How are people with liver mets doing?
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hi all,
thanks Jaylea for your help with neuropathy. S3K5, I will ask about Lyrica as the gabapentin doesn't seem to be doing much on days 4-6. also I've been on both Piqray on a trial and now on halaven so if you have any specific questions, fire away.
i'm truly sorry to hear about another one of us leaving far too soon.
best thoughts for all of us. cheers, dee
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Altough I don't remember much about her, I do recognize her name and I'm so sorry to hear about her passing. I hope that her death was comfortable let her family find some peace in that.
I also remember a woman originally from England who was posting in December2018 that her family was coming in, but she was going downhill pretty quickly it sounded
She posted under the name Schwilly or something like that, but I never saw any further news after December 2018.
I don't see posting about death as being negative; it is our reality. Ann Silberman said that each day was a simultaneousl celebration of life and mourning it. She said it much more clearly but you get the idea.
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So sad to hear about Kiwi. Well said Katty.
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Jalea- Liwi's passing has been very hard for me- we became close. I spoke to her and her DH at the end- it was very fast, thankfully hospice was there to help. I feel a deep sense of loss with her passing, even though I knew she was not well, I thought there would be more time.
Ultimately, we are all autumn leaves.
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Hi, I was diagnosed with Stage IV in 11/2001 with a BC met to my liver. I am luckily very ER+ so after taking away my Estrogen with Femara I was NED for 14 years. It returned in 2015, I had laparscopic surgery for a liver met, and I've been on Ibrance/Faslodex until this month. I had recent surgery (Dec. 2019) for BC mets around my small intestine (caused a blockage) but after it was removed I was able to eat everything and anything after being deprived for 5 months a very exciting time for me (GI doc kept saying it was IBS). Now a follow up PET scan shows a new liver tumor so I've changed to Aromasin, the one anti-estrogen I have not tried, to see if that will help. I think Xeloda is somewhere in the future. I am considered an "outlier" because I have been able to live so long since my initial diagnosis- it can become a "chronic" disease with all the new treatments that come along. Take Care All, NINA
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Dear Nina, your story is incredibly inspiring, unbelievable. Wish you many many years ahead! Saulius
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Hi liver sisters
My last CT was september 20 and they are supposed to be every three months. I haven't had a "good" scan for over a year, its been more spread in the liver and bones. My oncologist ordered a CT for the second week in january and said we would discuss results the next week (which would have been last week). Now have gotten a CT time for February 5, and it can take up to a month to get results. That's 5 months between scans and no new plan for two more months. My calcium levels are high which has me worried that the Halaven (eribuilin) has stopped working.
I am pushing for them to give me a copy of the doctor's orders so I can pay for a scan myself at a private clinic. So far no luck.
I have trouble editing my settings but the previous chemos I've been on are: Taxol, NAB-Pax, Navelbine, Capecetabine (Xeloda), Ibrance, and Kadcyla (TDMI1) plus Herceptin+Perjeta and biosphenol for the calcium levels.
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Arolsson, that is outrageous and unacceptable! Do you have any options locally (where are you?) and/or can you afford to travel to a large cancer center like MDA if you're in the US? You are not being treated professionally or compassionately! I'm so sorry!
Katty
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Hi BevJen and everyone,
I think I mentioned that I recently had a lumpectomy (removing primary tumor has some benefits acc. to MO) and was waiting to hear more about possible local liver treatment.
Well I met with RO today to go over my new liver mri which showed improvement since my dx a year ago. The sizes weren't as small as my CTs had showed but the three that were noted are all smaller, 1 cm for the largest. RO very patiently explained that breast & node radiation was the second component to the lumpectomy and without it the chance of regrowth to breast or nodes was 30-40%, mainly because my nodes were quite enlarged before treatment. And the “benefit" mentioned is assuming complete treatment. So my no to radiation has pretty much become a yes, but I haven't committed yet. On the liver treatment, she feels she needs another mri (when MO orders again) to recommend anything. She said they're small, and they're shrinking, so there's no rush. Makes sense to me.So right now I'm heading for 25 rad sessions and watching the liver mets. (MO actually recommended the opposite: if no liver treatment then no radiation. She said be sure to understand the risks of rads and she's more focused on my QOL.)
