How are people with liver mets doing?
Comments
-
thanks, Woodylb. Yes, I'm sure they will be treating the HER2 with the others. He listed four possible chemo drugs... taxotere, carbo, pertuzumab and herceptin. We will know Tues something about the liver, but supposedly if it comes out negative that isn't a sure take on it.
0 -
OMG ShetlandPony, ILC is so confusing. I was dx with december 2010, jan 2011 stage ILC stage IIIB T0N3+M0 . Meaning mybreast tumor was very small less than 1cm but the lymph nodes status was very high including two axiallaries 21/23 grade 2. So i had lumpectomy, lymph nodes dossection and Axilliaries. Did ACT full cycles for four months .
Then i had radiotherapy and started Femara for three years . Then jan 2014 i was dxd with liver mets consistant with the primary tumor ER+PR-and HER2 equivoque meaning borderline. So it was sent for FISH Which came back negative.
I had a total of 10 tumors in my liver the largest 2.5 cm the rest minimal. So i was started on carboplatiin + gemzar for six cycles each which reduced my tumors by 20% . Then i got Aromasin during summer of 2014 for three months after which i had a PET which showed progression in the liver and unmber of tumors increased and also showed bone mets on the spine, right hip , lower back plenty of them. They sarted me on xeloda , and was told i was running out of options. Xeloda failed but during this time i had received the results for the genomic testing which stated that i am highly her2+ . So i was started taxolH/P after three months a PET showed complete disapearance of both liver and bone tumors.
They were totally gone nothing. No activity . Nothing. I did my PET a week ago still showing the same results . Tuesday will be my last taxol dose. My onc intends to strat me on tamoxifen along with herceptin Perjeta . And we will take it from there. . We will see . I also take xgeva for the bones. As i took pills for the bones , once monthly before.
My cancer is ILC but it seems to be behaving more like IDC the strange thing is that my mitotic rate is too slow.
It is really confusing so i will take it day by day. I told my onc about you , he said it is extremely rare for an ILC to respond completely like you did to chemo..
So i have to wait and see .
0 -
What a wild ride, Woody. I think I have it now:
You had ILC IIIB T0N3+M0 in 2010/2011. Grade 1/2, typical ILC markers ER+, PR+, Her2- . (What does the + mean by N3?) Surgery, radiation, ACT chemo, femara.
2013 You had liver mets grade 2, ER+ PR- Her2 equivocal, later shown highly Her2+. Some reduction from carbo gemzar. Xeloda fail. Aromasin fail--progression and bone mets in only three months (wow). And then recently, Taxol HP got you a clear PET--no liver or bone mets! And now you are planning on HP and tamoxifen.
And how long have you been clear according to PET? Do you say it is behaving like IDC because of PR-? And by "too slow", are you saying that taxol worked despite low mitotic rate? Or that it is strange for Her2+ to have low mitotic rate? And there's no way to know how much of the good response is due to taxol vs. HP, right? Kind of like me with taxol vs. chemopause.
So we both had mets after three years, and we both had great response to taxol/taxol HP.
Thank you for sharing your story. I think it is so important for all of us here to learn what we can from each other. I'm going to start a new topic about Stage IV ILC today, but first I need to go do some family time.
0 -
I'm still here. I read everyone's posts and inwardly celebrate or commiserate, depending upon the news. I try to remember to thank The Lord for each step of our journey. No matter what, there is a happy ending.
Monday being a holiday, my next appointment is on Tuesday. My bilirubin will determine whether or not I get chemo. I'm still jaundice, my eyes are yellow, and my urine is usually dark. The oncologist said this can be so even if the bilirubin comes down, so who knows what will happen. It is what it is.
I thank The Lord I was able to spend another beautiful day at the beach with good friends. Life is good.
Happy Memorial Day. Thank You, Lord, for those who've sacrificed for our freedoms.
0 -
Penny,
We missed your posts and missed you. We thank the Lord for everyday we are here and for all the friends and loved one who surrounds us with their love and vigilence. I am waiting with impatience for your tests tomorrow and pray God that your billirubin is down so you can get your chemo. I hope jaundice will let down a little bit, as long as your liver is functioning i am happy .
I know this is asking too much but please post as soon as you get your results.
