Breast Cancer Now Forum

my research nurse came and saw me today while having treatment (ex research nurse now I've been kicked off the trial) and got the onc I saw on Weds to come and talk to me again.  Told me to go and eat nice food and drink nice wine but probably avoid watersports!  Not a problem xxx ... View more

We're off to Croatia - Oncologist seemed to think it was fine to go but she wasn't my usual one and I'm not too sure how reassured she made me!  Might give the support line a call later to see if it calms me down.  Just had a lovely wedding anniversary card from my husband and has made me cry. ... View more

Thanks for this .. off on holiday tomorrow and petrified something is going to happen while we are away. Seizures seem to be very common ... freaking out! ... View more

I know - I have another scan coming up .. just trying to reassure myself it will work for ages yet before I have to change treatments! xx ... View more

to be honest .. with the effects of all the medication, I think it would be virtually impossible to do one on me anyway. A few ladies at my hospital have been sent for them and they can't understand it either! xxx ... View more

Hi Katherine - this must have been so hard to hear but I just wanted to say (along with all the other who have posted) that I know of loads of ladies that Cape has worked really well for (and for a very long time)!  Not even the experts can really know how you will respond but I can't bear that your onc has said this to you - a little bit of positivity goes a really long way and if you do well on the drugs who knows how long they can keep you stable. Never give up hope ... and as I always say if things go well on one drug and buy you that little bit of extra time then there is then more hope that by then someone else will have come up with something else to keep you going that little bit longer .. and so on and so on!  Have you been for a second opinion?  xxx ... View more

Hi - I am on Letrozole with zoladex injections and don't know if its working or not either. I was on tamoxifen with primaries but they don't think it worked for me (they did however take me off it early so I could try for children). I am also on herceptin and the perjeta trial so I'd like to think at least one of the damn drugs was doing its job!  They 'think' the last scan I had showed some progression but they weren't sure if some of it was due to the quality of the scan (brilliant)!. So being rescanned tomorrow ... I only finished chemo a few months ago so I'd like to think it hasn't all gone pear shaped already. This combination was supposed to keep me stable for years!  Good luck with your results!  xxx ... View more

Hi - I juice too (I have been using a nutribullet but they are a bit pricey). But there are also lots of naughty things in my diet aswell 🙂 and still way too much wine (must address this).  I would just say though if you are going to look into supplements etc then run them past your BCN or Onc first - I was sent a massive bag of Apricot Kernals by a friend and wasn't allowed to have them! I was also told to stop taking any supplements when I was diagnosed with primary (although my mum was told the opposite)!  You will  need to check nothing will interfere with the Perjeta trial unfortunately!  xx ... View more

Hi!  I don't think it helps that everyone's oncologists describes things differently to us. It sounds like I am having the same treatment as you but my original secondary diagnosis was liver, lung and bone. After my last scan, my onc told me that my lungs were 'clear' and that my bones 'had healed' but there is something 'almost unrecognisable' still in my liver after treatment?  When I spoke to him he said I would continue on herceptin and pertuzumab and that there are various things they can do once it stops working. The main things he mentioned to me were TDM1 and Cap. Then, I received my letter that goes to my GP and the treatment he chose to mention was an option to go on Letrozole and because of my ages combine it with Zoladex. He goes on to say that Zoladex compromises the life of young individuals and compromises skeletal health?  Great-  Am fairly sure that it was Zoladex injections I was given when I had treatment for my primary so what damage did that do?  I have been on Denosumab this time which he says will help and they always refer to it as 'the bone strengthener injection'.  Not sure any of that is helpful to you at all - I think I just talked about myself! If my research nurse said that I would be here for many years to come then I think I would throw my arms around her (then run ...quickly)!  It can only be a good thing and they always er on the side of caution I reckon so many years is many many many years and by then they will have come up with something else so many many many many years!  Good luck with your scan xx ... View more

Hello!   I took tamoxifen for about 3 and a half years when I was diagnosed with primary a few years back. I had horrendous hot sweats with it and had to carry a fan around with me permanently! My onc prescribed various tablets for me but nothing worked until they discovered a form of anti-depressants they had given to patients actually seemed to stop the side effects of tamoxifen. I can't remember what they were called now but they did indeed work (and then as soon as my periods came back I stopped taking them)!  Coming off them wasn't great (lots of tears for no apparent reason) but they dealt with the sweats!  Ask your onc about them - they should know what I mean! ... View more