I feel like whatever doc I talk to most recently gets my vote.
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Rosie,
You've gotten some interesting (and conflicting) advice from your doctors.
Re liver treatment, if you're in the seeing doctors mode, you might want to see an interventional radiologist regarding the local liver treatment. Have you done that? A "regular" radiation oncologist wouldn't be able to do things like ablation, Y90, etc. It's the IRs that do that.
As far as the radiation treatments to your breast and nodes, I had 25 radiation treatments to that area at my original diagnosis. It was, to me, so much easier than chemo and other than the inconvenience of having to go every day of the week to have the treatment, I didn't think that it was very bad. You can get "radiation burn" where you are radiated, but use the cream that they give you religiously, and get a bit more rest and you will be fine from that treatment.
Good luck!
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Hey BevJen,
Funny you mention an IR. The nurse who checked me in started by asking how I was feeling about everything, so I shared my uncertainty about going ahead with radiation. I said I wondered if it was worth hitting the breast & nodes so hard when I had liver mets hanging around. Well, she opened up about how she usually works for Dr, so and so who does sbrt and ablation, and maybe that would be good for me, and how she hopes I get to be their patient. Definitely not a tight-lipped nurse!
Yes, I understand this doc I saw doesn’t do specific treatments. I think she was saying she wasn’t making a referral for liver treatment yet, and was explaining there wasn’t an urgent need.
Thanks for your response, I appreciate it. 😊
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Rosie. So, you are on IL and have been for a year? Is your liver met responding, getting smaller, on IL?
From my experience, the liver met is your most serious issue. Yes, I know all the long term stats of reducing your risk of a recurrence in your breast. Long term is what I'm focusing on. It takes years for a recurrence in the breast to become an issue.
But, liver mets can be fast growing and life threatening. No one can predict what they will do. Whatever happens in your breast is not as deadly as what happens in your liver. That's my focus as I read your post. First things first.
I think going to an IR would be a wise first step. You can even have a consultation while you're doing breast radiation. Once you get started the appointments will only take a few minutes each day. You do not need a referral to see an IR.
I re read your post and see that mets are responding to IL. That's great but still they are your most serious, short term issue. I can sure see why you're confused. I wish our team of docs would be on the same page. An IR needs to be on your team. 💞
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Thank you for responding, Grannax. I know we need to make our own decisions and advocate for ourselves, but I find myself wanting to be told definitively, here’s what you should do. I appreciate your comment prioritizing liver mets over breast. I guess Ive been lulled into not worrying so much since everything has shrunk in my first year. I know this can’t last. I will need to decide on breast radiation and let them know. I’ve seesawed back and forth on doing it since my appt. yesterday. Do you feel like local liver treatments are usually done when progression occurs or also as an aggressive strategy before progression?
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So sad to hear about Liwi's passing. I recall that her screen name was Liwi based on a Hawaiian bird with that name. I knew she was having a tough time a while back but had not heard anything recently. Praying for Liwi's family.
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Rosie. Both of mine were done after progression. I think that's the more accepted rule of thumb. In your case that hasn't happened.
yet. But, by my own personal experience, I know it is still an option for you if that's what the IR advises.
On the other hand, since it only takes about six weeks for you to finish your breast radiation, you have time to have that done, too. It can take that long to get a consultation with an IR. So, it's not an either or situation for you.
These days oncs seem to give their patients the deciding vote on what TX to pursue. Most likely, it will continue to be your choice to choose what you think is the best next thing to do. Gone are the days of oncs telling you exactly what you should do. That's good but sometimes hard and confusing.
