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Just dx with liver mets

57 REPLIES 57
Carolyn52
Member

Re: Just dx with liver mets

Hiya debs
Just thought I would mention you have replied to a very old post from 2013 so you might not get a reply !!
Xx
DebHummingbird
Member

Re: Just dx with liver mets

Hi Sarah,how are you getting on .I am a multiple liver mets lady too .xdeb
elliedog
Member

Re: Just dx with liver mets

Haven't posted on here for a while but would appreciate some advice. Just had no5. chemo,herceptin and perjeta. After feeling ok on previous chemos I'm now feeling tired and like its seeping into every area in my body. Before no.5 treatment I had the normal blood tests (white blood count, liver function etc) and they wer all normal. But I also noticed that the doc added additional blood tests (antigen, calcium etc) These results weren't back at my pre chemo review but were in my chemo file the next day. They all showed status as R and below 33. As I understand it these tests are an indication as to how treatment might be going at the moment and I am hoping that as the onc didn't ask to see me these results are a good indication. I was double whammy dx with very small liver met without a biopsy and never had any symptoms or felt unwell. Could anyone give me any advice about the blood tests.xx
elliedog
Member

Re: Just dx with liver mets

Thanks Jules. I've been out and feel a bit more together now. They did mention surgery when I was dx this year but said that they wanted to do the mixture i am on first before they thought about surgery. I suppose, or hoping that because it is small the chemo and other drugs will do the job. But I have read about RFA and it is something I will mention and bare in mind if the present mixture doesn't work. Thank you for posting I know everyone is going through their own ups and downs but still find time to talk to people like me having a panic moment. Thanks Angela
Julesie
Member

Re: Just dx with liver mets

Hi Angela
Sorry that you are having a bad day but good idea to come on here and have a moan! it's such a difficult disease to deal with emotionally and even when there is good news it's hard sometimes to stop those awful dark thoughts creeping in. One thought which may be worth mentioning to your oncologist is that if there is only one spot on your liver, radio frequency ablation may be an option to consider. Sadly it's not an option for me at the moment but from everything I read about it, it's minimally invasive and of course doesn't have all the debilitating side effects of chemotherapy. Hope the sun is making you feel a bit sunnier!
Jules
elliedog
Member

Re: Just dx with liver mets

Hi everyone.
Having a moany feeling sorry for myself day. Don't really know why, can't seem to put all the positive things back into my mind. I also feel like I am lacking information. Like the type of chemo I am on (docetaxal + pertuzumab and Herceptin) why this type (have small secondary to liver). Also because the rest of my body is clear including taken the primary tumour away can I reach NED, is it easier for them to control my cancer . My OH seems to think that they will be able to control and treat me and finding it early is good because they will watch me like a hawk and treat anything that comes up, if it comes up. I have even read that my situation if treated agressively has a better chance of staying away for a long time. I have also read that because it is contained to one area and is small it is even given a different name (olgametistic,bad spelling). These, I know are questions I should be aimimg at the onc who I am sure will answer them but when I go for my review they check my bloods, say my liver is functioning normally, ask about any SE to the treatment then I have an urge to just get out of there incase they deliver any bad news. I feel well at the moment and apart from no hair no one would know what I am dx with. I have never had any symtons from the liver and still don't and part of me hopes they have got it wrong because it took an MRI to show it up and each time I ask to see it they can never find it so I haven't seen it on my liver yet. I am so sorry for my moaning because I know that in a way I am luckly because they found it so early and I know that there are many ladies out there that continue to live for many many years with normal lifes and I know they don't always come on here because they are busy living (but part of me would love to hear more from them). I apologise for being so down beat but I am sure I will pick myself up and get on with it. I know there are lots of informative and positive ladies out there and I would love to hear from you. I promise my next posting will be more positive. Angela
elliedog
Member

Re: Just dx with liver mets

Hi Verity. Hope you don't mind me messaging you but just going over some of my old posts. Thought I would just see how you are getting on. Hope you are still doing well. I,ve just had my 3rd chemo with Pertuzumab and herceptin and seem to be doing really well with hardly any SEs. Got my first scan after the 6 chemos. I'm aiming for shrinkage or NED or I would even settle for no shrinkage and they tell me they don't think its cancer(thats my denial I sometimes get). Anyway I will leave you in peace but a big thankyou for your posts as they always make me feel better and show me I have got many years to come.Angela xxx
elliedog
Member

