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September Sizzlers

Jill1998
Community Champion

Re: September Sizzlers

Hi E,glad rads are going ok for you so far.I only really started noticing my hair last week after 7 weeks on Tamoxifen ,doc thinks could be impact of stress and treatment ,but I'm not that convinced.Going for haircut next week so I will see what my hairdresser thinks.
Jill1998
Community Champion

Re: September Sizzlers

That's really interesting re the stats on meds Marcella,I'm not really surprised people don't tell their docs ,there is a subtle pressure to tow the line isn't there,50% is a lot wonder how that impacts on research funding re efficacy if the drugs?
Eiljones
Member

Re: September Sizzlers

Hi Cesrabbit and everyone

I've done my 6th radiotherapy session today and all is going ok.  All the radiographers are very young but they are really caring and look after me very well. I live near Manchester and I have not been able to find a pharmacy that stocks Accord.  My daughter is a pharmacy technician and she tried to get me Accord but couldn't. I have been on anastrozole for 6 weeks and started on Accord and now have got Teva.  I did feel very achey last week but have back and neck problems anyway and so cannot really say whether it is the meds or not. It is probably just stress.I thought that my hair had gone very dry and have been paranoid about every hair that has fallen out but my hairdresser has given it a good cut today and she says that it is fine and I must say that it does look a lot better for a decent cut.

I really want to stick it out on anastrozole but I am really worried about the long term side effects but I will also be scared to stop taking it. Although my doctor said that I could always try a different med if need be. Are there any more ladies out there taking anastrozole?

I will sign on here every day as It will be good to share experiences with other ladies in the same position as me. Speak to you all again soon. 

familytree
Member

Re: September Sizzlers

That's interesting mf.. be good to know what she recommends as an alternative. Big percentages there x
mf
Member

Re: September Sizzlers

Hi Cesrabbit. I had young student radiographer in amongst older ones. You had a long wait for rads. Good luck. Jill: I spoke to the ex-onc nurse today re meds. She said 50% of women come off meds because of side effects (official figures say 25% but not everyone tells their doc). She's sending me some info on an alternative which is out of patent and not prescribed in hospitals. Recent study shows it's v effective. Side effect is raised endorphins, which would be a nice change! I'll let you know what it is when I get the info (have to wait to be paid first so I can pay for the consultation). I thought I'd spend less being off sick but am more overdrawn than usual. Have been referred to occupational therapist at work.
familytree
Member

Re: September Sizzlers

X all young in rads for me too and like you thought I would move just because I'm told not to. Nervous tic. It got better. I counted from the beep and that occupied me. Usually got up to 90 and done. Good luck x Lorna
familytree
Member

Re: September Sizzlers

I had same trouble with accord but now my Dr stipulates it and pharmacy do a special order. Not pratting about with different makes. Great you're feeling so much better Christine. Yea! X
tweeks123
Member

Re: September Sizzlers

Hi Cesrabbit
I was the same trying to find accord brand I tried five chemist and it was boots who deals with accord up north where I live not sure id all the same boots..have you teied boots ?.. different brands had different SE with me but not every one thw same ..good luxk with your rads and yes was all really young when I had my rads . Take care x
christine x
Jill1998
Community Champion

Re: September Sizzlers

Hi C ,glad you finally got started,I had a succession of male student radiographers for my rads,thankfully it was usually a woman who had the job of moving my boob into right position!How many are you having?
Jill1998
Community Champion

Re: September Sizzlers

It's weird but I feel scared taking the tablets but scared not too!!!I think I may give it a month off, then try again see what impact it has then,if it's for 10 yrs I need to be sure I can live with the side effects and the other possible complications in exchange for the small gain.I am looking at all the other things I can do to try and make some gains in other respects ,to some degree though this is a bit if a lottery.
Cesrabbit
Member

