How are people with liver mets doing?
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ive read mixed things about flax for er/PR+ so I'm not sure about it. I'm going to get assume cannabis oil and try that. I will wait until I have a few new treatments under my belt first though I've been trying to be more positive, a lady I work with swears it has an effect on your body. I like me Dr too here never given me a time frame. I'm trying not to get stuck on that. I really like seeing layers here who are 3 plus years out. Gives me hope. Thanks for the replies u guys Rock!!
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Livin, I am planning on both of us to be here in 2 years....Telling of our txs & adventures.
Artist, I am with you, love to watch it snow, Xmas lights are my favorite part of the holiday. I live in Idaho. Beautiful state, but I can no longer handle the cold. I went to S. Calif. For a few weeks in Jan. I was in heaven. Feet in the sand, walking on the beach. That is my favorite place to be.
For the next 5 days, house guests, spending time with family. Keeping my fingers crossed I can give it my all. I will take the time for the afternoon power nap. So much I want to do, my energy level has been Taxatered out.
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Livin-My MO told me to stop eating Flax because of being ER+ & PR+. So, ask your MO on that one!
Babs
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Ladies, im hoping i can bug you with another question (not sure if stupid, naive, etc) but I'm finally going to start navelbine/perjeta/herceptin on Tuesday next week and thinking about ordering tonight the famous cold caps to see if i can keep this newly grown hair after my original treatment in 2014/2015...nurse wasn't very helpful said it was more of a hassle needing to bring someone to help, the expense, but didn't say there was risk or contraindications. ...
Heck, I've rarely splurged myself before, if no added risk I would like to give them a try...
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This is just anecdotal, but my wife has had a lot of success with the Penguin cold caps. She's been on Taxol since September and has kept the bulk of her hair. It's certainly thinned, but she has decided that the expense and inconvenience is worth it. We also used them during her initial diagnosis through her AC/T treatment and it was similarly successful. I've never heard anyone suggest there is any contraindication and the cancer center we currently visit has a freezer to enable their use and will likely start rolling out the DigniCap (a more convenient contraption) before long.
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Thank you Batfax! Sounds like Peguin is a good brand. There's one slightly cheaper but I'm not sure if I'll have time to research about them with my last minute order :-)
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gramen, my ? Is, will your scalp still hurt like it does when it's falling out. I just lost my hair, 2nd time, both times I could not wait to shave it because of the pain. I have always had a sensitive head. Maybe I am just a wuss.
Also, when you read about mets to the skull, could that be an issue with these. I know it's just hair, but being bald this time is worse. It screams, "Cancer is back & I am in tx. I have never worn a wig, only hats & beanies. I bought one, could not wear it. Maybe I should take my wig to my hair dresser & see if she can fix it so I would be comfortable wearing it.
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I have no idea about any of this but you piqued my interest. Have you seen this article? http://www.breastcancer.org/tips/hair_skin_nails/c... I thought it had a lot of interesting information.
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Hey liver ladies! When I was first diagnosed my liver looked like Swiss cheese. I get a ctscan on Monday and I'm worried. I discovered the liver mets after I went to the hospital with liver pain. It was awful. Now that I've done 4 rounds of chemo the pain is gone. I hope hope hope that the scans will show good things cause so far they've all been pretty horrifying
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Jill, hello.
Has your liver #s been dropping when you get your blood work?
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Holeinone....hope you're having fun w/guests (mine come Sun) and aren't forgetting power naps (with your phone/iPad under the blankie so no one knows you're blogging!) :-)
Jill...I'm just saying the chances are ver good that those tumors are being blasted!!!! We'll expect to hear that soon :-)
Babs....I always had guilt for not using flax in smoothies, etc (sometimes need more bulk), but no more!!!! Thanks for the er+pr+ perspective!!!
