How are people with liver mets doing?
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Artist! I am following you in starting Abraxane soon. Your onc sounds wack, and making you suffer with ascites is wrong on so many levels. After my Paris/Normandy vacay which starts Saturday, I will meet the UCLA Orange County onc August 2nd to figure out how many Abraxane sessions I will need prior to starting Xeloda (assuming I respond well to Abraxane). My UCLA onc's plan is to use the big guns to bring the bone mets and liver down and then X ahoy! Afinitor did nothing for me (as you know I call it A-phony-tor), so here we are. Have you tried cold caps? I used them the first time with chemo to keep my hair (worked pretty well) and will try them again. Also kept my original wig.:) Hi to the many ladies I know here. If anyone has Abraxane tips I am open. I heard I may not need a port, but that depends on how many sessions I need. So glad I am going to Paris - and Artist you will enjoy your DD's wedding and look stunning. Microbladed eyebrows here we come!
(()) Claire
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Thanks again for all the kinds responses and welcomes. It's overwhelming!
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Lisbet you got a long road ahead.
Claire oh my goodness, you are a busy lady! Have a great time. Hoping for the best on your new tx.
Husband11 I appreciate your input on the ascites, my DD fluctuates between mild to midlevel ascites, I am nervous as hell about it, Onco does not wanna do a/t unless it's really detrimental to her.
Waiting for this week's scans and biopsy results...then we'll know if Dani is continuing with the trial.
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Lalady, very interesting. My onc did the opposite. She started me on X first.
I had a SIGNIFICANT tumor load. My original report was 8 pages long, single spaced. I have lots of node involvement, and I have tumors in the liver, pancreas, adrenals, bladder, abdominal wall, on the outside of the colon, in the muscles adjacent to my spine, in my lumbar and thoracic spine, in my pelvic bones, in my ribs, and in my hips along with bone marrow abnormality. The cancer gave me 4 spinal compression fractures and 3 rib fractures. My height shrunk 2 inches because cancer was eating away at my bones.
They started me off with rads to my spine first last April so I wouldn't end up paralyzed. Then I had my Zometa bone infusion, then Xeloda.
Thanks to Xeloda, my liver and all my organ mets are stable. There was mild progression in my spine and ribs, so we did more rads this year to the spine and adjacent muscle mets which were causing nerve compression.
I was in a wheelchair last year. Now I only use a cane when I have to, and a walker for REALLY long walks.
Every MO is different. She and I worked out a plan together. She and I agreed the nausea and vomiting from IV chemos would make my back worse. I already had 7 compression fractures, and I didn't need any more.
When X finally fails me THEN we will move to either Abraxane ot Taxol. Xeloda hasn’t been a walk in the park, but I've had minimal nausea, NO vomiting whatsoever, and the hfs has been manageable. Lowering the dosage took care of the diarrhea, and here I am 15 months later.
I have been able to travel a bit, taking moderate fatigue into consideration. Just a suggestion, but you may want to get more clarification as to WHY your MO wants to go with Iv chemo first. So many women have had fantastic results with X. Many St. 4 women on X have even been able to continue working. You just take the pills, morning and evening, either for 14 days or 7 days. You get a week off between cycles. I started off on 14 days, now I'm on 7. Pretty amazing considering how many tumors I have.
I do not look forward to,the IV stuff. I hope my pill-form chemo works for many more months.
Lita
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Lita, very interesting input on the Xeloda as I thought that his what would be next for me as well.My old Onc said we were beyond that now due to the ascites. She just did not think it would work and that we needed something to knock things down quick. You have been through SOOOO much, I salute you for your fortitude, good grace and humor. You are such a beautiful soul.
Lalady's situation sounds similar as far as wanting to shrink things quick then switching. I guess I need to speak with my new Onc soon to see what they recommend. I would so rather wait on the IV crud as well. I have not had the occasion to try cold caps and wonder if anyone else has tried them with Abraxane? I can't quite put my finger on why my old Onc just never inspired any optimism in me. But after this whole ascites episode I knew I needed to change.
In the meantime, I've been fast tracked in my new town. A new GP who so far seems very competent and compassionate. I meet a gastro guy next week so I will not need to go to the ER next time I have ascites misery, get an MRI for a baseline brain image and a CT on the same day, a port consultation and hopefully meet a new Onc who can get me going again. It's a lot and I'm already exhausted mentally but feeling so much more optimistic.
Husband11, I too appreciate your input as it does coincide with other stories I've read and gives me hope that we can turn it around!
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Hi ladies,
I've really appreciated reading your posts. I was diagnosed stage IV de novo in March with two small mets to the liver. My mets were found via PET scan, but never confirmed with biopsy as they were gone after two rounds of TCHP. I completed my 6th cycle of TCHP last week and my PET a month ago was clear. I have surgery and rads coming up, and will be on Herceptin and Perjeta long-term. Fingers crossed my liver remains clear. I'll definitely be following this thread and wishing you all the best
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Artist: Thank you for the compliments
)!I don't know the protocol for ascites. Those can be pretty nasty, as you well know. Your new MO may very well want to start you on the big guns to bring your liver quickly back into line and rid you of those pesky ascites forever.
