How are people with liver mets doing?
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Miao, why did your MO put you on such a high dose? And why start you lower and work up to your dose? I didn't think anyone took more than 6 pills/3000mg a day. Your dose is super high. Are you having X side effects at that dose? How is your bilirubin and alkaline phosphatase?
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Liver pain is much better since steroids. My CEA since Aug 1st has doubled. Going to rescan liver this week to see what is going on. On Abemaciclib, 2 months now. Dr thinks lining of liver was inflamed, like a pleurisy.
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Hi Guys I have scans on Monday and have been told if Navelbine hasn't worked I have no treatments options left. Anyone in same boat. Really scared my little boys only 12.
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Oh Donna, holding you in my heart for good scan results.
Katty
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JFL, I agree that I have been prescribed an unusually high amount of X. When I questioned my MO he explained that X used to be prescribed 2 weeks on and 1week off, but because of unmanageable SE, MSKCC came up with the alternative plan of one week on and one off.
I weigh 185pds and I think dosage has something to do with it. It could also due to the fact that the lower doses did not affect my TM in any way. Except for the liver toxicity and low platelets, I am not suffering from the typical SE associated with this drug. In fact I have more energy than ever, I think it might something to do with the ingestion of a few drops of Lugol solution in the morning, and the antifungal diet, conducted against my MO skepticism and disbelief.
Here's my recent BW chart. I don't see the ALP. Please let me know what you think. I have, meanwhile, reduce the amount of pills I'm taking to3/3 since today is the last day before the week off
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Donna72,
So sorry. Praying for you. Are there trials?
I’m also on what is likely my last treatmentHalaven. I did just start it- but we are not really hopeful. But, my children are grown. Just praying and sending hugs.
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My liver mets have continued to grow over the last year but are still at a manageable 4 cm-ish x 3 plus a new 2 cm. Tumor markers continue to rise. Up from 180-500. Have been through mln0128 trial, Navelbine, Halaven. Currently between drugs. Ibrance, fulvestrant, Xeloda, Abraxane, letrozole all also failed. I don’t know what my onc will want next. I have asked for Keytruda but she says it’s not approved for BC yet (but lots of people are in trials or got it free under compassionate care). I’m in Dallas but I will flee to MDA-Houston if they have something for me.
Is this normal to just go through drug after drug every 2-3 months?! I’ve done Foundation One and they didn’t find much. Approaching 3 years with stage 4. Fed up but still feel pretty good.
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Sarah That sounds very discouraging. I live in the Dallas area, too. I have gone down to MD A a couple of times. It's not that far for us.
No I don't think I've heard of very many ladies here who have gone through that many TX so quickly. But, MBC is unpredictable and each person responds differently.
I don't know if you would be a candidate, but I had a very successful local TX for my liver. It's called radioembolization. My doc used y90. He is is here, Dr Travis Van Meter. He's an interventional radiologist who specializes in oncology and this procedure. I have lung and chest mets too.
It might be a good idea to set up a consultation with him.
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Donna I’m am thinking of you, hoping for good scan results.
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Donna, that is tough and scary. You are in my thoughts and prayers. I am in a similar boat, but my kids are grown. So, I am just trying to keep my chin up, a smile on my face and celebrate life.
Therese.
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Ladies .... just found you today. I am trying to understand my CA 27.29 marker my numbers keep going up 2-5,000 points every 2 weeks. I started on Ibrance and that didn't work and have now switched to Afinitor. I am currently at 15,000+ and it just started going up in April (2,000) of this year. I have mets (?) in liver and spine. Is this something you are familiar with? My Dr. told me the highest tm he had seen was 14,000. I sure don't feel like I am dying any time soon.... still selling peaches at the farmers market and running the mail route .... trying to keep up with my 12 year old. Would love some wisdom..... Thank you in advance. Shana
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In my thoughts Donna xx
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MTM. No I don't know much about TM. My doc does not do them for me..I'm still on IL and it's still working. That number does sound scary. I'm sure someone will jump on who can answer your questions.
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For those running out of drug choices, my research doctor put me on Estradiol.!! Yes, it is estrogen.... I found this article that explains how it works and found it very interesting. It also gives me more hope. I just started it on Saturday, so we will see what happens.
https://www.sciencedirect.com/science/article/pii/...
Shana, my doctor looks at both scans and TM. Some peoples marker count is not always indicative of what is truly happening with the cancer.
Therese
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I will post here, as I believe the LaLady (Claire) communicated through this board most. As those who knew her, she had stepped away from discussions after her trip to England. We had been checking on each other by email. We had somehow made a special connection.
Claire’s sister emailed me late tonight that she had died Wednesday from aspiration. There had been repeated issues of fluid build up. She was surrounded by family and loved ones.
We make these unique connections, not just as cancer sisters. A few of us find that a common core exists and really “ know” this person we’ve never “met.” What a spirit Claire had.
I’m heart broken.
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oh Kaption that’s awful - sending love to you and her family.
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I’m so sad to hear about this loss. Claire was an extraordinary woman and a beautiful soul that made me laugh with her wit and charm. I remember the time when she came to New York and we spend a few delightful hours together talking about show biz and all the shopping she was planning on doing that day at Bergdorf....