Re: Just dx with liver mets

Hi Linda. Glad you enjoyed Jersey Nights I would love to see it. I had a lovely time in Bath with OH even having no hair and wearing scarves(finding wearing wig difficult) and putting up with people looking at me out of the corner of their eye didn't bother me. Well done to your daughters for raising so much money. My sister and neice have done 2 Race For Life this year I said next year I will definatley do it them although so far I feel well and feel I could do it this year.Hope your cough gets better and you feel well. Let me know how your next chemo goes. Take care. Angela.
Guest user
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Re: Just dx with liver mets

Hi Angela,
Hope you have a great weekend in Bath and good that you have booked your holiday.
I am not getting my chemo on Monday as I am on antibiotics for a really bad cough so have to wait another week. Which has worked out well as my two daughters and two baby grandsons are doing the race for life in Aberdeen next Sunday so will be able to go and watch them. They have raised over £2,000 so very proud of them.
the New Jesrsey Nights was fantastic, really enjoyed it, if you get the chance you should go.
well will go just now and I hope you have done plenty of shopping, eating and drinking.
take care
Linda xxx
elliedog
Member

Re: Just dx with liver mets

Hi Dida. Lovely to hear from you. Sounds like your coping really well with the chemo. Know what you mean about the wig I decided to stay with scarves and bandanas. Im surprised how well I feel at the moment. My SE haven't really happened this time apart from a runny nose and half a day of rushing to the toilet, so one more week to go and its number 3 treatment. Hope you enjoy the theatre, Jersy Nights is a must see for me hopefully going with friends when we can. I'm of to Bath this weekend with OH, mother in law taking care of the kids,so really looking forward to time together. I also took the plunge and booked a holiday in the Lake District with the family, will still be on chemo but thought I could relax if needed to. Good luck with your next chemo. Take care.x
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Re: Just dx with liver mets

Hi Angela,
glad to hear you are getting through the treatment and I hope you had a nice weekend away.
i have onc appt on Friday then my fourth chemo on Monday, getting through it not to bad, got over sickness bug but now on penicillin for a really bad cough, my body aches.like you I lost my hair a week after 1st chemo, wearing bandanas all the time as wig to hot.
My two daughters are taking me to Aberdeen tomorrow for lunch then to the theatre to see Jersey Nights, all Frankie Valli music so looking forward to that if I can stop coughing lol.
You take care and I will speak to you after the first few days of chemo is over.
Linda x
elliedog
Member

Re: Just dx with liver mets

Hi Dida. Good to hear from you. Sounds like you are well into your treatment now sorry you caught a bug its the last thing we need on chemo. I've had my 2nd chemo Perjeta and Herceptin. So far lost my hair, felt like I had flu for 3 days, and had a horrible spotty rash over my face and chest (although2nd time round the Piriton has kept it at bay). But the rest of the time I have felt ok. We didn't manage to go away over half term the onc said it wouldn't be advisable which was right because they were the days I felt bad. But OH has booked a couple of nights away at the weekend (without the kids) which is hopefully the time when my innume system is coming back up and I feel better.
How often are you having your chemo, I have mine every 3 weeks. Glad your thinking of booking a holiday its good to have something to look forward to.
Hope your all recovered from your sickness bug, I get paranoid about catching bugs just don't want to delay my treatment. Your welcome to message me if you need to. Take care. Angela xxx
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Re: Just dx with liver mets

Hi Angela,
how are you, sorry I have not been on for a while. Good to here that you are coping better. Did you get your holiday? I am waiting till my chemo and radiotherapy is finished then hopefully my hubbie and I can get away. Finished my 3rd chemo two weeks ago but picked up a sickness bug last weekend that floored me for four days but feeling a lots better now. I have appt with mt onc on Friday then 4th chemo on the Monday. I have also started on Zometa every month as well to strengthen my bones. Hate having to see onc as you don,t know what they are going to throw at you.
you take care and will speak soon xxx
elliedog
Member

Re: Just dx with liver mets

Thanks horsie5050 and Sarah. Thought 6 months was a litte long but then your right Sarah I forgot about the bloods and the liver function, so I suppose if their going the right direction its a good indication. Thanks again for the reasurance ladies. Hope your both well. Take care of yourselves. Angela xx
horsie5050
Member

Re: Just dx with liver mets

Hi, I have liver mets. I havea CTscan every 3 months. This is done to check if I am responding to the treatment. The Onc will know if I am responding, and if not - change me onto a different type of treatment. Yes, I agrees 6 months is a long time to wait..... Good Luck.xx