Re: September Sizzlers

Hi. Started rads today. All very interesting. Very young team - can't remember the last time I had my breast fondled 21 year old guy (Therapy Radiologist just out of Uni!). Anyway, after a 13 week wait, it was a relief. I'm really good at lying still when relaxing etc...but when asked not to move I keep thinking I'm going develop some nervous tic!
I started Anastrozole by Accord a month ago and no side effects (yet) but I can't get a repeat of Accord anywhere. It's all TEVA. Anyone in the Midlands/Warwickshire area know if any pharmacy stocking Accord brand?
tweeks123
Member

Re: September Sizzlers

I would have a couple od weeks off jill see if u feel any difference and see if your hair feels better ..when I tried just a week off I felt loads better I knew it was definitely tje tablets..then tried a lover dose and after 4/5 waa back to square one its shocking what they do to you the SE.. some people are very lucky not having SE.... but im definitely feeling good again now ..just trying to be healthy do my best.i havnt enjoyed not one of my days off work its been avery strange 6 months ..be glad when this year is over Xx
Jill1998
Community Champion

Re: September Sizzlers

They all have similar side effects, I think some people are obviously more susceptible than others.I can't take Letrozole cos Im not post menopause.Im going to discuss at my next appointment,not sure what to do in the meantime,wait and see if I go more baldy or stop for a month and see what happens.
familytree
Member

Re: September Sizzlers

I've decided to go back on 5th Oct slow return too...enough is enough, I've been off since April and while I needed the time and space I feel like I'm becoming a recluse and anti social. Lol x Jill could you not swap pills see if you're better on different ones? X
Jill1998
Community Champion

Re: September Sizzlers

Yes ,I know what you mean about getting back to the real world Christine, feels like life has kind of been put on pause for last few months.I have 3 weeks left on my sick note now and thinking I will go back very gradually after that .Lorna I'm on Tamoxifen.
tweeks123
Member

Re: September Sizzlers

Hey Laidies ive spoke to work today on phone in going I to the office tomorrow discussing when to go back to work still cant get my shoe on and dont think health n safety will let me work I. Flip flops..but hoping to get back in the next two weeks sick note runs out on 1st october I just want to get back into society and the real world been off since midd April now ..looking forward to going back. Feels a little strange the thought of it but will pro. Feel better once I get back into the swing of things ..hope your all ok lookkng forward to our meet up Xx
familytree
Member

Re: September Sizzlers

Jill have you had letrozoole or are you too young for it? Sorry if you've already said. I get mixed up with who's doing what in here! Lol x
Jill1998
Community Champion

Re: September Sizzlers

I had allergy testing done a few years ago Sharon it was really helpful,did Stone Age diet too ,to identify foods that affected me.
Jill1998
Community Champion

Re: September Sizzlers

Glad you are feeling a bit better Marcella,yes even though the doc didn't think the hair loss was Tamoxifen it is listed as a common side effect(1 in 10) and I have spoken to people on here who have lost a lot of hair on it too.Toss of a coin do I stop for a month and see what happens with hair or press on and see what happens?Im also a bit bothered by the risk of cataracts and womb cancer ,is my gain sufficient to risk these things?Not easy is it.
mf
Member

Re: September Sizzlers

Morning. Thanks for support yesterday. Feeling better today. The oncologist telling me things are different now made me angry enough to want to get my life back. People with cancer do triathlons so I think a half-hour walk a few times a week is not too much to expect! The physio who runs the pink ribbon classes suggested going to the GP when my lymph nodes are swollen, so maybe that's an option for you too Jennifed. I forgot to ask re Tamoxifen, Jill! And by the way a colleague had a lot of hair loss when she was on Tamoxifen. She came off it because of SEs. Hope you all have a good day and some decent weather.
Sharnie
Member

Re: September Sizzlers

Hi all! Glad you had a nice holiday Tweasel. Hope your skin is better soon Jill. Sorry to hear about your hair loss, it may well be stress related - stress can do so much to our bodies. I was shocked at the news of Jackie Collins too, used to read her books - good holiday reading. It really brings home how serious this disease is.

