How are people with liver mets doing?
Comments
-
So sorry to hear this news, Christina. I'm praying for you, and all of us. Keep us posted.
- Penny
0 -
sorry for your news Christina. I am hopeful the next treatment will kill those cancer cells
0 -
Ohhhh Christina! I am so sorry about your progression, i know how you feel and i am really sorry. After this shock have passed you and your onc will find a good chemo which will get your tumors to shrink and stabilize and there are a lot of those. On carbo gemzar i had shrinkage and also the small ones disappeared. Keep the hope that you will find one which will work for you. Lots of prayers and hugs.
0 -
I'm happy to read the conversation about ILC and Her2+ because I haven't been able to find anyone else with that type of cancer. I really feel like the odd-one out! I've often wondered if being ILC affects my treatment with Her2 targeted drugs. On my first treatment, I had a great response on PHT, but when we dropped the Taxotere after 6 cycles, I had progression when on Perjeta and Herceptin only. Now, I've been on Kadcyla since February, and my scans have been stable...never any regression; however, my bloodwork last week showed my liver enzymes have shot up higher than ever. I'm going in tomorrow for repeat bloodwork. I'm afraid this means a new treatment, and I have no idea what will come next.
I'm also concerned that I don't take anything for the ER/PR+ part. I've asked my onc, and he doesn't want to give me an AI's along with chemo. Kadcyla contains a chemo bonded to Herceptin. He allowed me to take Aromisin after I dropped Taxotere, but that was only for a short time since I had progression on the P & H. Is anyone taking both chemo and and AI?
When I was dx Stage IIIa in 2003, I was ER/PR+ and Her2-neg. When the cancer came back in my liver last year, it was still strongly ER+ (greater than 90%), PR+, and Her2+. My onc said at the time that this was the best possible pathology report I could get, I guess because of the new Her2 drugs. I've asked him if its being ILC makes a difference, but he gave me a vague answer. In the study, I wonder if they even look at the response differences of ILC and IDC...probably not.
0 -
I'm so sorry to hear of txt not working for my sisters. I've not read many threads lately and catching up a bit is disheartening. I know we need to stay positive...it's a hard job. ILC is such a different beast...my prayers and hope for something that works.
0 -
Trish,
I am sorry to hear about your blood work shooting up again, but wait and see it could be that kadcyla is causing it not a progression. Until now i believe that they still treat ILC as IDC , i don't believe they did enough research on it. The norm for ILC is that it is indolent , slow and all these nice words but the truth is even though ILC has a low mititotic rate it does not mean it is not harmful because it makes it less sensitive to chemotherapy and supposedly more responsive to hormonal , well the latter is not true either, i got almost three years on femara , and nothing on aromasin except a huge progression. I don't believe they give anything with A/A because because on its own it is already tough on the SEs. In a sense i would call you "lucky?" Because your ILC turned her2+ but i am no longer really sure of anything. What i am sure of is that they really don't know much about our disease its pattern and the way it spreads. Still i am thankful, some of us are benefiting from different therapies and are getting to live longer . I hope your blood work turns out to be an SE from kadcyla and nothing more. Keep us posted. Hugs .
0 -
Thank you RonnieKay for your heartfelt wishes and i hope there is a treatment somewhere which will work for all of us. Hugs.
0 -
I'm sorry to hear that. If it is back I just don't know what I will do. The radiologist told me I can have it over and over again and in the same spot. My oncologist wanted to give me a light chemo injection every month. He said it only takes 5 minutes to push in the port. I forgot the name of it. I read all these posts and everyone are taking drugs I haven't heard of. I guess I will be getting real familiar with them. Did you have the ablation done more than 1 time yet? They told me sometimes it pops up in another place. I will know in October.
0 -
Hi Ladies, just wanted to introduce myself. I'm new to this thread. No liver mets in July. Sept. scans show 5 lesions. That was fast. Doc is gonna start Taxol and Xeloda on Mon. Have to think about port and head covers I guess. This trickster is keeping me on my toes, that's for sure.
