How are people with liver mets doing?
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Thanks all! I am thinking of another biopsy so my MO is not shooting in the dark. Thus far my biopsies did not yield enough tissue to know of any mutations or gnomes- only that I've been ER&PR + and HER2- Maybe a surgery to get enough this time???? So many things in my mind now!!!! Good news I still have no symptoms and am capable of living life as close to normal as possible at this time!!! I want to keep it that way!!!
Babs
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Babs, living your life and feeling pretty well seems like the best thing for you to focus on. If we can all choose the healthiest mental outlook for ourselves, we are doing great! Stephanie has done this in her way, you have done it in your way, I make the effort every day to do this in my way. We are ok right now.
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Thanks Shetland!!!!!
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Hello all
I just read back a few pages and I'm encouraged by the caring, warmth and incredible wisdom shared and feel comfort knowing your support is here for me. I was recently diagnosed with mets in both lobes and more bone mets. I had my 2nd round of Doxil and Cytoxan Thursday and I'm seeing my onc today after email conversations in which he seemed to indicate he would keep me on this regime if it works as long as it's working. Originally he mentioned a "brief course of chemo" and then go back to Faslodex this time with Ibrance (I did try the Ibrance but we stopped due to low WBC) Has anyone else stayed with chemo until progression ? Going back to faslodex does seem questionable since I progressed on it.
Any thoughts appreciated. Thanks to Stephanie and others for the gentle reminders to stay present.
Lisa
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Ok so today I got the info from my MO
The study she thinks might be good for me involves a drug called VT464. Has anyone heard of this drug?
Then the chemo cocktail she suggested includes fluorouracil(Adrucil) methotrexate (Otrexup, Rasuvo, RheumatrexTrexall) cyclophosphamide (Procutox)
Any information on this?
Thanks
Babs
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Hi Into,
My diagnosis is similar to yours. Liver mets in both lobes and many bones. I was started on the Ibrance/ Faslodex combo this past May. In the first month my tumor markers dropped 40 points. I recently had to go off the Ibrance for one month due to emergent dental work (abscessed tooth with extraction). I could only take the Faslodex. My tumor markers jumped 56 points during that month! It appears that the Ibrance makes the Faslodex work somehow. I will be interested in what my TM's are next month.
Good luck with your treatment!
Melanie
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Babs VT464 is sn antiandogen meds for prostate cancer which is still in second phase trial and it is also being investigate by Sloan kettering . My info are only from the internet only , you may want to investigate more about it. I hope she soon comes up with a good combo for you . Hugs.
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Woody. Thank you I'd love to find someone taking this drug so I ll know the SEs to expect if I opt to go into this study
Babs
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5 months into the MBC world. Crossing fingers it last many more. Due for 3rd scan and hoping treatment is still shrinking liver tumors. Total disconnect with my oncologist with plans if results are good or bad. Ugh. I guess I can only wait and see.
In the meantime, I gather both hope and a realistic perspective from this thread. Everyone's response can be so different. We just have to keep at it, deal with it, and move forward. Good or bad. Easier said than done 😊
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Hi Babs,
Have you read this fact-filled bco topic?
Although it ends up being updates on beloved Hope, it begins with anti-androgen therapies (Xtandi) and brings up many important ideas, facts and experiences:
Androgen Receptor Testing & Treatment
Warmest of healing wishes for all my liver mets community, Stephanie
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Hi everybody. I have just been told my liver has deteriorated so much they can't give me any more treatment. Is there anything it's possible to do to improve the liver? Barba
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(Warning! Repeated in Bone thread)
Guys, I am behind on following up on all posts. Sorry, but it's been one thing after another. Before I get a chance to get updated on all there is, I am behind 3 pages! I have a question.
Onco called frantic that on last week's BT for Dani, they checked her tyroid (bcs she was loosing weight), but she was loosing weight, because she had Rads to the sacrum and to the cerebellum, and she had nausea, vomiting and not eating before procedure as to not have nausea. Anyway, the test came back TSH normal, but T4 above normal.
Did anyone have this experience? She never had problems w the tryroid before. Do you think something is going on in the Pituitary? Dani did not wanna run to another doctor, Onco wanted her to go to an Endocrinologist. She told them she wanted to redo the test and make sure it's not a fluke. Does anyone know how urgent is something like this?
