just been told I have secondarys in my liver will have ct scan etc soon ,but will be started on herceptin and taxotare soon and possibly perjeta ,I am her2
Hi geordie
I’m sorry to read of your recent diagnosis. I’m sure some of the other users wil be along to soon to offer your their support and experiences.
In the meantime if you would like to talk things through please do give the helpline a call and chat with a member of staff, they are there to offer you emotional support as well as practical information. The number to call is 0808 800 6000 and the lines are open Monday to friday 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
thanks x
Hi Georgie I did reply to you yesterday but post lost in cyberland.Sorry to hear about dx,I have exstensive bone mets(dx in May 2009) and was told I had spread to liver in December.Sorry as I am er+her2- so on a different treatment plan…I am also on a new treatment everolimus/exestemane.I know many people have had good results on herceptin for a long time…I don’t know much about perjeta but know they are very excited about trial results.I mainly replied so this would get to top of latest posts ans hopefully someone will be able to help you.Good luck with scans…I get my mri results tomorrow.
L xx
Lucinda, good luck with your scan tomorrow!
Geordie, many of us in your situation. It’s rubbish but thank God thre are quite few options to keep us going. Stay positive. I am also treated in RM and I am on capecitebine/ zoladex and Denosumamb ( bone mets too). Initially ER+ but liver met ER-ve…
Keep fighting. We all think of you
Valia
x
Hi Geordiex and all the other liver met ladies.
well Geordiex I was diagnosed in February with a bc secondary tumour on my liver. Today I am starting on Taxotere and Herceptin with the addition of Perjeta (pertuzemab) just as soon as my onc can get hold of it. i am in Dublin and it hasn’t been licenced here yet so will have to pay for it Until its available through the system. So looks like you and I are on exactly the same treatment!
Fortunately my bone scan was clear.
it would be really great if we could help each other along the way. I’m slightly ahead in treatment so could hopefully give a few tips.
if you would like to pm me please feel free. I’m only just getting unused to the web site, used a lot in 2008/09 when original diagnosed, had a wee blip of localised recurrence in 2010, but since the too busy to post.
best wishes to everyone and thanks for all the really great information you give yes newbie secondaries.
Sue xx
Hi everyone
I have recently been dx with liver mets.It is less than 1cm which I am told is very small for liver mets. The scans show no sign of it else where. I start my chemo on Monday along with Herceptin and Perjeta. I will be having the Herceptin and Perjeta for as long as it is working. I have already posted on this site and have had some very positive feed back. Lots of ladies are and have been on Herceptin for a very long time which is very encouraging. I was wondering if anyone had already started Herceptin and Perjeta and how they were getting on. My onc and nurse rave about this drug so I hope it works for me but it nice to have some information from those of us that have to take it.
Best wishes
Angela xx
I was told once you had started on a regime perjeta couldn’t be added in ,and that it has to be the first treatment tried for secondaries ,perjeta not available here yet for me they are still trialing it at the freeman Newcastle ,and my ALP was too high at the time has dropped right down now with taxol and herceptin to high normal but went as high as 1900 .
Hi Everyone
Just wanted to check in and see if Sue496 and geordiex have started on their treatment of taxol Herceptin and Perjeta. I have had my first treatment and have my nxt one nxt Tuesday. The worst was the 2nd week, got ahorrible rash all over face and chest and felt like I had flu coming for about 3 days. But then the rest of the tme i have felt fine not even tired although am a little paraniod about aches and pains at the moment expecially in my left breast and I seem very down at the moment thinking about how long I have live (very negative I know but I do have these days). I hope ladies if you have started on your treatment it is going well and I would love to know how you are getting on. X
hi weekly taxol and 3 weekly herceptin for me ,had an awful time with 1 dose of docetaxel hospital for 10 days with e coli anaemia neutrapenic and de hydrated with cold sores thrush etc in my mouth ,any how this one is easier although still tired and weak legs etc ,no perjeta as not licensed yet and apparently once you start on a treatment it can’t be added ,my ALP has gone back to the normal range it was 1900 at one point ,had ct today but seems to be going in the right direction . I have the rash on my habds and finger nails lifting and my legs have a mind of their own at times ,and the nose dry and bloody 
.I’m halfway thru taxol and herceptin will carry on ,oh finger ends numb and tingly ,I go thru phases but I think at the moment its getting thru the side effects etc and trying to function as normally as poss ,pleased you’ve got started and let us know how you feel with it xx
Hi geordiex. This is only my first treatment of DOcetaxel Herceptin and perjeta and Se are ok at the moment but also have the dry bloody nose ( but I am sure that may change further down the line). Good news everything is going in the right direction thats just the news you need. I will also carry on with the Herceptin and the Perjeta after chemo, hope it works at well for me as it has for alot of other ladies on here. Let me know how you are getting onor if you just want to chat abouy things message me. Take care
xx
Hi Geordiex,
I have not had a secondary diagnosis, but my primary was stage 3a triple negative so I was put on the AC-T regime. I am currently on weekly Taxol (Paclitaxel). I have had 9 of 12, and am having similar symptoms to you. In fact I’m sitting here with a tissue stuffed up my nose because I picked it (again), and made it bleed (again!!)
What I normally do, is use a nasal hydrating gel spray, which loosens all the scab and crud, and after a while I can clear my nose relatively gently by blowing it, and it doesn’t make it bleed!! (well not so much, anyway). And I also use Vaseline to try to moisten the bits I can reach, using a cotton bud, cos that seems to last longer than the gel spray, especially at night.
I also had a rash, I think was after the second dose, on my face and hands. I wondered if it was a Sun reaction, so bought some factor 60 Sun block. Yesterday I developed another itchy rash, but just on part of the back of my right hand, and a small bit on my left big toe!, so I don’t think the sun has anything to do with it this time.
I’ve got some numb, tingly sensations in my heels, and some of my toes, but not really my hands. Some of my nails are really sore, and look inflamed, red and warm. I can’t believe how often I bash my fingernails in every day life!! They are also misshapen, and tending to lift at the tips, so I cut them really short. I know they advise you to use bandaids to protect them from catching if they need that. 
I find I am a little off balance at times. Sometimes when I’m walking one of my legs seems to suddenly turn into a piece of cooked spaghetti, and momentarily feels like it gives way. I also get periods of shooting pains in my legs or back. Very random, and momentary, but enough to make me gasp when it happens.
Since last week my tummy has been really quite upset. A week ago I had a low grade fever, so this week my treatment has been cancelled, and they are checking me for infection.
It’s not much fun, is it. I’m torn between relief at having a week off, and frustration because I only had 3 to go!
Sigh.
hi I use the salt nasal spray which does help and vaseline or aloe vera gel ,the legs are a law unto themselves and are a bit swollen ,nails 3 taped up and back of hands rashy does seem to be worse when sunny ,so some sunscreen as you say ,I have 8 more weekly to go out of 15 ,my first dose of docetaxel counts as 3 so equivalent to 18 in total, and yes I hope I have as much success as some of the other ladies on here 
oh and have started dandelion tea for the water retention.