0 -
Welcome. not the best news but I hope your treatment kicks those little buggers into healthy stable land Maureen
0 -
Welcome, skylotus. I'm sorry for your progression. I'm sure the new protocol will kick all those nasty C - cells. Meanwhile hang in there- the ladies are wonderful.
Yesterday I started a new protocol - Carboplatin and Navelbin. Wish me luck. So far so good - no SEs. I took 3 days off (I'm working full time) but I don't feel bad at all so the next time I won't stay home .
Christina
0 -
Welcome, Skylotus (love the name), but sorry about your news. I like your "keeping me on my toes" comment. So true.
Kiss77 - so glad you're doing well on carbo & navelbine.
- Penny
0 -
Hello, I havent been keeping up for awhile. Sometimes I think I get to wrapped up in this and need to go live for a while. But boy do I get behind. I was started on Megace last month and TM went up 40 points in 1 month so on to something new. Started Gemzar and Carbo on Thursday. Only mild nausea so far Hope that will be it. Onc says I will probably lose my hair again. I hate that. But I am already prepared from last time with Adrimyacin. Anyone else on Gemzar and Carbo? How did they do on it. Onc hasn't said we are running out of options yet , But I guess should ask him next month. Just to check on things. He told me he would let me know when I should get things in order. I havent done that yet. I was only diagnosed stage IV in 2012 I hope to get a few more years. I did see both my boys graduate. Hope to see them married and with grandbabies too . But may be pushing it I know, But a Mom can dream.
Well good luck to all of you ladies. Just thought I would say Hello! Red
0 -
Hello Red, sorry abut your tm. I hope you get the full benefit of the combo carbo gemzar. I did the same combo in january and i got a 25% shrinkage and 3 tumors disappeared. Till the forth session i was ok with the SEs then the blood and platelet started going crazy so they had to reduce the dose by almost half. Some people did very well on this combo others like me did ok. I took aromasin after it and it messed things up again . I hope your cancer responds to these meds and i hope we hear good news. Keep us posted.
0 -
I also would like to introduce myself and let you know that I am new to this site. I was diagnosed with liver mets on September 3rd. My original diagnosis was IDC ER+ in September of 2011. I had bilateral mastectomy in Nov. 2011, chemotherapy and have been on Anastrazole since the end of chemo (AC and Taxol) in May of 2012. Thought all was well until I had pneumonia...had a chest CT scan that showed 4 lesions on my liver. After a liver biopsy it turns out that the mets are not ER+, so hormone therapy will not work. I sought a second opinion and it was confirmed, so now I see my onc on Monday to find out what's next...they were talking Xeloda at the 2nd opinion.
I've been trying not to freak out. The 2nd opinion dr. told me I might only have weeks to live or I could live for several years!! What the heck kind of prognosis is that?!? I am so encouraged to read these posts and see that there is hope.
0 -
Chichimaine,
I am sorry you joined the club of liver mets, nobody really wants to be here. But you are welcome to post anything you like. You seem to have become a triple negative from what i read in your post. Of course this limit your treatments to chemo only, but it does not mean it won't work. There are some ladies who are on chemo only and they are doing well. Liver mets usually are harder than elswhere in the body since it is visceral meaning it hit a vital organ and also it means that the cells are capable of travelling somewhere else in the body and colonize. But is is not hopeless. Your doctor cannot predict any outcome unless he tried everything in his power, to stop the disease from progressing to other parts of the body. Find an oncologist with whom you feel comfortable and who knows his stuff instead of one who brings your hope down. Don't get discouraged and find a doctor who can treat you right in order for you to survive. Hope is half the treatment for this disease. I hope you get a right treatment to stabilize your cancer and gives you a good quality of life. Good luck and keep us posted.
