How are people with liver mets doing?
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hi sandi ,
I’m dealing with the same thing. I was having taps done so often that I ended up with an indwelling drain for now. My liver is pretty damaged from the Abraxane I did and the scarring that occurred from the Mets that died off. I also have portal hypertension so that’s not helping me dry up at all. It’s starting to get to me. Some days I’m smaller than others and I’ll drain once every other or every two days , but lately it’s been every day just for comfort. I’m really small so any amount of fluid is uncomfy for me.
I ended up in hospital after my first cycle of ibrance because my WBCs went so low that the fluid ended up with An infection and I got peritonitis again. We just lowered my dose and I’m hoping that will prevent further infections bc A) I don’t want to be in the hospital for Xmas and
if my body can’t handle the ibrance it’s not going to handle more chemo. feeljng defeated today but I’m glad your MO feels like it’ll dry up. I know it takes time though. I hope it does for you0 -
Sandi and BAP UGHHH I am so sorry you both are going through that!!! I hope it resolves soon.
PET tomorrow...I know I have progression..just praying its not TOO bad and not in any NEW organ...appreciate prayers...
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sending good vibes your way Nicole 🤞🏻🤞🏻 My MO decided on a Pet in 8 weeks if I can make it through three cycles of Ibrance . My last pet was September 😬😬
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Good luck, Nicole. One day at a time.
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Nicole, thinking good thoughts for you tomorrow. I hope you’re wrong about progression! 🌺
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My heart goes out to everyone going through tough times, especially difficult during the holidays. Cancer tries to rob us of so much especially peace of mind.
I found this photo that shows what’s going on with cancer patients physically. I sent it to my sister who is living with MLC. I wanted her to know she is seen!
BUT, there should be a similar diagram explaining what’s really behind “I’m Fine” for our mental and spiritual issues of dealing with metastatic disease. All of these are real, and affect each of us differently.
- Scanxiety
- Insurance frustrations
- Body image issues
- IV Treatment-day dread
- Anxiety
- Depression
- Fears of dying before ______ (fill in the blank)
- Progression devastation
- Overwhelming Side effects
- Hospitalizations
- Caregiver problems
- Financial toxicity
- Clinical trial access complications
- Lack of spiritual/mental health support
- worries, worries, worries
- And more
Acknowledging the real ugly truth of what we are going through is important. But in our everyday life, it’s sometimes hard to overcome a negative bias.
Be encouraged to recognize the big and little things that bring us joy. Recognizing our blessings is a learned behavior that takes purpose and practice. I’m working on changing my point of view and attitude. That’s one thing I can control in this uncontrollable disease.
I am thankful for this awesome group here,who continue to share, care and thrive despite the overwhelming circumstances.
Dee
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Nicole- Pocket duty for you.
Dee- That pic is so true. And so is your typed list of issues we deal with.
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Sandibeach57, my wife had really bad, non-malignant ascites when she first started treatment for her liver mets with xeloda. It seemed like it was brought on by changes to her liver as the xeloda killed off the diffuse cancer mets. At its worst, she had a line installed so we could drain it at home. Approx 5 liters per week were drained at the worst of it. She was prescribed two different diuretics, spironalactone and furosamide, and also an injectable blood thinner (heparin based). But we aren't sure if it started coming down before these drugs were prescribed, or not. Not certain. Eventually the line was removed and she hasn't been drained since, but off and on, the mri shows some ascites, and she does suffer from some bloating from it still.
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Thank you everyone for your kind responses regarding ascites.
NR...I will be with you when you scan.
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AlabamaDee,
Thanks for sharing both of those lists. Both are so true for most of us.
I was thinking about how my friend's mother once said at her daughter's birthday, "Don't feel down about getting old. Enjoy the present since this is the youngest you will be." Similar to that attitude, I've recently been thinking about enjoying every day that I can still breath, walk and live pain-free. Healthier people may take these things for granted. I hope I will be healthier in the future but that may not happen. Rather than focus on the things I can't do, I want to focus on the things I can still do.
I don't know if it's the Remeron I started taking or the new acupuncturist I've been seeing but I've been feeling overall much more positive and energetic lately.
Hugs, Susan
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BAP, I'm hoping that ibrance treats you better and that every day brings more strength and comfort.
Nicole, I'm hoping for the best in your PET results! I'll be thinking of you today and wrapping you in warm wishes!
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Dee and Susan, thanks so much for your input and suggestions. I need to take them more to heart, as I have been feeling really deflated and defeated lately. I feel like I don't have anything to look forward to anymore and I've been stuck in an "I can't" mentality rather than an "I'll try" mindset. And that is so not me. I keep thinking of an old truism: Can't Never Could.
I read something recently that did help remind me to give myself credit for even doing something ridiculously small, like doing a good job brushing my teeth. I need to look at my little accomplishments and go from there. I suspect I do a lot more than I think I do.