The liver does SO MUCH for the body, and when it starts to act "sick" and pump fluid into the abdomen, you need to act quickly. Xeloda can take a few months to really start kicking in for some people. For others, it acts right away.
You can always do Abraxane first and then switch to Xeloda once your liver becomes stable. It doesn't hurt to get a couple of opinions on this and see what another onco or two has to say.
Your health and just your "being here for a long time to come" is the most important thing. Only an experienced onco (preferably one who has specifically dealt with more than a few patients with ascites in the past) can help you decide what the next best course should be.
Keeping you in prayer!
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MommyErin - Sounds like you are doing really well. My liver has completely responded to treatment, too. But that doesn't mean we can't hang out here. Once a liver metster, always a liver metster. Welcome.
>Z<
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I have good news! My CA 27.29 tumor marker dropped over 70 points from three weeks ago. That is about 100 points after just two Xeloda cycles. One more nice drop and it will be in normal range! Since my TMs have proven to be super accurate*, I just got excused from the liver biopsy we had planned for next week. My onc said that we should save it for the time when we are needing to change treatment, and then get the pathology and genomic testing at that time when the info will be fresh and not old news. She said this drug could work for years. Also because of this good response to Xeloda we are holding liver radioembolization in reserve, and are comfortable holding off on a PET scan as well. So I thought I would be posting today to ask for help facing the liver biopsy, but instead I get to share the good news that after a four-month A-phoney-tor (wink to lalady) fail, my new treatment with X is working.
* Not the case with everyone. This is based on three years of correlating my TMs with my scans.
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Welcome, MommyErin, and congrats on your successful chemo. It sounds like you may fit the profile of oligo-metastatic, which is a very good thing.
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YAY Shetland! That is great news!
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Shetland- sooooooo happy for you. Great News!!!!!!!
Babs
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That is great news Shetland!
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Oh Shetland ... finally things are going according to plan. Imagine how well things could go now that the drug you are taking actually treats your cancer!!!!! Seriously, consider the fact that your cancer may have been "untreated" for quite some time ... what else were you doing lifestyle-wise, etc. Because that is what was holding it at bay for so long.
Happy dancing for you over here.
>Z<
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Yeah Shetland! Wishing you a reprieve from this crazy journey! Keep up the good work!
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woo hoo Shetlan
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ShetlandPony - music to my ears! Awesome news!
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Lovely Lita - I will ask onc about Abraxane first, but the idea is bring big guns out to help the aching jaw met and stabilize liver. I figured I would have X as my next med due to A-phony-tor fail after 2 months. My TMs doubled from 91 to 200. oy So after Paris, I will see the onc and figure this out. Thanks to all for your kind support. Our sisterhood here means a lot to me. I plan to work from home for the next two months. Shetland - your news has me in a big smile.
Dancing!!(()) Claire
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Shetland that is so great! May X hold you for many many moons! WooHoo!
lalady, My Onc had the same thinking about Abraxane to bring everything under control then maybe switch to X later....Now I will see a new Onc Friday and will be interested in his/her take.
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I'm new to this thread. Just got news that MRI onf liver lesions look like the breast cancer treated 2 1/2 years ago has metastasized to my liver. Total shock as the lesions were initially seen on a chest CT for another issue that appears to have just been muscle and scar tissue pain. I've had no symptoms and no idea of what to expect from here. I heard late in day and should be seeing my oncologist tomorrow or Friday. She is ordering a liver biopsy.
Reviewing your posts is helping, I'm both numb from being in shock and scared.
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Liwi -
I am on first line systemic treatment with hormonals and Ibrance. I had liver mets 18 months ago, now I do not. This is unlikely to last, but things are okay right now for me and many of us. It's a long difficult road. There is a tremendous amount to learn, and an emotional roller coaster ahead, but you will get through this. Let us know what is going on, ask your questions. We'll get you through this.
The first line treatment choices are pretty standard and buy you a lot of time to understand your situation and start taking control of your treatment.
The thing that hit me first was a sense of loss of control ... waiting for doctors to tell me what was going on and inform me of my fate. Turns out there is a lot you can do with diet and lifestyle to improve your odds. So while the doctors schedule your biopsy and ponder your hormonal status, order up some good books like Anti-Cancer A New Way of Life.
That said, we were all in shock for quite some time. Not much to do but sit with the loss and shock. If you a spiritual home or inclination, this can be a great help.
We're here for you ...
>Z<
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Good Morning,
Shetland, I'm so happy for you. Seems like X is doing a good job for both of us!!! Hoping for this to last for quite a while. I bet your next cycle you will see another big difference. My TMs are at the lowest. 12.
Artist, good luck with your new MO. Keep us posted.
Liwi, welcome. Stay close to these threads, there are so many ladies that have been through so much and have a wealth of knowledge. I was diagnosed with liver mets in April after being diagnosed with bone mets a year ago. Shocking indeed. Scary, no words to describe. There will be a time you come to grips when you see medications start to work, but it is always a roller coaster.
Hope everyone has a good day.
Hugs
Anita
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Joining my voice to welcome you Lini. A lot of knowledge and support from knowledgeable ladies on this thread.