0 -
Another new-to-liver-mets girl here. I was dx Stage III almost 6 years ago, then Stage IV (bone mets) almost 4 1/2 years ago. In Aug I found out I now had 2 spots on my liver (9mm and 1.4cm). My tx is now Xeloda and Zomera.
I'm having difficulty wrapping my head around the liver mets finding. I go from terrified to accepting to not believing and everything in between.
Leah
0 -
Sorry Leah_S, it is quite horrifying to find out specially after 6 years that your most important organ has been touched by this disease. It is scary. However, not without hope. As you have read a lot of these ladies have been living with liver mets , with an acceptable quality of life. Almost a year ago i was diagnosed also with extensive liver mets, i will not tell you it is easy but i will tell you have hope as long as they can control it where it is you will be fine. I will be starting xeloda as well this week as i started a new progression. I hope we both get a good run on this treatment. Good luck , my prayers are with you. By the way , i believe we are neighbors, as i am from lebanon.
Keep us posted. 0 -
Welcome chichimaine and Leah_S. Sorry you have to join us. I'll be praying for you.
I apologize if this issue has been addressed on this thread before, but does anyone with liver mets drink alcohol? When my mets are at their worst, my oncologist says to avoid it, but when they seem manageable, I'm told it's ok to have a glass of wine at night. I hate these hit men in our livers!
- Penny
0 -
Thanks to all for the encouragement. I will find out more tomorrow after visit to onc. Just want to get started as soon as possible. I have a lot of living to do still! The worst part for me has been telling my children and grandchildren. My youngest daughter was also diagnosed with bc at age 29...stage 111b. She is a four year survivor with two young children. Telling her was the worst...we have been holding each other up for these last four years and I don't want her to think that the same will happen with her. This stinking disease treats each of us differently...none of it good, but I know there is always hope. Ok, I'm rambling now...anyway, thanks again for the encouragement and I will keep posting as I start this "re-match" with the enemy!
0 -
Penny, alcohol is not advised for BC patients generally but i do indulge from time to time. But it is a no no .:))
0 -
Thank you for the welcome! And yes, Woody, we are neighbors.
I don't know about alcohol since I never looked into it. I don't like it so it was never an issue. My parents never could figure that out, since they both really enjoyed good wine. Oh, well, they also enjoyed very good coffee and i can't stand that! Maybe my teenage rebellion, sticking around all my life?
Leah
0 -
My Onc said I could have a little. So I indulge . Not daily but I do weekly usually. I like beer, And what will one do?
0 -
Running a fever of 102.2, with 2 aspirin in me. Waiting for a call back from the doctor. Prayers are welcome. Thanks.
:-) Penny
0 -
Being admitted. I have neutropenia. Staying overnight (in isolation) for IV antibiotics and fluids.
:-) Penny
0 -
may the lord be with you Penny, i hope you get safe and sound
)0 -
Penny,
Hope you are feeling better and the meds are helping! Saying prayers for you. (((HUGS)))
0 -
My thoughts and prayers are with you! He didn't say we wouldn't have troubles...He said He would be there with us through those troubles. Feel better!
0 -
Onc visit on Monday was good. He was very upset with second opinion onc who had basically taken away my hopes for a future. Assured me that there are numerous chemo treatments that we can use. I start Xeloda this evening...should arrive from pharmacy delivery this afternoon. Are any of you on Xeloda? How are you tolerating it? I was fortunate to not have any nausea with the A/C and Taxol, so hoping I will not have much with Xeloda. Am prepared for the hand/foot syndrome.
Hope you all have a blessed day!
0 -
hello chichimaine,
I started Xeloda today, my firs dose was in the morning after breakfast, i felt nothing major except a bit woozy . Till the afternoon , i had a little nap. This is it till now. Tonight, i take my second dose i will let you know if there is anything worth mentioning. Hollander here, have been on Xeloda since last year and she is well except for the hand and foot syndrome. I hope it keeps working well for her and to work for both of us. Good luck and have a blessed day.
0
