How are people with liver mets doing?
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KC-So happy for you. With this and the Opdivo, it's time for things to turn around.
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Wendy - My MRI showed ascites. I don't have any plans to swap out my liver. It does mean liver function is impaired. You and I have to beat back these mets. In the meantime there are some ways to reduce the bloating. Start with reducing salt. Maybe a diuretic herbal tea like hibiscus? Not the expert here on diuretics and ascites. Curious whether people with more experience think mild diuretics help. Sipping my hibiscus tea at the moment in my usual n=1 experimental mode.
I am getting significant reduction in ascites symptoms and bloating from a regular, short, supported yoga routine of backbends, inversions and twists. I've been practicing and teaching yoga for 30 years so I instinctively know what to do, but with a little guidance anyone can do these. These some of the easier poses.
Hang in there.
KC - you hit the ball out of the park as expected. you got this.
>Z<
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z don’t discredit your treatment (chemo and diet) for decreasing your ascites symptoms! I start “mindfulness and cancer” therapy for the next 9 weeks! Yoga is very helpful too!
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K I’m sorry to hear that you are dealing with this also we need to get our livers strong you are right. So I’m going full on hippy with this one. Carrot juice lots of it, no salt , no more sneaky beers, no more sugar ( though that wasn’t very much anyway).garlic juice three times a day. Also going to get me some bitter melon and drink the juice I make from that as well. Fenugreek seeds soaked over night and first thing you drink in the day. I will loose a ton of weight I fear but it will be so worth it. I’ll keep you posted❤️.
Movement I think helps a lot too you are so right
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Wendy -
Full on hippy is not far from the Longevity Diet, which I think is the best researched cancer diet out there. There is more data to support the Longevity Diet than any other I've seen except for my previous favorite, Anti-Cancer a New Way of Life. Of course, the two are very similar but Valter Longo integrates the work of 10 or so research institutions, includes the most recent research in this fast moving field and has taken a slight lead, IMO.
Complex carbs only (vegetables, legumes, whole grains, minimal fruit), plus a small amount of protein, fish only. And all the high quality extra virgin olive oil and walnut oil you can stand. The oil is key to not losing weight. I'm easily having 1/4 c of oil a day. These oils have a collection of polyphenols that are cancer kills and you can enjoy them knowing every drop is after your cancer with mTor inhibitors that would make big pharma shiver with fear, bringing joy to hippies across the land.
We got this. Any panic attacks, please check in here. This where I come.
Doing okay this morning. Whole grain pasta and veggies soaked in olive oil for breakfast.
bstein - How interesting! I'm developing a course on Managing Cancer with Denial, a strategy I have perfected.
>Z<
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Wendy3, my wife had severe ascites, draining 4-5 liters in less than a week, this went on for months, and with time and successful treatment of her liver with xeloda, it turned around and has completely resolved. While it was at its worst, they put her on blood thinners and diuretics. Not sure if that helped, but eventually as the ascites went away, she quit both, and it continued to resolve itself.
The idea behind the blood thinners was based on the speculation that the cause of her obstruction through her liver was blood clots. That, however is speculative. It was more a suggestion as a preventative measure from it getting worse, than actually treating it, as they don't believe the drug can break up clots.
The ascites is often caused by / accompanied with portal hypertension, which means the liver is clogged up for blood flowing through. Precise cause, unknown, although clearly related to the cancer. Some cancers do increase blood clotting factors. The heart pushes blood through your small intestine and then from there it drains through your liver. If the flow through the liver is impaired, the blood and fluid accumulate, shed fluid, and distend the blood vessels and connected organs such as spleen, umbilical and esophagus veins. My wife had her esophagus scoped because the veins can become varicose and bleed. So watch for tarry stools.
If the ascites needs draining more often than you wish to visit the hospital, you can have a port installed and drain it at home. The port can be removed when the ascites resolves.
If the ascites gets really severe, get an ultrasound to look at the veins and blood flow. If they are very varicose, consider booking a scoping of your esophagus to look for varices that might bleed, and can be banded, as a preventative treatment.
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wow husband11 your wife really went through a lot with the ascites. It’s good to know they can be resolved. Thanks for that helpful information
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scans for me today. See MO in Monday for results. Hoping for the best! Been feeling really good but that doesn’t mean a thing.
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Cathy, Good luck with your scans. At least you won't have to wait too long for results. I hope the results are excellent.
Hugs and prayers from, Lynne
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bstein, I took an 8 week Mindfulness Based Stress Reduction (MBSR) course. A mindfulness meditation pracitce has been helpful. Yoga is a part of the program. I hope you find your program to be helpful. I think you will. :-)
lisajo, chiming in late here but I also found doxil to be a very easy chemo. My biggest issue was acid reflux and fatique. Prilosec helped. Also I didn't lose my hair but I was on a low dose. My onc said I wouldn't, the nurses said I would. I bought a wig just in case. I was still working at the time and only took a day or two off each cycle.
