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