Batfax...glad you posted...much of our info is anecdotal, which I think of is tried/true in many of our experiences. So glad your love didn't have to go through the bald stage...I detested it! Gramen..another anecdote is most don't lose their hair on navelbine (this is when I say every body is different). I was on 22 months, w/her/perj and it took a long time til it thinned to a point I could even tell...although my hair is naturally pretty thick. I even had it colored in month 3...which made my onc crazy upset, but it did fine (I didn't/haven't colored since then). I'm definitely not saying not to use the cold cap and maybe you can't start using it mid tx, but you'd have time to research, I think. I had tx every week for 7 months...then 2wks on, 1 off. My onc approves of taking biotin, hair, skin, nail support & said anything over 2000 gets flushed, but I take one 2500 instead of 2x1000...too many pills).
Wondering if anyone else takes Mega Red (krill oil) for heart? I've been on it since 1st dx (09) w/herceptin...onc wanted me to take it & don't know if it's helped my echo readings, but maybe???? It sounds like I'm a pill popper...sometimes I feel like I am...LOL!!!
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just read through a zillion pages on this thread. Great info here but so much to process. I started with the he mets in my lung, a couple of years ago it showed up in the liver, and then most recently the right pelvic bone. Just started abraxane a couple of weeks ago though noticed that I was also on it from December 2014 thru July 2015. Not sure if that was on purpose or not so have a call in to my oncologist to find out. I do. Have liver pain and loss of appetite. I think I read on here somewhere that loss of appetite happens because the liver pushes against the stomach, leaving less room for food. I also find that food just doesn't taste good right now. Just started megace which is supposed to increase appetite. Sure hope it does. I feel like I'm starting to disappear and know I need to eat! Lots of folks here I recognize from other threads. Best wishes to everyone. Many different paths we are on and hope that we can destroy some cancer cells!
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Hey, Jillian. I see now we're liver pals. Your mets discovery is the same as mine, swiss cheese and all (perhaps with some added softballs). My pain went away with chemo, too, and first scans after starting treatment showed great improvement. Best wishes Monday.
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Jillian. Wishing you great scans on Monday!
Babs
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holeinone yes! My enzymes were above 220 and pretty much immediately dropped to normal levels. I still have some pain the the area. My doc said that it might be due to movement, which would be a good thing. Like the tumors just fall off and die?! Or...it's all in my head. My breast tumor still burns from time to time to remind me that it's the little you know what that started it all.
Thanks for all the well wishes from my liver sisters
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Thanks for the link kaayborg! Welcome Jillian, I do hope the chemo fills in the swiss cheese. Best wishes on Monday!!
ronnie, When I had to quit the flax I started using chia seeds in my smoothies for fiber and energy.
Gator, I hope the same for the abraxane and it kicks the tumors butts!
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Ronnie, you cracked me up yesterday. I literally had crawled into bed for my power nap, IPAD in tow. You had posted that just minutes before. Yes, enjoying the visit. They are staying at a hotel, working out perfect. I balked when my sister told me, but it was the right idea.
Jillian, good luck on Monday. I get a scan in about 3 weeks.
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Wishing you all a relaxing weekend. Thank you for your messages over the past few days.
Infusion port is in, same spot from the one removed 5 months ago.
Ordered cold caps, but thinking i might return them and take my chances with navelbine.
This wait for treatment has been so hard, and I realize I'm worrying about anything I can instead of focusing on the big picture, getting through chemo and finding one that works.
Going to try my best to make it to treatment on Tuesday without driving my family nuts and without a sore throat from so much crying.
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LOLOLOL....Holeinone! I'm cleaning for SIL & BIL coming tomorrow....notice how I'm cleaning (blogging!!!). Dang, my DH used to help so much but since he had hip revision (Dec) & I've been feeling good, he's useless...HA!!! Glad you didn't have to wash sheets for visitors...I did :-(
Artist...great idea on chia seeds! This is my smoothy now: pomegranate juice, spinach, kale, parsley, yogurt, banana, carrot, almond butter (sometimes), blueberries, maybe some apple & cucumber, cinnamon & coco hydro powder. DH & I drink it & grandaughter when she's here M & Tues. I have to remember to eat lunch...it fills me up.
Gramen...we'll be holding your hand on Tues...it will be good to finally go to battle on those crappy cells!!
Gator...odd onc didn't mention trying the same drug again...but we'll all hope it does the job twice as well the 2nd time around!!!
Prayers for clean scans & smooth treatments!!!!
