Breast Cancer Now Forum

Interesting to hear the different approaches. I think it is criminal that this treatment is not available to everyone who could benefit from it. I was told by the Onc (who is very frustrated that it is not routinely funded) that it costs £4 a dose - so the £600 you were quoted, LGC Middlesex, seems excessively high. I would talk to your GP about funding options as it is an invest to save treatment - ie investing the money now potentially ensures no high treatment costs later. It's effective use of resources and therefore a no brainier for the NHS.   Is Breast Cancer Care or another organisation campaigning about making Bisphosphonates universally available on the NHS already? I would love to support this.  ... View more

Hello everyone   hope you are all doing ok. I have just three more weekly doses to go and suddenly the end feels very near. I can't wait to finish chemo but am not yet in the right mindset to go back to work in five weeks time. Hoping this will change over the next  few weeks. Hoping also to fit radiotherapy and Herceptin injections around work but suspect this might be too big an ask. I have had such long waits for both bloods and treatment over the last few weeks I can't imagine anything going to plan.    I have been pondering the concept of getting back to normal and wondering if it is ever possible. Ideally I'd like to make a big life change and make the most of every minute but, with children in critical years at school/college, we have to bide our time and stay put for now. So instead I am drooling over exciting holiday ideas, sadly most of which are unaffordable. Ah well, I can dream!   How are you going to mark the end of treatment?      ... View more

Hi SueRos   thought I would share my choices too.   Diagnosed in April, requiring MX and ANC. Surgeon advised my best option was immediate recon with DIEP and referred me to tertiary hospital. Saw new breast surgeon who advised the same and referred me to Plastic Surgeon. She was lovely but didn't hold back on all the risks, including writing me a long letter spelling them out. I was then listed for the op........ and the days ticked by. I was desperate to get on with treatment and anxious about any delay in recovery from surgery delaying chemo plus my darling son was in the middle of his GCSEs and could do without his mum having major surgery and a long spell in hospital right in the middle of them.   I looked at other options - the skin sparing mastectomy with saline bag did not appeal as I didn't like the idea of it going behind and stretching my pectoral muscle permanently for no long term benefit as I would still be having the DIEP. The implant and mesh wasn't an option as I am older (and droopy!) and an E cup on other side.  So I opted for just the MX - I was out in 24 hours and full healed with full movement within the month and I started chemo 5weeks after surgery.     I have no regrets about my decision as it was right for me at the time BUT I am so fed up with being treated I cannot imagine I will ever find the time or inclination to voluntarily go back for recon for purely cosmetic reasons. So at the moment I think I will live with my uniboob but guess my views may change as the memories of hospital appts fade!    all the the best to you.  X ... View more

Cross posted with you Dianabrew  - sounds like you have been through the mill. Hope tomorrow goes well for us both x ... View more

Heading out for Paclitaxol 5 tomorrow morning - and then I'll be on the home straight with just 4 more to go. Am feeling a lot more tired this week, with bouts of queasiness so just hoping my bloods are ok after having fought off the infections that have plagued me this week. Really don't want any delays to treatment as I hope to get back to work before end of Nov and ideally have radiotherapy before Christmas if possible.    My dad took me out to a wonderful classical concert tonight and I wore my wig for the first time and rather enjoyed it. Funny thing was Dad didn't even notice it! I have been sporting an array of hats/easy tie scarves to date as the wig tickles me and my family laugh every time I try it on. They say they prefer me bald or hatted but guess that's what they are used to. Got a friends 50th party on Saturday night so might just try it again but not sure it'll last through the dancing - though guess I might not either! Not far to stagger home to bed thank goodness!      ... View more

Thanks everyone for your kind words and tips. Pleased to say that my poor skin is slowly recovering and my cold receding - so impressed that my chemo battered body can still heal itself! Feeling more tired than before but am very pleased to report that I have rediscovered the art of sleeping in so am giving my teenagers competition!    I spoke to the BCN today and she was shocked and assured me that I was given the wrong pack in clinic last week - I should have been Moving Forward not Secondary BC. She said she would tell the Dr and remind all registrars to ensure they give the right packs. We also had a good chat about my Herceptin jabs which, if all goes to plan, I should be able to have at home at the end of the day on a Friday, thereby not affecting work.    Onward in the interminable fray.      ... View more

Hi Popkit   i noticed your query about the effects of ANC on nerves. I had full ANC with my MX and was told it was highly likely that nerves will be damaged as it is pretty impossible to avoid. I realised straight after the op that mine were damaged because I had highly sensitive skin down the back of my upper arm. It was so sensitive it was painful when touched so I avoided touching it. This is the WRONG thing to do - I read that rubbing it, touching it, tapping it helped the nerves settle and when I did this it soon subsided. I now have slight numbness and altered sensation in the skin from my armpit to the elbow, just down the back of my arm. As for me it is just the skin nerves I can still feel touch, such as putting on roll on deo, as the tissue receptors are still intact. It does not affect me in any way at all, thankfully.    All the the best with your op x ... View more

