How are people with liver mets doing?
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husband, I’m so sorry your wife is having to experience this. I understand you completely when you say we have limited options here. We’re completely backed up here on the West Coast as well to the point that they are triaging patients. I have to say, I feel for the doctors having to make decisions about who gets priority treatment…. It’s so challenging right now.
I hope your wife benefits from the break and that Xeloda or another treatment knocks it back. My thoughts are with you both
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Husband11- a agree that a little break if it doesn't lead to much progression could be very welcome. I just hope that the Xeloda gets started before you need massive die off of cancer cells. maybe a lower dose also- and 7/7 schedule seems to be much more tolerable- I Don't know how Canada likes to prescribe it- but, here, some people get really high doses based on weight and a 14/7 schedule which is really hard to do- when I switched to 7/7 and 2000 per day I had very few problems and good success.
Hugs to your wife -
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Dear Husband11, you can get proof of what is happening with the liver by getting an ultrasound. I just hope your wife can start capecitabine as soon as possible and believe she'll have a great response like last time. Hugs,
Saulius
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The nice thing about xeloda is the way it is dispensed to the patient in increments of 500, 150 pills. You don't have to take what they tell you to take, and she didn't in the past. She went down to 1150 2x a day, and 7 on 7 off, despite being told to take it 14 on 7 off. During the time off, she took oil of oregano, and that seemed to enhance the effect of the xeloda, based on her having stopped and restarted it twice. It was interesting to chart her tumor markers on xeloda. It falls just as much during the week off, as it does during the week on.
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No data in humans yet, but there is quite a bit of research relating to the experimental peptide, bpc 157 relating to rat livers, reversing cirhossis, ascites, fibrosis caused by a variety of stresses from radiation, alcohol, carbon tet, bile duct blockage, etc.:
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Hello Everyone,
I'm new here having had a recent progression to liver (dx'd bones in 2020). I'm in a trial, phase 1b, for RLY-2608, a targeted PI3Ka inhibitor that was mentioned here so I thought I'd share my experience so far. I just had my first scan and bones are stable and liver lesions have decreased quite a bit. What's unbelievable is the lack of SEs especially in the beginning. I'm now noticing slight fatigue but I had that with Ibrance/Letrozole. My understanding from discussion with the trial lead, since it's targeted toxicity is much lower than Piqray (my glucose remains in normal range, no nausea, no GI issues). It's worth looking into for anyone with PIK3CA mutation (not sure where all trial locations are but I'm in NY). Really hope this keeps working.
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Hi everyone,
I need help/advice. My mum's last scan showed a lot of Mets in the liver but stable disease (mid December). She continued on her ibrance/let combo and had her last appt just last week where everything was fine, liver enzymes ok but AST was 150ish (normal range til 30) and Gama GT was elevated too.
Since a few days ago she's complaining of her abdomen swelling and yes it's noticeable. Is this ascites? Is this a sign ibrance failed? What's going to happen next? Is ascites a rly bad sign? Could she still get a different treatment? I'm so worried and I don't know when we can see her oncologist again
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daughterof, I have no medical training but I think you need to take your mum to see a doctor as soon as possible , don't wait to see an oncologist , it could be something else, but swelling always needs to be investigated.
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daughterof, early stage ascites can be difficult to diagnose. Doctors are taught to tap on the abdomen and look at the reaction, and I can tell you that test is inaccurate and misses it in some cases, like my wife's ascites. An x-ray can also miss it. Pretty much the best diagnosis is with an MRI, and sometimes if its in the right place, ultrasound can diagnose it.
It can be treated with diuretics, and drained by paracentisis. If the cause is reversed, the liver has potential to heal, and the ascites can reverse itself. If its ascites, you mother should have an endoscopy to make sure she isn't developing varicises in her asophagus, as that is a side effect of hepatic hypertension, which can cause the ascites. But first of all, try to get a firm diagnoses as to what is going on. I would ask for ultrasound and or MRI. My wife had a large amount of ascites and both the tap test and an xray had them telling my wife she was constipated. Which was later proven to be completely wrong.
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Thank you all for replying. We are trying to get MRI scheduled for next week. Meanwhile her family doctor ordered diuretic therapy.
I'm scared and hating life at the moment. She's probably failing ibrance and I don't know how she will take the news.
Her oncologist thinks she should do taxane first and if that fails xeloda.. later, maybe faslodex if everything is stabilized. Does anyone have experience with any of these drugs?
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daughterof - I found Xeloda to be easier then Ibrance. I took Ibrance with Faslodex. The only side effect I had from Faslodex was joint aches for the first few months. I hope the diuretics give her some relief while you play the awful waiting game.
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When my wife was first diagnosed with liver mets, the Onc recommended a taxane based chemo. This was back before cdk4/6 inhibitors were available. We asked about 2nd and 3rd choice alternatives to the taxane, and settled on xeloda. At first my wife was receiving too high of a dose, and it caused her considerable hand foot syndrome (skin peeling, burning). Later, the dose was reduced to 1300 mg 2x a day, and she reduced it herself to 1150 2x per day. She also did 7 days on and 7 days off. It was very tolerable and effective. Although this is very individual, it was much more tolerable for her than verzenio (abemaciclib). It never stopped working, but we switch to palbo when it became available.