SP0
Member

Re: Just dx with liver mets

Angela,
I had a liver CT scan after 4 cycles of chemo + herceptin. I had multiple liver mets though with largest one size of tangerine, so don't know if that influenced it.
Remember they'll also be taking bloods every cycle and doing a liver function check, so there will be other indicators of direction too.
Sarah
elliedog
Member

Re: Just dx with liver mets

Hi everyone. Went to my pre assessment yesterday before chemo today, all very postive. She examed me as I was a little worried about what I thought was a lump under my arm. However it had gone down but she gave me a full examination and said everything seemed fine and the rash I had was just appearing there and this can happen during chemo. She must have been right because it has now gone. I did ask when they would next scan me (thinking she would say half way through the chemo, 3 months) she however said when the chemo had finished which I was a little surprised about. because that will be 6 months. Is this normal becasuse 3 months seems a little long although part of me is a little relieved I havent got the pressure of waiting for results yet. I know what I have in he liver is small but I thought 3 months would normal. On a better note she seemed pleased with my side effects, weren't to bad. Also offered information about the Pertuzumab I am having, they are having excellent results so fingers crossed.x
elliedog
Member

Re: Just dx with liver mets

Lucky Gal. Thanks for your kind words. I have had a couple of days feeling down but not sure if that is the impact of the chemo and loosing my hair at the moment. Feeling better today after talking to OH he always has a sensible head on. I know I stand a good chance of getting this under control but getting emotions and thoughts under control is another matter.At the moment nothing is showing in the rest of my body and I was lucky enough to have my breast tumor and nodes taken away (if that makes a difference). So part of me feels that although I dont want to be in this position I am lucky it was found so early giving the treatment a chance to work. I do tend to come to the forum alot and look up the inspiring stories expecially "blondie" who is still going strong ten years on (I hope that can be the case for us all). I hope you are well and I really appreciate you posting me if I can be of any help or you like a chat please message me. Take care. Angela x
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Re: Just dx with liver mets

Hi Elliedog, I was just reading your thread here and just wanted to say that this forum has helped me enormously with the inspiring stories, help with treatment and just general good wishes and friendship. It's remarkable that so many women are surviving despite the odds and I think the more you fight it the better you feel. I was feeling lost and now I know I can come here and someone in a similar position will cheer me up and shake me out of the despair. Keep being positive even when you are feeling down. I wish you all the best xx
elliedog
Member

Re: Just dx with liver mets

Thanks Verity, Its nice to here from you. Ive been stuck in doors the last couple of days. On day 8 and 9 of chemo felt like I had flu coming plus had a horrible rash all over face and chest. Hospital say its a reaction to Herceptin and gave me antibotics but onc said at beginning that most reactions are due to chemo so who knows. I am feeling more positive that mainly due to the positive stories and comments I read on this site. Your right the liver spot is very small and there is a good chance the chemo can sapp it and the Herceptin and Pertuzumab can keep the cancer in check as it has for many ladies out there. I hope to be NED for many years as I have alot more living to do. How are you, your posts are always so positive its always lovely to hear from you.I hope your keeping well. You say your on Herceptin do you have any side effects. They told me I will have to go every three weeks for my Herceptin and Pertuzumab forever or as long as it keeps working. I have read lots of stories and posts about Herceptin and people really do think its a miracle drug.I have heard one lady say that in America after 8 years some ladies are being taken of it because the cancer has been NED for so long (not sure I would want to take that risk if it was working though).So your so right there really is lost of options out there for us and I believe that my onc could be right in that we treat this more like a chronic disease and there are more and more treatments comimg through as time goes on. My friends onc said these are exciting times in treatment of cancer because they really think they are at a turning point in th treatment of cancer and that there will be millions of people walking around living normal lives but under treatment. Well haven,t I just gone on and on you can tell I haven't been out for a couple of days. Anyway I will go and let you get on with your weekend. Have a lovely weekend looks like the weather will be improving. Would be nice to hear from you again if you want to message me that would be lovely.
Angela xxx
VerityC
Member

Re: Just dx with liver mets

Hi Ellidog,

I haven't checked in here for a while. so it is good to see your post. Sorry to hear about the spots but great to hear that you are feeling more positive and, apart from spots, are feeling reasonably well.
Continued good luck for a great outcome. Your liver spot is very small so I do think you have lots to look forward to!!! lovely to hear your news.