 

I'm feeling much better after I stopped the Tamoxifen. I have been taking Letrozole for a week and so far so good, just had a few hot flushes and some lower leg cramps but am otherwise ok. I've been back to hospital today for skin patch test. I had a bad reaction to make up last December but cancer got in the way of having this done. I have 41 substances taped to my back so don't know how I'm going to get to sleep tonight! my mum said I look like a Dalek! Hope I will get some answers, it involves another two appointments at the hospital this week - I just can't keep away ha, ha! now.

 

I know how you are all feeling once treatment ends its just like being left in limbo. It does get easier as each week passes. I don't think there are any moving forward courses near me either. I'm just trying to keep busy and gradually getting my fitness back, but I'm still not sleeping well. I think going back to work helps too. I'm just working a couple of days a week at the moment as I'm still getting tired. Chatting on here keeps me going. It's been miserable weather here today too, I shut the curtains and lit some nice scented candles so am feeling more cosy now! Just need some good shows on TV to keep me occupied! 

 

 

Aura
Member

Re: September Sizzlers

Hi ladies , i know jackie Collins death was a shock but I think it's more because we can realate to it more than some one who's not had breast cancer , Jill hope the antibiotics sort your boob out . Plus glad you some of you are managing to go away , haven't been away myself but have booked a big family holiday for next June nice to have something to look forward too. My local hospice offeres complimentary thearapys and counselling so I'm going to go along this week to see what's on offer . 2 of my friends who have also had breast cancer went and said it really helped them also Christine had her acupuncture there and advised me to go .
Take care Julie x
Jill1998
Community Champion

Re: September Sizzlers

P.S get the machine out!!!Would you like me to send Alex James with something nice for your tea???
Jill1998
Community Champion

Re: September Sizzlers

Marcella maybe you needed a good cry.You might not have the same side effects you never know, if you do you can't live like that can you.Did you ask about Tamoxifen?
Jennifed
Member

Re: September Sizzlers

Mf- I get soreness in my armpits, neck and groin when I exercise. I've been worried about it so glad to hear someone else has experienced it.
Jennifed
Member

Re: September Sizzlers

Nice to hear that you had a good holiday and you sound as though you are feeling good too. I see the oncologist next week and hope for some kind of sign- off then. I'm in limbo at the moment.
mf
Member

Re: September Sizzlers

Glad you had a good holiday, Tweasel. Sorry re the infection, Jill. I just saw onc. Switched me to Anastrazole but said I might get same awful SEs as on Letrozole. I told him I was concerned re swollen, sore lymph nodes in neck, armpits and groin after exercise but said they weren't swollen now as had done nothing. He examined me and said he "wasn't convinced" I had swollen lymph nodes, that it might be muscular. I asked whether I should exercise through the pain and he said no, do less. I said I can't do much less and I'm used to lots of exercise. "Things are different now," he said. Too bloody right. Went home and had row with 17-y-old then cried and was told I'm too emotional - first time I've cried since diagnosis. Oh, and my next appointment with onc is in a year!
familytree
Member

Re: September Sizzlers

No I bet it's not. Big hug x
Jill1998
Community Champion

Re: September Sizzlers

It appears to still be falling out in places but there is growth at hairline, all good fun NOT!!!!
familytree
Member

Re: September Sizzlers

Thanks Jill will look into it. If you already have signs of new hair growth whilst taking pills then it may be stress related? I would have thought if it was side effect it would continue to thin and not regrow? Hope it sorts itself out x x
Jill1998
Community Champion

Re: September Sizzlers

Glad you have had a lovey holiday Tweasel.
Jill1998
Community Champion

Re: September Sizzlers

Jennifer anything in the news re cancer or in particular breast cancer is difficult to look at for me too,I am going to have to hibernate for next month and so will you I think ,it's breast cancer awareness month.it will be everywhere .Are you on anti depressants , if so have they helped?
familytree
Member