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Husband11, how is your wife doing today?
Saulius
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Thanks for asking Saulius. She got drained yesterday, they took 3.8 L out of her. She feels a lot of relief from that. We are awaiting the return of the Oncologist so we can get the change of treatment from Abemaciclib to Xeloda. She cought a cold 5 months ago, then covid after that, and she has had this nasty wet cough ever since. She has had an MRI and other scans, and there is no sign of lung mets, but her cough continues to get worse. She is now on a steroid inhaler and it might be working. Otherwise, she is up all night long, coughing and choking. She is giving herself bpc 157 injections daily, in the hopes that it might reverse her ascites. It works on rats, never been tested for that in humans as far as I know. It has been tested in humans for general healing, and it was found to be safe and in many cases effective.
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Dear Husband11, I, same as others here, have so much respect to the courage and thoroughness you and your dear wife show. I do not know what is your profession but your analytical skills are absolutely incredible. You know, so many oncologists have such a narrow view and even little will, and would never get out of protocols and regulations to try something different. If BPC157 works in your wives case, that would be such a valuable knowledge, as so many with advanced BC suffers with ascites:/ Anyway, thanks to you BPC157 is already in my bookmarks.
The cough you described could be some kind of drug-induced allergic reaction or swelling, and maybe that is why steroid helps?
Saulius
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yes , that is the question to medical professionals - what is the diagnosis of the cough ? Pleural effusion ? COPD? Side effects of the medication ? As treatment would be different and it is up to them to put signs and result of tests and info together and come up with a ds !
I second what saulius says about your skills and view . Kncologists are in a different position to the patients though, they do not need to risk their career to try something which is not in protocols to save their lives so it helps to keep it in mind and manage our expectations
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r.e. refractory cough: While my issue is different (radiation induced pulmonary fibrosis caused by treatment) the scarring and pleural thickening cause architectural distortion of the lungs. This exposes pulmonary nerves to the air, hence the cough. PF is classified as a restrictive lung disease; pleural effusion and ascites also cause pulmonary restriction with similar results. It's hard to treat effectively but inhaled corticosteroids, gabapentin, codeine cough syrup, cellcept and thalidomide sometimes work. There are clinical trials for other drugs but they won't take cancer patients and the drugs are for the future.
Coughs can have many causes but this is one that many pulmonologists are not aware of. Pulmonologists who specialize in interstitial .lung disease have experience treating this if your doctor needs to consult someone. My cough was constant and so violent that it would cause me to pass out. Flovent inhaler and gabapentin have really helped. I hope this information may help improve QOL for someone.
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Thanks all. Maggie, would a pleural efflusion be seen on an mri or other scan? Edit: my wife's scan in January says no pleural efflusion. So now the only question in my mind is how pronounced it has to be, to be seen in the ct scan. I know they underplayed the ascites on scan, and now they are draining 3.8 to 4.9 liters from her.
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It shows up on a chest HRCT without contrast. It does show up on an mri but that would be done only if it was needed for another reason as well.
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Thanks Maggie. She had a chest ct back in January, and her cough was just as bad back then. The notes say no pleural efflusion.
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Hi again! My Pet and CT scans are showing an increase in size and number of liver lesions and even mentioned my liver having a nodular contour compatible with pseudocirrhosis. I’m in a bit of a panic because I’ve had bone mets for 6 years and liver mets for 1 and it feels like I can’t get my liver mets under control. Since being diagnosed stage IV I’ve been on ibrance/letrozole, faslodex, xeloda, piqray, everolimus/exemestane, abraxane, and now on enhertu. My onc had mentioned my next treatment would likely be eribulin, but now I see in the notes she will most likely put me on doxil since I expressed before I’d like a treatment that requires me to travel in to the dr office less since I have two young children. I guess the point of this message is to ask if people have been on doxil or eribulin and if one worked better or had more manageable side effects. I would certainly like to go into the office more often if my treatment had better efficacy and/or lower side effects. I would appreciate any knowledge anyone has to share and any other advice on how to help my liver. Thank you
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husband, must be frustrating re trying to understand - how they diagnosed her with no ascites if they drain now about 4 l fluids ! Their test must unsuitable for purpose !
Sorry fight4two , do not know the newer to that - how long have you been on enhertu for ?
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husband, If they are draining fluid from your wife the decreased volume could be distorting her lung tissue which would expose the pulmonary nerves to the air. I hope the inhaler gives her some relief.
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I inquired about the study SmallMoments is on (ClinicalTrials.gov Identifier: NCT0521) during my 2nd opinion appointment at UW in Madison last month so it's great to hear a participant's perspective. I'm on PIQRAY with scans pending.
However, my battle with blood sugar has been brutal. Taking Januvia 50mg & Jardiance 25mg daily, up from 10mg last week, plus metformin 500mg XR twice a day has finally brought fasting levels below 150. Now to control yeast infections.
Sorry fight4two, no personal experience with Doxil or Halaven yet. Have you tried a search on this website? Dear Husband, pulmonary fibrosis or any type of interstitial lung disease can be worrisome. Hopefully a sub-specialist is available.
