How are people with liver mets doing?
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Thanks Bab - I am also worried about the new 1cm spot that appeared and wondering why from CT alone the onc could not tell if thats cancer or not.
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Did any of you get liver pain upon starting Xeloda? I'm hoping it is a sign of cancer dying and not a sign that my liver is not handling the new drug well.
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Shetland - no my wife never got any lever pain
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Shetland- when I mentioned early my liver got puffy at first I did have pain with it. It really takes about 2 weeks to kinda process I think. I also felt a lot of nausea at first but took metachlopramide anti nausea tablets and it was under control. Our livers process everything so try not to worry too much (easy to say)...
HUg
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Oh, it was you, Bens Mama. I remembered your comment but couldn't find it. Ok, so the puffiness and pain came when you started the drug, not before, correct? And it didn't mean there was a problem. I did put a call in to my onc. I'm mostly afraid she will say to pause the drug or to make the journey to the cancer center for a blood test, so I didn't want to ask her. But then I thought, better to be safe and run it by her. Thanks for your reply. Anybody else with a similar experience?
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My wife got ascites and hepatic hypertension after starting on xeloda. They thought she was dying. One can only guess as to the reason the drug brought it on, but there was rapid kill off of cancer cells. She had a lot of cancer throughout her liver. Some in discrete tumors, some scattered like buckshot. It may have been an immune reaction to the dying cells. It posed a significant risk to her health. At first they thought it was gas, but it was fluid accumulation in her belly. The xrays they did, were useless and lead them to believe she was constipated. The tapping on her belly, led them astray as well. That fluid is a symptom of hepatic hypertension caused by blockage. Another symptom, and life threatening, is the hypertension causes blood vessels in the area and espophagus to stretch and swell. There is risk of internal bleeding. They put her on blood thinners and a diuretic. Eventually she got a drainage port installed, but by then, the fluid accumulation had slowed. Now it has stopped.
Xeloda has worked exceptionally well on her liver mets, but she went through a real tough spell after starting treatment. The treatment posed more risk than the disease, in the short term.
They can watch liver function through enzyme levels, but those didn't rise alarmingly. Her bilirubin numbers did however reflect problems with the liver draining, in her case. It might be different for others. She also experienced steady weight gain as fluid accumulated.
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Shetland, I had liver pain on Xeloda. It started as flair but continued the entire time over a year (when the drug was working). I imagined my liver looking as raw and torn up as my hands and feet on Xeloda. When I started Xeloda, my entire left lobe was described as almost entirely consisting of mets and the right lobe had tons of huge lesions covering at least half of it. By my 3 month scan, everything was 100% inactive and the lesions had shrunk a significant amount. At the 3-month mark, my liver enzymes and tumor markers were still in the elevated "flair" stage that started after I began Xeloda. I hope you are experiencing the same thing.
Letmywifelive, I think a PET is a great idea. If that PET shows that your wife's lesions are inactive (or have less uptake than previously), then it doesn't matter that they look bigger. I have had instances where the PET showed my cancer as inactive where, if I had seen a CT, I would have been freaked out over the size of the lesions. Lesions tend to die before they shrink. And sometimes the dead lesions are never cleared from the tissue. Good luck!
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my gigantic liver tumors press on my right kidney, who hoo. The lympth nodes and all haven't shrunk a bit at all yet.. ı almost am willing to ask for ixempra myself!
Trying out milder chemo with no response... is it worth it?
Never say never! Ha ha
here's me volunteering for what I never thought would go for willingly. Still, I am gratefel liver is the one battling most.. managable ..
hugs
Ebr
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My nurse practitioner, who works with my onc, returned my call. She says my liver pain is probably a flare reaction. Yay! That is good pain. Thanks for relating your experience, JFL. Husband, I'm so glad your wife got past that initial problem and went on to have good results.
Ebru, one thing I'm learning about cancer treatment is that things keep changing. I hope your kidney feels better very soon.
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Emily-Louise wrote:
After 10 months on taxol/carbo/valiparib my liver mets doubled in size since my last scan resulting in a liver bleed.
I begin navelbine xeloda oral combo tomorrow and would love to hear of your experiences.
Worried that I will be nauseas all the time being every day
Thanks in advance
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Let the doctor know that you are prone to nausea. They can get you anti nausea meds b4 you start.
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check out the Xeloda thread. Lots of useful information there.
I will say that most people are nauseous fir the first few cycles of Xeloda so ask for Meds to help with that. Also take Xeloda with food to help.
