Breast Cancer Now Forum

Hi  give    insurancewith    a go.  I found them best on price and you can do the whole medical stuff online.   and they asked sensible medical questions unlike other insurance companies.  They realise the difference between 'active"  treatment eg chemo etc   and ongoing preventative drugs like Letrozole, hormone treatment.  Good luck   btw   insurancewith was started by a lady with bc  who got fed up with the whole palava of getting travel ins.   ... View more

PS    looking at the list of ingredients , they all look the same,  so no easy answers.  Wishe there was, I 'm so fed up and getting really depressed feeling so sick , no appetite all the time, and rarely going out now, cant go out alone most days.   ... View more

Hello Claire   I've been on Letrozole for over 3 years so started on Femara ,then the generics were universally used by NHS.  Sadly I didnt pay much attention to the brands I was given, stupid me, as was getting much worse joint (hip esp) pains after the Femara was stopped. For some time nausea has been creeping in, and loss of appetite, but it crept up on me so slowly , I was putting it down to all sorts of things.  in last week or 2 it has really hit me badly, some days cant move out of the chair for fear of passing out (but I never have, just feel like it) and feel so sick (but never actually sick)  that I cant eat anything or even drink sometimes.   GP has done lots of tests but beginning to think its the Letrozole, too scared to stop taking it,   but have a little stock of it and some is a different brand,  I think but not sure ,  it didnt give me the nausea.  Nausea far worse in mornings , and I take the Letrozole at night, so it fits. So wish I'd kept a record of brands of Letrozile I was taking and how I was feeling .  List of ingredients seem the same for Ranbaxy and also MYLAN.   Which pharmacy (in UK?) do you get yours from ?  Mine says he cant specify brand - an office further up must do the ordering. Thanks    Chris  ... View more

Hello Milo 1 I'd be very interested to know which brand you were on , and the one you have changed to. My prescription keeps being made up with different brands and with the last change I've developed very bad stiffness. A few months ago I was feeling so good , now like i'm 100 years old. Have been on Letrozole for 3 years now. Thanks ... View more

Rest in Peace Miao - from all in SomersetCanDo and the ladies on this Forum - we each have memories of happy times with you and are so glad to have known you. Chris ... View more

Vitamin D and Calcium in blood - Great to hear some GPs are doing this - I too think it should be routine , I asked a nurse for this when having blood taken for something else, said I'd have to ask Dr for that request - didnt feel I could take a whole GP appt for that - feel he's fed up with me as it is !!! Would gladly pay for these if there was an easy, RELIABLE , way to get these. Wish we could contact GPs by email, dont like the telephone appts - its not private, my end that is. Seeing onc team for annual follow up appt. in 2 weeks , so will tackle them - so friendly and approachable, if they request it , GP will have to do something ! It should have been requested in the letter to GP about my diag of osteoporosis. This should be routine, will get onto Osteoporosis Society, anyone else get blood Vit D and Ca levels checked ? Thanks , Kirsty ... View more

Hi Jeannie MAMMOS - in England the norm seems annual mammograms after bc, for , I think its 5 years, then less frequently , but not sure about after 5 years. Definitely its annually for a while after "trouble". Would be interesting to challenge it - but I guess Scotland has its own guidelines they follow ? not the English NHS ? Thres a lot of controversy about mammos anyhow, but thinking about it simply, I think it does give us reasons to relax and get on with life - when hear that NED report. Good Luck. ... View more

