September Sizzlers

[mf]

The white hair must have cheered you up no end, Jill! Talked to hairdresser re stripping out my hair dye and going grey - he said it wouldn't look v nice and I'd need to put an ash dye over it anyway!

[Jill1998]

Looks like we will all be dragging ourselves back to work at around the same time ,just noticed that the new hair the doc pointed out was growing is pure white!!!!

[mf]

Current sick certificate is till 5 Oct. I might need another week as I don't see occ health till 6 Oct. sick pay goes down to half on 27 Oct so have to go back before that.

[familytree]

I'm going back on the 5th Oct slow return for two weeks. If I struggle going to go off with depression but feel it's time to get some normality back. I may not think of cancer as much if I'm busy. Sick to death of it dominating my thoughts, it's exhausting! X glad you're healing Jill x

[Jill1998]

When are you considering going back?

[mf]

I find the same, Jill - how can you say how you'll feel in two weeks' time when you don't know how you'll feel in an hour? My main worry is that I have to lie on the sofa after every activity - even after drying my hair. Can't really do that at work!

[Jill1998]

Well cancer is included in disability discrimination law but I wouldn't consider myself disabled either a bit mangled maybe !!!I am awaiting the phone call from Occy health which I doubt will be very enlightening,think I will just have to grab the bull by the horns and say "this is what I feel able to do and when".Keeping getting energy slumps not sure if that is after effects if rads or infection or maybe both ,hard to predict really how I will be in 2 weeks time.

[mf]

Hi Jill. Glad your infection is clearing up. HR have asked occ health to assess if I am disabled, among other things. I was indignant at first but apparently this can be advantageous because allowances have to be made. Not sure I'd be considered disabled if cancer has gone and I'm just knackered.

[Eiljones]

Hi Sharnie,

It took two weeks for the results of my dexa scan.  They sent me a copy to my home address but all it said was the "Your bone densitometry scan demonstrates no clear abnormality" and said that they recommended that you continue on your current medication and we will repeat the scan when appropriate.

I'm taking anastrozole and have been on it for about 5 weeks and am just a bit more achey than usual and my hair seems dry.  Will have to go now have got rads number 7 today so nearly half way through.

Catch up with you all later. E.

[Jill1998]

Think blood tests to check for markers are on their way,but not standard as yet.Yearly mammograms are all we are gonna get.I have my boss visiting Monday and 2 weeks left on sick note ,need to get clear in my mind what I want to do in terms of return to work and then stick to my guns I'm a bit if a soft touch once I walk through the door I will start back tracking and offering to be more flexible .I feel exactly like you and Christine Marcella,whole summer off work very little achieved,not a lot of fun had!!!At least my infection is clearing up.

[mf]

Hi Christine. Yes, I wanted to decorate too but haven't had the strength to look at a paint chart. I had my blood taken pre-op six months ago but not since. I thought they would check it for tumour markers or something to see if there's evidence of metastases but maybe that's old school. Anyone on here know?

[tweeks123]

Morning Mf.
yes it was my choice to go back full swing I inly work till 1,30 somerimes 3 so shouldnt be to bad..yes its not good being off all that time and not enjoyed it at all im looking round and thinking wish I could have decorated before I went back to work them I would feel id achieved something. .Ive never been to the doctors all through this maybe once whe. Infected ubder boob .my doctor has been great she told me to just ring reception and ask to pass a message a for her to ring me..maybe I should go see her before I go back and get a full MOT never had my bloods checked all through this..good luck with getting back to work and normal life its gonna be hard everyone os going to be asking me where ive been thats gonna be the worse for me maybe I just say its been a long rollercoaster and change the subject maybe they will get the message not to ask again ..Xx
christine xx

[mf]

Morning, Christine. Brave of you to dive straight back in. I feel a bit cheated that I've had all this time off and not done anything fun. I had my going back to work chat yesterday. Actually felt better for talking to my boss and finding out what's going on. My mind has been so focussed on cancer for nearly six months that I haven't applied it to anything stimulating. I'm seeing occupational therapist then going back gradually, prob from 5 Oct but seeing GP first as would like to get swollen glands worry put away before rejoining real life.

[tweeks123]

Morning ladies
I know its early but im here havjng hot choc at 3.30am I still never get a full
nights sleep due to hubby getting up for
work ...well I went into the office at work
yesterday about coming back I felt
strange I said I feel lke ive been in prison
for 6 mnths and been let out I had a right
food chat for about 2 n half hrs by the
time I finished I was shatterd may e to much chatting never stopped for breath
ha .. they said or you sure ur ready to
cone back do u want to come back slowly
I said no I want to come back straight
into my old rota ..my sick not runs out on

.
1st October thursday. So they said why
dont you start back on the 5th minday.. I
said no break me in gently thursday and
friday morning still cant get my shoe on.
Hope I can by then..felt really strange
being back into society. .ive been driving
my daughter and her friend to school and
timing how to get to my first visit at 8am
but when I take them now im not in
uniform and not eaten till I get back home
so need to be more organised next week
its hard with this broken sleep too I might
be nodding back off at 5.30/ 6 am ..I
know im gonna feel tired for a while till
get back Into the swing of things but
looking forward to getting back I cant say
ive enjoyed one day of the time ive been
off at all.we need to think of something to
call our October monthly chat..good luck to every one nearly finishing rads take care x
christine x

[familytree]

Yes that's what I was told..Thanks for the clarity. Hard to remember it all x

[Cesrabbit]

Yes I've had a complete hysterectomy and was offered tamoxifen. ....but chose Anastrozole which is for post menopause only. When onc knew I had no ovaries she said 'great'! Tamoxifen binds to oestrogen receptors to stop them joining cancer cells, Anastrozole stops oestrogen completely.

