How are people with liver mets doing?
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Becky, i hope you keep doing well as far as possible. Be well.
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Hello ladies,
Following my genomic test and CISH test a recommendation came to me from memorial sloan kettering cancer center to add herceptin to xeloda in my treatment. I will inform my MO next week as he is abroad. Wish me luck. Love and prayers to all
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All the best Woodylb. Time to kick the cancer cells out
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God's willing JCS, I wish the same to your dear mom. I am not there yet, but faith and hope are in the regimen
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Woohoo Woody!!! That's wonderful news...bring on the biologics
. Chichi...I talked to one of the gals at my center that works in trials & she said my onc is pretty conservative as far as the port goes & she agreed you probably had a reaction as opposed to nav going in the vein. Glad to hear it went well for you! I've not had nausea (a little queasy right after txt) but if I do have any stomach issue, I have compazine (the best) or omneprazol....usually after Indian food (my fav!). Maybe you could get some for queasiness.Thinking & praying for all XOXO
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RonnieKay,
God bless your heart, i hope youbalways keep this spiritband energy!!! You are always in my prayers. Hugs.
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Oh Woody....such sweet words...bless your heart! I meet with my new oncologist today & I know it's treatment day for others! Wishing us all strength & healing....and many years together.
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Had scans on Monday. It's being called "stable;" however, not truly so. The lesions grew, but very little. So, that beats the alternative - could have been more growth or more lesions. However, I've been temporarily taken off chemo because of hand/foot syndrome - can barely walk. It's awful - much worse than when I was on Xeloda & I've done everything under the sun to ward it off. So, see MO in 3 weeks to have it all reassessed. He said it could take up to 3-4 months for the feet to resolve - ugh - I hope it doesn't take that long, getting tired of sitting and laying down.
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Rough day for me today....my biopsy results came back positive for liver mets and we are waiting for confirmation about the receptors...the core part of the biopsy was not back yet....I feel numb...scared....not sure what to think..... or to say to my family..what do I tell my children?.....meeting with onc on friday morning...she is already talking about xeloda...2 weeks on and 1 week off....1000 mgper day I think she said....I cant seem to process this right now. Also wondering what other testing I should have to best determine treatment options?...welcome any information you have that will direct me..thanks
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RonnieKay, i hope your meeting woth your onc goes smoothly and i hope i hear good reviews.
God be with you. Prayers always with you. hugs
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Syrmom,
It is good to hear from you it's been along time . I am so sorry for your hand and foot syndrome, and i am dreading Xeloda, i am on my second cycle with it. So far nothing. I am now on 2500mg twice daily.
I had the same so called stable results with carbo+gemzar unfortunately i was put on Aromasin and i got my progression. I hope, that if you continue on doxil you get to real stable, but at least it is slowing it down.
I hope your hand and foot syndrome will subside fast, my heart goes out for you as i got these syndrome on docytaxel. Keep us posted . Hugs.
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Njoy,
I understand your confusion and fear , liver mets are not the news you want to hear. But don't be scared, be strong and fight to get better, there are options and treatments , you have to believe that or it will destroy you. Xeloda seems like a good option, i am on it for the time being and on high dosage 2500mg twice daily for 14 days and rest one week. So far no major side effects, but my onc told me it will start showing after the third cycle.
Your results for pathology for hormonal status will most likely be the same as your original tumor the PR will depend on your age .
After my liver biopsy showed some action on the Her2 front and there was a big confusion about it, i had a genomic test to determine my cancer genes. The results showed that i would benefit from her2 therapies and taxanes. So the test is helping in shaping my next treatment , god forbids i get a progression on Xeloda. The test may not be covered by insurance or medic care. I paid for it myself. Since i sent it to Germany it was quite costly 6500$ , i do not know if it is less expensive in the US since it is done there. I hope this helped. I personally told my son the truth since the beginning he was 14 when i was first diagnosed the second time around he was 18 . So i explained everything to him calmly and i told him i am not scared that i will fight this. We are fighting this disease as a family and with the strength from God. Keep us posted and God bless you.
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Thanks Woodylb... I appreciate your post..I know I have to fight and I will...I guess Im on the pity pot a bit today becuase I just came off two surgeries over the summer that went better than anyone expected and I really thought I was finally walking out into the light and getting on with life...best I have felt mentally in two years..full of gratitude and then this news!?!? So much for that I guess..vent and move on.....the 1000 mg a day dosage seems low as I read thru posts of others on xeloda....hope onc is being aggressive enough...the other thing Im curious about is that although Im 55 I still get a period more often than not..even on Tamixifen...that cant be helping being Im hormone positive? Another question for the onc on friday....as for my sons Im not sure if I want to tell them everthing....the 20 year old knows a lot but the 14 year old not so much...he's such a worrier I dont know if it would scare him...God will have to direct me on the boys...thanks again...my prayers for you that xeloda works for you too with little side effects....God bless...
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I think the dosage is actually 1000 mg twice a day so I had that wrong and maybe thats why it seemed so low....2000mg/day..?? ...will know on friday
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CT scan today. Had brain MRI yesterday with mixed results. Could have necrosis or the original tumor could be back and growing. Deciding between having brain surgery or waiting another 3 months for another scan. I think I will wait for my CT results and go from there.
Xeloda is a great cancer killer. It has its side effects but it is worth while. Just don't be shy about telling your doctors how you are feeling.
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Hello all. Latest scan shows growth in all 4 liver tumors plus a possible new one. No more A/A for me. It's on to Halaven in a clinical trial with Mifepristone.
I have been feeling so great. Sigh.
