How are people with liver mets doing?
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sorry Matti. That suck
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Babs- such great news!
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Mattie, that really does STINK! It is hard enough to deal with all of this without the added burden of trying to keep going in a professional manner at our jobs so we can make money and get benefits that we need to start the circle all over again. One of my biggest frustrations right now is trying to feel like I am doing things to really live my life, yet between the appointments and work I am feeling like I am stuck in a big cog in the machine. I hope they get your stuff in time and everything will likely work out just like you said. But kinks in the plans can be sooooo frustrating! Hang in there!
kaayborg, I like that quote too. Sounds like something my husband would say and is definitely easier said than done. But I'll try and say it with you at least once a day!
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MattieFang,
I am horrified at such a tall tale that the biopsy has to go overseas.. That means your insurance company is beyond cheap sending it probably to India to save money. Biopsy's are not that high a cost. The stress on you is incomprehensible. so sorry. Carolyn from Music City
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Mattie, I am a super type A planner and stuff like that drives me absolutely bonkers!!!!!! It should not be, it should not be! Your last line is so true. May it work out soon and you find an eagle.
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Thank you all for the cheers
Mattie Fang-I know it's both frustrating and upsetting to have the delay but try not to stress over something that is totally out of your control. Take a deep breathe111
Babs
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I really feel for you Mattie. Juggling work and cancer is not easy. Especially when you go out of your way to accommodate them and then they make stuff ups without any regard to what is going in your life! So I specifically ask for my scans to be on Thursday cos I teach on Wednesdays and what do I get? An appointment for Wednesday. Grrr,deep breath...
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Hi, Everyone. I have been wanting to get back here for days. Not ignoring you, just trying to keep up, with fatigue and insomnia slowing me down. Anyway, I'm happy to hear good news from leftfoot and Babs! Livn, when is your scan? Mattie and Isy, ugh, as if you didn't have enough to deal with. The hospital scheduling people should do everything they can to help us live our normal lives. Do you have opportunities to submit suggestions to your hospital? I turned in written compliments on how my schedulers work with me; they are doing a good job. I hope yours improve.
Longtermsurvivor, thank you for the info on CA-125. If mine comes back normal, I think I will worry a little less about undetected abdominal mets. If it comes back high, my onc will order a CT with contrast. Woody, thank you for telling me that you have had symptoms but a good scan. I suppose it's possible my body is just getting tired of these drugs, or is working on clearing up cancer debris. I suppose it could also happen that I am right about trouble brewing, but my body will beat it back. Or maybe, the next scan will confirm my suspicion and I'll have my first progression and treatment change. Nothing to do but wait, I guess. Kaayborg, that's really interesting that your onc says some people can detect mets before the tests can. That would so be me. But why would there be no advantage to early detection? We hear this all the time but I just don't get it. Wouldn't more cancer mean more damage and more chance of spread to additional sites? Might early detection mean there is time to try an easier treatment first?
On the subject of the "battle" I guess I was trying to say that we don't have to have a smile or courage all the time. I don't want anyone to pressure or criticize themselves for being sad or fearful at times. Personally, sometimes I feel like a small scared Hobbit clutching my dagger and heading into the dark cave. Sometimes I feel like a sturdy little pony enduring the snow. But warrior, not so much. Sometimes I have the blessed experience that kaayborg mentioned, of forgetting cancer for a while.
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Hello all,
Mattie, sheesh, I have never heard of biopsies going overseas. My tumor marker test went to San Juan Capistrano, CA. I was surprised.
Babs .......😀
Kaayborg, love the quote. My potty mouth has only gotten worse with age & Cancer.
I had Taxatere # 2, two days ago. My liver #s were all down, MO said its working. I will take that good news & try to stay positive.
Shetland, I have never like the "warrior" analogy. Like we signed up for a competition or a triathlon.
Mary, check in when you can. Thinking of you.
Thanks to all of you here. Barely a month into this new dx, I am still accepting this. You all have made this easier with your advice, knowledge & concern.
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Holeinone, very good report from your onc! I hope that helps you feel that the taxotere is worth it. What kind of chemo schedule are you on? And yeah, we didn't sign up and we don't have a worthy opponent. If it is an opponent it's actually a *&%#@*# one. I never swore via punctuation or any other way before cancer!
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Shetland, a sturdy little pony enduring snow...this I like and think I perhaps am on my best days. The fight, battle thing doesn't much resonate with me either. It implies that I can somehow be responsible for the result. Sure, I can do some things to help myself and try to keep a sunny attitude but ultimately what the cancer does to my body is out of my control. But, I am a sturdy little pony!
As for that question about the progression and why not change at the first sign, I have added it to my list of questions cuz I am just dying to know the reason void of my speculation.
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well Dr said scan is interesting. ??? He says he didn't think it's as bad as the radiologist said. There are spots on liver Dr thinks it may be becuz cells r dying liver is shrinking and it looks different. I still meet with him next week. Ugh. No change other than that. Was hoping for shrinkage. This sux.
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Holeinone- good news from your oncologist-take every positive and run with it!
Babs
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hey Lvin, Your news doesn't sound that dire either. Any kind of upgrade in condition is good news. Hang in there and wait for clarification.....Holeinone and kaayborg, I agree about not liking defining this as a "fight" as if we can ultimately direct the complete destiny......Shetland, I seem to have acquired a fondness for the F word. Sometimes there is just no substitute.
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Question
My TMs are going down. For me they've always been spot on. The end of February my scans showed that my liver mets decreased significantly. My blood tests this week showed a significant increase in my liver enzymes. MO thought it could be from my taking Tylenol or alcohol. Neither of which I've done. I'm going for a repeat blood test next week. I'm concerned. Had this happened to anyone else? What could cause this?