To all of the ladies on this thread struggling with progression and new treatments know that I (and likely other lurker/occasional posters) follow your stories, think of you, learn from you and gather strength from your strength. This thread is an amazing group of women.
Lisa
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Animalcrackers - I'm praying for a wonderful report on Monday.
Z-If anybody has the intelligence, tenacity, and overall "i'm doing everything I can to heal", it is you. Thank you for all that you bring to this thread. And thanks to the rest of you beautiful people.
Wendy3 - You go on and get your inner hippy going!
This is my trial: I4D-MC-JTJF "A Phase 1b trial of Prexasertib (LY2606368) in Combination with Chemotherapy or Targeted agents in Advanced and/or Metastatic Tumors. Anyone have experience with this or have additional info other than what the trial documents say?
Kay
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Good luck with your scans, Cathy!!! Fingers crossed for the best possible outcome.
Husband11. That is the best explanation of ascites I've read. Thank you. I am glad that is all behind you and your wife. What a mess.
Kay - here is a link to the trial description:
A Phase 1b trial of Prexasertib (LY2606368) in Combination with Chemotherapy or Targeted agents in Advanced and/or Metastatic Tumors.
Do you know which arm you are in, which drug it will be combined with? I would ask why that drug is good for you.
It looks like they have been at this for 2014 and this is an expansion, so that's a good sign. You can ask what kind of results they have gotten, what led them to go ahead with the expansion. Phase I trials are about safety not efficacy. That can be frustrating because they have information about efficacy but they may not share it. But you can and should ask all the questions you can come up with about safety and get answers.
Prexasertib inhibits CHK1. From the Lily website ...
Checkpoint kinase 1 (CHK1) is a global regulator of the mammalian cell cycle. In addition to regulating DNA damage checkpoints, CHK1 plays a central role in normal DNA replication, resolving replication stress, progression to mitosis, and cytokinesis. Inhibition of CHK1 in the absence of DNA damage can cause impaired DNA replication, loss of DNA damage checkpoints, premature entry into mitosis with highly fragmented DNA, and cell death via replication catastrophe.
Prexasertib (LY2606368) is a small molecule that in vitro preferentially binds to and inhibits CHK1 and, to a lesser extent, inhibits CHK2, thus inducing DNA double-strand breaks, a loss in checkpoint function, increased replication stress, and cell death.
Sounds like Prexasertib ramps up the effects of chemo drugs, which interfere with mitosis. I'd want to know whether it is more active in cancer cells and why otherwise the side effects could be significant.
Keep us posted.
>Z<
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Z - as usual, you are a wealth of knowledge. I find this interesting because I was found to have the Chek2 mutation at initial Stage II diagnosis. Curious if this trial could be beneficial for me. I'll definitely ask my MO about it.
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Wendy your full on hippy diet sounds interesting. I’ve never had fenugreek seeds. Do you soak them and drink the soaking water or seeds too? I just read they help with inflammation. I don’t think I’ve ever had pure garlic juice.
Kaylynne I hope you get wonderful results from your trial. You are way overdue for a break.
My husband is home and recovering well from his brain hemorrhage. I’ve been totally exhausted, probably a combination of Ibrance, another (my 3rd in 5 -6months) sinus infection and a stressful couple of weeks. I need to get back to my Quigong, Pilates and walking/birdwatching routines. Also try a couple of the anxiety reduction guided meditations I downloaded.
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Ok, there’s no way I can catch up with comments having just read several pages, but I will sum up by agreeing with what previous posters have said: F&#* cancer. I hate cancer. Leave my friends alone, stupid cancer. Hugs to all and a second one to Kaayborg, hate to hear about brain mets. Glad you can start treatment immediately.
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Thanks for all good wishes on the results of my scans.
50sgirl - one of the great things about being in a clinical trial is that you get your results fast. On this trial I get scans in closer intervals than with a standard protocol. I get scanned every 2 months or sooner if we suspect something is up.
Shetland - you are so right - the bone mets thread and this thread are impossible to stay on top of.
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Z i finally got to talk to my MO about the f1 report. She said that, based on f1 report and ERS1 alteration, that it is Ibrance that I have been responding to, not Ai. So that makes sense to me except ibrance is not supposed to work alone. But I can see that for those of us who are resistant to hormonals, maybe its possible. Maybe that scenaro has not been studied. As for next treatment, after progression, she still said she is think about AA. I said I dont want to take aromisin, I've take it before and obvious none of those drugs work for me anyway. She talked about fda and how AI has to be ordered with drugs like ibrance and afinitor. But between the lines I'm wondering if the AI could be ordered but not taken?
So, my PET is ordered for late May, after my trip to Hawaii. She said if I have only a little progression I could stay on ibrance. That's what I hoping for and I think I finally understand. I may be flushing my AI down the toilet from now on.
Meanwhile am having a test. On Monday to make sure i dont have PE. I'm having some pain tightness in my center chest where I hve some mets in lymph nodes around the esophagus and sternum.
