Breast Cancer Now Forum

Hi, Jaydun, I've had a similar experience to you.  I had docetaxol 4 years ago which was discontinued because of neutropenia and peripheral neuropathy .  It was very bad at the time, and was made worse by the hand foot syndrome skin peeling twice.  Fortunately I don't have much pain, only occasional, but have numbness and pins and needles, as well as cramp.  I've had falls though - down the stairs is quite common for me, and I ended up in A&E with a bang to the head when I tripped up a step.  Uneven surfaces are really problematic.  I  struggle picking up things with my hands, and fine motor skills have been really drastically diminished.  I saw my oncologist for a routine appointment this week, and mentioned the falls and clumsiness, apparently it is definitely PN.  She said there is no treatment, and as it has been 4 years it is unlikely that it will ever get better.  So flat shoes and holding on when I go down stairs and trying not to rush around so much is what's been suggested (not that I wore high heels any way).  Memory is a real problem and she said chemobrain definitely exists.  I write lists etc but it's so hard particularly when I'm really busy at work.   It would be good to know other people's work arounds and practical suggestions as well as  any alternative treatment such as acupuncture?   best wishes Alice  ... View more

hi tinfish petal and other ffab supportive ladies. i'm day7 from hospital bed puncuattion etc very bad. glad to see you are doing ok tinfish. i'm on the road to recovery. i kne it would be a big op but had some complications and taken back for 2 emegeny ops with lots of bleeding and a reacton to some meds and 2 transfusions. big antibiotic in my foot run iv. but turnred corner once bleeding stopped and spel iin itu. got up ysterday and walked - like bambi but not as cute from a 47 year old with matted hair and ddrains. hoping it is shower day for me today. had antiphospholipid syndrom - in my notees but not picked up and til they re-read them when i wwas too cold in recovery hmmm. but good lucl tinfish and other ladies longer into recovery allice xx ... View more

Sorry about muscling in again - thanks to everyone for the encouragement - I'm going for Diep Flap - 5 days notice - go in tomorrow, op on Thursday. Now or never really after a long wait. Seems tinfish and sue will be around the same time - good luck ladies, hope all goes well. Encouraging comments from the nurse today - well it will feel like you've been run over by a truck, but once you recover you'll never regret it 🙂 !!! Will post and or lurk once I can use both arms xxx Alice ... View more

Hi everyone, and good luck tinfish! apologies for the gate crash, have been waiting for the same op since Jan 2011, and they have just today given me a date - next Thursday! It's been really difficult and stressful period trying to get the hospital to give me a date - long waiting lists etc. I have a 7 year old, I work full-time, my husband is a teacher and works full time. How soon did people go out and about/anyone work from home. Surgeon was cross when I asked if possible during recovery period as he said you have to heal. I don't want to give up the appointment, as I expect it will be at least another 3-6 months before they can reschedule I know it will never be the right time but do you think it is do-able? Lots of love and sorry for crashing, feel very panicy Alice ... View more

Hi Ann I don't know what to expect from the operation, but I've been waiting for my dates for a diep delayed reconstruction since January 2011 - same hospital. I had my pre-op in June 2011, and still no date. Finding it really hard to get any information, but apparently they have very long waiting lists, and have been doing lots of immediate reconstruction, which seems to push all the delayed reconstruction ops further back. They now have extra resources to clear the lists, but even then they can't say when. Keep getting in touch with the hospital to find out though, otherwise you might find that you start putting things on hold without good reason. Good luck Ann Alice xxx ... View more

Hi Ann I don't know what to expect from the operation, but I've been waiting for my dates for a diep delayed reconstruction since January 2011 - same hospital. I had my pre-op in June 2011, and still no date. Finding it really hard to get any information, but apparently they have very long waiting lists, and have been doing lots of immediate reconstruction, which seems to push all the delayed reconstruction ops further back. They now have extra resources to clear the lists, but even then they can't say when. Keep getting in touch with the hospital to find out though, otherwise you might find that you start putting things on hold without good reason. Good luck Ann Alice xxx ... View more

Hi Claire, try not too worry I've been on zoladex to put me through the menopause, since October 2009. It's hard to tell whether the arimidex or zoladex or the menopause give the side effects - but they're not really bad. Going through the menopause so quickly is a very big shock - I was very emotional - think worse PMT days and times it by 3. But it is over quite quickly. My nurse at GP was more worried about the injection than I was. Not found it hurts really - over with very fast, and I've not used emla. best of luck alice xxx ... View more

