How are people with liver mets doing?
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Cure-ious. Interesting article. Maybe that is why it took 10 years for my grade 3 ca to wake up in my liver.
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Is it worth the scalp cold cap systems to preserve hair? I have lost my hair before..
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Sandi- Yep, most likely, and those liver stellate cells can also be involved in liver fibrosis- they deplete the NK cell population from the liver, so now you need some good ways to bring the NK cells back in to take control. I'm hopeful there are a myriad of strategies to come from this, given that researchers did not even know before now that NK cells are so important. Also was interested to note that the organs that MBC hones in on are those with highest CXCL12..
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Cureious I would love to borrow your brain!!!
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Ha!! Nicole, you are welcome to it!! It gives me so much grief, trying to help me figure out how to survive, hard to give it a rest sometimes
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a day I never dreamed I’d see. Keep fighting.
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MacBookpro- I am thinking of yo
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I love the photo, leftfootforward! Congratulations to both of you.
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What a photo, LFF! You are a real hero for your family. I don't even have right words to express my respect for what you have achieved. Saulius
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LFF- 🥲beautiful! Thanks for sharing
Curious- that’s awesome research. I will keep an eye on it.
Macbookair- hoping for hope for your mom
SandiBeach - I used cold caps during my doxil treatment just in case. It was hard work for my hubby but doable. I did not lose my hair. I would do it again.
Everyone- I am going to take a little break from the boards to refocus. I plan to enjoy the next few weeks without thinking about cancer so much (if that’s possible)
Dee
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LFF, if you can persevere through all this, so can I.
Thank you for being a role model to me. I love seeing your dreams come true.
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LFF- AMAZING. This is what I dream of daily. My son is graduating kindergarten today and doing a little concert ( we have to watch via video, thanks covid). We have a ways to go to HS graduation, but I gotta believe I'll get there.. I hope i Do.
I'm so so happy to see this.
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Dee , enjoy your well-deserved break.
LFF - Hurray!! Congratulations to you both. Great picture!
Cure-ious - I love reaping the results of your research - with the articles that you post and the suggestions you offer others. Thank you for being here.
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LFF- Love the pic. You are an inspiration.
Dee- Enjoy your time but come back to us.
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LFF AWESOME!!!! you look beautiful!!!!
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Cure-ious, that is so interesting, thank you!
LFF, what a beautiful and heartwarming photo. Here's to many more milestones!
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Thanks Curious. Fascinating research. You give people hope as we seem to be on the cusp of so many discoveries. Now if we can just hang on...
Love the photo LFF. Your son is soooo tall. Congratulations on a wonderful milestone. You are amazing.
Have a great break Dee.
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dee- have an amazing break! You’ve earned it ❤️ Thank you for your reply earlier! I wish these clinical trials come to ATL.. I have very little options.
LFF - amazing picture!! Congratulations!! My son turns five in September and one of my dreams is to be with him in his HS graduation.. that’s a loooong time I know but what can we do without hoping and deeaming?
everyone- your all in my prayers!
I did a liver biopsy yesterday hopefully something good comes out of it this time. I start Navelbine tomorrow.. I’m also worried about neuropathy and thinking about cold capping.. any insight?
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I honestly cannot imagine coldcapping through chemo - esp since in my case I was told I was on chemo for life. It's hard enough to do the icing for my feet and hands - but I do that because I do not want to lose function in my hands and neuropathy is one of the reasons that they kick you off a chemo. I do not want to come off any treatment while it's working if there's something I can do to prevent it.
I'm your neighbourhood baldie
I made a little funny music reel about putting on sunscreen when you're bald https://www.instagram.com/p/CQKOOtNAzYT/?utm_sourc...LFF - congrats to your son & your family!
Dee - enjoy your break!
