How are people with liver mets doing?
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Sadie I am so sorry. I can see though (believe it or not) why your MO is not a fan of genetic testing...and frankly after having it done twice now I personally agree with him...I think its really a waste of time... NONE of the recommendations for treatment that were recommended worked for me....at least not yet.
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So sorry Sadie for the sucky news. Yeah, I heard on one of the many webinars I have attended about MBC that looking at the ER/HER2 status with progression is almost more important. I have heard participants ask if they should do F1 with each progression, and the experts said to look at ER/HER2 at least if they do not do F1.
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Sadiesservant , I am sorry and saddened to hear about your progression. Even though you suspected something was happening, I am sure it was difficult to hear the news. MBC is unkind and has no mercy. It is unpredictable for each of us. I hope you and your MO find a treatment that is effective at stopping the spread with no SEs for a long time. You are in my thoughts as you await news of a new plan.
Hugs and prayers from, Lynne
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sadiesservant,
I am so sorry to hear this. But now perhaps you can get your favorite MO to drill down and see what's going on with you and find a suitable treatment that will help you out.
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Sadiesservant ,so sorry to hear halaven hasn't worked for you. I am having one more round of halaven before my next scan and I find out what's happening inside. I am quite fearful it isn't working everywhere I want it to.
Wishing your doctor finds a workable treatment for you as soon as possible, keep us posted.
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Thank you everyone. I can't tell you how much it means to have your support (and thank goodness the site is now stable enough to be back online!). I have to admit, I'm getting more than a little worried. Nicole, I know you understand what it's like to have several fails in a row. It seems like it's picking up speed as well judging by how quickly the largest met doubled in size. I think the most likely next step is a biopsy and then back on Xeloda as I had success with it previously with my liver. Here's hoping it works again. If my biomarkers come back as ER+ still we might consider A/A.
Denny, lots of folks have success on Halaven. I'm thinking positive thoughts that it will keep things stable for you as well.
Wishing everyone a happy Tuesday. Take care.
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Well I got a call from my MO. She spoke to my IR...they would rather wait to re-Y90 the one lesion....David (my husband) agreed we should wait till after next scan. SIGH.....so I am going to wait and keep faith that it wont get too much bigger or anything new..that will be June...
SS...yes...I have had everything fail... im on treatment 6 or 7 now...only have Gem/Carbo and Abraxane left...or trials.
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I think technically I am on number 9 Nicole. 😊 so, no appointment with my oncology tomorrow as I am opting for the biopsy first. So more waiting
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ugh i had a whole post typed and it signed me out.
Sorry to hear about the progression Sadie. Hopefully the next one will be the trick !
I had my bloodwork done and my liver enzymes have “creeped up a bit” meaning over normal. The bilirubin is okay for now but higher than it was in months. She said it could be the ibrance but we will have to keep an eye on it. It’s stresses me out now more than it should because it “creeped up “ last summer when I was hospitalized with failure. And it all just brings me back. I really dislike it. It’s such a fear now. Fear of liver failure. Fear the cancer is active again after 5-6 months. I need to be talked off a ledge by someone rational.
I have my scope next week and scan Easter week. Finally.
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Dear b-a-p,
Hang in there for now. I know it's hard. I just got all of my results back from my whole panel of blood tests and the hepatologist who I saw thinks that there is no pseudocirrhosis there. Her takeaway is that the only way to definitely determine that would be a liver biopsy, but based upon the blood work, she doesn't recommend it for me unless I am trying to get into a clinical trial where they need a flat out answer. To me, that's good news.
You know that your bili and other liver enzymes can fluctuate, so try and keep the faith until you do your upcoming testing. I hope that all goes well.
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Sadiesservant, I am sorry that you are experiencing progression. You are in my prayers.
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thanks Bev.
My lovely MO just called and said she was sorry if it seemed like she never came back to answer my questions about my fatigue and itchiness. She didn’t mean to.
So she said this GI appointment I’m about to have , she is hoping is going to provide more answers and direction for the long term because we know my liver isn't normal. Which could mean we might have to change treatment which sucks cause it's working, but we have to think long term. She said it’s great I don’t current have active disease that we know about but the liver is obviously struggling. She knows I’m tired of draining myself and I mentioned the TIPS procedure which would be the domain of the GI.
sShe said she doesn't want me to leave disappointed in the answers bc we might not get them right away. And we talked about last summer and they have all chatted about it and come to the conclusion that I'm tricky and they have literally no clue what happened first and why it happened. Was it treatment toxicity ? Was there so many Mets that died off and scarred ? There are too many variables. I asked her to add the liver enzymes to the test next week and she said that would be okay. She just didn't want me to be upset if things trended up a smidge or didn't change enough cause it's only a week.