There's always something new to think about on this tread. Let me know hat you think, ladies.💞
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I had my surgery on 4/5 on my leg (found out a day before the BC had spread causing a small fracture at the top of my right femur) to put in a rod and screw to strengthen my femur. This was really successful and I've been recovering well. Even walked a few steps 2 hours after the surgery!
However, I started to get stomach cramps which I put it down to recovering from surgery. I could hardly eat or drink - so unlike me! However, these continued and I went yellow! Had a booked MO appointment and my bilirubin was 12.1! She got me an immediate ultrasound and they found a blockage, with a MRI confirming and giving them more detail. It was decided I needed a stent put in and my MO put in an order for an urgent ERCP procedure. Unusually, for Kaiser, we were having real trouble getting an appointment. The first urgent(!) one we could get was in 2 weeks. I had resigned myself for waiting, but was feeling really rotten and also worried about the level my bilirubin could get. My MO was not happy and decided this was unacceptable, so she booked me a bed for that night in the oncology surgical ward and I had the procedure as an emergency the next day. My bilirubin had gone to 19 but came back to 16 once they rehydrated me (I had really gone off eating and drinking) After the procedure on Thursday, I came out Friday. I am now waiting for blood tests early next week to see if the stent is working. I am feeling better, though a bit shell shocked. I'm eating and drinking (DH is like a Sargent major on that 😬) In the meanwhile I managed to fit in a Friday radiation planning appointment for my femur and will start that next Wednesday. I am currently enjoying a few 'medical appointment’ free days and being well looked after by close friends who extended their trip to the US (from the UK) to come and look after me.
I'm off Xeloda which while it worked well for two scans and 6 months did let the bone progression in and also was for me a miserable drug, making my feet and hands so sore. It was beginning to look like I would have to move on - but I was not happy if it was still working. My MO will put me on Chemo once my liver is better and I've finished radiation (just got 5 days of treatment) In the meanwhileI'm on hormonal treatment which makes me feel a little safer than nothing at all!
Wishing everyone well.
Sarah
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There is so much going on in this thread. As I read each and every one's story, my heart aches for those going through all these trials and tribulations. Hang in there, one minute, one hour, one day, and then repeat. You all are in my prayers.
Therese
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Sarah - I am so sorry you had to go through all of that. Good thing your MO got you in for the emergency surgery. I hope the stent does it’s job, and your numbers come down. Wishing you the best
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Hi all, I don’t post much, but do read almost daily and wanted to let you all know I think about each of you and wish I could give a bunch of hugs!
Jamie.
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Kathy That sure does not sound like fun, but I'm glad you got the stent put in.💞
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Another daily reader full of admiration for the knowledge here
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Scwilly, oh my goodness. And I thought I'd been going through it. Deepest thoughts and prayers are covering you with care. Glad you're feeling better. Now let's be all the way better.
I never cease to be amazed how quickly things can change. Stupid, stupid, stupid, STUPID disease! I hate you so much, for me and for everyone.
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Grannax have you tried faslodex in the past? From what I read, and what my MO told me, it inhibits estrogen by a different method than an AI. I have the ESR1mutation and so far am responding to Ibrance/Faslodex.
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Liwi. No I have not tried faslodex yet. I mentioned it it to my doc , she said no, they are all the same. I think she means that i am resistant to any form of estrogen inhibition. So it wouldn't work either. I'm so convinced that i did not take my letrozole tonight. I want to have all the energy I can for my Hawaii trip. She told me i could take two weeks off of ibrance too. I wont have to take it the week I'm in Hawaii. 💞🌺🌴🍍🎋👒🐋🐳🌈🌅🐠
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Good idea to do all possible to feel good during your trip. Have a great time in Hawaii Grannax!
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have a wonderful trip, Grannax!!!
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Sarah - what an ordeal! I guess urgent is just level below emergency. I think anytime you turn yellow and there's a blockage it should be considered emergency. Glad the doctor made that decision. Of course 2 weeks for an urgent procedure is unacceptable!!! Glad you are doing better. Keep us posted on how you are doing and if the blood tests show that the stent is working. ((Hugs))
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Sarah, you have really had a week of challenges to say the least. I am glad the femur surgery went so well and that your MO advocated for you to make sure the stent surgery happened so quickly. Praying for things to turn around quickly with your bilirubin levels now that you have the stent.
Grannax, Ibrance will not work without hormone therapy so please be careful about not taking Femara once you return from your fabulous trip! Even if you are resistant to Femara alone, combining it with Ibrance may be sufficient. I strongly disagree with your MO that you are automatically resistant to any hormone therapy and that you are automatically resistant to Faslodex if you are resistant to AIs, if that is what he/she told you. With your ESRI mutation, the reality is you will probably get less time on these drugs than someone without the mutation and you will likely eventually develop resistance but it does not mean they will not work at all, especially if combined with an Ibrance/Kisquali/Verzenio or even Afinitor. The only CDK 4/6 inhibitor of the 3 that works without hormone therapy is Verzenio (Abemaciclib). It is probably worth giving Faslodex a shot before abandoning all hormone therapies. Hope Hawaii is pure heaven! Which island are you visiting?0
