How are people with liver mets doing?
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Woodylb, so very sorry to hear about your progression, hang in there & I hope the Xeloda brings stable boy back to see you! It can be a great med for the liver, I understand. I also understand how discouraging progression is; as you know I've had my share & went through it again recently. Cancer sucks, but at least there are more treatment options available to us.
The liver is a powerful organ. It's strange to me how many times the mets pop up and reoccur after various treatments, yet, one of our members, Denny123, had a liver full of mets years ago & after having gemzar, hasn't had a reoccurrence in the liver since!! I find that amazing & want that for myself. So it's possible & her story gives me hope!!
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Hi Woodylb--
Sorry to hear about your progression. I just hate this disease! I'm getting ready to start round 16 of xeloda tomorrow. I'm on the 14/7 schedule, taking 2000mg per day (that's 2 pills in the am and 2 in the pm). It brought my tumor marker down from 106 to the mid 50's, and my liver numbers returned to normal. My MO typically doesn't scan unless symptoms or blood work indicate something fishy going on. While on xeloda, I did develop a small mass in the pleura of my left lung (where the original mets showed up). I was having some pain in the rib area, so did a CT. Did 14 rads, and the pain is gone. My tumor markers have been slowly creeping up about 10 points a month, but labs haven't been off, so hopefully the rads will take care of that creeping increase. I'll find out at my next appt. on 3 weeks.
I've been lucky with xeloda, knock on wood!! My main problem has been some hand and foot syndrome, but I moisturize and that helps with the peeling and dryness. Neutrogena foot cream is great, and I also use Vanicream. My dermatologist likes coconut oil, but you definitely need to wear socks since it's so greasy. I've had some occasional abdominal pain (like gas pain, not nausea), and Gas-X usually takes care of that. I loaded up on side effect remedies before I took the first dose, and haven't needed most of them. But it helps to know that I have them, just in case. Be sure to take xeloda with food, or within 30 minutes of eating, and drink a big glass of water when you take it. I hope I can continue on it since it's been pretty easy for me. I hope it works well for you, and treats you gently!
ILC is such a weird little beasty. My MO has described mine as "indolent but persistent". So far, each treatment has taken care of the most recent progression, but has allowed another one to pop up somewhere else. It really is like playing a game of whack-a-mole! Let us know how you're doing. Saying prayers and sending (((hugs))) to you.
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Sorry Smiley...in my prayers with all.
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Woodylb - Amen. Thank The Lord for all His Mercy!
:-) Penny
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Syrmom, thank you for your kind words and support, i know what you've through over and over. May god bless you and for all of us i hope they keep finding meds which works
)). As for Denny , it was mainly herceptin which helped her keep the liver mets at bay. When i got the reoccurrence result my MO Lwished a HER2+ status because he would have a lot of options lollll i thought he went carzy !! meanwhile i hope you are doing ok .
Big hugs
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Hollander, thank you so much for your support and for the info you have given about Xeloda , it gave some hope . I hope it works for me and i will keep working for you. The other was a weekly taxol which i declined for the time being. As you say ILC is very strange and mine also was suppose to be indolent, intermediate yet somehow very persistent and it pops out suddenly without any warning symptoms or else. It is very confusing ughhhh!!!
Does Xeloda makes you gain weight? Lollll sorry to ask about this but for the past three years my weight has been like a yoyo i gain the loose according to each med i am taking. Again thank you so much for your help and the hope you gave me. My prayers will be with you as well . Hugs.
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Thank you Penny God is mercy always otherwise where will be ?
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@WoodyB - I said the same exact thing when my mets were found in my liver and they were biopsied.......I was actually hoping it was Her2 positive!! These Her2 targeted therapies have proven to be a miracle drug for a lot of women. I know Her2 tends to be more aggressive, but when the meds work, they really work well!