I am happy you enjoyed your day at the beach with your firneds and hope you spend many more.
Happy memorial day !
Love and prayers !
0 -
Shetland,
N3+ means more than 3 lymph nodes it could mean a lot , and mine where too many. This was the downside of my cancer. Well sort of speaking, cancer is a downside as a whole.
My ILC is not behaving as a classic once from the begining in the meaning that it is supposed to be indolent , well it is not. Mitotic rate is low yet the spread is extensive. One of the onc i deal woth even suggested that it is probably IDC but me and my MO do not agree with her. If it was IDC it would have showed i have had 5 pathology reports whoch states otherwise. It would have showed . My PR disapeared the second way around , my doctor said it is normal for my age i am 56 now . What i meant it is acting like IDC is that it seems more aggressive than the traditional ILC.
My doctors do not believe my response is to taxol they believe it is the her2 targetted therapies because of my history with other chemos to whoch i had barely responded. They told me before starting this combo that if the response is 20% it would be the taxol and if it was 40 to 50% it would be the HER2 meds. They certainly did not expect the complete response from what i understood . Of course for them there is no way of proving this until i pass the 6 to 8 months wothout the taxol. Even though the response of T/H/P was best ever in cancer history in a manner of progression free period the complete response was only 30% , these results are not based on people with ILC since ILC is almost never Her2 +.
So this is new ground for them too. When i saw your post that you responded completely to taxol i got scared because what if mine also responded only to taxol also? So i contacted my onc who said according to my history with chemo he does not believe so, of course he cannot certify it , no one can. But he believes ot os a response to her2 meds. Our choice for tamoxifen is based on the fact that it is the only one i did not try, except for faslodex.
My ER + status has also change the second way around and gace dofferent results in two different labs. In one ot said i am 85% in the second one it says i am 60% . Still my doctors believe an anti hormonal is still a viable option in my treatment. Just to make sure we close faucets for her2 to sneak in.
The last scan which was almost 10 days ago showed no evidence of disease NED. This after six months of H/T/P.
So now after three months we will scan again and see.
It is a good idea to open an ILC thread for stage IV , there is already one but they are all under stage IV , there ILC on stage 4 forum but since each has a different treatment you may find them on different threads of the forum. I found only three or four like me who are ILC with HER2+ one i haven't heard from for a while and another who posts from time to time and who i believe created a thread for ILC her2+.
I stick around here more often because i am deep in liver mers and also because i made some friends and i love the ladies here. I skim all threads from time to time of course and read , sometimes i help and others i am helped.
BCO have been a great source of information support and kindness.
0 -
Great to hear from you Penny and glad to hear you have gotten some time at the beach. There is nothing like the waves to calm me help me to relax. I'm sending out many prayers for good results tomorrow and that you will be able to have chemo. Thinking of you often...
Debbie
0 -
Thinking of you Penny, today especially. Praying that you get treatment and that bilirubin is coming down.
0 -
Just to let everyone know that I am around and have been reading. I have yet another UTI which has laid me low so haven't felt like writing much. All my energy has been devoted to trying to sort through my neighbor's plans to knock down their house and rebuild a new one with basement. Doesn't sound like much but they will be pile driving the supports for the basement about 6 ft from my bedroom. I will probably have to move out of my house for the summer but it is nearly impossible to get any more information from my neighbor. He sent me an email last week saying in which he stated there would be no vibration or excessive noise. Does he think I am stupid? Most of what I know I have gleaned from the local planning department and they are having problems with him, too.
On a brighter note, I saw my surgeon last week and he says I can drive again. Freedom!!
0 -
spring
Glad you have wheels and are driving 🚙🚙. Hope the UTI improves.
Diana
0 -
Returned from our farm town home & a very nice weekend w/family, friends & working in the yard. The cell coverage is wacky in the rolling wheat fields so I can write a long post...and it doesn't go thru. Other times, there's not problem so...I'm catching up.
Penny & pixie dust! I'm hoping today, Tuesday for us...finds your bilirubin behaving & maybe, possibly, having chemo. Am I right in thinking you may have cake & ice cream today???? God Speed!!!
For Woody...where it's already Wed...praise God it was your last taxol yesterday! Sent an extra thank you, Jesus, for helping you stay strong!