Babs
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Babs- I think breakdown of cancer can bring liver enzymes up. So too can a lot of the mess they put us on. I am hopeful since your numbers are down and sca is good that it is just your liver adjusting to its new state. Lots of dead cels to filter out.
I hope for the best with your repeat blood test.,
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Babs,
Xeloda causes liver enzymes to increase , mine did when i was on it. Also like Leftfoot said dead cells may cause it. PET scan will show a clearerpicture and activity. I would not worry if your TMs are reliable and your liver mets showed decrease. Anything could raise thsoe enzymes, i was taking meds for cholesterol and it increased them. I believe it is most likely xeloda , and it will readjust. Redo your test but not right away wait few weeks.
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Leftfoot and Woody
Thanks so much. If I hadn't had the scans the end of Feb, I would have been freaking out. I am concerned but I too was thinking it might be either the Xeloda or the liver mets breaking down.
Bab
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Feeling a bit down today. Cardiologist called last night and told me my heart function was still only about 40%. This time he seemed to indicate that giving me more Heceptin would not be good. I see oncologist Tuesday. I know my heart can bounce back but its what I do I do in the meantime that bothers me. Last time they put me on xeloda and tykerb. They took me off tykerb when I got my solitary liver tumor last July after being on the combo for 2.5 years. There are other things out there besides herceptin, but those are often more cadio toxic. And when I was off all targeted therapy, I had metastatic cancer within 6 months. I know I am getting a head of myself, but its hard not too. Just worried.
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lefty, sorry you are having a tough day. Are your cardiac issues related to chemo, Cancer or something you have always had to deal with?
I am taken it easy, bone pain from Neulasta. Since my first go around with chemo, I have a hard time concentrating on a book. Short articles, newspaper, I can stick with. A novel or non fiction seems overwhelming. Chemo brain is back....
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holeinone- my heart issues are a direct result of my herceptin treatment.
Hope your bone pain gets better. I remember it from my old treatment days. I have heard that Claritincan help.
I found a new love for comic books when I couldn't concentrate well.
Hang in there
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Left, i am sorry about the news of your heart. Me it is perjeta which seems to be the problem. But i am interested to know ahve they given you any medication to support the heart ejection? If not this would be very odd. I was given ACE medication they are used for patients with potential heart failure. They are helping in keeping my ejection normal. Since i have COPD my lungs did not do well on one of them they changed the med three times. I am also a smoker. Also i had a stress test but i did not have to walk they used a thalium test to check on my heart's health. My heart reserve are excellent the ejection is due to HP . So they boosted it with meds so they don't use the reserve. You may want to check with your cardiologist about all this. I hope your heart bounce back soon and you get to have your meds. Hugs
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wiodylb- I am already on an ace inhibitor and beta blocker. So that adds to my frustration. I am on a very low dose but my blood pressure Was already low. Cardiologist is afraid to increase my heart Meds as it might just make me pass out.,
I am hopeful we can try at lest one more round of herceptin and/or try upping my heartvmeds just to see. It will make for an interesting conversation Tuesday.
Thanks for the suppor
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Left,
They increased my beta blocker with another half and my ACE a higher dose and it worked. I have also low blood pressure , but the strange thing is that my blood pressure is higher than my usual. Go figure.
I hope they will find a way to treat your heart and keep on the same cancer treatment since it is working so well. It would be a shame to have to change it. I hope he gives you an answer. I truly understand your frustration and will pray for you to resolve soon.
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Babs, My liver enzymes skyrocketed while on Femara/Ibrance. My Onc took me off even though I showed marked improvement which upset me. I have never heard that elevated enzymes could be caused by liver mets breaking down but plan to ask about it. I am very much hoping to try that combo again someday although it was not as easy as Faslodex. My Tms' went up slightly last month on Faslodex even though my scans looked stsble so who knows??? Woody, how high did your enzymes get before your Onc became concerned? Left, I'm sorry about the heart issues, I hope they find the right balance to get you back on track.
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Artist , my onc did not get concerned about my ensymes , he knew it was from Xeloda as i was asymptomatic. He changed meds because I had mixed response which he considered a failure , since in some place i was stable in others i continued to progress.
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Woody, My Onc seemed more concerned over the high enzymes than how the meds were working. She said the elevated enzymes could cause live failure which was pretty scary. I saw a liver specialist who was also freaking out. I am still not clear on which med was causing the elevated numbers but hope to try Ibrance at a lower dose when the Faslodex is no longer helping. Or maybe some new wonder drug will have emerged by then?
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Artist, i am sure pretty soon there will be new treatments , they keep popping up and i hope the do. I don't know how high were your enzymes for your docs to stop the treatment . Mine were high but not alarming.
I hope faslodex will keep working for you for a long while.
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when people are saying high liver enzymes- how high- 2-3 times higher than normal ? or more
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Hi ladies. It's been awhile since I checked In and I haven't had the chance to read through the posts to see how everyone is doing. I have had bone mets for 3 years and liver mets since September. I started with afinitor/Aromasin. At first it seemed like it was working. First PET scan in December was clear. But them my TMs climbed a lot so we did a liver MRI and sure enough the beast was back. So after 5 months on Afinitor/Aromasin, we switch to Ibrance/faslodex. I'm almost done with my second round. One tumor markers went down and two went up. Onco is talking about 12 weeks of taxol. I asked if we could please give ibrance/faslodex a bit longer. I hope I'm not making a mistake. I have blood work on Wednesday to see if TMs are still rising and a liver MRI on the 19th and then a PET after my 3rd round. In my opinion if things have stayed the same and have not progressed, then I want to give the ibrance more time. Any advice
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