Information/ self advocating and educating ourselves is key. That's exactly what you're doing here. Good job. Asking questions here has been key for me during my three years on these threads. I probably would not have lived three years or had such a good quality of life if it had not been for my knowledge and support gleaned here.💞
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So for those of you that know about the itchy skin condition I have had on and off for 2 years now....and that went completely away the 1st month in on the Ibrance and then started to come back when Ibrance failed the dermatologist in NY thinks is from my cancer. Well my friend thinks she found the actual name of my itchy skin condition .. https://dermnetnz.org/topics/paraneoplastic-pruritus/
yup...and 2 of the pictures there #5 and #7 look exactly like what i get on my elbow and knee.... anyway...it seems to be clearing up now...so I am praying that it means the Xeloda is working because she upped my dose last week..... Prayers welcomed here
Nicole
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Nicole,
Hope the xeloda is doing its thing. Good luck on that.
The pictures are interesting -- years ago, a friend of mine had something that looked very similar. At that time, they told her it was one thing, but now they have identified is as psoriatic arthritis. It's not all over her body, but in some places only, kind of like you. I wonder if the two conditions are related?
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Nicole. Very interesting to finally know the reason the rash happened. I think you might be on he right track with X, since you have no rash. I sure hope so. I'm praying for you.💞
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Update from my MO appointment - the PET scan showed mixed results for liver mets, some lesions show slightly increased activity and some lesions show the same activity as my previous scan. My MO thinks that since there are no new lesions, the CMF chemo has done its job of keeping the liver mets stable. I asked for a break in chemo, since the nausea and fatigue were getting unbearable. Plus, I have been having one infection after another (Sinus infection, UTI, etc) since the last 4 months. I am on IV antibiotics now.
My MO wants me to take letrozole for the next 3 months, and then do a scan. Anyone here on Letrozole for liver and bone mets? I am not so sure if this is the right treatment for liver mets. I am happy about getting a chemo break but also worry about the progression of liver mets on anti-hormone therapy alone.
Any advice, experience with the Letrozole for Stage IV cancer would be appreciated.
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S3K5- I am on Letrozole WITH Ibrance for liver and bone mets. I see you are ER+/PR+. Have you been thru menopause? I was pre-menopausal so they give Lupron monthly injection to shut down ovaries and then with ovarian suppression I can have the AI. Letrozole can be used alone, I believe. Or coupled with a CDK4/6 inhibitor. I don't know if Letrozole can be coupled with other meds--Xeloda or others. Have you consulted Bestbird's Guide? Do you have it? I can get the link for you to download her Guide. She has done a lot of research and her Guide is very helpful.
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S3K5. Have you had genomic testing? I have ESR1. That means AI doesn't work on me. Those results explain why IL and AA failed for me.
It's good you didn't have progression.
I'm kinda in a similar situation, taking a break from real chemo while I did my y90s. I'm only on Fazlodex for five months while I wait for my next PET in March. We're hoping it will keep my lung mets stable. Fortunately, we can already tell that the y90's have helped my liver mets. But, we won't know the whole story till my PET.
Kinda nerve wracking. 💞
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candy-678, I was on Faslodex+Ibrance for 18 months and then Letrozole + Ibrance for another 3 months. The bone mets progressed on both. I was on Xeloda for 3 months, then progression in liver mets. I have gone through quite a lot of chemo regimens! Please send me the link to BestBird's guide for MBC. I haven't read this.
Grannax2 hope the Faslodex keeps working for you. I have had letrozole 11 years ago and again with IBrance in 2015. I hope it works the third time. I have had IMPACT genomic testing at MSK. I don't think I have ESR1 mutation. I definitely have PIK3 mutation so Piqray is in the horizon for me.
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Hi everyone. I’m new to the site but wanted to join for some support.
I was diagnosed with stage 3 breast cancer 4 years ago and was treated with chemo, surgery and radiation and then taking tamoxifen since.
Earlier this month I was seen by my family doctor for pre surgery check up to have my final stage reconstructive surgery. He noticed that my liver was enlarged and booked me for an ultrasound. Unfortunately, the ultrasound showed multiple lesions with the largest lesion being 7cm in diameter.
I was shocked since I was feeling perfectly fine. Blood work was normal except my AST was slightly elevated (67). I had an appointment with the oncologist last Friday and was started on Ribociclib, Leuprolide and Letrozole.
I am so scared right now. I have 2 children (10 and 13) and I worry about them so much.I guess I don’t have a specific question at this time but wanted to introduce myself.