Hello Interesting thread - seems research on Letrozole (Femara) is ongoing and we could be taking it for life !! but if keeps the dreaded cancer cells at bay ... Agree with Sandra , stretching before moving out of bed or chair really helps, and just read that sitting too much of the day vastly increases risk of soem disease (think it was cardio vascular) - so as always , more exercise, even low level stuff is really good. At start of Letrozole treatment I had a DEXA , which showed some osteoporosis and osteopenia, I didnt fancy the drug that was suggested as already had problem with acid reflux, asked for Protelos (Strontium Ranelate) - and surprise surprise got it from GP , no trouble. have to take every day but its part of my routine now, and no side effects. Nervously waiting for result from 2nd DXA , 18 months later, I think for us, DXAs every 18 months - 2 years is the norm, while on Letrozole. As already on meds , dont know what they will suggest if my bones are thinning rapidly. I'm hooked on Letrozole ! feel safe on it. BONES - its not just calcium you need - its Vitamin D to enable body to absorb the calcium - complicated subject, need other things too but a reasonable diet will probably see to that. Thing is they prescribe a combined tablet - like Calceos (Calcium with Vit D) - now some info leaflets say take Ca on empty stomach, but you need to take Vit D with some food as its only dispersible in fat !!! Our specialist nurse warned about taking too much Calcium and said most diets OK for Ca - so get some Vit D only tablets - but NHS will not prescribe these !!! I'm fed up with all these complications. Good Luck with it all. Kirsty ... View more

The other meet up is a lunch and tour around the PENNY BROHN CANCER CARE centre at Ham Green just outside Bristol. Its easy to find, well signposted. A small group are going there this Friday , March 16th for a quick tour around house and garden and lunch. meeting there at 12 noon for that, in reception - there are no courses on that day , the garden volunteers will be there and some staff, and our group who are called SOMERSET CANDO. but we will be in reception. We do need to book numbers so please message me on here . If you would like to meet for coffee before hand we will be at Brackenwood Garden centre at 10.30. Unless no one wants to do that, some are coming from Taunton, in that case I dont want to sit on my own for an hour , so please let me know , thanks. Lunch will be £4.50 - lots of colourful healthy salads and a fratata. This is from the Somerset Cando group - We've been meaning to descend en masse to to the Penny Brohn Centre for a while. Our Chris Derrick is a volunteer gardener there and has arranged a light lunch, so let's make an afternoon of it. A chance to get down with your spiritual side, walk through the gardens, soak up the vibe, get together again and smile. If you misbehave or if it rains you might have to join in a meditation led by Tanya (who has been practising meditation for 25 years and loves it). Anyone who lives nearby or who is an early-bird can join Chris here ( a mile away) at 10.30am http://www.brackenwood-plantandgardencentre.com/hazelstearoom.html. A chance to eat naughty food before putting on a halo in the Penny Brohn dining room. If you can't get to the pre-meet coffee, then come to the PB for noon for pre-lunch hugs and hellos. This isn't a full-on PB experience but rather a chance to get together somewhere nice. There will be info about PB facilities, courses and treatments and a shop to stock up on your organic soap, liver tonic and other delights. And they had some rather nice jewellery when I was last there. More info here: http://www.pennybrohncancercare.org/. It's a nice opportunity for ladies from all over to get together and meet each other. Look forward to seeing friends again and meeting newbies. Sure nobody will object to the odd accompanying child or two. 🙂 Questions to Chris. ... View more

2 events in North Somerset coming up. First is on Wednesday evening - its a TALK ABOUT PENNY BROHN CANCER CARE cetnre (we are so lucky to have this near us) , the talk is in the Churchill Unit at Weston general hospital , organised by a small group of ladies who have all had BC, they call themselves Pink Fellowship, and do some fund raising for BC at the hosp and have interesting evenings, talks etc a raffle, it costs £1 for the evening incl a raffle prize, they also make dog biscuits, £1 a box - different ! The talk on Wed is by a volunteer speaker from Penny Brohn - we will find out what they do , how a massive new grant will be spent etc etc latest on complementary care . Hope some of you can come, all welcome - to just this or come again too . Its quite a nice room , not too hospitally. Talk on Penny Brohn Cancer Care at the Pink Fellowship group . Wednesday, March 14, 2012 7:30pm until about 9:00pm Churchill Unit at Weston General Hospital, signed from main reception. Penny Brohn has a website - http://www.pennybrohncancercare.org/ ... View more