My husband was just told he was a close ish contact of a neighbour with COVID. He said they were outside the whole time and about 4.5 feet apart. Here’s to hoping I make it to my appointment. I know I’m gonna be sedated so I’m gonna have to rememeber to ask her the questions so she can tell me after lol
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I hope you can get a sucessful strategy out of the upcoming meeting BAP. My wife is struggling with the return of some ascites and the way it is affecting your digestive process. She can't eat much without feeling upset and bloated.
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I have bad news and need help... I think I have Cachexia..... I have been losing weight and am down to 95lbs..I am lossing like a pound every week or 2 for the past month... I heard omega 6's are good but yet they are very bad for triple neg. I did message my MO waiting to hear back..i heard this can kill me??
I just did some research and the TUDCA I am taking I was taking 1000mg a day for the past 3 weeks I have been taking 2000mg a day , while it has made all my liver enzyems NORMAL....i just read this...
When researchers gave chunky mice leptin injections along with PBA or TUDCA, the animals rapidly dropped weight. After 30 days on the drugs, they had lost at least 16 percent of their body weight, according to Ozcan. The $64,000 (or, perhaps, $64 million) question: will it work in people? Not sure, he says, but adds that one day he hopes to conduct clinical trials along with other researchers.
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Nicole- I don't know about Omega 6's or TUDCA. But why are you losing weight? How is your appetite? Are you having nausea/vomiting or diarrhea? Have you tried Ensure or Boost drinks? Ensure made into a milkshake with ice cream to add calories. Maybe your MO can give you an appetite stimulant like Medical Marijuana pills (script) or the prescription medicine Megace. How is your albumin level on your blood tests? That shows nutrition status. You definitely need to talk to your MO if you are losing that much weight for no apparent reason.
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I believe that megace for improved appetite has fallen out of favor. The newer drug is remeron (available as a generic.) For people suffering from appetite issues, this is a prime thing to discuss with palliative care.
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Bev appitite is not the problem I am eating more now than ever...I EAT TONS of food and fattening stuff too...I talked to a women whose husband has Cachexia she said he had a GREAT appitite...
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cachexia is a metabolic disorder triggered by the cancer & usually eating more by itself is not going to fix it. The metabolism is all out of whack, there's inflammation & muscle wasting... it's all due to the cancer triggering various chemical processes.
Get a referral to the nutrition support at your cancer center & get properly assessed to see if you're pre-cachexic or have cachexia. They can then develop a treatment plan.
The cachexia society put up ESMO's cachexia treatment guidelines which would also be good reading but I would not implement anything without getting your MO and an oncology RD on board because the interventions need to be tailored to your current health status https://www.cancercachexiasociety.org/assets/docs/...
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Nicole, I’m sorry that you are experiencing this. You are so tiny that you can’t afford to let this get out of control. You have received good results advice but I would also recommend you stop taking the supplement right away until you can figure out the cause of your weight loss. Unfortunately, so many of these supplements are poorly researched and have effects and contraindications that are unexpected
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Just catching up on the last few days of posts.
SS, So sorry about your progression. I think I know how you feel because I was in a similar place late last year. It's like the terror I felt when I was first diagnosed Stage IV. I had so much anxiety all of the time and didn't have any skills to make it better. I wasn't able to sleep well. I would wake up in the middle of the night and couldn't get back to sleep because my mind was full of terrifying thoughts. I believe that stress makes my cancer grow so that made me even more stressed! I was stressed about my stress!
Seeing a Psycho-Oncologist helped me eventually but it took months to get an appointment. I asked her if there was anything I could read to help me while waiting and she suggested "ACT with Anxiety: An Acceptance and Commitment Therapy Workbook to Get You Unstuck from Anxiety and Enrich Your Life" by Richard Sears.
I also found a book, "Full Catastrophe Living How to Cope with Stress, Pain and Illness Using Mindfulness Meditation [Paperback] Jon Kabat-Zinn. I didn't finish this book (It's huge!) but read the first quarter of it and found it useful.
In addition, my palliative care doc put me on 15mgs of Remeron (Mirtazapine). This helped me in several ways. It helped me to sleep, improved my mood, and helped my appetite. I was also on Megase (Megestrol) for about a month. The Megase really helped me gain weight. Part of my anxiety was due to my steady weight loss.
In January, I started seeing an amazing Acupuncturist who overhauled my diet (no sugar, no dairy, no alcohol, very little caffeine, no fried, spicy, or salty food) and treats me every week.
Lastly, as you know, exercise is the best natural mood enhancer. Struggled to get enough exercise with my lung issues at first. Now that I found a treatment that works, I can almost exercise like I used to.
Of course, getting on ARX-788 and seeing my scans improve keeps my anxiety at bay for now. No treatment lasts forever. But my Psycho-Oncologist pointed out that, since I have already been in that deep, dark place and learned something about how to get back I will probably be able to better cope next time. And there will be a next time.
Sorry to go on and on with such a long post but hope some of this will help you.
