How are people with liver mets doing?
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Thank you left hoping we both bounce back in the heart matter
i will know Monday . Hugs0 -
yayyyy! im so happy for you woody!
i have just done some GANGNAM dance for you. your words always touch my heart and I feel all alive and hopeful again...
Mattie, I gave him the most massive side eye but I was crying inside...woody is right we should give them time to assimilate the news. we both are newbies and I am very hopeful that someday, we will be supporting others just like these wonderful ladies have supported us.
hugs and love to all
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I had a really encouraging meeting with my new oncologist this morning. The only downside was that my pathology report was not back and so we could not make treatment choices. I hope to do that tomorrow over the phone.
I'm telling my 12 yro daughter tonight. She knows I have been to testing and she remembers the cancer from last time. I'll emphasize that my doc says the treatment will not be as harsh as the dose dense chemo and that it's going to be a lot like managing diabetes, something I'll be doing for the rest of my life
I spoke with her therapist this afternoon and he gave me some great talking points. I feel better knowing he is there for her as well.
Mary, like you I look forward to becoming an "oldie" on this forum! We can do it
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Mattie, glad your appt. went well and thinking of you as you talk to your daughter tonight. I have a 12 year old daughter as well. I would love if you have time to share those recommended talking points. I still struggle with knowing what to say to my kids. I haven't said more than that I will have to be treated for cancer for the rest of my life. Sometimes I worry about her harboring fears on her own because I don't say more but I also don't want to cause her extra worry. She is my oldest.
Yay, Woodylb! I know there many other things I wished to reply to on this thread but things around here are turning to busy, busy, well, busier than normal so know I'm reading and rejoicing and caring even if I don't post much in the coming days. And seriously, does any one else have the terrible chemo-brain problem of constantly thinking one word but then rereading and noticing you've typed a completely different word? This has been trying me crazy lately. First in speech but now in writing.
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MaryK,
Thank you so much for you lovely dance , i hope i will do the same one for you soon 🙏
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MattieFang,
I am happy you feel better after you spoke to your onc. I feel for you telling your daughter , my son was 15 when i had my first dx and he was near me when my doctor called, so i could not lie . He was utterly devastated and he totally disconnected himself emotionally. Now he is seeing a psychologist to help him and teach how to feel again and deal with realities and he is 20. I am glad you have a professional advising you on how to tell her. My thoughts are with you.
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Kaayborg,
Thank you so much for your encouragement and genuine response. Wishing you wonderful results soon.
About chemo brain, please do not worry , we all have it. Taxotere cause me speech problems , carboplatine also , the rest neuropathy and the forgetfulness is normal . Now perjeta is causing a lot of neuropathy , if you notice in my psots alot of mistakes my fingers are stiff and they do not always hit the right key lollll.
I am much older than you but my memory was my strength , well not now. But i practice a lot of memory games to keep it working and i am doing better but the chemo brain , well it is better but not totally gone.
I use a game called peak it has a lot of brain activities exercises , mental agility, focus, memory, emotions , language and it works.
I hope you lovely new ladies will be around for alongtime to support others
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Congrats on the wonderful news Woody!!!!
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My talk with my daughter went really well. I think it helped her to remember how many people had helped us the first time around. She did ask if I was going to die and I told her what my oncologist said; that this is a very treatable disease and that new things are being found all the time.
Her therapist said that she might have lots of questions and that she would benefit from having those answered honestly. He said to remind her that the cancer won't ever stop me from being her mom and that I'll still be doing mom things, like decision making and caring for her. I might feel like bringing in some outside help for stuff at times, but I'm still the parent. He also said she would likely key off of me and that it is ok for me to show her when I feel sad, scared or angry, but I also need to show her how to deal with those feelings by not wallowing in them and by moving ahead. I have my own therapist and it's very likely I'll be meeting with her soon to get more ideas
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Thank you Mama2twins, wishing all of us the same and better .
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Mattie, i am so glad you were able to tell your daughter about uour disease , it is really the hardest thing to do. I hope you and her nave a very very long time together.
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kaayborg! i am here with the same issue...chemo brain...This is very embarrassing because i have to edit or explain the other person that its a mistake. my sisters call me "dory" from the upcoming cartoon movie "finding dory" because she is so unforgettable that she forgets what she was talking about during her conversation with her bff.
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Mattie, good job having the courage to be honest with your DD.
I saw the nurse prac. Yesterday. She said my liver numbers were down, since my chemo 10 days ago. Good news !!!!! She did explain how Taxatere causes fatigue, like no other. I still have liver pain, do not want to take pain pills, but cannot handle life without them right now. My hair is falling out, head is sore.
Did any of you get Taxatere, and your hair only thinned?
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Way to go Hole! So glad to hear the liver numbers are heading in the right direction. Sorry though about the continued liver pain, scalp pain and hair loss. That is rotten.
Take the pain pills. I figure we have plenty of time to be brave later. For now, I'm going to fully embrace any and all pain relief that comes my way!
MaryK87, I hear you on the chemobrain. Another thing I'm not looking forward to revisiting. Last time I carried a little notepad with me and wrote down what needed to be done and what conversations I needed to have with whom. I checked things off as I did them and wrote down information from other people. It was a pain in the butt, though.
And as Dory says "Keep on swimming, keep on swimming, what do we do? We swim, swim, swim."
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Mattie, thanks for the reply. Do you know yet about treatment choices?
This might be a stupid ?, but here goes. If the chemo is working, will the liver shrink back down, closer to normal?