Another thing to think about.0 -
BarbDenise: So sorry to hear your devastating news. You must be scared and beside yourself after all this. Have you sought out a second opinion about the liver? I don't know much else to offer, but Stephanie or one of the other long-termers w/extensive liver mets might be able to help. I've only been on this miserable roller coaster for about six months, so I'm not as experienced as others.
Will indeed be praying for you.
Lita
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Hi Barb Denise,
Couldn't tell from your post if it's the liver mets that have caused liver deterioration or your liver is feeling the effects of treatment toxicity? It looks like your cancer is triple negative, so maybe you've been on chemo for two years now?
Livers are tremendously vital organs and can regenerate under the right circumstances, but I'm uncertain what your health practitioners have in their tool boxes.
What have they said about your options?
And how are you feeling physically?
I imagine you're feeling frightened, but maybe you're also exhausted?
Sending warm, healing wishes, Stephanie
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Hi Barb Denise
I don't know enough to give you any help-just can send you a virtual hug!
Babs
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Hello everyone,
I haven't posted on the site for awhile, although I have been reading. A lot has happened in our family- daughter's wedding and both mother and mother-in-law needing extra care. Meanwhile, my liver tumors have progressed and are now in both lobes (and also bones, although I think they are pretty stable.)
I am starting my first IV chemo next week. I'll get my port on Monday and my first treatment of Doxil on Friday. The only other non-hormonal chemo I've been on in my nine years of treatment is Xeloda. Because that was a pill, this one seems a lot tougher to take emotionally. Most of you have been there, done that, and done well, so I continue to find comfort, and inspiration on this site.
I just hope it works. I'll be sitting for it every three weeks, regular EKGs and blood work, and another scan in three months or so.
This is the roller coaster we're all on together. And I never liked roller coasters.
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BarbDenise - The liver is a remarkable organ that does regenerate. However, I am not aware of standard therapies that attempt liver regeneration. You would need to jump the fence and work with alternative doctors and therapies. I work with a complementary medical doctor specializes in the liver. He has had a lot of success. You can PM for more information. However, the big issues with these treatment strategies is that nothing is covered by insurance. The cost adds up fast. And like conventional treatments, they do not always work. Something to consider.
>Z<
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Met with my MO today. She offered me so many options that my head is spinning. First was a study for a drug that's an anti-androgen. I'd have to be off all meds for 2 weeks which isn't bad. The SE's are foggy brain with memory issues and also sight issues. Thus far almost everyone in this study has experienced these SE's. I would have to be at MSKCC for about 1/2 day every other week. Decided this wasn't for me. I work and love to work and need to have my full marbles while there. I can't see the time commitment for a drug with these SE's.
My MO agreed that if possible I should have another biopsy so they can get enough of a sample to do the Impact testing. She is looking into this and also immunotherapy for me. In the meantime, since it takes so long to get those test results back, I DO NOT want to be w/o a therapy so she suggested CMF IV chemo. The SE's are minimal and it would be done every 3 weeks at the end of the day. Once they get the Impact results, they can change my treatment if necessary. She didn't think that I should jump to any of the other IV chemo since the SE's are much more harsh.
Crazy thing is that I just got back my TM's and they did go up-albeit VERY little and are still w/i normal. So Weird!!!!!!
I'm scheduled for CMF next Thursday.
Thoughts? Input?
Babs
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HI Babs,
The bco topic Androgen Receptor Testing & Treatment starts out about this possible treatment option and became a way of keeping in touch with the well-loved Hope.
Maybe you can revive the topic, as it came up again recently in our MBC forum.
more healing hugs, Stephanie
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it's been awhile since I've checked in. Things are going great on the Abraxane/placebo or immunological study drug. Just got results of latest scan. Down to 1.4 cm X 1.2 cm in the liver. The lymph nodes near the liver continue to shrink as well. No new cancer anywhere and a complete resolution of the cancer was in thr lymph nodes near my collarbone.