Hugs, Susan
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Nicole, I am really sorry to read about the cachexia. Does your Doctor have any suggestions? If the problem isn't appetite, then its entirely metabolic. Leucine is an amino acid that has been used to help put on weight in cachexia. Oxandrolone (anavar) is a potent oral anabolic steroid that has an excellent safety profile. It has been used for burn victims and cancer patients to speed healing and reverse cachexia. It has very low potential for masculinizing, unlike other anabolic steroids. Enobosarm is also in clinical trials and is showing promise for reversing cachexia in cancer patients. Anavar would be a better bet though. It's been used on burn patients for decades, and its considered safe for women and children. But of course, ask your Doctor about this. Oxandrolone is only legally obtainable through a Doctor.
Oral Anabolic Steroid Effective for Cancer Cachexia : Oncology Times (lww.com)
Enobosarm (GTx-024, S-22): a potential treatment for cachexia - PubMed (nih.gov)
The Evolving Approach to Management of Cancer Cachexia (cancernetwork.com)
Testosterone and its derivatives, such as oxandrolone and enobosarm, are being studied in patients without cancer who are experiencing cachexia. In healthy individuals, a recent study reported that androgen deficiency was strongly associated with reduced lean body mass and strength, while estrogen deficiency resulted in an increased proportion of body fat, and both oxandrolone and enobosarm contributed to heightened libido.[35] Currently, enobosarm, a selective androgen receptor modulator with decreased potential for virilization, is under investigation for the treatment of cancer cachexia in a phase III clinical trial.[36] Preliminary unpublished reports suggest improvements in lean body mass with enobosarm; however, no functional improvement has been observed, thus limiting the potential for approval of this agent by the US Food and Drug Administration.[37] Fluoxymesterone, an anabolic steroid, has been studied in cancer patients with weight loss, and was shown to be less effective than megestrol acetate and dexamethasone as an appetite stimulant.[38]
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Thanks Husband. You’re right , the fluid bloats and even if I drain before I have my bigger melas like supper , I bloat easily. It’s really annoying and upsetting. Sorry your wife is also dealing with it. I told my MO that it looks like I’m smaller but I drain everyday so in reality the ascites are not really improving. So fingers crossed they have a solution.
Nicole , sorry you’re dealing with the weight loss. The others are right. It’s going to take more than just eating to resolve it. I hope your MO has some suggestions to help you with it.
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Thanks Susan (and anyone else I have missed). Biopsy scheduled for April 12th at which point we will see if there have been any changes to my biomarkers. Then the decision on where to go next. As I think I mentioned, it seems my MO is leaning towards going back on Xeloda. It did a good job of beating back the mets before. Here’s hoping my marrow is up for it!
Doing okay psychologically. It’s helpful that I have a certain amount of excitement building around stepping back from work. One more week to go. It will be a big change of course but the thought of actually having the time to enjoy my garden (instead of cramming all the work into weekends) and maybe even reading a book! There’s always so much to do around my old house that relaxation moments are often few and far between
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Sadiesservant, consider this
Maitake mushroom extract in myelodysplastic syndromes (MDS): a phase II study - PMC (nih.gov)
It might help combat the suppression of your bone marrow from xeloda. Ideal dosage from a previous clinical trial is 6 mg/kg body weight based on a dosage trial in breast cancer patients.
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Thanks Husband!
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Thanks so much Husband
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b-a-p, is your albumin or total serum protein low & contributing to the ascites? I ask because when I was re-reading that cachexia document I posted for Nicole they did touch on hypoalbunminemia & it seemed a few dietary interventions might give it a boost. I'm looking at it as my albumin is bouncing around again.
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thanks moth ! I’ll take a look at the article. It has been lower than normal in the past. It was 18 last check and normal is 32 I think. I don’t think they check it regularly. I should ask. I’ve been upping the protein bc I know that can help but I’ll def give the article a read and see what else I can do :
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My wife has been on enobosarm now for 7 weeks. She too has liver mets. Thus far, she is tolerating it well. Her appetite has yet to be impacted by her condition, so I can't comment on benefits there. Three observations I can make so far are:
- Her tumor markers are still rising (though I imagine an effective treatment might also cause tumor markers to rise if it causes cell death).
- It does seem to "enhance" the side effects of her Xeloda. She never had much issue with blisters on her hands and feet until now...but now it is pretty dramatic, yet she just presses on.
- Most surprising, her liver enzymes had been a bit of a mess for months. Her AlK Phos was particularly wonky...but now her LFTs are all normal.
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Thanks for posting the objective observations on enobosarm Spouse4life. I pray that your wife benefits from her treatment, and that it is with minimal side effects. How long had she been on xeloda before the hand foot syndrome got bad? I really can't remember the time line for my wife. She got it pretty bad, scalded feet, couldn't go barefoot, couldn't wear socks. She found the only thing she could tolerate was flip flops. We tried every conceivable ointment, moisterizer, corticosteroid cream, etc. Nothing worked, despite it working for some women.
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