Love the nose drip catcher Belle! Definitely need one of them! Am on oral antihistamine but not tried any creams so will look into that. Was prescribed a spray on  barrier to prevent clothes rubbing but when I read that this was basically adhesive I decided against using it. Scared to try anything that might aggravate it further. Funnily the dressings I had after my MX only caused a tiny bit of irritation and they were very near these latest - maybe my skin is more sensitive after chemo? Idea of having tests before any further surgery is a really good one - IF I ever choose to go under the knife again!    Sue personally I don't think it is appropriate for anyone with primary breast cancer to be given a big resource  pack about secondary BC without any discussion at all. Yes it is a bridge too many folk have to cross but there is a time and a place for learning about it - and for me it is certainly not now!  I am assuming I was given the wrong pack as a mistake but will ask BCN to be sure.  ... View more

Rollercoaster it certainly is. A horrid one at that!    the Reasearch was interesting, thanks Pookie - would be good to find out about more recent research to see if there is anything more comprehensive. I guess the dosage we are receiving on a weekly rather than 3 weekly basis must have come from this evidence. Wonder if the addition of Vitamin E has been through a bigger trial (worth it anyway?) and what the evidence for mitts and socks is. So far my feet and hands are ok but I have five doses to go.    Moan alert!! My week is not going well because - my Elastoplast allergy has extended to all the dressings tried on my Hickman site. I now have square angry itchy red welts on my chest and am having to go dressing free. So having to be extra careful as have no sterile covering on the entry site and stitch.  - I have a cold. No nose hair is extra bad when you have a cold. Hoping my body has enough oomph to fight it off. - I saw one of the Onc team docs on Weds and          - braved up to asking her about my prediction score, which I have avoided asking so far. I really didn't like what I found out.         - she gave me a resource pack to take away, which I assumed was a Moving Forward pack. I have just opened it and found it is not. It is a Secondary Breast Cancer pack. I am so upset. I want to assume she just picked up the wrong one but what if she didn't? How can I find out? The hospital I go to is so big and impersonal (I have never seen the same person twice, ever). I will phone the Onc secretaries and ask but not sure what this will do. Will also remind them that I have asked for a copy if all letters. Will also make contact with BCN at surgical site.  - my eyesight has suddenly gone and I have had to start wearing my sewing glasses for all reading, including typing this. Might seem like a small thing but this had upset me too. Feels like another step to old age. Does chemo affect your eyesight too?   I am so tired and fed up and bored of the endless round of treatment/sickness/appointments/worry. I hate the impact it is having on me and the family. It feels interminable and the future so uncertain.   sorry for being so pathetic. Hope to get my mojo back soon. X ... View more

Morning everyone! Am about to set off for Paclitaxol 4 plus Herceptin and Pertuzumab. Pookie do ask about the cold mits and socks - I have these every time as I, like you, am petrified of any possible peripheral neuropathy. They process is a right palaver as you need to have them changed every 30 mins or so as they warm up and I feel like I am causing a lot of hassle for the staff. Am sure they don't mind it but just getting anyone's attention can be really difficult, even with the buzzer. Not sure what good they do as sometimes they are painfully cold and sometimes only moderately chilled - very busy unit so seems they don't always get refrozen for long enough. Not painting a good picture am I!? Still at least I feel like I am trying - and it is entertaining to try reading a book with the mitts on!  ... View more

Hi Alex i don't feel fit at all - before DD (Diagnosis Day) I was training to do a long mountain bike trail so am longing to get back to full fitness and get out there. For now I try to get some form of exercise everyday, though mostly it is just walking the dog. I copied this from a U.S. Cancer forum as it felt relevant for me "Run when you can, walk when you have to, crawl if you must; just never give up."    it is odd to be thinking about going back to work. While I think it will be good to get back to some kind of normality, when I was in the building I had a strong sense of it the being same old hassles/routine/great stuff and boring  stuff. I feel like I have changed so much and nothing in my life will ever be the same again and therefore it may be hard to slot back in. Needs must - I go down to halfpay on 30/11!!!    I think I am having radiotherapy too. Seeing the Onc on weds so expect confirmation then. Am borderline ER +ve (score of 4) so need a decision on that too. I want every single evidence based treatment possible as I want to live a long and healthy life! Might change my mind if Letrazole is complex to live with. Funny how I went on HRT four years ago due to 'intolerable' night sweats and now I just go with the flow, day and night, puce one minute and cold the next without stressing.    Onwards all! x   ... View more

Just popping in to add a thought re vein care. Having had 3xEC I have cording to my veins and was also finding the process of finding a vein for cannulation increasingly stressful. As I was moving onto weekly Paclitaxol (and therefore weekly bloods) I asked if I could have a PICC line. This was ordered by doc with no discussion and I went to have it fitted on Friday. As it happens my veins would not take the guide wire so I was fitted with a Hickman line instead. All the nurses I met expressed concern that ladies are referred so late and that they wished everyone was referred as a matter of routine before chemo starts, as is done in most western countries. I know it is not everyone's cup of tea but having a line is an option worth considering if your veins are suffering. I have to say that my experience of having treatment after the line was fitted was brilliant and I feel that I have made the right decision for me.  ... View more