Also they see something all over my lungs which they're saying is radiation scarring. From what, CT scans? Maybe it's an early sign of pneumonitis which Afinitor can cause. Maybe the radiologist doesn't know how odd lobular cancer can look. This part of the report is just crazy making.
My lungs feel great, my breathing is great. I'm a singer. Just got back from a music festival in the desert, and the altitude, dust and dry air bothered me not one bit. So.
Off to get my vagina probed in prep for the new study. Yay me!
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bestock, I went from 8 lesions @2cm each mid November 2012 scan to "liver full of cancer" 6 weeks later and to get my papers in order cause if the chemo didn't work I was heading for liver failure very quickly.
Ronniekay, my port still sucks! Ack!! I'm developing a keloid at the jugular incision
Onc said we'll talk about it after Christmas when I see him again. My latest concern is my liver function tests that have been steadily increasing the past year...last month they were at the top numbers of normal, hasn't been that high since I was diagnosed at the beginning of this ride. My liver is not happy, can't lose weight, Onc said I have developed sarcopenia....my liver is breaking down my muscle and converting them to fat cells...really? Still waiting for the referral on this new development. They had to increase my Herceptin 20% cause I'm still gaining even tho I'm back walking...not happy...at least there's no snow yet...
Had my flu shot, anybody else?
I've already had the pleasure of having a visit from the shingles kid several years ago and don't want another visit...has anybody had the shingles vaccine? Any problems for us?
Saying "hi" to everybody!
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Njoy,
They may start you on low dosage and they will increase in the second cycle. I started on 1500 mg twice and was increased to 2500mg twice. It depends on your weight and body mass. So do not feel you are getting a little and others are getting more . They calculate according to weight the right amount for you. Good luck!
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I'm just catching up on this thread. To all who have recently received bad news - I pray that things turn around and you'll be posting good news soon.
You're all in my prayers, and heart, every day.
Don't know when my next scan is. Guess I'll find out Wednesday - my next appt with onc.
:-) Penny
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Jimmiebell & Jo - so sorry to learn of your "bad news," I understand first hand how frustrating it is. Jimmie, pls keep us posted on the trial. My MO has mentioned Halavan as a possible chemo next, but then again has mentioned others as well. Right now I'm miserable with hand/foot syndrome that gets worse instead of better every day! Now have the mouth sores as well, so I'm not happy.
Jo - I was told NO shingles vaccine while on chemo, so you may want to ck with your MO.
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Jimmie and Jocanuck, so sorry about the progression. Seems like we are all headed in the same path and it is just a matter of when. I am curious to know the following: were your liver tests (ALT, AST and LDH) levels high prior to your scans? What about your cancer/tumor markers...did it show any indication that you were headed for a progression? My MO says that blood tests are not particularly accurate..i.e., your blood tests can look great but it can be a "mixed response". Has anyone ever heard of this term? Why the heck do we need blood tests for when scans show the opposite of what your blood tests depict?
Hugs to both of you...and as a BC sister, I am (along with the rest of us in this forum) holding your hand.....
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Leftfoot, good luck on your scan's results , wishing it will help the doctors to make the right decision. Keep us posted. My prayers are with you.
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Jimmybell,
I wish youngood reponse on your new trial meds , please keep us informed . God bless you.
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Jocanuck,
I don't think it is a good idea to get vaccines during chemo. My Mo warned not to get any.
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Syrmom,
I am sorry your hand and foot syndrome are getting worst, what did the doctors say? Can't they treat you so you get better? I am so scared of them since i started the xeloda and my MO told me it will snow after the third cycle . I hope you get better soon . Please let me know how you are doing.
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Penny,
I hope you hear good news from your onc and that your scans show regression , the Lord be with you.
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Teen22,
Since my dx with liver mets, my blood test and liver function tests were normal even when my tu ors were numerous and even when i was progressing. My Ca 15-3 was never much of an indicator. Except on the second progression it went from 32 to 38. Yet they keep doing blood tests , one if you are on chemo they have to and also during treament to try and track it. While woth some people they are accurate with others they are not. I seem to be one of those people.
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Woodylb, thanks for the info. Xeloda is my first chemo and am unfamiliar with the SOPs. I didn't know that it was mandatory to have scans every 3 months even if your blood tests (liver and tumor markers) are showing "normal". It just seems illogical - but yep, I just read that this was protocol - to monitor how treatment is responding.
How are you doing with fatigue? Any problems with anemia? Seems like most of us have the same issues relating to fatigue. Tired of being tired. All I pray about now is some QOL. Seems like all I do, day in and day out, is take my pain meds. Sigh....
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Teen22,
On my first cycle, i got sleepy everytime i took the dose , during the day it was ok , but the night dose , made me sleep on the couch for 2 hrs. i did not give me diarrhea. Fatigue was mostly towards the afternoon.i am close to finish my second cycle with increased dose. Until now i am fine, no major side effects but my bowel movement changed , i go more often. I will see when i do the blood tests of my WBC are affected , till now my blood tests are normal. My MO told me that during my one week break he may give me Neupogen as preventive measure to boost the whilte blood cells. We will talk this week to decide. He also informed me that the side effects will mainly show after the third treatment. I am not sure i am continuing with xeloda since my her2 status changed to positive. They may either add herceptin to xeloda or give me instead , herceptin, perjeta + taxol. Not decided yet. It is all so confusing.
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Woodylb, can u not be on Xeloda if you are HER2+? I think I may be HER2+ when they biopsied the tumor on my T8. I will have to check and look at my paperwork.
BTW, do you know of any other chemos besides Xeloda which will not let you lose hair?
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