Hi Just got an excellent quote from Virgin travel insurance, giving all my pre existing med conditions. the quote is a more than half that from insurancewith and others recommended here. Help - hope its OK - waiting for papers to arrive to check the small print. Virgin seem very cheap for healthy people too - for hubbies high BP and on 1 BP tablet they said , no extra for that !!! others lumped on £20 for it. Will post when checked out more. anyone else tried Virgin ? Kirsty ... View more

Hi I've another concern - recently discovered its common practice to put metallic clips in during BC surgery (to aid later radiotherapy) - Will these show on any scanner at airports ? maybe they are too small ? so many women who have these must have passed through the scanners I guess they wont cause a problem. Would like someone to verify this though. I asked my BCN but she hasnt heard anything about this. Thanks. ... View more

Hello Slightly different story - Dx Jan 2010, grade 1 , tubular, had Letrozole for 4 months to shrink to minimise surgery necessary, WLE with SNB, original dx confirmed, clear margins, but with 2 out of 6 nodes positive so needed chemo (which they had been hopeful would be avoided) as well as rads and 5 years of Letrozole. Although there was something in the nodes I was not advised to have a full clearance. All things considered, it was thought the chemo and rads would deal would anything in other nodes. and they also said 'cos I am small (stature not boobs, well yes small boobs too !) I might not even have any more nodes !! they had taken out the sentinel ones and then the next level , 4 of them. those 4 were clear. I'm well past menopause and tumour was very ER postive so thats why I'm on Letrozole. I was worried about not having the full clearance at the time, but it seems to be the latest thinking if other factors lean towards that. At least it has lessened risk of lympho. Hope you all have minimal SE of ongoing drugs. lowering the oestrogen seems to be causing SE as time goes on - itchy skin, stiffness of joints, dry eyes. But these are minor niggles in the scheme of things. ... View more

Hello You may like to look at this and print off and show your Drs. its your body and life. At the same time they are or should be , the experts. but my gut feeling is that sometimes hospitals are slow to change their treatment regimes in the light of new evidence - hence the postcode lottery. here is the reference - http://jama.ama-assn.org/content/305/6/569.abstract this is the conclusion from that paper -" Conclusion Among patients with limited SLN metastatic breast cancer treated with breast conservation and systemic therapy, the use of SLND alone compared with ALND did not result in inferior survival." But it does say these patients had T1 or T2 tumours - so small tumours that had not spread much. The type of cancer and grade etc is really important in treatment plan, mine was Grade 1 and tubular , so should have been slow growing and I was advised against a full clearance (had 2 sentinel nodes positive but next 4 were clear), but strongly advised to have chemo and rads which I did. Good luck with your decision making. Do ask all you want to - of the Drs, and Breast Care Nurse and also phone BCC helpline, to help you decide what to do. Best Wishes. ... View more

HAIR - someone asked about hair - Sandra? - I've been using the Aussie products (in Morrisons) for a few months since it grew back ( did only go thin, but very very thin, virtually bald on top) - the conditioner is especially good I think, difficult to know as I've used it continuously , but my hair is thicker (dare I say - too thick !!) and healthier than I've known it for years. its also very curly which I dont like, but so glad to have hair almost dont care what it looks like, well yes i do but dont want to be ungrateful ! It just doest feel like me , having curly hair. ... View more

Hi This joint pain is very odd. so variable between people and it comes and goes for individuals too. Too Femara for 4 month beginning of last year, didnt have any SE at all. restarted in Nov and the joint pains kicked in over Christmas, and were getting worse , getting a bit panicky, but these last couple of weeks, a huge change - not so bad. but then had a fuzzy head sort of headache for a week and that still comes and goes . aaagh , always something. Also getting very dry eyes when fall asleep - try not to in the day ! am using eye drops from Boots, before bed which help. but most mornings cant one eye for a little while, the eye lid is really stuck , scary. In the scheme of things , not too much to worry about, getting shorter and osteoporosis more of a worry. All stemming from wretched C . Please let us know how your joint pains go, hope they diminish as , touch wood, mine have . Kirtsy ... View more