Best of luck to everyone out there
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hugs turtle luv. It’s scary when you are told that you have metastatic cancer.
I have been living with metastatic liver and brain Mets for over 7 years. My kids are 27,15,12, and 9. I just want you to know that it’s dark right now but you still have a lot of living to do. We are here for you.
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SK35
Bestbird has a book you can order (also electronic copy). I will edit to add that info.
Meanwhile, you can email her and she will send a free copy to download. I think she is still doing that.
I have the paperback and take notes.
1) Email the request to bestbird@hotmail.com
2) In the Subject Line, type in the words: MBC Document Request Terms Accepted by <the recipient's email address>Edited to add:
Bestbird wrote:
If you are newly diagnosed with MBC, facing a treatment change, or contending with difficult side effects, then you may want to look at "The Insider's Guide to Metastatic Breast Cancer," which provides science-based information about approved and emerging therapies, cutting edge research, symptom mitigation, and more. It is the only comprehensive, up-to-date, patient-oriented MBC book on the market today (the last similar publication was in 1998).
Learn more about "The Insider's Guide to Metastatic Breast Cancer" at: https://www.insidersguidembc.com/ You can order the paperback or eBook on Amazon, or download a complimentary .pdf via the ORDER page.
The Guide contains information that many patients may not be aware of, such as:
- Hormone Receptor (HR) positive, HER2 negative premenopausal patients are now eligible to take a combination of Kisqali (Ribociclib) which is a CDK4/6 inhibitor, along with an Aromatase Inhibitor (AI) as initial endocrine-based therapy.
- BRCA positive, HER2 negative MBC patients have the option of taking the FDA-approved PARP inhibitors Olaparib or Talazoparib for their disease.
- Heavily pre-treated HER2+ MBC patients may be interested to hear that a Phase 3 study called "SOPHIA" showed that the experimental drug Margetuximab in combination with chemotherapy reduced the risk of disease progression or death by 24% compared with patients taking Herceptin and chemotherapy.
- Patients experiencing fatigue, anxiety, joint pain, and/or other quality of life issues can significantly be helped by acupuncture treatments based upon the results of scientific studies.
- If Xeloda or 5-FU have been prescribed as treatment, patients may first want to speak with their medical teams about getting tested for specific mutations in the DPD (dihydropyrimidine dehydrogenase) gene that could cause a severely toxic or potentially life-threatening reaction.Approximately 3% to 5% of the population has some degree of DPD deficiency that can put them at risk when taking these drugs.
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Turtle luv. Nice to meet you. I was totally shocked when DX with liver mets three years ago. I had no idea either. It's such a scary time. But here I am three years later with lung, chest and liver mets. I had no idea I could live this long when I heard my DX.
Not just live but live well. You've come to the right place for encouragement, support and invaluable information. Welcome.
Sandibeach very interesting info. I've heard about this but didn't experience it myself. Unfortunately, X failed for me.
LFF. Inspiring, you are a miracle. 💞
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Hi Grannax2. I wish I could take credit..but the info came from Bestbird!
S
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Sandibeach- Thanks for forwarding Bestbirds info to SK35. I had not been online here since she asked for the info.
TurtleLuv- You came to the right place. A lot of wonderful women here and lots of help. I had an 8 centimeter liver met when we found my MBC. Liver enzymes normal. No nausea. No weight gain or loss. Weird that something can be growing that large in our bodies and we have no idea. BTW my liver met is now 1.5 centimeters and staying stable over 2 years into this journey/ride/whatever you want to call this. Hope to see your posts here. Any questions, just ask. Nothing is off limits.
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SandiBeach57, thank you for the information. I will send Bestbird an email about her book.
TurtleLuv, sorry to see you this way on this forum. I was devastated when I was diagnosed with bone mets 6 years ago and then liver mets one year ago. I know this is a difficult time for you, but it looks like your MO has a good treatment plan for you, They will monitor you with scans every 3-4 months to ensure your treatment is working.
We are here for you, Please feel free to ask any questions you may have.
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Thanks everyone for the support and information. It really helps to hear your stories throughout this battle. Your strength is inspiring. 💕
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