Nice post by your daughter, Chichi...sometimes it's hard to put into words what this journey means...those around us have a unique experience in living it with us & can put it into others' perspectives.
Sorry to not address all....watching Grandaughter & have to accomplish lots while she sleeps.
Spring....SO HAPPY YOU GOT WHEELS BACK!!!!
0 -
No bilirubin results yet but I'm getting a lower dose of chemo. Should be out of here in an hour. NP can't believe I'm coherent. I believe in HIM.
0 -
Yayyy for getting your chemo today, i hope the billirubin behaves for while and just all together go down. Prayers payers and prayers. Enjoy the cake
0 -
Ronnie, good to know you are always as busy as ever and as active , god bless you and bless your family , keep at it , it is a great incentive
) missed you.Chichi, wonderful and loving daughter andnwho loves her mamma , you must be a very proud mother God bless you both.kisses.
Spring, i am thrilled you are able to drive , this should give you back a small part of your life . With God's speed.
0 -
Penny, sending good wishes. Shock those doctors some more!
Also glad to hear about Springwatch driving, RonnieKay's time with family, Chichimaine's awesome daughter. It feels like each "little" victory or good time belongs to us all, as well as each sorrow.
0 -
Woody, one of the first things my onc said to me about finding mets after only three years was, "ILC usually isn't this nasty." Yeah, taxol was my first chemo. With ILC that has changed to PR- and Her2+ you are in a subset of a subset. But being able to use the Her2 therapies is helpful. May I ask why you are using tamoxifen instead of faslodex?
I'm debating whether to start a Stage IV with ILC topic (in the Stage IV only section) vs. an ILC Stage IV topic (in the ILC section). I'm going to ask people what has worked or not worked for treatment, and maybe imaging. Do you have an opinion?
0 -
ShetlandPony,
I have a whole genetic study of about 20 pages talking only about my specific kind of ILC . i read all of it , it contains all kind of genetic names and gene has a function with which a treatment works or does not work. Plus it's specific function. True i seem to have a very variated cancer in each cell. I was told the same thing by my onc when i was first dxd , that ILC is indolent and very slow growing. Well mine does not seem to fit this criteria it may be slow grwing but it seems to be diffuse. Being able to use her2+ therapies was not only helpful it was a life saving option. I was nor responding to any kind of chemo known. So even though her2 is very agressive , the option i got actually saved my life or i would have already moved to palliative.
The reson i am using tamoxifen instead of faslodex , is that there are no studies done on herceptin/perjeta and faslodex. There are some studies regarding femara and others and the recommandation is moderate. Since i got the maximum time with taxol plus maximum response , i have to go on hercept/perjeta alone and since i am still fairly ER+ my onc and I made a decision to take an anti hormonal to cover ER+ possibility for the cancer to soread through it. I have already taken femara and aromasin . One worked for three years and the second got me to bone mets. Arimidex is the same family as femara so we decided i would try tamoxifen, since before the aromatase inhibitors it was the drug of choice for all cancers and it worked. Meanwhile we will keep the PET scan every three months for a year if there is no progression , then we will start doing it every six months and so on. Faslodex by itself is very strong. I have been on very heavy chemo for a year. My body needs to rest and frnakly my doctors prefer me healhty and well rather than heavily medicated and in bed. As long as there is no need for it. I am satisfied with the decision and we will see how it worked three months from now.
As for opening a section for ILC stage IV advise you to open it in stage IV usually all stage IV topics are together and anyone who is not stage IV should not post in them. Frankly it may be depressing for those who are in a lesser stage and it may scare them or cinfuse them.
To tell you the truth and from what i understood from my doctors and the reading i have done. No one really knows much about ILC since it is not a very common cancer. Only 15% of all cancers are ILC in the last few years it became 20% and it started to get noticed. ILC usUally happen to women of age 50 and above except now younger women are getting it . So it was usually treated the same as IDC. it is only in the last two years that doctors started to think that maybe they should use a different strategies. Since treatments are becoming more indivualized for each person whether IDC or ILC. As you may have noticed each person with the same thoe of cnacer resoond differently to the same regimen. So even if you ask each persin what treatment they got , it may give you option but not a solution.