Re: September Sizzlers

Sounds lovely. Off to visit friends in Oxford this weekend myself. And the sun is peeping through! X
Jill1998
Community Champion

Re: September Sizzlers

Lorna, if you want to way up the pros and cons of things my acupuncturist recommend the Canceractive website she said she found they had a very balanced evidence based approach to all the issues.Sorry you are still feeling low.Just got back from seeing lovely female doc re state of boob and hair.I have an infection which is why boob is so bad ,if no improvement in 24 hrs may have to have "more direct approach " thinks she means a drip eek!!!She was sceptical about hair loss due to Tamoxifen she said may be more likely due to the stress of diagnosis and treatment and pointed out that I have some new hair growth around my hairline so it may be possible that other factors have caused hair to grow weak and fall out and that it will recover.So now a dilemma do I carry on with Tamoxifen and see if hair continues to fall out or stop ,have a break from it see if hair recovers than give it another go?
Tweasel
Member

Re: NKS aNNARe: September Sizzlers

Hello ladies. I'm just back after 2 weeks in lovely Devon. Had a great time - long walks on the beach with the dog every day, naps every afternoon and way too many cream teas 🙂 I've had no problems following rads, just a very minor itchy rash. Had my follow up appointment earlier today and nothing to be concerned about. Hope all you lovely ladies are well xx

familytree
Member

NKS aNNARe: September Sizzlers

Thanks Anna but there doesn't seem to be anywhere coming up for my area.. the nearest is saying Liverpool which is not an option. Jill hope you're feeling better, it's rubbish the side effects you are having, no wonder you are looking for alternitives. Touch wood I don't seem to be too bad on that front unless the depressing side is due to Letrozole?! I am sick of looking into alternitives, it is such a minefield.. one minute asprin, coffee, bla bla bla then you find something saying something different! I think the obvious things are a healthy diet (with treats!) excersise and weight control. There are so many variations, healthy people getting it etc. There is no sense to why we get it and how to keep it at bay. x

 

mf
Member

Re: September Sizzlers

Hi Jennifed. Yes, it's a jolt to the stomach reading about Jackie Collins - especially the fact she hardly told anyone. The one that hit me most was the death of Rio Ferdinand's wife as it was around the time I was diagnosed. A rainy autumn is not conducive to positive thoughts!
Jennifed
Member

Re: September Sizzlers

I've tried signing on to a moving on course but they are all full and I can't find one until February! That's too late - I need some help now. The news yesterday of Jackie Collins' death from breast cancer was a real downer for me. Saw her on loose women a couple of weeks ago and thought see looked unwell. I'm on a narrow boat at the moment with my husband and it's pouring down. Too much time to fill with negative thinking and feats about the future - or lack of it. Anyone else knocked sideways by the Jackie Collins news or am I just in a bad way today? Thinking of you all. X
Anna_BCC
Member

Re: September Sizzlers

Hi everyone

 

I noticed that some of you mention about feeling unsupported after treatment has finished.  Breast Cancer Care have created a service called Moving Forward which aims to continue where active treatment ends. Do please take a look and see if there are any planned services near to where you live.  If you have any questions about the service please do contact movingforward@breastcancercare.org.uk or 0345 077 1895. 

 

Best wishes
Anna
Digital Community Officer

Jill1998
Community Champion

Re: September Sizzlers

Hi Marcella,that it is exactly the sort of thing I am looking at ,thinking that certain lifestyle choices supplements etc may well give me the equivalent gain of Tamoxifen.My acupuncturist recommended certain supplements(B12,D3)) good nutrition, minimise exposure to parabens including in dark hair dye,stay a good weight and keep active,minimise stress and positive visualisations.I was also wondering about the latest research re daily aspirin.I would be really interested to hear what she has to say to you Marcella let us know.
mf
Member

Re: September Sizzlers

Hi Jill. Hope you are doing ok today and get some help re boob. As you know, I'm thinking about staying off meds as I am scared to put my body through the horrors again. There is an ex-oncology nurse called Patricia Peat who practises integrative medicine and does online consultations on how best to support people through cancer treatment (supplements, nutrition etc). I know it's not everyone's cup of tea, but here's the website, if you're interested: http://canceroptions.co.uk/patricia-peat/ I emailed her yesterday.
Egret
Member

Re: September Sizzlers

Hi!  