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Anotherone— I’ve been on enhertu for 7 months
Vlnrph — thanks, I was able to find a thread on doxil although not a heavily used thread.
Looks like I will start doxil this week. Hoping it will do what I need it to do. I’ve been trying to research so I can self advocate for myself and now I’m stressing about the pseudocirrhosis mentioned in my scan report. It sounds like a really big deal but my MO barely mentioned it. Is anyone getting scans other than PET and CT to monitor their liver? I feel like I’ve read people having ultrasounds or MRIs but don’t know when to ask for them. And how do you qualify for local treatments like y90 and ablation? Now that I’ve gone through most of the standard of care treatments I feel pressure to be more informed so I can bring goo ideas to my MO.
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Hello, (cross posting from bone mets thread
This is my first post but I have read the boards many times before and just started going to the zoom meetings. I was originally diagnosed 9/2014 Stage 3C and did chemo/radiation and hormonal therapy. In 2019 I was finished with treatment and I had a clear bone scan in 2020 prior to covid. Last September I wound up going to the ER for left shoulder blade pain that hurt when I took a breath. They did heart tests and ruled out any heart issues but then did a CT and found mets throughout my spine, skull, pelvis, hilar lymph nodes, a single small spot on my liver, and what looked like scattered little nodules in my lungs. The lung nodules were never confirmed but a biopsy of my hilar lymph nodes confirmed breast cancer recurrence. I had to have a second biopsy because they did not get enough of a sample the first time. I am ER+, PR-, Her2 low. I started on faslodex and then IBrance in November. I had to decrease the Ibrance to 100 after 2 cycles because I got a uti and then covid and so I had to hold the 3rd week both of the first 2 cycles. I just finished my 4th cycle and had my PET scan on Thursday. My neck and back pain was so much better so I was convinced I would be getting a good result. However, my oncologist called me Friday and said the results were mixed. She was so disappointed because the skull mets, cervical spine and upper thoracic spine looked improved and she said my lungs looked beautiful and lymph nodes were improved as well. But I had a small new spot on my liver and one new met on my lower t spine. So it was a mixed response. Has anyone had any experience with this? We are going to biopsy the liver met and radiate the T11 new lesion. In the meantime I am continuing iBrance. I was really hoping to get a little time from a CDK 4/6 inhibitor so I'm pretty devastated. But there is a chance that I could continue if we take care of these two new mets. She is taking my case to the tumor board. Has anyone radiated their spine? Or liver? I am super nervous about it. We are doing the T11 this week. After the biopsy we will decide on the liver. Has anyone had experience with a liver biopsy? Was it painful? Any side effects? Thank you for any advice. Blessings to you all.
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Dear mommacj, I am sorry that you are in this situation but I waned to bring in some optimism for you. And so, let's just stop for the moment, breath calmly and think: spine and skull mets have improved, lungs and LNs too, pain was relieved, liver lesion did not grow (although there's another small one) - that all is a good response, and you have an amazing body that helps you to go through all of this. Now these few spots/parts that have not responded or appeared new: I'd SBRT the T11 thing asap, do biopsy on liver to check what mutants cause these lesions to appear, and, if possible, SBRT then these two lesions in liver too (rationale: when they are small, SBRT damage would be minimal), and continue on Ibrance which works well for you. Uh, I know how all of this sounds easy and in reality difficult is but if we could make just another push to get to NED, would you have power for that? Involve others to help you arrange everything - people and your loved ones will help you without thinking, I am sure. Pardon me for being this maximalist but we have to be like this, right? Hugs,
Saulius
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MommaCJ, after a big back surgery in 2018, my lower spine was zapped several times. A month later, an interventional radiologist treated a few vertebrae with ablation and bone cement. All OK since. My liver biopsy last fall was pretty easy.
Ultrasound located a large enough lesion in a good position for sampling. At a subsequent session, with light IV sedation & local anesthesia, I felt pressure plus a jab as the 'capsule' of the organ was pierced. No swimming for a week after.
fight4two, my 2nd MRI with Eovist contrast to look at the liver is coming up, to compare with imaging done in November. I still get PET/CT to watch my lungs and skeleton.
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MommaCJ - I've had 2 liver biopsies. I just wanted to chime in and say they were both very easy. Twilight sedation. I don't remember a thing. I like the idea of a biopsy to see if they can find a reason Ibrance didn't work there. Although rare, it is possible to have lesions that are different sub-types. I had a friend in that situation. Good luck and be sure to post an update.
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mommacj - I've had both SBRT to the spine (twice) and a liver biopsy. Both were relatively easy. For SBRT, the second time, I used a small amount of dexamethasone (prescribed) as a premed to prevent some pain that I experienced the first time (it hit about an hour after the procedure and resolved within about 12 hrs). The second time went much more smoothly. First SBRT was for T10, second SBRT was for T11/T12.
My personal opinion is agreement with Saulius and others. I prefer to stretch the systemic as long as possible if it's working for most things and is a tolerable treatment. It does sound like the additional testing is a good idea.
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