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Hole, that is my understanding. You shrink the mets, you shrink the liver and stuff stops pressing where it shouldn't. I could be wrong about that.
I just heard from my MO this afternoon. The ER & PR are still negative. I'll know about HER2 on Tuesday. My doc thinks that will likely be negative as well. Assuming that is the case, he recommends Abraxane + immunotherapy in a clinical trial. I'm going to be researching the immunotherapy piece this weekend. It's a randomized study, so there is a 50-50 shot on getting the immunotherapy. Unless I just don't like what I see on the Internet, I think I'll go for it.
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Matie - There is a woman named Coopdizzle (actually, her name is Jen) who has a YouTube channel where she talks about living with Stage IV mets. She features her kids in some of her videos, and always reminds them that if there comes a time when she is not around for them, it is not because she did not want to be. You might want to see some of her videos here:
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Hole- so happy the numbers are going in the right direction already!
Mattie-so glad the talk with your DD went to well-telling those we love is the hardest part of this whole mess were in!!!!
Wishing everyone a wonderful weekend,
Babs
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Holeinone,
Wonderful news after 10 days ! Yayyyy! I hope the numbers keep plummeting. I got taxotere on my first dx, my hair had already fallen from the first two and my head hurt when it started to fall. I did not wait for it to fall completly , i shaved it and it helped. Chemo does not shrink the liver it shrinks the mets , once the tumors shrink if your liver is enlarged , it will go back to its normal size. However, the pain may not be the same pain you felt before chemo, it could be from the treatment. Since your numbers are down it could be that the cancer is dying and when it dies it hurts. It is a sign that the treatment may be working and the dying cells hurt. Wishing you more and more decrease in numbers .
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Scrunch, thanks. I'll defiantly check those videos out.
Woody, if only the stupid cancer cells felt the pain instead of us! But that is good to know
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lollll Matty i agree with youbut they don't they are stupid as you said !
) Abraxane is a good option , there is a lot of talk about imunotherapy , two of them will be FDA approved by the end of 2016 beginning 2017. Like you said check them out and go with your guts. Good luck to you and we will be here to cheer good for a good response.0 -
Mattie, that sounds like a very good plan, to do abraxane and a trial that will possibly give you immunotherapy. A trial is the only way to get it at this time, right?
Holeinone, I would expect your pain to subside as the Taxotere does its job. I recommend a good-quality silk pillowcase for the poor tender head.
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hi ladies!
hope we all keep on swimming. but I can hardly swim at the moment. had my third carbo taxol dose yesterday and today down with breathlessness and extreme weakness. I was anemic already and had the heaviest periods of my life a week earlier (my periods have not stopped on chemo). my liver numbers are perfect despite the vague pain in the liver area. anyone of you felt this sick on carbo taxol?
hugs
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Hang in there, Mary. I'm praying for you. Hoping that cause of the pain is the cancer dying in droves. Just rest and call your doc. They live for calls on Saturdays
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Mary,
Sorry you are struggling right now. I get really sick after chemo, but have not experienced carbo. Time to try to get comfy and float. Sleep, fluids & time.
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mattie! i called my onco and she replied like Frankenstein "side effects of CHEMO" and BANG! phone was off
huh! well i ate what came into my sight and feeling better now lol.
Holeinone! thanks and have you tried pomegranate juice on your "sick days"? just a suggestion. it helps tremendously with weakness and nausea. so happy for your liver numbers going down and pray they go back at normal level soon.
big hugs to all ladies
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hi all. Well 3 more treatments left. I feel worse after each one. Liver enzymes are up and down, waiting on markers. They were at 1600 then down to 196 hoping for lower this time. This stuff makes me feel so yucky. I can't wait to be done! anyone do any juicing? Maybe that will build up my defenses and I'll feel better. I just want my hair back. Next scan in April. Might end up doing liver embolization. Hopefully that will help. What good things can we do to help keep liver healthy and fighting?
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Hi lvinAZ44
im glad your TMs are going down with each treatment, we are in the same boat with same diagnosis and 3 treatments left. like you i feel worse after each treatment but the side effects worth it if we reach NED status in the end. I have just shared my defense against horrible side effects of chemo. I drink pomegranate juice everyday after chemo and it makes me feel better plus i have read that pomegranate have anti cancer properties so I asked my onco and she Okayed it. drink plenty of water. my liver enzymes have been in normal range during 3 treatments. i hope it works for you as well.
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MaryK , sorry for the way carbo makes you feel. I had carbo and it also tired me more than any other chemo. Breathlessness also cause by very low blood counts. I had a blood transfusion tobe able to continue and low doses.
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I'm filing away the pomegranate juice tip!
Mary, she's just playing hard to get. Take it to the next level by paging her through the hospital switchboard. Docs aren't allowed to ignore those. It shows you are thinking of her and want her to share in the journey. 😜 And remember, she works for you! Side effects of chemo? Then manage those with something from the bag of tricks, doc! She spent a lot of time in school, residency, etc. You are just giving her a way to show what she knows!
Seriously though, I learned that I had to be my own advocate during my last rodeo. My original MO and I butted heads a little bit at the beginning. Once we had a "Come to Jesus" discussion things got better. No one tells cancer girls what to do! They present us with choices, answer all our questions and offer us fantastic pain meds/anti-nausea meds/compliments on our chemo caps. Or else we climb the chain of command looking for help!
Livin, I'm sorry you feel icky today. But yay for only three more left! That is so awesome. Have you tried CoQ10 for hair? I'm going to ask my doc about it when I start. It also promotes heart health. One of my cancer buddies swore by it helping to regrow her hair. You grow, girl
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