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Ronnie Kay, I did talk to my onc on Friday. He didn't realize I had been on abraxane before when he recommended that I do it this time. Odd, but glad he admitted it. We've been together since 1987 so I won't fire him, there's not a lot I haven't tried. I did the red devil twice also. He said when I stopped abraxane last year it was due to peripheral neuropathy, not that it wasn't working. Also I was going to Norway and asked for a chemo break. He still thinks it is a good course to be on now, at least until the neuropathy gets bad. I'm good with anything that kills cancer cells though I do find abraxane rough compared to some of the other chemos I've tried, so, glad to know I'm not the only one who hides my iPad when I take my naps! LOL
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hello ladies, I started new treatment Friday, is supposed to be less harsh them abraxane. Yea right. I've been down for 3 days. Yesterday gene like I had severe flu. Will I ever feel better I'm going back home to Ohio in June to see family and my horse. I dint feel like I have the strength to ride him. Ugh. I'm going to ask Dr to find something else to use, this stuff is too harsh. I think it's called Ebrilium.
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sorry livin. I hope you turn corner soon.
I think your horse will be happy to see you. And I bet seeing him will be very therapeutic for you. Even if you can't ride him the way you want I bet just being together will bring you joy. Horse therapy is great.
Hang in there. And good for you for talking with your doctor.
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Livn,
I am sorry you are feeling lousy on Eribulin , it is a harsh chemo but supposed to work well on cancer. If it is tiring you so much , you must tell your onc definitely.
Like Left said even if you cannot ride your horse , being there and just taking a walk with would be very beneficial to you. I hope you sson feel better.
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Livin, so sorry treatment is making you feel so lousy and I do hope by June you'll feel like riding but even if not, like others have said, your horse will be waiting to connect with you. What part of Ohio? Central here. My mom is big into horses and volunteers at Marmon Valley here. Heard of it?
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he is in West Salem with my sister. I sooo miss the barn smell.
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the tech actually let me look at my ct scan afterwards and it did look less Swiss cheese like. Mets in my back might have been bigger. I imagine the doc will wait until my next apt (in a week) to give me the official results. So lame. Stupid cancer.
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Jillian-yes, stupid cancer!
Living-Def call your MO and tell him how you reacted to the Eribulin-maybe he can give you something to counteract the SE's. Hopefully by June you'll feel better and if not, I know your horse will be happy hearing your voice and that will make you feel better. When I had horses, their ears would perk up when their owner would come for a visit. ( I boarded horses on my property)
Babs
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Livin, I hope you are feeling better soon. I think the barn smell combined with seeing your horse will do you a world of good! Ronniekay, that sounds like a powerhouse of a smoothie! I do the frozen 3 berrie mix from costco, kale, chia seeds, almond milk, a little wheat germ for fiber and potassium. I love them for on the go food and breakfast. Very filling. Is Coco hydro powder because it has protein? That's a great idea as I'm a choco-holic!
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Jillian, sounds like the visual of the swissy liver appeared healthier. I think some one should call you & let you know, either way. Takes 2-3 minutes. Are they cutting out your Breast tumor ? or just leaving it alone ?
Gramen, we will be both getting chemo tomorrow, happy you are finally getting to start. I have not bothered to get a port again. I will if it is necessary, but I have fantastic veins. I hope the side effects are gentle.
Lvn, I am not familiar with your new chemo, or most chemos, except the ones I have had. I plan on a solid week of miserable, staying home, being waited on (lol), soup & ice cream. I think the A/C ( red devil ) made me chemo wuss. It was legal torture. Taxatere ( Taxaterrible ) is much easier.
Had blood work today. Liver #s down again :-). Tomorrow I will get the first full dose. Yah ! Wishing it would shrink, a little. Survived the weekend of family, dinners, photo taking. My sister crying after a little wine. Arrgg.
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holeinone, loved your cartoon. I'm on abraxane and it is throwing me for a loop. Have had two treatments and am just tired all the time. No energy or motivation to do anything. I hope I get good results when I have a scan. We deserve at least that when we go through so much .... No more tomorrow and then I get a week off! Woo Hoo
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