VXX

elliedog
Member

Re: Just dx with liver mets

Hi Sarah
I have tried to message you but not sure if it is getting through or if I am doing it correctly. I have started my treatment which has been ok except for horrible teenage acne on my face. The hospital said its probably a reaction to the herceptin and given me antibotics. But it looks horrible which is a shame because otherwise I feel ok although I did have a down day on day 5 but I expected that to happen.Thanks to yourself and many others on this site i am beginning to cope better with my situation. I can see that there are many treatments open to me and that I may even be one of the lucky ones and be able to take Herceptin long term there are many many ladies out there living long term with the help of these drugs and more treatments are continuing to come on the market.So i am looking at life after chemo (and teenage spots). So onwards and upwards, its half term and raining so thinking of what to do with the boys without having to venture to far.Yesterday the boys went biking while me and the OH walked around Cannock, it was lovely,except conscious of face.So again thankyou for all your positve words it has made a big difference to me and hopefully the chemo will shrink or kill of that horrible spot in my liver to.
Angela xxx
SP0
Member

Re: Just dx with liver mets

Hello Angela,

I guess you've had your first treatments now. I recommend taking all the anti-sickness medication they give you. You'll get used to the immune injections after a while, it's ok after you've done it the first time.

In answer to your earlier question, I had Docetaxol + Carboplatin chemo, with Herceptin alongside. The Pertuzumab was unfortunately when I started Dec 13 but the other's are right, Herceptin's raved about even on it's own.

I'm oestrogen and progesterone positive, as well as HER2+. If you'd like to get in touch, feel free to send me a message. Hope you feel well enough for your half term break.

Sarah
elliedog
Member

Re: Just dx with liver mets

Hi Verity
Thanks for the encouraging post again I am sure I will get used to the wig and I suppose its not for ever. I do keep thinking of the 10 year Herceptin lady and I know there are many more out there. I went to see the onc today and was told that the spot on my liver is so small you can only just see it, less that 1cm, and that I have many options open to me. Although they believe it is cancer they cant be sure until chemo is finished or do a biopsy which would be difficult to do because of the size. She also said that if I hadnt been on the trials they would never of found it so early (think thats lucky). I am starting chemo on Monday and on Tuesday they will give me the Pertuzumab and Herceptin, after that I will have them all together on one day for my 2nd chemo etc. They were raving about the Pertuzemab and I am the first to be given it since it has been recently licienced in this country.They also said there are plenty of options open to me including surgery but that will be discussed after chemo if needed, they also said they have no reason to believe it had spread anywhere else as the scans werent showing anything. They said I was treatable and the fact it is so small makes a difference. Heres crossing all fingers and toes and hope my angel or mum are looking down on me taking care of me.
Take good care of yourself.
Angela xxx
VerityC
Member

Re: Just dx with liver mets

Hi,
Yes, I am sure you are on a rocky road at the moment. Since I had my diagnosis four of my friends have had their own diagnoses of breast cancer...Horrid, horrid!! It is so hard to watch them struggle with emotions that come in large part from the fear of the unknown, and I really feel for ladies (and gents) on here when they are waiting. It is true what so many people say, that the waiting in a sense is the hardest part. It is amazing what the spirit and the body can cope with, when it is actually DOING it - rather than contemplating it.
You have a great range of treatment options Elliedog. I know it isn't always easy, far from it, but try to approach this as a task to be addressed and come through and think of that lady who has been on Herceptin for 10 years that you were told about. Add to that that my oncologist has some ladies who were in the original trials in the late 1990s who are still going strong.. I still have to tell myself that occasionally when I get jittery!!
As for the wig, I felt the same at first but I got used to it quite quickly and ended up loving it. So did my friends. For me if was infinitely better than seeing myself with no hair.Once my hair started fallling out, on th emorning of the second chemo, I had it all cut off and wore the wig. I found the handfuls of hair falling out to be more distressing than a head with a wig on it. Felt odd at first, but not for long.
So, by all means contact me if you think I might be able to help. Happy to hear from you, of course.
Best wishes,
Verity
xx

elliedog
Member

Re: Just dx with liver mets

Hi Penny
Next Wednesday doesnt seem long now part of me wants to get on with it other part is dreading it. But I agree lets hope it has terrific results.xx
Penny47
Member

Re: Just dx with liver mets

Angela will be thinking of you next Wed as I start my own chemo-different cocktail, hopefully same terrific results!
elliedog
Member