For example a lot of women and mainly ILC took xeloda and it worked for them, yet other s it did not do anything , me among them. The other one is chemo ILC is know not to respond to chemo fully like IDC due to its low mitotic rate and the nature of the cancer , yet you responded totally to taxol. While i didn't respond to three major chemos. This is why my doctors are not sure that it was tacol who got me to NED. This is why they will wait . I could go either in remission or reoccurrence , both possibilites are valid in my case. All i was told is that in the regimen i took and in the stage i was in and the intensive tumors in both my liver and spinal bones a complete response is only about 20%. As total remission is 10%. I do not know where i stand in all this but i can only hope and pray.
I do not go that deep anymore into this like i use to because it is very tiring and it prevents me from taking advantage of the time i am alive to actually live and enjoy it. But of course when a new decision have to be made , i would like to take part in it. If i feel it is right for me i do it and if i don't , i refuse it.
Lollll i am sure i lost you somewhere , but i hope this helped you. I also hope you get the right treamtent one with which you feel comfortable with and one which is able to stop your cancer or eliminate it. I pray for each and everyone of us to have a long and healthy life. God bless you.
)0 -
Hi - I wrote a whole post about 45 mins ago and I am not seeing it here - is there a way I can look it up so I don't have to rewrite it? Susie
0 -
Hi Ladies, wow I've missed so much. Been a very bad week for me. Have had bad pain in the ribs, front, side and back. At least I think its the ribs. I took T#3 and one was not enough so had to take 2. They made me sick. MO faxed a script in for something to help the stomach. Still get some nausea. Thinking my tx is not working. Chemo next if the CT shows progression June 8.Then I lost my brother 2 days ago, so now I'm in pain 2 different ways. He was only 59 and so supportive and loving. Such a loss for me. Have to get through visitation and the funeral yet. Lord help me!
Cathy
0 -
Cathy - keep us posted on your scan. Sorry about your pain. Really sorry about your brother. Soon your sweet memories of him will help you through the grief. Lean on The Lord.
Love, Penny
0 -
lots of love and hugs to you Cathy.
0 -
I had a CT on Tuesday. My oncologist called me tonight with results. I knew they weren't normal. She only calls when its something. Evidetly, there is a 1 cm something on the CT scan. She said that it could be vascular and due to the contrast or it could b something. I have to have a MRI next to look into it further. So now i wait for insurace approval and then have the next test. I hate waiting. I struggle because I was not yet recovered from the brain cancer scare I had back in February and the insuing surgery. I thought I might get a little break from the viscous cycle. I hesitate to say anthing to others around me because I don't want them to think of me as the person who cries wolf. They of course don't get the contstant stress we are under waiting for the other shoe to fall. How could they? I just don't want to be the person who needs help or is always sick in their eyes. Anyway, I am hopeful that it won't be anything. But those of you who have had to move on to new treatmets give me hope.
thanks for being here
0 -
I feel a lot of pain for so many of you who are struggling right now. It is so horrible to never know for sure, or have drugs not work. sorry not to write individual notes.
I have had VERY good news. My liver biopsy came up negative. I was warned by the doc who did it that if it was negative that would not be conclusive because it was very difficult for him to get to, but my oncologist is quite happy and has declared me a not Stage IV (for the time being). He says we will know for sure if we see no changes in it over the next month, because he is finally starting chemo on me Wed. Wants to do chemo before surgery ... a bit of a new approach that seems to be working well for those who have tried it. I'm all for it, because I don't want them putting it off and then seeing the lesion in the liver grow. If, it is not cancer, or not a BC related cancer, because it is in only one spot, they can also remove it with surgery. So we will see after about a month of chemo. If it is reducing in size, that is both bad news and good news, since it means it is a liver met, but it also means it is responding to treatment.
I have to admit I am a bit scared about starting chemo. I will have 4 drugs (I'm also HER2 positive) 1x every 3 weeks for six sessions. That's about 4 months. Is that a typical time for chemo? More or less than normal? understanding that there probably isn't a real normal in all of this. Of course I'll lose my hair, but that's no big deal. Not losing my life is the real thing, but I do fear the nausea and some of the other symptoms. I am fairly overweight, but they are warning me not to continue to work at losing... (I was on steroids for 8 months and had gained 20 lb. and now have lost (on purpose) 5 of those 20). I am trying to eat healthy and avoid sugar and white starched... lots of protein. Any suggestions or comments?