Thanks for inspiration and sound suggestions.
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Kattysmith, I know how you feel. I am not ready to give up, but cancer on a daily basis is tough. I try to accomplish 3 things per day. Getting out of bed and getting dressed are 2 things.
Shetland, continue to heal. Soon, you will be eating semi solid foods...
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Hello everyone,
I'm so happy to have this forum and all of you. I don't post often but I read everyday and grieve and celebrate with all of you. I also learn a lot from those who have been dealing with this for far longer than my mum.
Her latest MRI shows minimal progression in 2 liver lesions but her multiple smaller ones remain the same size as well as her vertebrae lesion. No new lesions! So, I guess Ibrance and letrozole are doing something? /:
She's still symptom free but it's only been 6months since we learned of her diagnosis. Waiting for her docs opinion.
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If you develop ascites, watch for signs of portal hypertension. The back up of blood flow into the digestive system runs the risk of bleeding varices in the esophagus. This can be monitored by having an endoscopy.
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I can attest to this. I had varicies that burst and was almost fatal. I’m on tons of meds to prevent new ones. My follow up endoscopy showed the bands had fallen off the bleeds and no other varicies were present. Hoping to keep it that way
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Multiple doctors tried to convince my wife that she was simply constipated, when in fact she had ascites. They even gave her the stuff you use to prep for a colonoscopy to clean your right out. Depressingly clueless they were. Tapping on her belly and saying it was gas. Yet, having a significantly involved liver, ascites should have been on their short list. An ultrasound at the ER quickly diagnosed it.
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Thanks for all the well wishes! Just waiting on results...
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Dear Ladies can I pick your brains please.
My recent CT scan shows largest liver met has increased from 2.8cm to 3cm so that’s just 2mm.Ive been taking Xeloda since June. I know it’s a progression but would it warrant a change in treatment?
Thank You and praying for good results to those who are waiting
Debs
Xx
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Mermaid007, while it would clearly have been preferable to see shrinking of the tumors, a 2mm increase in size might be within the margin of error for measurement. Is there anything else you have to go on? Do you monitor tumor markers?
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Mermaid007, many oncologists use RECIST criteria which were developed to standardize definisions of progression or response in clinical trials.
"Disease progression is clarified in several aspects: in addition to the previous definition of progression in target disease of 20% increase in sum, a 5 mm absolute increase is now required as well to guard against over calling PD when the total sum is very
small" https://ctep.cancer.gov/protocoldevelopment/docs/r...
you've got a ~ 7% increase in that met so under a trial, that would not count as progression yet. how are the other mets doing?
At the end though it comes down to the clinical judgement of the oncologist when it's outside of a trial. They might recommend an earlier switch or a wait & see approach...
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The recent discussion about living with all the physical and emotional fallout of mbc -- i have been thinking about these things a lot the past couple days because things have changed for me. I knew, more or less, how to live with uncertainty, fatigue, side effects etc. and I could still do some of the things that make me happy. Then I had a week in the hospital which I HATED, and now, oh my, I am fresh out of abdominal surgery to clear a blockage cancer caused in my colon. My world has shrunk to how do I move without pain and how do I eat enough of this low-fiber diet to keep going. I can't really do anything. Cancer and covid stole my dancing, but I was still doing yoga and walking, and I was really enjoying gardening. Now I physically can't. How do I reinvent my days?
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ShetlandPony,
I totally get where you're at. We thought we had become used to the challenges of living with MBC.
Being in the hospital is torture. Going home and having to lie in bed is so difficult too. My lung surgery is nothing compared to colon surgery but I remember, at one point, telling my MO, "I can't live like this". But I got a little bit better every day. I went to an in-person dance class this week after a long hiatus. I just stood in the back and did what I could. I do an online yoga class every morning and just do what I can. I can finally, slowly make it up the hill to the dog park. Since your surgery was successful, you should be able to recover and slowly start to add walking and some restorative yoga. I tried to focus on the miracle that my surgery worked.
Sending positive vibes your way!
Big hugs, Susan
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Husband, I am glad your wife’s bloating was diagnosed quickly and accurately. I am in a similar position. I have upper abdomen bloating and my MO ordered a PET scan, no ascites was mentioned in the report. Is US better than a PET to detect ascites? My MO says it could be due to the steroids I am taking everyday.
Nicole, when will you be getting your PET scan report? I got mine yesterday prior to my treatment and it doesn’t look good. All existing liver lesions and bone lesions show a higher SUV but the sizes have not increased. So my MO is dropping Gemzar and restarting Carbo along with Keytruda. ideally both these are given together along with immunotherapy. But I cannot tolerate all 3 together. So I was on Keytruda + Gemzar. My tumor markers have increased substantially since August mid-week. I am disappointed with these results.