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Welcome Liwi-sorry you're here but you have many ladies that will help you navigate this change in your lie- they are TERRIFIC!!!!!
So, I was supposed to have my second treatment of Halaven in my 2nd cycle tonight but I got a call from my MO saying that there is a study she thinks will be good for me. And, that if I want to go into it, I must be off all treatments for 3 weeks so maybe I shouldn't do the chemo today. I am getting scans tomorrow anyway (due to my rising TM's). If they show that the Halaven is working ( doubtful) I can always restart again. If it shows progression, then this study might be applicable. I will know on Monday IF I will be accepted into this trial-you must be accepted. Here's some info-has anyone heard of this study? My concern is that it is a phase 1 study. And yes, I do have the PIK3CA mutation.
Official Study Title for Internet Search on http://www.ClinicalTrials.gov: A Phase I, Open-Label, Dose-Escalation Study Evaluating the Safety, Tolerability, and Pharmacokinetics of GDC-0077 as a Single Agent in Patients with Locally Advanced or Metastatic PIK3CA-Mutant Solid Tumors and in Combination with Endocrine and Targeted Therapies in Patients with Locally Advanced or Metastatic PIK3CA-Mutant Hormone-Receptor Positive Breast Cancer.
Thanks
Babs
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Babs - here is a link to the trial page. Interesting that they are combining it with Ibrance and letrozol in some of the arms. .
Here's an understandable read on GDC-0077. Basically it is much more selective for the PIK3CA mutation that drugs we have seen previously ...
PIK3CA, the gene that encodes for the p110α catalytic subunit of phosphatidylinositol-3-kinase (PI3Kα), is frequently mutated in cancer, with activating and transforming mutations of PIK3CA occurring in approximately 17% of cancers diagnosed annually. The narrow therapeutic index of PI3K inhibitors evaluated in the clinic thus far may be due to insufficient selectivity for PI3K isoform or mutant oncogenic driver. We report the results of our efforts directed at improving efficacy and safety of a class of benzoxazepin inhibitors of PI3K. A structure-, property-, and phenotype-guided strategy directed at high PI3K-isoform and PIKK-family selectivity, as well as a distinct cellular mechanism of action, culminated in the discovery of GDC-0077. Differences in primary and tertiary structure among PI3K isoforms were leveraged to achieve >300-fold selective inhibition of the PI3Kα isoform over the β, δ, and γ isoforms in biochemical assays. Very high selectivity over PIKK-family proteins such as mTOR, DNA-PK and VPS34 was also achieved through this process. In vitro and in vivo data indicate that GDC-0077 operates by a mechanism that promotes the selective degradation of "hotspot" p110α mutants (H1047R, E545K). Treatment of nude mice bearing PIK3CA-mutant breast tumor xenografts with oral GDC-0077 resulted in tumor regressions at well-tolerated doses. Together, the high degree of isoform selectivity, selective degradation of mutant-p110α, and in vivo PK/efficacy support the clinical evaluation of GDC-0077 as a treatment for patients with locally advanced or metastatic, PIK3CA-mutant cancer.
I'd give it a whirl for sure if your doctor recommends it ...
>Z<
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Thank you for welcoming me to your group.
I saw my oncologist today with my husband. She explained the next steps, drew blood for tumor markers, ordered a PET scan and a liver biopsy. Goal is to find out if cancer anywhere else and confirm its properties. She said she's sure it's a secondary cancer metastasized to the liver and likely breast cancer but could be for example unknown colon cancer that has metastasized to the liver. Never knew that could be a possibility. Now I'm remembering how frustrating it was going through all these initial steps with my first diagnosis. And emotionally this one has hit me a lot harder. I haven't told my daughter (age 30) yet. I'd like to have a little more information before telling her, other family, and friends. Hopefully in particular the PET scan can be scheduled quickly.
Reading through these threads I can see that I have a lot to learn. It's great to know there's a place to do that and get support from others who have been through this.0 -
Liwi, it does come as quite a shock when you find out it has gone beyond the breasts. It will probably be a good thing to wait to tell others of your diagnosis. You'll feel more grounded once the scans are done and you have a treatment plan in place. And of course visit these boards whether you just lurk or post often. There is a lot of good information here.
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How do you find out if you have the PIK mutation?
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Husband. I had what MSKCC calls the Impact Study done on my biopsy. It's where they test many genomes and find out what mutations one has
Liwi. Yes this group is the best for support!
Z thank you so much for that info. Thanks to you I was prepared with lots of questions!!!!! If I am accepted into the study I will get letrozole and GDC 0077. I met with the study nurse and I'm really hoping I'm picked. I don't think my poor right arm can take much more and I so don't want another port. I did find out that my MO is thinking of Doxil or Navelbine next if not
Sitting waiting for my pet scan now. This stuff is getting real old!!!!!
Babs
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Babs hopefully your scans will get you the info you need. Who is the Dr for the clinical trial? I am sure with your doc pushing they will try very hard to get you in. Is it Phase1 stage 1 or stage 2? But for sure it was a good choice to skip treatment and see the scans and get some info on the trial. You gain a week.
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