Sorry you need to change treatment. The new treatment you are on has worked well for many. Best wishe
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Hello Shetland Pony,
Reading all of your posts I am eager to hear how you are travelling?
I start my oral chemo tomorrow, learned all of the details of hand and foot issues today and now understand your concerns! We have a stable of horses, which is much like your dancing, my passion!
Any tips to manage would be much appreciated!
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Hey Shetland, I had lots of liver pain when I started Xeloda about 10 weeks ago. I continued to have what I feared was liver progression symptoms, pain and bloating, lots of upset stomach etc. I just had my very first scans after 3 cycles and I am happy to report that all liver mets are shrinking!! I have mild hfs and the nausea, other than that, I think it is just getting used to new drugs that takes awhile. Love and hugs to all of you!
Alissa
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Mama,
Your post brightened my day! What dose are you on? does your nausea require meds or is it manageable?
Are you on any other chemo?
Thanks in advance, I start tomorrow and feeling nervous.....
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dear Emily, I was nauseous at first but nipped it in the bud quickly with metachlopramide. I took it before taking tablets and nausea went away. also, there's a cream called lac hydrin which you can apply regularly which really helps!
Don't worry....you'll be with your beautiful horses. I went to Mexico and New York while on xeloda.
Ladies, I am sitting in waiting room to be up next for a ct. I've mentioned earlier that I have had very weird symptoms lately so I ask for some extra prayers today 💕 I just focus on my little boy and hubby and my heart overflows but the fear in my gut is awful. Scanxiety...yuck
Maria
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Maria - I know the feeling. Every time my wife is done with her CT and the wait begins (with out without symptoms), a deep sense of fear sinks in waiting for the results. I am praying that you get at least a stable scan.
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I'll be in your pocket for your scan. I know how stressful they can be.
Im also a Mum of Ben - mine is a strapping 6ft 3in HS Senior who gradated on Saturday. I wish you great results.
Sarah
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Also in your pocket Maria.
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thank you all so much! I should get my results very soon.
Sarah- Ben's are special boys, aren't they
. Congrats on his graduation!!! I have visualized my Ben's first day of kindergarten there's no way it won't happen it's totally imprinted on my subconscious . I dreamt of him since 2004 when we got married then got diagnosed 1st time while trying for a child and then miraculously he came along in 2015!!Have a nice evening everybody! Say my prayers for this group of thrivers every night!!
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Bens Mama,
Thanks for your advise, first dose down, along with Navelbine, can't seem to find anyone on the same combo....
Scanziety is the worst, even through all of my good results that feeling of fear was always there. Prayers for you today, look forward to hearing some good news from you soon ❤️
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Hi, Emily-Louise. Glad to see you joined the Xeloda thread. I addressed most of your Xeloda-related questions there. Don't give up on your horses! I know horse-lovers have a very special passion. My onc said we can adjust the X dose and timing to minimize the hfs, so hopefully yours will tell you the same. Work smart and minimize heat, pressure, and friction on your hands and feet.
Alissa, thank you for letting me know your good results with X, and that in spite of some liver pain.
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Hi all,
Hoping to hear good news from those with upcoming scan results!
My TMs continue to be on the rise after finishing my first cycle of weekly Taxol. Liver enzymes are just about within digits of normal range - big improvement in that respect. MO may move up scanning if TMs continue to misbehave. Started second Taxol cycle today.
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Linda. Hoping the Taxol kicks in and beats the sh- t out of your mets!
I'm getting scanned on Thursday due to jumping TMs. Think gemzar is finished for me!
Babs
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Dear All,
I am new to this thread. I post for my sister who really wants your help and advice but is terrified of reading anything bad, because she's phobic about needles and medical procedures (not a good thing to be in this situation). So she gets me to read her tips and comments that I've pre-screened… I am here today because at my sister's onc appointment yesterday, she was told the scan showed three new mets in her liver since the end of Feb (the first liver met was id'ed in Feb). So she's off Afinitor/Aromasin and today started weekly chemo (Taxol).
Linda, I saw your post above and hope you remember me from the Palbociclib thread. We're in Canada and I had posted about trying to get my sister Palbo after it turned out she had been in the placebo arm of the trial, and then posted regarding what would come after Palbo when she progressed. (They put her on Aromasin/Afinitor but didn't work). I really hope Taxol works for you, and for my sister too! Is there any chance the doctor explained to you how he or she chose Taxol vs. other options?