Hello!   I am just about to have my 7th cycle of docetaxal, herceptin and perjeta. Everyone is different but the side effects for me haven't been too awful (have also been assured that the side effects I have had are from the docetaxal so when that bit is over it should all be so much easier to bear)!   I lost my hair pretty quickly but my eyelashes and eyebrows have held in there - a bit thinner but not awful!  I use Bare Minerals eyebrow powder  which I think is far more natural looking than using pencils. Have also been using Nettle and Zinc Scalp Cream which is lovely and soothng especially when you are wearing wigs alot!  My nails haven't been too bad either -  I have been using a nail strengthener all the way through so whether this has helped I don't know. I am on prescribed Vitamin D and Calcium tablets so this probably has more to do with it.  My skin was a bit dry to start off with but I just slapped some Liz Earle moisturiser on my face and it helped - I have also started eating alot of almonds which have a lot of good properties in them for skin!   I hope some of this helps - my hospital has 'Look Good Feel Better' sessions which I have heard offer good advice and tips. There might be something similar where you are?   Best of luck wth your treatment - hope its the miracle combination for you! ... View more

Hi Nicky,   My onc mentioned a new treatment at the end of last year and I think this must be it. My research nurse for the pertuzumab trial I am on also brought it up again yesterday as another way forward if the treatment I am on stops working - the more options the better I reckon!  They couldn't give me much information about it but I'd love to know if anyone knows anything more about it! ... View more

Hello!   I have to say I have coped pretty well with all the side effects this time around - whether I'm just listening to my body more and taking it a bit easier I don't know!  I'm certainly enjoying myself when I feel well enough thats for sure!  The oncolology team are so happy with how minimal the side effects have been they are giving me some another cycle after my sixth now (thought I was nearly finished but I guess its a good thing they can throw some more treatment at the little *******) and potentially will go up to 8. They have assured me that any of the side effects I have had have been related to the docetaxal and that the other treatments should not really affect me going forward.   I am seeing alot of people posting about their receptor status changing - I find that a bit scary in itself as you get used to a treatment plan, but I guess it also means it then opens up a whole load of other options for treating it all.  My research nurse was telling me yesterday that there is something else coming out this year for HER2 peeps so its good to know there are developments happening all the time that can help us!   Have you decided if you will opt for cold capping?  I don't know where you live but I have found the best wig place - honestly I have just been to pick up my second and it really is nicer than my own hair!    Apart from the hair loss, I felt a little sick on the last cycle but it passed really quickly and was probably my own fault as I haven't been taking the anti sickness tablets they give you because quite frankly I just haven't needed them!    I know everyone is different but I haven't even lost my eyebrows and eyelashes this time around albeit they are a little thinner and I have a few gaps.  My nails are all hanging on in there aswell and thats after 5 treatments!    I honestly believe that even a little positivity goes a long way - I hope your sons are a massive support for you. I feel so lucky to have my husband - he really has got me through ALOT!   Let me know how you get on and good luck with it all! xx ... View more

Hi Sarah,   I am 35 and have mets to the bone, liver and lung (diagnosed Oct 13 after initial breast cancer in 09). I also had FEC and radiotherapy and am strongly HER2 positive. I'm just about to head towards my 6th cycle of Docetaxal this time around, with Herception and Pertuzumab . Its so awful to have this in the first place let alone knowing it may have taken away any chance of having children especially after coming through it a first time and thinking you were getting back to being 'normal'.  I have been told that I will be put on another hormone treatment once the chemo finishes so I just assumed from the off that ended any thoughts of having children now. I feel so sad for myself (although probably more for my husband) but he would rather have me here with a good quality of life than the alternative. I never had the conversation with my onc as I hadn't considered if may be a possibility but I would be really interested to know if anyone has discussed this with their onc and knows any differently. There is still a big part of me that in just reading all the good posts on forums like these that sees a whole lot of hope out there! ... View more

Hi Jane,   Yes I will be going on a hormone treatment too - not sure which one though (kind of hope its not tamoxifen as didn't get on with it very well last time).   I tend to just pick up bugs (lots of colds and I had flu once with a very high temperature that I got into a lot of trouble for not taking myself to A&E for (I went neutropenic the first time I had Chemo and I didn't fancy the hospital experience again ... not really the right response)!. Aside from that alot of nosebleeds, hot flushes and as of today watery eyes, but not much sickness to report. I felt a bit nauseous after the last cycle but that was the first time since I started treatment. I don't seem to get many of the side effects they ask me about each appointment though so I don't think I can be doing that badly on it compared to most people!  I certainly remember feeling much worse the last time.   I hope you have an onc you like and is helpful - Its taken me a while to sift out the people I don't want to see but I feel I have a good team now although there is still a small part of me that is tempted to get a second opinion!    Waiting for any results is so hard - I hope its fabulous news!     ... View more