I can see how the return to every day life can be a challenge, a sense of what now?  Egret x

familytree
Member

Re: September Sizzlers

Sounds a nightmare egret. Everyone's journey is relative how ever much you try to be grateful and know there are worse off in this world...far worse off but it doesn't stop anyone feeling like they do...all valid x
Jill1998
Community Champion

Re: September Sizzlers

Abandoned but free Egret !!!Sounds like you didn't get a lot of support during chemo glad you have tried to do something about that and hopefully change it for others.I think it is the ending of treatment and the having to try and live a normal life again that is the challenge after life being dominated by cancer for many months.
Egret
Member

Re: September Sizzlers

Hi!  

FEELING ABANDONNED:

Because rads are everyday except weekends, there is an intensity of contact with medical professionals. Helas, part of chemotherapy being so awful, is that I found myself "abandonned" by medical professionals while coping with terrible side-effects. Motion like/pregnancy sickness, mouth sores, hangovers feel without a drop of alcohol, headaches, bowels blocking, rushing to the loo ten times a night, tiredness, foggy chemo brain, not to speak of despairing near total hair loss. I saw my Condultant Oncolgist once, for 30 minutes. I saw the registrar twice for 30 minutes each time. I was feeling awful, yet judged having "moderate side-effects", how did my oncologists know? They must have second sight, given that for my first 3 months chemo  - both my oncologists did not bother to see me. Imagine not seing any doctor from the beginning of rads, during treatment, and up to two months afterwards. Abandonned?  Well I have some training in that field.  I managed to change hospital, but I am totally disillusioned. I EXPECT to be discharged pills in hand, and abandonned.  Abandonned - or -  FREE?  

If you want/need support, advice or reassurance, turn to the Macmillan, Breast Cancer Care, Maggie's!!! They are great!!!  

Egret x

 

 

 

Jill1998
Community Champion

Re: September Sizzlers

I think it is because really all you can now is "going away and try not to get it again" as someone else said to me.Whilst you are in active treatment you feel like you have lots if people around you working to get rid of cancer and stop it coming back now you have to go back to the real world changed mentally and physically and just get on with it,I think it must be pretty common to feel like we are.
familytree
Member

Re: September Sizzlers

Oh not heard of that.. Will look into it thanks x x
mf
Member

Re: September Sizzlers

Hi All. I'm with you on the need for after care. I'm now 5 weeks post rads and struggling with doing more than the basics. Due back at work in two weeks, though have holiday to take. Some people on here have mentioned the Macmillan moving on course. Maybe that would help us....
familytree
Member

Re: September Sizzlers

Oh Jill hope the Dr helps. I agree we are left alone too soon. Even if it were a kind of get fit camp , positive energy and well being. We are all rattling about trying to drag ourselves back to some normality but clueless how to do it! I'm on anti depressants but feeling worse if I'm honest. Quite nervy and anxious. Sigh x x
Jill1998
Community Champion

Re: September Sizzlers

I agree,someone else was saying about the BUPA advert re the support package post cancer treatment and I really think most of us could do with something like that really and in the very beginning maybe some follow up a bit quicker.Hard though to gauge cos in some ways most if us just want to move on and not have endless medical appointments and keep being reminded of cancer.I have researching other ways I can reduce my chances of reoccurrence by 1% so that if I decide not to take Tamoxifen I can counter balance that by some lifestyle changes.