linda Dx 11/1/2007, ILC, Left, Stage IIB, Grade 3, ER+/PR+, HER2- Dx 8/2009, Stage IV, metastasized to bone Dx 5/13/2014 Targeted Therapy 4/21/2017 Ibrance (palbociclib) Chemotherapy 10/2/2017 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 10/23/2017 Xeloda (capecitabine) Radiation Therapy External: Bone Radiation Therapy External: Bone Surgery Mastectomy: Left, Right Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Radiation Therapy External: Bone Radiation Therapy Bone
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Oct 27, 2017 06:52AM lisbet54 wrote:

Shetlandpony and Marylark - thanks for the suggestion of ice on hand and feet. I have read info about this. Do you know where I'll be able to get hold of these? (I have looked on Amazon. com - there are not available there - and anyway Amazon doesn't ship to DK. Amazon in UK doesn't have them either) I don't know of any here in DK that has used them and sell them - and the hospital doesn't provide them.

I cannot bring ice to the hospital - it will be melted long before I get there.

Dx 4/2001, ILC, Left, Stage IIA, Grade 3 Dx 5/2008, LCIS/DCIS, Left, 2cm, Stage IIIA, Grade 3, 9/18 nodes, ER+, HER2- Dx 5/2014, LCIS/ILC, Left, 1cm, Stage IIIC, Grade 3, ER+, HER2- Hormonal Therapy 2/28/2015 Femara (letrozole) Dx 6/2017, LCIS/DCIS/ILC, Stage IV, metastasized to liver, ER+, HER2- Hormonal Therapy 7/4/2017 Faslodex (fulvestrant) Targeted Therapy 7/4/2017 Ibrance (palbociclib) Chemotherapy 10/25/2017 Taxol (paclitaxel) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane) Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary; Prophylactic ovary removal Surgery Mastectomy: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 27, 2017 08:01AM Kaption wrote:

lisbethand others, I’m not sure if it’s the same treatment, but 2 or 3 Times at my infusion center I have watched the nurses wrap large bags of ice and blankets around one woman’s feet. ( not her hands though). She gives them directions. They are bags they already have. They put under and over her feet.


Dx 8/2005, DCIS, Left, Stage 0, ER+, HER2+ Dx 5/2012, DCIS, Right, Stage 0, Grade 3, 0/1 nodes, ER+, HER2+ Dx 6/2013, Stage IV, metastasized to bone, ER+, HER2- Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone Surgery Lumpectomy: Left Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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Oct 27, 2017 10:38AM Grannax2 wrote:

Lisbet. It's such a huge step for you to have that first treatment behind you. For your hands and feet, maybe you could buy a bag of ice at a convenience store near the hospital.

Z. Glad you'll be home soon. What will your standard of care be when you get back?

Shetland Thanks for clearing all that up for me. Sounds like you are doing well on X.

Mom. We will all have to pray Dani through EACH day. Thanks for keeping us updated.

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