Re: Just dx with liver mets

Hi Verity
Thankyou so so much for your post it really helps on days like this when the weather is horrible the kids are at school and OH is at work so left to me own thoughts. I have my review meeting tommorrow with the onc before I start my chemo next week and I will asking him about the radio frequency ablation. They have aready mentioned that they will possible operate as the spot is only pea sized if they can access it as I understand it can be difficult to reach all parts of the liver. I am considering myself lucky that I have access to the Pertuzumab and Herceptin drug as my understanding is they work very well together and my onc has had involvment with the trials in America. My nurse has said that the Pertuzumab is being raved about at the moment. She also said that she has a lady that has been on Herceptin only for 10 years and is still healthy and well. So I do have lots of hope but I know I will have my down times. I think with chemo looming it will naturally make me feel a little down because it is the fear of the unknown and also all those people that didnt know will when I loose my hair and I get those looks of pitty which I hate. I will beat this it is only small and better it caught now than a year down the line when it would of been much bigger. I am sure my angel is taking care of me (think that might be my mum who died last year, not cancer just old age) I just have to put the hard work in now to make sure I win. Sure I will have questions tommorrow after my onc app hope you dont mind if I come back on and ask questions. Thank you so much again it is good to hear from someone with similar dx doing so well. I am sitting here with my wig on been told to practice putting it on and wearing it still not sure it is for me though just keep getting pictures in my mind of those men that combed their hair over in the 70s ( dont no why but thats how the wig makes me feel). Feeling more up beat now thank again and may you and all the other ladies have many many years of NED.
Angela xx
VerityC
Member

Re: Just dx with liver mets

Hi Elliedog,
Sorry that you are going through this but please take heart. I was diagnosed with breast cancer and mets in the liver - 3 of them, the biggest 5cm by 4cm getting on for two years ago. I am ER and PR negative, but HER 2 positive. I had chemo - 4 x AC then 4 x Taxol and started Herceptin at the same time as the Taxol. The tumours shrunk considerably and then I had mastectomy, followed by Radio Frequency Ablation of the liver. I have been NED (No evidence of Disease) for almost 15 months!! I will be on Herceptin forever,now had 30 odd treatments, I think, but I am alive and well and hope that will continue for many years. I understand there is a good chance that it will.
Pertuzumab trials have shown it to work fantastically with Herceptin, and I think H itself does great things SO PLEASE, please allow yourself and your family to start to believe that you will be around and enjoying life for some time to come yet. It is possible. I remember being SO terrified that I would be leaving my family prematurely, but I am more relaxed now. Still get nervous when I go for scans, but it is getting easier.
Wishing you all the very best. If you have any questions by all means send me a private message and I will help if I can.
Btw, radio frequency ablation is basically the inserting in the liver of a heated probe which fries the tumours - or does it microwave them? Not sure - but either way it is a heat source which destroys the tumours. Mine was done under general anaesthetic. The liver can regenerate itself. Once my tumours had shrunk, this procedure was possible for me.

Good luck - the very best of luck!
Verity x

elliedog
Member

Re: Just dx with liver mets

Hi Linda. Hope your feeling a little easier about things today although I know how hard that is. I have a app with the onc on Thursday just to go over treatment again although the nurse told me over the phone. I start my chemo nxt Wednesday and Thursday.On the wednesday I get the first chemo and then on the Thursday they do the Pertuzmad and Herceptin. They had to apply for funding for the pertuzmad apparently it is new to the market.I will continue to recieve the Herceptin and Pertuzmad after the chemo every 3 weeks for as long as my body takes to it ( crossing all fingers because the onc raves about these drugs). Also nurse said the met on the liver is extremely small which cant be a bad thing ( hope the chemo zaps it) . My mets werent picked up by the ct scan and they werent concerned but sent me for an MRI because I was going on a trial, which in a way I am glad they did otherwise I would never of known it was there until I started getting symtoms which I dont have .I live in Newcastle under Lyme (nxt to stoke on Trent). Although my treatment is nxt week we were suppose to be holidaying in Scotland the week after so going to speak to my onc to see if it is still ok. I hope so I love Scotland and could really do with some quality family time at the moment. Please keep in contact it is good to speak to someone going through the same recent events. Lots of hugs Angela xx
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Re: Just dx with liver mets

Hi Angela
thank you for getting back to me, it really helps to talk to someone who knows what you are going through. What I would do without my husband and daughters I do not know but like you say we just have to keep fighting. My onc has her case meeting tomorrow so will hopefully find out more by the end of the week. The deposits were not picked up by my bone scan but it was the CT scan that found them and luckily they ar very small. I have to go onto a drip once a month and will get it with my next chemo in three weeks. I think the drug begins with a Z.