What a difficult trip for everyone. So sorry, that so many of you are younger than me. I am 72.. and that you must do this at this time of your lives. I'm thinking of you.
0 -
tryin2staycalm,
I am so sorry for your loss, it is hard to lose someone so close to you , specially a borther. May his soul rest in peace and may God give you strength to endure.,
I am also sorry for your physical pain And hope you soon get some relief, may God be with you.mlove and prayers.
0 -
Leftfoot,
I am so sorry you are goong through the anguish if waiting, and i hope it is something but not cancer. If it is still try not to worry so much. I went through 4 chemos in one year until the last one worked some. O fail to see why you should not cry wolf when you are worried and struggling. Sometimes people tend to forget that we are fighting everyday for our loves, just because we look healthy.
I think it is ok to tell someone you trust and you like of your fear and of your disease. You should not be worried about how they feel but about how you feel. You have been through a lot this year and ot is within your right to vent about it.
Where did they see a 1cm ? Keep us informed about the MRI . Meanwhile, do not lose hope or give up until you know what is and how to deal with it. You know that many of us on this board are dealing woth different mets and yet still alove and kicking. I am not saying it is easy but it is doable.
I hope your mind is put at ease soon , my prayers are with you and i hope you give us some good news soon. ((HUGS)).
0 -
Kcoralee,
I am glad you got some of the answers about the lesion on your liver. At least it is not confirmed. Do not worry about chemo or how many , our body has a way of dealing with it. We are always stringer than what we think. Each one of us is resilient in our own way.
Please do not feel bad because you are older , to each one and no matter how old or young we are , life is precious and we try to hang on to it as much as we can.
Chemos do have some side effects and it differs from one individual to another. But all side effect more or less have medication to lessen the effect. If you experience any side effects be sure to tell your doctor about it and get some meds for it.
I wish you good luck and good results on you new journey and pray you get the results your doc expect. God be with you.
0 -
Hi everyone. I don't post often but I visit the site daily to check out how you are all keeping. I have just finished my second cycle of clinical trial and the tumours in my liver are still shrinking but to everyone's surprise it has actually eliminated the small lesions in my lungs too. My bones are stable. Unfortunately when they did the benchmark eye tests and scans, an abnormality was visible on the orbit of the eye. Second ct scan on the eye shows that it is a lesion and another two lesions have been seen on the other eye.oncologist seems to think they had been there for a while. Not picked up because we very rarely get our eyes tested as thoroughly .I have only another cycle to the end of trial. If we get good results at next scan I will be able to continue with the treatmenot until it stops working.I have had very few side effects. sore mouth and hair thinning, I can live with that.
Has anyone else had experience of eye lesions and if so what treatment did you have.
wishing you all pain free days.
0 -
Thank you ladies for your kindness and support. Kcoralee - I think of chemo as a blessing right now and look forward to finding something to give me more time. I hope it does the same for you. I suppose it does depend on the chemo but my MO said they are not as harsh as the original chemo. Glad your biopsy was good news too.Good advice redwolf ty I am trying to do just that.
Leftfoot - Thank you and yes waiting is the worst! I'm waiting with you.
Woodylb - You are an amazing supporter of us ladies here. Let me say Thank you from all of us. It doesn't go unnoticed. Hugs to all.
Cathy
0 -
Cathy, I am so sorry about your brother, especially as he has been so supportive. I hope your back and rib pain is nothing sinister.
Motherflush, sorry I have no experience of eye lesions. Have you tried doing a search?
kcoralee, Good news on your liver biopsy. They know the lesion is there and they will keep an eye on it now. Hopefully, it will stay unchanged.
leftfoot, I hope you get insurance approval soon to check your lesion. MRIs are much more sensitive than CT scans and should help to clear up exactly what it is.
My refrigerator/freezer packed up last night. Fortunately, the fridge was nearly empty as I was going shopping today but I have lost every thing in the freezer!
0 -
Thank you Cathy for your kind words ! My heart goes out for each and everyone of us and i pray the lord to help all of us to go through this journey knowing we are not alone.
0
