How are people with liver mets doing?
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Hi Woodylb - thank you - I am her2- so that explains it - the Xeloda seemed to be keeping bone, spine mets stable but not working for the liver - so they increased the dose and I will have a scan in a month - I am dreading infused chemo again and I think that is probably the next step, so hoping the Xeloda kicks in for the liver - I have an appointment with a new oncologist on Thursday so things may change then without the scan - I saw a oncology primary care doc last month and she felt I was not with the right oncologist and she suggested I see this new one who specializes in bc - I liked her much better - we will see.
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good luck apackoftwo.
thanks Woodylb for the great explanation
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I got the results of the FISH test - negative. I haven't spoken to my onc about it yet (he sent the results in an email) so I guess it's Navelbine only for now.
Apackofwo, I went from Xeloda to infused chemo (Navelbine) recently. The worst part is going for the infusions. I'm finding the Navelbine easier to tolerate than the Xeloda (and absolutely NO COMPARISON to the tough chemo I had when I was first dx at Stage III). The once-a-week trip to the hospital gets old fast. I told my son I felt like cancer went from being my hobby to being my job. He said, "At least you have a job". Yeah, my kids have the same weird sense of humor that I have.
Leah
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Packoftwo,
You are welcome, i do hope the increased dose of xeloda effects the liver mets. You are rigth infused Chemo is really tough, but somehow whether infused or not it is all chemical and it being put into our bodies, to me does not make much of a difference as long as it works. Some of these chemos we do have less side effects others more. I hope you do no have to go through a lot of them. Somewhere the right combintion is waiting for you.
My prayers are with you to keep you strong and going.
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Leftfoot , it is good to hear from you and see you are doing well. Missed you on the board
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Leah,
I am sorry the HER2 results were negative in the matter of treatment options not the agressive disease itself. I want to ask you how high was your IHC? if it was 2+ which is equivoque then a CISH test would be worth it. If you have a hospital which can perform this test , i advise you to try and do it. Meanwhile i hope the Nevalbine would be doing a good job on your mets. My FISH test came back negative from Roche itself and from another hospital, yet when i aksed for a genomic testing they did the CISH along with it which came back completely positive for HER2. It is worth a try. Glad to know nevalbine Is being eaiser on you than other chemos. Keep us posted .
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Woodylb - are you losing your hair again? Part of my hesitation is I have a 2 1/2 hour drive on windy roads, each way, to chemo tx - once a month is hard enough - I just don't know if I have the energy to do it once a week - sometimes I think navigating treatment is more difficult than the treatment itself. What is a FISH test - I thought you had to have another biopsy to determine if cancer had changed to her2 - I have a new oncologist and hopefully this one will talk to me. Have an appointment with her on Thursday. It seems as if you ladies have so much more information about all this than I do. This site has been helpful - thankfully, due to the kindness and info here I am slowly feeling more positive. I hear you about cancer being a full time job - so far I have not missed a beat but wonder how long I can maintain the pace.
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woodylb- thank you. I had brain surgery at the end of February. It has taken a bit for me to recover. Hard to lose your mind and cognition. I am glad to have it back. Finally of the meds that were slowing me down and finding my stride.
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Apackoftwo,
Yes my hair fell on my first diagnosis but it grew back nicely. Then i lost most of it on my reoccurrence with liver mets , last year and the i started this combo i lost some of it but it looks fine and i didn't cover it. But in preparation i had bought a russian fur hat it is very warm and very fashionable. I know it feel bad to do the same thing over and over again it is depressing. But this is what is takes to beat up the beast. Two hours is a long way , can't you find somwhere closer? At least just a place where you can get you sessions.
FISH test is done only after the biopsy in done and they determine the kind of cancer you have, and if it is ER+ /PR+ it also shows af you have an eccess of a protein called HCI if this shows as 1- then you are HER2- and if it shows 2+ then they will check with a more sensitive test called FISH to assert or deny but if your HIC is 3+ then you are HER2+. In either cases it will give them more insight on how to treat you.
It is good you are changing oncologist , it is very important to be with someome you like and well read on the latest treatments and more importantly with someone with whom you can communicate , trust and be able to ask her anything you want. Ask her to explain to you all the things you do not understand. Do not be afraid of treatments no matter what they are and be a part of everything and if you do not feel right refuse it , it is your right.
Yes cancer at stage IV is a full time job but you will learn very quicly to live with and embrace it beccause you want to live. With time things will settle and you go into a routine and live and function like everybody else. I am not bilittling what we endure, i am simply saying the sooner you deal with it the better you will feel and the stronger to beat it God's willing.
We are all here to help you go through but of course we do not replace a good oncologist. Still anytime you want to vent, express anything need, we are all here to help and support.
My prayers will be with you so you find a doctor who gives you hope treat you well . Have faith it helps.
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Leftfoot, i am glad the surgery went well and that you are ok even if tired. If it getsyou good again thenit is worth it. I wish you a speedy recovery , so you can go back to normal again. Please keep me posted on how things go , in the hope we hear good news. Meanwhile, rest , get some of your strength back so you can fight this disease with all of us here to support you just to do that.