I hope everything goes well for you, what part of the uk are you, I am getting treated in Aberdeen.please keep in touch and let me know how you are getting on, take care .
linda xxx
elliedog
Member

Re: Just dx with liver mets

Hi Linda
I am sorry they have given you this news now , not sure how much more they can throw at us. I have a feeling of dread every time I go close to the hospital. Me and my OH went for lunch today and we managed to feel normal for a while. We even discessed our holiday for when chemo and rads are finished which I know in the back of my mind I will be going on but then I get this sense of dread creep in saying how many more holidays will I have. I am lucky they caught it so small so I have every chance of controlling it but I still feel let down by my body. But I hope we all prove to cancer we can control it and when were all 70+ with can give a smile. Im sure the chemo will blast your small depoits and you will be able notch one up against cancer. My onc looks at this as not curable but treatable with more and more drugs coming onto the market to treat it, I have to believe he knows what hes talking about.
Take good care
Angelaxxx
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Re: Just dx with liver mets

Hi Angela, I also got told I had very small deposits on my spine and hips on Friday. Like you I was in shock and did not ask any questions. I thought I was just getting my bloods taken as I had my second chemo today, so I did not take may husband with me. Absolutely devasted but I will try to remain positive.
I hope you get on well with your treatment and keep going, taker care.
Linda x
elliedog
Member

Re: Just dx with liver mets

Hi I understand that feeling of panic when looking at the kids never thought this could happen always thought I would here to help look after their kids. Could still happen so many things coming out to help us through this. My eldest just been asking questions found them difficult to answer wanted to know how long I would live. Told him the drugs will do their job but I will have to be on them for the rest of my life. Not sure I am ready to give him the whole truth yet. All my fingers and toes are crossed for next week with your scans, wished this could get easier. Lots of hugs xx
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Re: Just dx with liver mets

Hi I'm also 43, I had fec-t chemo first time round, lost my hair. I was just getting used to it being short and curly, even had it restyled a couple of days after my secondary dx as everyone had said it would be fine, only for it to start falling out the day after the hairdressers, blooming waste of £35....I'm currently on carboplatin and gemzar chemo, apparently it is extremely rare to lose hair on this one, but as I have found out I'm obviously very special. I'm also triple negative, so can only have chemo 😞
i do have days where I just think I can't be bothered and what's the point...then I just have to look at my kids. When I first found out I couldnt bare to even look at them as I felt an over welming panic, but as I said with the docs help and counsellor it is getting easier. Hopefully with some good news next week on the scan results (fingers crossed) it will get a little easier again.
elliedog
Member

Re: Just dx with liver mets

Hi Chatty Katty
I am 43 years with a 14 and 9 year old and I to am praying I get them to adult hood and beyond would be a bonus.I am trying to look at this at the moment as a chronic disease and that I am treatable somehow that is managing to get me through at the moment.You mentioned that you have lost your hair again is that because of further chemo or effects from other drugs. I dread the scans even now, think I will be even worse as time goes on. I will be thinking of you.
Angela xx
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Re: Just dx with liver mets

Hi elliedog,
just thought I'd pop by to say good luck with your treatment. I was dx with primarily last march 2012, had mx, chemo & rads, thought I had managed to get through it. Unfortunately rads finished November and I was dx with secondaries to liver and lungs march 2013, literally 2 days off a year. As everyone has said on hear it does hit you like a truck, I have good days and bad. I was told I wouldn't loose my hair again, but unfortunately I have so that obviously knocks you down again. I eventually decided to seek help from my doctor with sleeping tablets and antidepressants (which I am normally dead against) but they have helped. Also now having counselling, which again I thought would be a waste of time, but now finding it helps. It's quite nice to get all my worries out in the open with the counsellor without upsetting my family and friends. As the sessions go I am finding it easier to talk to loved ones without fearithe doom and gloom.
i have a 12 and 3 year old so I am praying to god that he just gives me enough time to see them both reach adulthood, so I know I have managed to do my job properly.
im currently due a ct scan this wed, which I am dreading and the results next tues, keeping everything crossed that the bugger is going in e right direction.
anyway good luck to everyone who is either starting, finishing, waiting for treatment or results. Xx
elliedog
Member