If your MO suggest Keytruda+ Carbo+ Gemzar, I would try it. My experiences may be not universal. I have extensive bone Mets with, Multiple radiation to my spine. All these can cause a drop in blood counts when a strong chemo is given. You may be lucky and this combo may work very well for you. If you get severe side effects, then the concentration and frequency of these drugs can be changed. Good luck with your results from PET scan
Next in my line of chemo will be Halaven. Don’t know how well I will tolerate this. I’ll think about it when and if I get started on this.
Dee, Susan, Katty thanks for the positive notes. I can definitely use some encouragement.
Daughter, YAy to good news about your mom! Hope these good results continue. I was on Ibrance for 18 months.
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Husband,
Thank you for your response.
My tumour markers are not much help as they hardly vary with or without progression. My oncologist is taking the CT report to the weekly MDT meeting to discuss if I should remain on xeloda or not. I had to have a dose reduction so I was wondering if we tried an increase now my body’s more used to it, it might work better for me.
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Moth,
Thank you and that was an interesting read. My bone mets are stable and it seems just the largest met has increased. Fingers crossed I stay on xeloda a bit longer.
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SP- I can certainly sympathize with you. I’m 33 and up until recently , no matter what treatment I was on I could still maintain a sense of normalcy, and could basically do whatever made me happy. I could exercise , go for walks around the pond, work, be a super full time mom , and in a matter of 10 weeks things took such a sharp turn. From being told I couldn’t do chemo anymore because at the point it would kill me faster , to being told I was in liver failure (not anymore) , to the near fatal bleed , to infections, to ascites ect things changed so fast . After being hospitalized for 5 weeks , I couldn’t walk and lost a lot of weight.
I can’t currently work out because of my ascites and portal hypertension, i fatigue easily , I’m not working (though my unemployment is going to end soon and I’ll have to work in some capacity), I’m uncomfortable with the ascites, my husband does a lot for our son, and no one trusts me to go out by myself ect. I knew at some point mbc would do this but I wasn’t expecting it so soon and in this manner. So I can really understand that feeling you’re having. Hoping that my ibrance will work and the ascites will dry up eventually so I can get some quality of life back. I start my second cycle today at a lower dose and hoping for no infection again . I’ve said before that ibrance may be the last thing I can try even though o have so many options available for my type. I feel robbed. I’m on third line of treatment with many chemos I could try , but at this point they won’t let me.
I’m hoping for a smooth recovery for you and hope that you can get back to some of the things you love to do. It really makes all the difference.0 -
I am certain that an ultrasound is superior to anything else in identifying ascites. The ultrasound shows the various layers of tissue viewing from the outside inwards. You can see clearly with your eyes an increased separation of the two layers between which the fluid accumulates. The technician or doctor can move the probe around and find the various pockets of fluid accumulation between the membranes, and chose the deepest pocket to place the needle and begin the draining procedure.
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S3K5 sorry about you having to switch and the uptake but the fact that you have nothing new is GOOD!!!!
OK I GOT MY RESULTS...here is the message from my MO and then I need some opinions.....
Hi Nicole - I saw your PETCT results and talked to IR last night. In regards to the bones, the T7 that was treated looks a bit better, the other lesoins are the same and there are no new lesions. Regarding the liver, they look roughly the same as well. She said that the slightly lower dose given in the last Y90 treatment she did may not have killed 100% of it. Perhaps a new very subtle liver lesion appeared. Neither of us think more liver directed treatment is appropriate.
I think we have a couple of options:
1) Continue eribulin at a lower dose or longer spacing between visits as it is controlling the systemic disease.
2) Changing to paclitaxel +/- pembrolizumab
3) Changing to trodelvy. I am not positive I can give you pembro with that.
So here are my concerns..I am having PAIN in my liver (where that tumor was that they either think didn't die or is new) and have been having this for 2 weeks now...so my concern is that the Eriubulin really isn't working bc if it was (granted i am only on 50% of the dose) but if it was that wouldn't be growing (obvisouly its growing bc 3 weeks ago and prior it wasn't hurting).... so my husband thinks we should go up in dose of Eribulin and long break in between treatment..but i am thinking...maybe not bc why is it growing??? BTW she said T7 but must have meant my T3 or C7 bc that is where my cancer was....So what do you guys think you would do?
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Nicole- Just my opinion here but--- Bones--- T7/T3/C7 whichever is "a bit better" and "other lesions the same and no new lesions" . Liver--- "looks roughly the same as well" with "perhaps a new subtle liver lesion". I cannot advise on your treatments as to whether you should increase the dose of Eribulin as I do not know much about that med or how you are feeling on your dose now. But, if my results sounded like that I would say "stable" and continue on and rescan in 3 months and see what the scan looks like then.
I don't really know about the liver pain issue. I have had pain in my liver too, but yet the scans will not show much. With the growth I have had--- small, steady growth-- my MO says that would not cause pain. Hum. I don't know. Seems so many on here have pain in the liver. But my MO seems to poo poo my statements of liver pain.
I would take this message from your MO as good news over all.
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