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Lolllllll Wildrumara, you may still change IDC can change but extremely rare for ILC. And yes HER2+targeted therapies are working well in most cases. Still i hope you won't need it and your treatments get you to NED.:))
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Hi Woodylb-
You are so right about ILC being weird. It does seem to just pop up unexpectedly, with or without obvious symptoms. Since I was diagnosed with stage iv in Feb. 2013, I've learned to expect almost anything with each scan. I'm not being negative, just preparing myself for the fact that almost anything can happen. At any time. Unfortunately. As fas as weight gain, I've gained about 10 lbs. since 2/13, and it's been more a case of the "creeping pudge". Some of it may be meds related, some may be ice cream related
. I know it's not alcohol related, since I rarely have a drink. I miss it some, but like to think that I'm helping my liver out.Time to relax after a weekend of family birthday celebrations!! I hope you and all the other ladies here have a week of easy treatments and SE's. (((HUGS)))
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Hollander,
You are a funny lady god bless your heart. You are not being negative at all ILC is a very nasty cancer, it is hard to detect, and when detected it is usually at a late stage, low mitotic rate "indolent" which makes chemo less effective towards it and there aren't much antihormonal to try. I will start Xeloda alone my main MO didn't aporove of nevalbine with it . I will start it next week, but he informed me that this will be the last treatement, if it dies not work they will start palliative treatment. I am not an ice cream eater lolllll so i hope it is not the meds
Pray it works for and for all the ladies using it. Have a peaceful week HUGS
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- Wow, Woodylb, it seems like there should still be some other options for you. Does your MO just not think that other chemos, etc. work with ILC? My MO keeps telling me that there are still a lot of options for me. Of course, I keep asking about that whole cure thing, and she says they are working on it, and there's a lot of good stuff in the pipeline. Well, it needs to hurry the heck up and get itself out into circulation so it will do some good for all of us in the stage iv club!! Good luck with xeloda, and hang in there!! Keep asking about other treatments, too.
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Woody, I would not stand for the Xeloda being the last option, that sounds crazy to me. Think you need other opinions on this one!
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Woody, I think the same thing as SyrMom. It is not possible the last option to be Xeloda. Please, find another onc for a second opinion.
Christina
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Hello Hollander, Christina and Syrmom,
I am already dealing with 2 different oncologist one who treated me since my first Dx and one from my country. The Xeloda will be my third line of chemo since my first Dx. With carbo+gemzar we could not even finish the whole treatment because of cytotoxicity so i got the last two doses extremely reduced because the risks outweighted the benefit , aromasin didn't do anything at all even though i 85% estrogen positive. If i take xeloda or halaven, or nevalbine or any other, ( they are against two agents together for me, because after the carbo gemzar it will be too toxic for me) so if i fail any of these they do not believe i will respond to others. I had asked my MO on my second Dx and i made him promise that if at anytime they believe treatments are or will be no longer responsive to stop treatments so i can go home and stay near my only son and be surrounded by my family . If a treatment gives one month , or one week and it destroys your body will you still do it? I am seeing him next week , since now i am still on summer vacation and settled my son in college back home and i am seeing here also two different oncologist of which one wants to make me a lab rat hehehehe. I wil, understand exactly what he meant when i see him next week and keep you posted . I want to thank all three of you so much for all the support and care you are giving me . My love and prayers with you all. (((HUGS)). I will of course keep you posted .
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Hollander, Woodylb, and those with ILC -
For what it's worth, a friend of mine, whom I met on one of the HER2 boards, has been Stage 4 ILC for about 11 years now. It hasn't been easy, but worth it, since she has a husband and child. Maybe I'll ask her to chime in here. She has cancer all throughout her body, in the strangest places. She's been on so many trials, too.