Because we weren't expecting to have to go back to chemo, at the doctor's appointment I was completely unprepared to ask questions about treatment options. However, tonight I saw papers saying Abraxane (nab-paclitaxel) is less toxic, more effective and takes less time to administer than Taxol. I don't know if those were articles ghost written by drug companies or if it is true. Also, we had been expecting the doctor might suggest Xeloda but she didn't. Does anyone have any insight into the choice of Taxol vs Abraxane vs Xeloda?
Is it related to cost, or how long a drug has been around?
Thank you for any help or insight!
Gill
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Linda, these times when things are not clear are hard. Good on the liver enzymes; now we need to see your TMs dropping next blood test.
Babs, any chance of getting a biopsy and tumor genetics to help direct treatment?
Hello, IrishTwin. I remember you from a while ago. Taxol and Abraxane are the same drug, paclitaxel, in two different carriers. Effectiveness is very close. It seems that Taxol is usually tried before Abraxane because Taxol is less expensive. The patient is given Benadryl and dexamethasone to prevent an allergic reaction to Taxol's carrier. If the patient reacts anyway, then they will switch to Abraxane. My impression is that Taxol is often used when a fast response is needed; for example, because the liver is in a risky state. Most people have 4-6 cycles of it, although some stay on it longer. Xeloda seems to be more of a maintenance chemo, with people using it for even five years. That's just my sense of it. Do ask the once for her reasons on the choice for your sister.
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Hey Emily! I just checked in and saw your post. I am on 3 pills in the morning and 4 at night. We chose to drop a pill when the hfs symptoms and nausea showed up. I am on no other chemo, other than the X. I have had trouble with nausea my whole adult life it seems. I have a set of twins and required a picc line when pregnant and seems I get it easily now. It is manageable, but always in the background. I have a bunch of littles that keep me super busy, so I think that helps for distraction!
I hope everyone else is doing well. Prayers being sent for scans this week for everyone!
Alissa
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Irishtwin - of course I remember you! ShetlandPony gave quite a good explanation on different chemos, thank you SP, very educative for me this morning. MO and I discussed Xeloda but the tumor load in the liver is so severe that she wanted bigger guns for me. MO also felt I no longer respond to hormone therapy. After progression on Femara, I was switched to Faslodex in Feb and that didn't last long. I went from a perfectly healthy liver in Jan 2017 to a liver riddled with mets in May 2017. At this point, we don't know how long I will be on Taxol or what tx would be next. I was scared sh*tless of chemo and always said I would not touch the stuff, but really it's very doable for me. Another thing comes back to mind. MO would request a test for compatibility to Xeloda which would be done in a big Montreal hospital prior to giving me that tx. Plan was/is to scan 3 months after starting Taxol but scenario may be moved up as further testing of TMs continue. I'm really sorry about your sister - it sucks big time. Lots of gals had good success with Taxol for liver mets and I'm hanging on to that for now. I don't know to what extent, if any, the choice of chemo across Canada is cost related but knowing our Quebec system, it is certainly taken into account. Choice of chemo may also be dictated by liver functions and enzymes and other labs that I would not be able to expain. Have you any idea how her liver enzymes are doing? Geez, I'm writing a novel here! Feel free to ask questions on this thread or the Weekly Taxol Stage IV thread. You can also pm me if you want.
Babs - You will be on my mind Thursday! Wishing you the same with whatever next tx it will be!
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Thank you Shetland and Linda! I really appreciate your taking the time and for your detailed answers! My sister went from having liver tumour at the end of February to four tumours at the end of May so the doctor seemed to feel the same way, Linda, that your onc felt, i.e. that big guns were needed right away. Cost was probably a factor because we're getting the drug through the government so they often have rules that you can't have expensive ones unless you need them. (Even when you offer to pay the difference, they say they're not allowed.) The Onc said we'd try Taxol for 3 cycles and then scan to see if it's working, and that she's hoping that will stabilize things. We asked about Xeloda and she dismissed it saying she could switch to Xeloda later, but didn't say why. I didn't realize it is more of a maintenance med. Linda, I am glad it hasn't been too bad so far. My sister was like you, thinking she'd never go bad to chemo. Her onc said to here about Taxol "Don't worry, it'll be a walk in the park" and my sister responded "A walk in the park? Maybe a dark park... full of muggers." We're both hoping, though, it's more like a daytime stroll, or even a sweaty jog!
Gill
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Gill - oh no, not a walk in the park! Seems that both your sister's MO and mine are on the same wave length. If you don't mind Gill, I'd like to stay informed of how your sister is doing either through this thread or via pm. I'm always interested to know what options are used with our CDN metsters.
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