The lord be with you, protect you and get you a safe place. Hugs.
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Prayers welcome.
Don't know if I posted my latest treatment therapy since my last bad scan. Gemzar & Herceptin, 2 weeks on, 1 week off. 1st week I get both, 2nd week just Gemzar, 3rd week, nothing. I've had one complete cycle (I'm off this coming week - Wed the 15th). So my next schedule is both on the 22nd, Gemzar only on the 29th, off on 5/5/15. We have a family vacation planned for Florida 5/3/15 - 5/8/15. I just got an email that my liver enzymes have gone up since starting the Gemzar and wants to re-do labs ASAP. I pointed out that they've actually been progressively, but slowly, going up ever since starting Sir-spheres back in December, but this time, it was a big jump, in just a week's time, so I'm not sure what they have planned for me now. The oncologist had mentioned a couple of weeks ago that we could take the 29th off, if I feel I need/want better days to plan for the upcoming trip. Now I'm wondering if they'll just try lowering the dose. Think I read somewhere that sometimes that's tried until LFT's start coming down, then going back up to a regular dose.
Any input, anyone?
:-) Penny
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Penny,
The body always reacts to new elements or treatments, most of the treatments i went through caused my TMs to go up and then go down. Strange enough most chemos treatments affect the liver enzymes, if you read on their labels it says if you have a liver disease warnings. In all cases they cannot tell if the treatment is working before the third cycle is over . So i hope it is just a false alarm from the meds and nothing else.
I hope you go on your trip and enjoy it
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love that phrase
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Hi there,
Just got a word from my oncologist, he has a new protocol for me. It's Tykerb and Navelbine (every 2 weeks). I know a lot of you have a lot of experience with those drugs. Any input would be very much appreciated. Scared and anxious...
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Extremely apropriate wish Penny , last night lung cancer took my aunt , she was only 62 years old. So yeah i wish cancer got cancer
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Wow, Woody. So sorry to hear that. 62 is way too young. Actually, ANY age is way too young for cancer. Prayers for you and yours.
- Penny
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Thank you Penny, she is finally at peace with no pain, no sorrow , in a way i am glad the Lord took her fast because she was so scared of pain , and i did not want her to suffer, she was so,lively andnthese past months , she did nothing but stay in bed with pills to sleep.
God bless you and your family.
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Woody, very sorry for your loss.
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So sorry to hear of your loss Woody. I have lost many family members to this terrible disease. I too have lung mets but doctors say bc to lungs has much more to treat it with. Hugs to you.Ella - good luck with your new ammo against cancer. I have no experience with either but sure hope it works great for you.
Cathy
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Woody, I am so sorry to hear about your loss. May G-d send you comfort.
Leah
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Thanks Cathy
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Oh how I have missed so much....just myself got out of the hospital from a temp of 103.2 for 4 days...and met with OC today...and basically told he has heard of me wanted to stop the Halaven...well yes because of all the side effects...but told me...if I stopped chemo...it would take 6-8 mths and the cancer will have won...so I'm cont...the chemo...65% more chance to stay stable for a couple yrs.... and we are discussing how to help my "MIND" which is more of a SE to me since I live alone...and am doing this journey on my own...to stay in tune and in touch with the clinic...I freak myself out sometimes...but it just would be nice to have someone here with me to put my head on and be pampered....I have a great caretaker...but she leaves...and most of my thoughts happen in the evenings...Well just will have to get more strong will and tougher....and handle my thoughts better...and get distracted more...
I can't address everyone...to many of you beautiful woman to remember to address...but I am loving you and supporting the cause with my viral hugs...Love and Respect Carla
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Tryin2staycalm,
Thank you for your kind words , this dosease is taking so many sweet lives. But we always find comfort in God and people and friends who surround us.
I hope you are dealing better with your cancer, and hope your treatment does a good job . Hugs.
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Syrmom, thank you your words mean a kot to me. How are you doing on halaven?0
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Syrmom, thank you your words mean a lot to me. How are you doing on halaven?0
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Thank you Leah for your support it means a lot to me. God bless you and Yours.
How are you feeling on Nevalbine? I hope it is easy on you. Keep us informed.
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Ellamilana,
I hope Tykerb and nevalbine work for you. Good luck and best wishes.0 -
Oh free bird53 - I understand - I am also doing this alone - well, I have my little dog, Oliver, without whom I would not have made it this far - but I know how hard it is sometimes - especially keeping mind and spirits up. Although cyber company, you are not alone. Susie
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Dear Carla,I too am alone, lost my husband suddenly in 2008. I have a son who lives in another part of the home (we bought together as co-owners) but like you alone with my thoughts much of the time. I do have good friends and family but do miss my husband so much. I know the feeling, but we reach out to one another and support and be there to answer questions and search for peace and hope. I hope we all can give that to each other. Wish I could help more. Sending hugs to all. May God bless everyone of us and give us the strength we need.
Cathy
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