Re: Just dx with liver mets

Hi Sarah
Thanks for posting me. Spoke to my nurse today and they have recieved the funding for a drug called Pertuzumab as you said and will be giving it along side the Herceptin. She also said that it is a new drug but is proving to give very good results along side the Herceptin. The trials department at my hospital has had some involvement with the trials in America. I cant cold cap at my hospital because my onc doesnt agree with it so will have to go bold for a while. I have got my dates for my first chemo which start next week unfortunately we were due to go to Scotland the following week so I am debating weather to go or not. My nurse said I would probably have to be trained to inject myself with the inume injections but she said we can discuss it with the onc on Thursday. I might just go a little later so at least we can have a few days away.
The fact that yours mets have shrunk so much does give me comfort I know it is possible to get things under control. Are you recieving smiliar treatment after chemo. My nurse said that the Herceptin and the Pertuzmab give few SE but they will need to monitor my heart. Hope you stay well and it would be lovely to hear from you again.
Angela xx
SP0
Member

Re: Just dx with liver mets

Hello Angela,

It seems to be quite difficult to be sure whether marks are cancerous tumours or not, from looking at the scans. My liver & lung mets were only confirmed when they had clearly shrunk from chemo + herceptin treatment.

It sounds like the funding might be for pertuzumab (perjeta), which is very positive. Its a new drug, given alongside herceptin, which improves results.
I was diagnosed with mets at the same time as my primary bc end Nov. After 5 months of treatment, the mets are virtually undetectable on the CT scan. The largest one in the liver was the size of a tangerine at the start.

I hope this will help give you comfort during the unpleasantry of chemo. Incidentally, I did cold cap & kept most of my hair. Nails are brittle & splitting, but still on!

Good luck, Sarah.x
elliedog
Member

Re: Just dx with liver mets

Thanks Esha
It is certainly something to consider. I was so numb at the appointment I didnt think to ask the right questions. I know I have to have the chemo so I will hopefully be able to speak to my usaul onc soon. He was originally the one that was confident from looking at my ct scan and ultrasound that it didnt show the patterns of cancer but because I was entering into a trial I had to have an MRI. The consultant performimg the ultrasound was also confident it wasnt related to my BC. So far 3 consultants have said it wasnt related to my BC however the MRI is saying different.Hopefully I will find out a little more tommorrow. Thanks for posting Esha. xx
Esha_Ness
Member

Re: Just dx with liver mets

Hi Angela
Just dipping in to the forum..
You can always ask for a second opinion. All patients are entitled to this and the Consultants are well used to it. There are alot of women on these forums who have had second opinions. I had a second opinion and it certainly reassured me that I was getting the right treatment.
Esha

elliedog
Member

Re: Just dx with liver mets

Thanks Alex and Belinda for posting back to me. I am a little settled today maybe I am coming to terms with it or maybe I am in denial either way I dont feel so anxious. Belinda I have read Blondies posts and she truely gives me hope I hope I can react as well to the Herceptin as she has, but first I have to get through my first chemo and rads. Alex they havent suggested a biopsy I think they want to take a look at it during or after the chemo then discuss options they mentioned possible surgery but thats only if a surgeon will do it as I understand areas of the liver can be difficult to get to. In the mean time I am just going to try and get on with things and take any treatment there is to offer, enjoy being with my family and friends and as you said try and be kind to myself. My usual onc will be back of holiday soon and I feel I have more trust in him as he talks to me like a human being and not just the next patient in line.Thank you for taking the time to respond to me and for passing on your kind thoughts and valued information. I hope you dont mind me posting you in the future.
Angela xx
belinda
Member

Re: Just dx with liver mets

Hi Angela, I'm sorry to read your news. I have been living with mets for ten years now. As far as I know I don't have liver mets but there's a thread from Blondie in the Secondaries, inspiring news and stories section you might find useful and helpful right now. Blondie has liver and bone mets and is a long time with Herceptin lady. I'll bump the thread up for you. Be kind to yourself, it's such a shock to get your head around the diagnosis at first but you will find a new 'normal' and there will come a time when you wake up and it's the usual 'life' stuff that you think about before any thoughts of breast cancer.
xx
Guest user
Not applicable

Re: Just dx with liver mets

Hi Angela,
They don't know for sure that it is not cancer in my liver as they have never done a biopsy. The reason that they think it is probably not cancer is because throughout my treatment it has never changed whereas the bone mets shrank in response to the treatment.
Hope this clarifys it for you.
Good luck with your treatment.
Alex.
elliedog
Member