I am having problems with the Abraxane. I have lost the left big toenail and my fingernails are really dis colored and limits from the nail beds. So we've cut my Abraxane by 25%. Fatigue is still a huge factor along with loss of appetite.
I am blessed that I am still able to work full time. I just wish I wasn't so tired and that my neuropathy wasn't so bad. I'm taking neurontin to mask the effects, but I have to watch where I put my feet
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I am so pleased to hear about your awesome response. mTNBC has deserved a breakthrough for a long long time. I always remember your tagline, challenge accepted!, when I feel a pity party coming on.
Can you remind me what trial you are in? What is the immunotherapy drug?
>Z<
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Mattie, it is good to get the update and to hear your great response. I hate that you are having to deal with those side effects. Makes me fearful that I'll experience the same, too. That trial is the one I'm hoping to do next and I have such high hopes for it. It was just recently I realized Abraxane was so similar to Taxol and I did terribly with Taxol. I couldn't stand for more than 10 minutes for all the burning pain in my feet. My nails were also starting to get a bit weird but fortunately it was just my stage 1 treatment so we were 4 and done. I hope you find a way around the side effects and can keep enjoying the great tumor response. I'm rooting for you!
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Barb, I'm so sorry to hear that. I hope they come up with an alternate plan very soon. It is amazing how many women have got heard the words "no other options" only to discover there was another plan and end up springing back. Hang in there and keep exploring. You too gramen, keep up the spirits. New things happening every day!
sandilee, I get exactly what you are feeling about crossing that line. I just hope it works too, you have a very easy time and FYI I've always hated Roller Coasters, they make my stomach ache.....
yes MattieFang, that is great news about your response. It is so crummy about the SE's though. Amazing that you can still work with all that going on. Hope all the SE's settle down.
Nice to "see" you kaayborg and hope you get to do this trial, it is a smashing success and the SE's don't rear their ugly heads for you.
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Hi everyone,
I've been lurking for a while on behalf of my wife, Pauline, who has liver and bone mets. She just started in the SANDPIPER trial, which is for fulvestrant plus taselisib/placebo (targeted for PIK3CA mutation), but she is having a lot of liver/bone pain and other uncomfortable symptoms. We know that her cancer is very aggressive and has shown rapid growth, so she is considering going to chemo. I am interested to know about the trial MattieFang mentioned above - what is the trial drug and what's the trial called?
Gina
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HI Gina,
If you haven't found the Sandpiper topic yet, I encourage you to read and post there...https://community.breastcancer.org/forum/8/topics/.
I'm no longer personally involved in treatment or clinical trials, but I keep my eyes on the MBC and health news.
My liver mets are the most of my problem now..and the least of my problems as I walk the home hospice path.
Greetings from another sister, Stephanie
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Gina, I'm assuming it's a trial with Abraxane- I am having SE from just faslodex. Not liver pain but bone pain and nausea that have gotten better since my third dose. What other SE does she have? Did she have these symptoms before starting the trial?0
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https://clinicaltrials.gov/ct2/show/NCT00748553
Here is one I found.
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not related to symptoms or anything:
In a month I will be a keynote speaker at the American Cancer Society of Snohomish County Gala of hope. I am quite nervous. I will be thinking of all of you while I tell my story. I don't spend a lot of time reflecting on all I have been through. I'm not special. I am proud to represent all of you.
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Gina, the immuno drug is Atezolizumab plus Abraxane (chemo) and I know of it being used in trials for TBNC. It looks like your wife is ER+ so I'm not sure that would be the best option or even possible for your wife. Never hurts to ask though. Here's a link to an article about it:
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Gina,
Cyber hugs to you and Pauline. I have liver and bone mets too and just started on chemo regime of Doxil and Cytoxan which has been very doable so far. I was expecting to just do 4-6 rounds and then back to a hormonal but my onc said it's possible I'll stay on this until it doesn't work and then perhaps weekly taxol. I've wrapped my head around that possibility. Hoping you can take care of yourself and have lots of good support. My wife is having a harder time in some ways than I am. I told her she has to go back to the Cancer Support Community here in LA. There may be one in NYC.
Leftfoot,
You will be awesome and we are all rooting for you. You will never go wrong with sharing your own story and truth. Please let us know how it goes!
Lisa
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