She will be sorely missed. May she RIP.
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I remember LaLady from the Ibrance boards a while back and I'm so sorry. May her memory be for a blessing.
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Kaption, I have been sending her notes. I knew she was struggling. She was my first friend and helped me so much. We kept in touch regularly. I can't believe it and I thank you for the letting us know. She was so interesting and we had so much in common. I'm heartbroken. RIP Claire. I will never forget you.
Thank you Kaption for letting us know. I'm really worried about Babs too. She was helping me with address about a wig in NYC and I haven't seen her on the boards in forever. Do you keep in touch with her? She's a hero too.
Hope you are doing ok. I'm struggling with this new chemo and I feel like I'm losing hope too. They keep telling me I have lots of options, but they sure don't make you feel so good.
Hugs to you,
Anita
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Anita,
I have been worried about Babs too. No info that I know about.
Such a sad part of our stories to make and Lose these dear people. We are blessed to have been touched by them.
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Anita, you just started...there are many TXs you have not tried yet. You do have many other options. Have seen people's outlook change once the right TX was found, I wish the same for you
Babs is struggling right now but still working full time. May she experience a breakthrough as well
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Girls with liver mets,
I had my live biopsy. My CT scan from july 30 , 2018 said Many widespread tumors are seen in the entire liver and many new lesions have come since last CT from May 16 2018. lesions have run together and formed a 5.8 cm tumor which was 4.8 last time. some lesions have have become smaller since last time. All my liver function test are triple normal. anf all TM have increased. I am supposed to go for chemo tomorrow does 2 of the new regime, but I don´t want it if everything is getting worse.
Do any of you know what would work best in this situation??
Raven
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Kaption - thanks for letting us know about LaLady (Claire). She was incredibly active. She travelled so much and I think she had recently started a new job. I would think to myself how great that she was able to do so much. She was very helpful on this forum. She used to recommend hair halos for those who had thinning hair. She was a staple in this community. Itsso hard to believe she left us so soon. She will be missed.
I’ve been worried about Babs too. I can’t believe she is still working full time. Hope she is well enough to pop in and let us know how’s she doing
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Celebrate,
Could you start a separate topic for the Estradial therapy? There's a bunch of us who would love to follow your progress, and would love to talk to our MOs about it.
Thanks,
Jennifer
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kaption- thank you for sharing the news about Ckaire. I am sorry for your loss and her other friends and family. She was a wonderful spirit.
Babs- know we are thinking of you.
Everyone else I give you s big cyber hug.
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Very sad to hear about Claire today!!! She was such a bright shining light on the boards.
Kaption and Sarah, Your listings may not be up to date, but I don't see where either you have had a PI3K/mTOR inhibitor? Its such a common mode of resistance to drugs. There is affinitor, approved in combination with aromasin or fulvestrant (it makes cancer become sensitive to estrogen again, so have to use in combination with an anti-estrogen) and a clinical trial of Alpelisib with Fulvestrant.
https://clinicaltrials.gov/ct2/show/NCT02437318
You might also consider a trial with a CDK7 inhibitor (called SY1365) in combination with fulvestrant https://clinicaltrials.gov/ct2/show/NCT03134638
I believe that trial is set for expansion in the fall. And there are other targeted agents, as mentioned above estradiol is one, so I hope nobody is really running out of options.
In addition, it was interesting to hear that the Stanford cancer vaccine will enter trials soon, that one is where they inject right into the tumor a CpG oligo in combination with an OXO40 agent to boost T cell activity, will start clinical trials soon. It starts with a safety test of blood cancer, but then will move to solid cancers.
https://www.sciencealert.com/cancer-vaccine-stanfo...
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Kaption, Thank you for letting us know about Claire. She was a cherished contributor to these boards and will be missed. I enjoyed reading about all her travels, plans and adventures. She lived her life fully until the end. I hope I can do the same. My prayers for peace and comfort go out to her family and friends. Rest in peace, Claire.
Hugs and prayers to all of you from, Lynne
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Kaption, thanks for letting us know about LaLady. Just breaks my heart that we have lost another sister. Am also concerned about Babs and although I know Z has posted about being so busy, I think of her too.
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Thank you Cure-ious for the info. I have not updated my info for quite a while.
I am actually on Herceptin and Halaven right now. This is likely my last treatment. We have discussed trials, but I am not a good candidate. I’ve been dropped from 3 of them. I am HER2 equivocal and officially “ had many treatments.” Trials like healthier people. I’ve been at this almost 5 years.
I’ve been pretty lucky on the pain side- especially since adding liver involvement several months ago. But the fatigue and weakness are getting overwhelming. I have not given up, but I’m looking for qol. I will certainly keep your suggestions in mind as I talk with my MO.
Just enjoying my loved ones and the gift of each day.
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Hi blaineejeni,
Can I ask you about your experience with Halavon. Did it work on your liver mets? Did you take it alone or wit something else and for how many cycles.
Need urgent answer am going for chemo tomorrow and want something else.
Raven
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