Re: Just dx with liver mets

thanks Penny. Will still be dipping in and out with the moonbeams hope your treatment goes well.xx
Penny47
Member

Re: Just dx with liver mets

Good luck tomorrow Angela. Thinking of you and your "light spot". All the best.
elliedog
Member

Re: Just dx with liver mets

Hi Alex
I hope you dont mind me asking but how did they know that what was in your liver was probably not cancer. I thought that before that information was given out they would have to be sure they were dealing with cancer. Thanks for posting back to me it certainly helps to think that once treatment is settled I will be able to return to work and be as close to normal as I can. I think that is what is driving me mad is the continuous thinking about it. Last night I went to a rugby presentation and although most people know about my BC they treated me normal and for a while I managed to forget and just enjoyed the moment. I hope in time that I will have more of these moments. Your right about this forum not sure if I would of coped at all without it. Thanks again for posting.
Angela xx
elliedog
Member

Re: Just dx with liver mets

Hi Morwenna
Thanks for posting me again. I was due to start my treatment tomorrow and I am still keeping that appointment but am unsure what they are going to do ie discuss treatment further, pre assessment or even start the chemo so I am prepared for all three. The onc said that the MRI had showed a spot the size of pea that shone like cancer so when I asked if that was secondaries he said that it was. The nurse said that they were shocked when they read it that morning from the report sent back from the scan. The onc didnt even know that I was HER2 + he had to check. He said that I would continue with the chemo but I would also recieve a drug that they had to apply for funding for but I couldnt begin the chemo until they had the funding because part of the critiera was I hadnt had chemo before. After chemo I would have rads and then Herceptin indefinately every three weeks. They the funding only take a couple of days to come through so they still plan to start my treatment nxt week. I think I will ask more questions tomorrow now that I have got over the shock but I do find that if you dont ask then they dont offer the information. I will also ask about the removal of my breast and ovaries but I suppose it makes sense to wait until treatment is over there is only so much our bodies can take.Hope your treatment is going well and have seen you on various threads giving welcoming support which I know to me is appreciated.
Angela xxx
Morwenna
Member

Re: Just dx with liver mets

I believe ovaries are only implicated if your cancer is hormone positive, and I can't remember your pathology.

Did the onc actually say the nodule was definitely a metastasis? Do you have a copy of your report? It sounds like you haven't yet had your treatment mapped out for you? so maybe you will have the chance to have a proper discussion with your usual oncologist.

It's my belief they normally examine and report on everywhere that looks like there is anything suspicious on the CT, ie brain, lungs, liver, kidneys, spinal column. If you get a copy you can read it for yourself, and go over the details with your oncologist.

I think if its a question of ovaries or unaffected breast being removed this is normally done after all the other active treatments are completed.
elliedog
Member

Re: Just dx with liver mets

Thanks Poemsgalore Alex and Valia
I am sort of getting my head around the fact that I was lucky that it has been found early which will hopefully give the chemo and other drugs a better chance of blasting it and keeping it at bay. I am also taking inspiration from people that seem to quote years rather than months of near normal healthy life. Being HER2 + also makes me think that there are plenty of other options out there and hopefully as time goes on more options will appear for us all. I intend to be around for many years yet and believe that it was found early so that can happen. Chemo however is starting to scare me a little as this will be my first time.I have been reading various threads about ladiies that have had their overies removed or their other breast removed as a prevention. Is there any benifit in this not sure weather to ask my usual onc (when he is back of holiday) if this would or could be done. Would appreciate your opinion. One last question the onc that delivered the news to me about the pea size on my liver had not seen my results and was reading them of a report ( all previous scan indicatied it has a hemangiomas not cancer). My usual onc always made a point of looking at the results himself he also believed it was hemangiomas. I suppose what I am saying is that although he said the pea size had shone like cancer I found him to be vague and very matter of fact almostas if he was just filling in for my onc and it didnt really matter. I feel you have to trust your doctor and I have to say I didnt feel I did trust him. He said the scans showing no other signs of cancer anywhere else but if I dont trust him should I ask my usual onc to check this? I suppose I just want to make sure I get the correct treatment because I have no symptoms I have no idea if it could be anywhere else.Anyway I am rambling now so I will leave you ladies in peace. Thanks again for your posts its good to know someone is listening to me out there,
Angela xxx