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sandi beach, I found I could take the cold cap while I was on taxol [then Abraxane ,after severe allergic reaction, 6 months altogether now] but my hair fell out anyway so I gave up. It's much easier than now ,than 2007 when I had first had chemo and it was literally a cap filled with ice, but my hair fell out then too!! good luck with taxol.
leftfootforward, congratulations to you and your son enjoying a milestone and thankyou for giving us hope.
cure-ious , thanks for your posts, informative even if i don't understand all of them. news about research and possible new lines of medication help me keep sane.
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MOTH you are sooo PRETTY!!!!!!!!! OMGOSH!!!!
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thank you Nicole! I've been enjoying learning how to make & edit reels. It's been keeping the brain busy and it's a bit of a creative outlet for just goofing off.
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sandi , I cold capped through abraxane. Lost a lot of hair but enough was left so that I could go without a wig.
On e if the reasons for losing hair was that one of the caps did not fit that well around the top of head - if it is tight on the periphery but kind of bubbles out at the top of the crown that is wrong.
It is difficult to apply well
It is a faff
It is painful (painkillers an hour or so before help).
I just could not stand the idea of being bald.
i guess each to their own. I dread thinking I will have to cross this bridge again -possibly soon...
LFF , amazing !
Heartfelt congratulations
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Losing ability to concentrate. Used to be able to read these threads more thoroughly and even understand links posted. Getting harder to do. Maybe looking too hard for that silver bullet. Geting discouraged.
NicoleRod -it sounds like we might have some of the same characteristics. ER+, HER - ,PDL-1. I'm not sure about PR, but maybe also 10% AR. Has your DR said anything about Keytruda for PDL-1 ? Mine was not very encouraging, and it seems like Exemestane/Afinitor is the last tool she has. She has offered to refer me to any clinic for other options, but suggests a Univeristy based research. She made the comment that my metastatic cancer is unusual in that it seems to be spreading in tissues (skin) vs "lumps" . Most recent scan did not find it in liver, lungs, bones etc. But I am scared that it is only a matter of time.
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BGRS,
Be careful what you wish for with the keytruda. I was on that drug (alone) and had my complete blow up of my very slowly growing cancer. My MO told me that they have found some cases where keytruda actually accelerated cancer growth (me). I read nothing about this before going on keytruda, so please ask you MOs before taking that drug on.
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Bev...but you don't have PDL1 right? That drug does specifically target PDL1...so It might not react the same in people with PDL1...also...you just came off Ibrance which A LOT and I mean A LOT of people (so many on Facebook groups) have an explosion of mets after Ibrance...so it could also be from that ....
Blue girl...I saw my MO today...we do not scan until July and if this isn't working we are going back to Eribulin...I have not done abraxane yet either...and I also want to look into some trials..so no Afinitor is not the last option for me...have you done abraxane and have you done Eribulin?
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thank you everyone. Here is a family photo. When I was originally diagnosed my youngest was 3 months old, the middle 2 were 2.5 and 5, snd my son who just graduated was 8. Now the youngest is graduating from elementary school. I will have a 6th grader, 8th grader, Jr in HS snd first year college student. I am so blessed and thankful for every day I have with them.
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Thanks for sharing that happy photo, LFF!
Bev, whoa, what? I never heard that Keytruda could do that. Wow. It seems like there is still a lot to figure out about that drug.
BlueGirl, I would take her up on the offer to refer you to a university-based hospital. Maybe they will come up with a good new idea for you.
Dee, if you are reading this... stop. Go get immersed in something you really enjoy. A break for you right now sounds great. We will be glad to see you when you get back!
Nouzay, I am another one who decided not to go through the trouble and expense of cold capping (on Halaven), but to just use cold to protect my hands, feet, and mouth from neuropathy. That was uncomfortable enough. But for some people it is worth it to cold cap. Totally up to you.
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I have a ct scan on Monday, they thought they saw a lesion on my liver from a spine MRI
I have extreme pain in my right leg. What pain do you havewith Liver Mets
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I've only had upper right quadrant (under right ribs, right side waist) pain and right shoulder/clavicle pain (which is referred pain). I have not read of anyone who had leg pain from liver mets. Benign liver cysts are common and seem to be often picked up on imaging done for other reasons.
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