Morning all. Sounds like everyone is doing well, despite the regimes we are all on. I asked for a PICC line as I was becoming increasingly stressed with the struggle to find a vein each week, plus I have cording along one vein from EC. The thought of going wibble for each of the 9 weekly bloods and cannulation for  Paclitaxol made me decide to ask. The doc just ordered it, no discussion at all so I read all about it, bought a waterproof cover and some skin coloured fabric to make myself a cover and psyched myself up. All to no avail as when I went to have it fitted on Friday they couldn't get it in. Two nurses and three attempts later they admitted defeat as my veins were very deep and not consistently wide enough to take the guide wire. Luckily I was well numbed up so, although unpleasant, all of the poking didn't hurt. The lovely matron took charge and offered me a Hickman line instead. I have to say I wasn't keen - living with a tube going into my arm for six weeks felt bad enough, but one going into my neck felt like a different level all together. The matron was lovely and gave me the time and details needed to make a decision. Interestingly everyone on the procedures unit said that they wished patients were referred much earlier and that having a line in from the start of chemo is routine in most western countries.    So so I now have a white tube protruding from my chest wall with stitches holding it in place at the entry site and in my neck where it ends after burrowing through the skin. Hopefully when the dressings are off it will tuck into my bra and hardly be visible (neckline permitting). Trying not to be too grossed out by it all and focussing on the fact that when I went for treatment afterwards it was brilliantly easy!  If anyone would like a natty little waterproof PICC line cover do let me know!    I am pleased to report that I am still feeling fine after Paclitaxol number 3. Had a great week last week including a 17 m cycle ride with my cousin one glorious day. Felt properly normal for first time in ages.    Also so had a meeting in work with my boss and HR, where we talked about a phased return when chemo is done, mid to late Nov. Better get on with all the jobs on my very long list as it will be here before I know it!  ... View more

Hi Sue   i have heard that the end of treatment is an extra emotional time - like you describe it gives space to reflect and think that you haven't had before. Bittersweet emotions, no doubt not helped by exhaustion and low reserves. It is good tho, to recognise this ordeal as life changing and get help facing it as required. A good cry is a wonderful thing. I will take a look at the thread, thanks.   All the the best to you as your recovery continues x     ... View more

Hi Alex i am having 9 Paclitaxol, one a week, plus every three weeks also having Herceptin and Pertuzumab. The Herceptin jabs will continue every three for another 9 months. Probably also having radiotherapy and, as am borderline on oestrogen, possibly 5/10 years on Letrozol  - so a long way to go. Hoping plan will be finalised at Clinic this week so I can brace myself. I hope to tolerate anything that could help me live healthily for 30 more years!   Made a decision to ask for a PICC line as I was getting increasingly wibble about all the need for needles, which isn't like me at all. With only a few decent veins in one side plus two damaged by EC I thought a PICC might help everyone. Poor staff have enough to deal with without me being in bits at each cannulation!  So having one fitted on Friday, in time for next treatment. Hope living with it isn't too tricky and I gave made the right choice.    Hope all are having a good weekend  ... View more

Hope the T goes ok for you all. I too read the June threads and was dreading it - then realised that they are mainly on a diff med to me. I'm on weekly Paclitaxol (also abbreviated to Taxol) which seems to be kinder. Had first last Friday and had no probs other than crazy insomnia on first night and a dicky tummy most of the week  - was SO pleased to have no nausea at all! Had second one today so am preparing to be awake a lot. Also have Immodium type meds to help my tummy.    I have been pondering a sense that I have of buried grief and un-resolved trauma. There is, naturally and appropriately, a focus on getting through the chemo at this stage but this will be over soon, hair will grow back and a sense of day to day normality should return once I settle back in work. But I have lost so much that is never going to return - my lovely boob, my lymph nodes (and with these a life long risk of lymphoma), being pretty carefree about my health, my confidence in my life plan and the feeling that I have time to accomplish everything I want to. BC brings a really traumatic time and great losses - I guess we just have to get on and deal with it best we can. For me they are buried in a 'black box under my bed' and I hope to find a way to deal with them over time. Guess it is a grieving process for everyone as life can never be the same.   Sorry for getting maudlin - must be a new SE!  ... View more

Hello Ram3   Can't answer your query, sorry, but just wanted to wish you well. I am on the same treatment as you now but I had ECx3 before. Two weeks after starting this I lost most of my hair but still have eyebrows and eyelashes. I am expecting to lose the rest with the weekly Paclitaxol, based on what I have read. Having no hair is hard but not as difficult, for me, as I imagined. I wear nothing at home and hats/scarves when I go out. I have a good wig but just don't like how hot and tickly it is.    All the the best with your treatment. ... View more

Thanks both. I have had a bit of welcome respite for the last 18 hours and it has spurred me to get it sorted more swiftly if it comes back. Yes - second of nine treatments today. Will see what the nurses recommend then get stocked up. Other than the tummy and feeling a bit tired I haven't had any other SEs this week - SO nice not to have the nausea! Hope your pains settle Judith63 - not nice. Onwards to the end. X ... View more