- Penny
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wolf, thank you, thank you, thank you !Christina
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Woodylb, my Onc only uses one chemo at a time for Stage IV. It was interesting to read the article that was out on these boards outlining that as a protocol for Stage IV. If the chemo shows a response, then it's used until it no longer works and then move on. Since there's no cure for Stage IV, it doesn't make sense to put the pt through a whole lot of side effects, for what? The key is to "stabilize" or control. As far as an Onc "thinking" a tx won't work, it's a crap shoot; they don't know anymore than we do until you try. I have a friend who was given 6 mo with Stage IV lung ca. Gemzar made her sicker than a dog and she refused to continue to be sick & told her Onc to find something else. He came up with Tarceva, which is in pill form; if this happened today, she would not meet the qualifications for taking Tarceva. Back then, it wasn't so limited and she's been on it 8 years & STABLE!!! Has seen her kids graduate from High School & college!! You never know until you try, who would have thought! She had everything in order to die. She works out at the gym regularly and looks like a picture of health. She's able to manage the few side effects she has from the chemo & is scanned every 3 months. Today, she wouldn't even qualify to take the drug! The way I figure it, you just have to try & see. I'm usually scanned every 3 mo. too, so we have an idea if it's working on any level or not. Don't forget about trials; many are very effective. Heard about one lady that was a deaths door and a trial put her into NED & that was 20 years ago! So, again, you never know until you try! I would say don't let any Onc give you an expiration date!!
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Penny God bless your heart , we would appreciate it if you let her post here. Hollander and Christy i am checking out an immuno-therapy which is being done in germany , they draw from your blood and a urine sample and it is carried to germany the same day. For two month they check all the genes of the cancer and check each weak immune cell in the system than make you a serum from your blood and send it to you in shots , it is advised during chemo and after. Two people with cancer were cured but since we are at a late stage it will help the body fight the cancer. I am checking with my oncologist if he allows me to do it with chemo to help my body stay strong, if he okays it i will do it. The cost is 20,000 euro. I will keep you posted.
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Woody, that sounds very very interesting. Please, keep us posted.
For the moment I'm waiting the results of the genetic test - which chemo is supposed to work for me the best. I know it isn't 100 % sure that the described chemo in the report would work for me but I decided to give it a chance. Hugs to you all!
Christina
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Syrmom, thank you so much for what you wrote, i exchanged email with my MO today since i am still out of the country and i will be meeting him next week. He explained what he meant. He is a very nice guy and very Godly. I had told him when i found out about my dx and liver mets that at anytime he feels treatments are not working he should tell so i can go home and die peacefully and that i do not want to become a lab rat. He told that from the intense progression on Aromasin they can assume that i am hormone retractive, therefore an anti hormonal is no longer an option. Until now they don't have a proof that i am chemo retractive and i am still healthy and have no symptoms they expect that i will have to get a good response on xeloda. If not he told there are trial medication but since i told him i don't want that he told my husband , they will treat symptoms. He said there are no rules against doing a 4th , fifth and six but from experience they know that after the 3rd there is no response there usually is no response on others. With carbo gemzar i only got a 30% response, i hope it keeps responding enough to keep it stable. Love and hugs to you all.
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Christina, i am also having a genomic testing done even though it is still investigational it may help at a later stage. I hope it arrives on time because it will take around two months. How long have you been waiting?
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Not much - the pathologist sent the blocks last week. But the test is made in Belgium and the lab normally return the report in 10 days. So I expect the results till the end of this week. I don't know why it's taking so long for your test....
Christina
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Penny is the friend you met in HER2 board HER2 board Her2+? If she is it would explain a lot some with ILC very rarely becomes her2+ positive and this changes the whole equation.
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Christina mine is sent to Germany through the american hospital of beirut, lebanon.
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Woodylb - I believe she's always been HER2+, but I can double-check.
:-) Penny
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Today is my 4yh Taxol. But yesterday I receive the result of the blood work. All is good except TM 15-3. Now it is 360. Month ago was 180. I'm little more calm now than yesterday, but am very disappointed.
Christina
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Penny , it is so rare to be ILC and be her2 positive wowww, if so she is one of the few. There is Trish here she is ILC in her second dx she turned HER2 +. Thank you for asking her and for caring
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Christina, i am sorry for the results of your CA15-3 , but is only your forth taxol give it a chance sometimes when you start a new line of chemo the markers rise up before starting to go down . ((HUGS)).
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unfortunately - there is progression in the liver mets. One is bigger with 4 mm and there are more little mets than there were on the last ultrasound. Tomorrow I will discuss with my onc the next treatment. She believes we have to change it.
Christina
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