Hi, I'm in the same position too! MX in April 2009, after loads of treatment - bad reaction to chemo wanted to get back to full health and finish herceptin first, before starting to plan for reconstruction. Saw PS a year ago, was told probably April this year, already had pre-op in June 2011 and went to support group arranged by the nurses at the hospital. Letter out of the blue last week saying that hopefully within next calendar year! Don't get me wrong, I count my blessings that I'm still here but very disappointed. They said that NICE guidelines have changed which is why more immediate recons are being done. I personally think someone has pulled some of the funding. To go from a few months wait to 18 months is a bit strange. The NICE guidelines changed in 2009, so unless it takes a really long time for them to be put in place I remain a bit suspicious. Couldn't have immediate recon because even with NICE guidelines, they wouldn't have done it because strong possibility of rads. Rads has meant can't have implants, so have to have DIEP. Not something to take lightly, but had finally thought I should do it now rather than regret it later. Bras falling apart, and wrong size because put through chemically induced menopause to take arimidex - thought no point buying new ones, but will have to now. I've been quite taken aback by how emotionally I've been feeling about this. All the best with the wait, and fingers crossed to you Pam. Alice xxx ... View more

Hi Katiebelu, are you in a trade union? if you are I would really recommend getting in touch with them to go through all your options. If not CAB or financial adviser. Moneymadeclear (google them), may possibly be able to help, but I'm not sure if they give generic rather than individual advice. Pension teams, or pension administrator should be able to talk you through your options, but are not able to give advice. They should be able to give you an estimate. For a quick estimate the following link might help http://www.lgps.org.uk/lge/core/ - not sure if this is for the whole of Great Britain, or just covers England. (or Local Government Pension Scheme site - just google and it is first one up). There are different arrangements for ill-health retirement to early retirement. For ill-health retirement an occupational health doctor would need to confirm that you are unable to work, even with adjustments, but it could be worth exploring. It's complicated now by having different levels of ill-health and different levels of ill-health retirement payments. For early retirement there is an additional cost to the employer to allow you to go early, and it is only from age 55 onwards. You need approval from your employer, in my experience, it is normally linked to a cost-cutting job reduction scheme (like voluntary severance). Hope this helps, and hope you're able to get some advice/answers soon. Love Alice xxx ... View more

Hi Mandy and all. I've been on zoladex and arimidex since november 2009. Hair regrowth since chemo very slow (and come back straight as oppposed to curly but that's another story) but put down to herceptin which finished July 2010. Have headaches, joint pain and stiffness. Terrible brain fog and no memory. Worse side effect picked up since the summer is high blood pressure. On second lot of medication as not yet under control. Hot flushes terrible, but would recommend chillow. Hard to work out what medication is causing what, as zoladex puts you through the menopause which causes its own problems. Might now have to have ovaries removed because of the high blood pressure with zoladex, but I'm in mid-40s so easier decision to take. Can they test to see if anything else is going on to cause hair loss? Sorry you're having such a rough time. Apologies for rambling on ..... Love Alice xxx ... View more

Hi Lisa, I've nearly got to 2 years! Have had two appointments with plastic surgeon, and have decided to go for reconstruction - with tummy tuck. Scary decision, and now just waiting for the date. Haven't the heart to tell work yet, as I was off for so long during my treatment because of all the complications. I'm in my mid 40s I don't want to look back when I'm in my 50s and think why didn't I do it earlier. I spoke to a friend of a friend who went through the same op with the same surgeon, and it was good to hear all about it. She said it's not an easy op, and recovery is a bit slow, but she's never regretted it. Surgeon hinted that because of new funding regime, there may be restrictions in future, at which point I burst into tears. It was on the day that there was an announcement about NHS cuts, and I haven't heard that reconstructions are under threat since then. Best of luck with whatever you decide. Alice xxx ... View more

Hi I was diagnosed just under 2 years ago. I was 45 at the time, and the chemotherapy stopped my periods initially. But I've been on zoladex since after radiotherapy at the end of 2009, which is when I went through a sudden and fairly intense early menopause. Since then most of the time I've been in a fog so I can relate to other posts on here. Can't work out if the arimidex or ongoing menopause type symptoms cause the hot flushes - fortunately since docetaxol my sweat glands have switched off so I tend to just roast. I do find a Chillow really helps at night though as particularly in the summer it is really unbearable. My skin is a mess, quickly moved onto anti-aging cream, and regularly got mistaken for my 4 year old daughter's grandmother! which never happened before. I've got a list book to write things down - as I was finding I kept losing lists! Lots of things go missing all the time, and then I find them in exactly the place I was looking. I read that the TUC is starting a campaign to get menopause more recognised in the workplace http://www.tuc.org.uk/workplace/tuc-19301-f0.cfm I run now, never did too much exercise before, but really worried about weight gain and it definitely helps. There is a website http://www.minniepauz.com/ which has lots of tips and sometimes funny cartoons. There are over 35 symptoms of menopause! One of the oncologists said in the early days before I was put on zoladex that apparently periods can come back really suddenly even after a year after treatment, and she said to always carry a tampon or something with you just in case. I agree though that there isn't much support out there for younger women. Feel like I'm well out of synch with all my friends. Glad you posted this. . Alice xxx ... View more

Hi Jane, sorry to hear your news. I was diagnosed in april and had a mastectomy (I'm now 45 too). I have a 4 year old daughter and 17 year old stepson. They were 3 and 16 at the time. I told them together a few days before I went into hospital. I told them I had a lump and had cancer, but the doctor was going to take it away. I got hold of a copy of Mummy's Lump from this site. It was really, really helpful for me and my daughter, as all of the things that happened to the Mum happened to me. It's a picture book, and it showed the mum with no hair after chemotherapy. Everyone's different, I knew that my children would really wonder what was going on and would hear or mis-hear phone calls, or hushed conversations. My daughter saw my scar very early on and is very accepting and curious. I told her nursery very early on, and they have been incredibly supportive and helpful, which made a real difference. Best wishes Alice x ... View more

On a similiar vein... I was in hospital in June with the first of many stays due to neutropenia. I had just had my hair cut short and my hair was just falling out after first FEC cycle. Ok so I wasn't looking my best. Mouth doctor (come to see why I had developed a swollen jaw along with everything else) looked over at my friend (same age - 44) and said in all honesty "is this your daughter"! After we recovered from the shock, we couldn't stop laughing - doctor practically ran out of the ward. Asked husband to bring in best photo from our wedding in 2008 to prop up on the bedside cabinet to remind me how I used to look. Keep them coming, such a fantastic thread. ... View more

Hi Jean, I had some night sweats with FEC, but Tax (last dose August) seems to have switched off all my sweat glands. Having said that I burn and roast at night so keep waking up. During FEC I slept on a towel which I had to change during the night when I had night sweats, but saved the bed! The hot flushes got worse with radiotherapy. Been on zoladex and arimidex for 5 weeks and "night roasting" has got worse. I bought a Chillow this week and can really recommend it, peace at last. Great for headaches too. Nutritionist recommended eating lots of tumeric during rads. Alice x ... View more

Thanks for the thread. I've ordered one from Amazon today. I haven't sweated at all since tax in August, but keep getting hot flushes during the day and too unbearably hot at night. Just started zoladex and arimidex a month ago, so that's probably the cause, as its been noticeably worse. What with waking up at least twice a night to go to the loo, and night heats and then shivers, I'm hoping that I might finally get some sleep. Can't wait until it arrives. No cats, but 4 year old will be very curious. Thanks everyone. Love Alice x ... View more

Hi my cancer was ER,PR+ (and HER +). After surgery, chemo and rads I was told that I would have tamoxifen as not started menopause yet (I'm 45). Before I had my daughter I had some late miscarriages and was diagnosed as having antiphospholipid syndrome which caused clotting in placenta. I've not had any other symptoms, and was only put on asprin and heparin during pregnancy. As a result I have a risk of blood clots (probably very slim), and onc didn't want to risk it. Didn't start tamoxifen, and like Sal have started zoladex monthly injections, arimidex and calcium/vit D. I didn't have to push for an alternative treatment and onc seemed to suggest that this is just as effective. Only 3 weeks in, and no real side effects yet - except become very crabby (but might not be a new thing!), and menstrual migraines have returned (absent during chemo) but hopefully they will be gone soon. Alice x ... View more

Hi everyone Carol - what a lovely thing for him to say made my eyes well up. I started arimadex about 2 weeks ago and having zoladex implants (as can't take tamoxifen because of blood clotting risk). Not put on weight yet, but feels really likely as will be put into fast-track menopause as well, luckily the battery has packed up on my scales. I quizzed onc about reasons for weight gain apparently it is partly water retention and it also increases your appetite. I've been walking, but really need to do some exercise. Quite hard to get started though after all the surgery and other treatment. Alice x ... View more