[familytree]

Yes I've been offered it because of my osteoporosis. It's much kinder on the bones than letrozole so it must work for both. I don't think they would use letrozole for pre menopause though. X

[Sparkle-at-50]

Tamoxifen factsheet says it can be "used to treat both pre-menopausal and post-menopausal women"

[familytree]

No I don't think so. Tamoxifen is for pre menopause and letrozole or the like for post menopause. Letrozole blocks any production of oestrogen in the body while tamoxifen focuses on the overies.. I think that's right? So much information to remember lol x

[Cesrabbit]

Hi. Egret. I don't have to worry about steroids as didn't do chemo but pre diabetes/high cholesterol thing is just another worry as Anastrozole can cause cholesterol to go higher. I was given choice by Onc. Tamoxifen or Anastrozole? I asked her main side effects, her reply was 'tamoxifen can cause hot flushes and weight gain and Anastrozole joint/bone pain but less hot flushes and no weight gain'. I opted for Anastrozole as I'm pretty weight conscious but am awaiting Dexa scan. I was also told you have to be physically fit on Anastrozole to keep aches and pains at bay. I've been on it a month and not had any. I was given Adcal alongside it to help bones. Accord is the brand and from reading through dozens of threads, it appears to give less side effects than the Teva brand. But, this maybe just down to me and luck. Personally I would rather take Arimidex the non generic, but I'd have to self fund that at £68 per pack of 28 as gp won't prescribe it. x

[Sparkle-at-50]

Hi Lorna

I don't have osteoporosis (as far as I know?). I have never had a bone scan like some people. I did wonder why I was given Tamoxifen rather than an AI but haven't asked. I may ask at my first annual review. My consultant did say I would start on Tamoxifen but if I had bad Side Effects they would consider changing to something else. Is Tamoxifen cheaper than an AI? As I'm finding it okay I don't want to change for change sake.

Sparkle

xxx

[familytree]

Hi Sharon..I called my bc nurse for the results about 10 days later I think. Then I had to tell my onc who then wanted me to change to tamoxifen so I call my bc back who said no my surgeon says stay on letrozol as they are proven to work better but take bone building drugs. My onc then says that's naughty of them to say that?! Make your minds up between you please! Lol. I read awful reports on the bone drug but low and behold a week later it's all over the news it's shown to help prevent bone Mets! Anyway I've decided not to decide and carry on with what I started on until I've the energy to look into it and make a decision x

[mf]

Hi Sharon. Good that you're better on Letrozole. I was told I wouldn't hear re the DEXA scan results unless there was a problem.

[Sharnie]

Hi Lorna just wondered how long it was for results of dexa scan. I had mine a couple of weeks ago and haven't heard anything yet. I don't have another appointment with oncologist until November. I guess they would let me know if there are any problems. I'm getting on ok with Letrozole so far, much better than I was on Tamoxifen. Sharon x

[familytree]

Don't know where the methasone came from on the end of dexa 😉 x

[familytree]

Egret you have had a long haul and bound to be at the end of your tether...hold on tight, not long now x

[familytree]

Sparkle are you on tamoxifen because of osteoporosis? I was asked to swap from letrozole ( post menopause) to tamoxifen because of results of dexamethasone scan. Not swapped yet though...got 10 years so no rush 😉 Lorna x

[Jill1998]

Yeh , can't say I enjoyed it much myself!!! No part of cancer treatment is fun exactly!!!

[Egret]

Thanks Jill1998, I thought rads were the end of the tunnel after chemo - how wrong was I!!! It's hard to be grateful to all the nurses/radiologists, when positioned like at the dentist with boobs out too! Grinding teeth and days. Hugs, Egret

[Egret]

Thanks Sparkle, some hope what you wrire & I can't wait for rads to be over. Egret x

[Egret]

mf, I am oestrogen positive, so I will get meds. Thank you your kind words. I hope for your side-effects to get better and to vanish! Egret x

[Sparkle-at-50]

Hi Egret

I have taken Wockhardt Tamoxifen since April, following WLE and rads. I've had a few hot flushes most evenings but no more than friends (who are well) the same age (early 50's) and less than some. Although I am post-menopausal (hysterectomy a few years ago) I was prescribed Tamoxifen. I was 8/8 ER+. My legs ached for about a week in June but no other aches and pains or SE. So I'm staying with Wockhardt.

Sparkle

xxx

[Egret]

Hi Cesrabbit, if you are pre-diabetic like me, beware of steroids. They can tip us over and trigger diabetes. Egret x

[mf]

Forgot to add, Egret, that your oncologist will prescribe the meds if you need them, ie if your cancer was oestrogen positive. The meds we've discussed suppress oestrogen production. Some people get aching joints and bones. I had bladder inflammation and blood in my urine, but not everyone gets this. Hopefully you'll be fine.

[Jill1998]

Feel free to rant Egret, it's a long hard slog this cancer business.Rads take it out of you, the sheer relentlessness of it ,Groundhog day, day after day.Don't worry about the meds yet ,get rads over with ,some people are lucky and get side effects that are completely manageable ,you need to give it a go and see how you feel.Different brands of the same meds appear to have differing side effects, but again it is not the same for everyone ,some people notice no difference .Every day you go is one less session,keep going ,the light at the end of the tunnel will become visible soon!

[mf]

Hi Egret. You've had a long haul - feel free to rant at leisure on here. We all do from time to time. Don't worry re meds; you might well be fine. As far as I know, Tamoxifen is usually for pre-menopausal women, and the aromatise inhibitors (Anastrazole, Letrozole, etc) are for those post menopause. Accord is the brand, I think. Usually it's best to stick to the same brand, which is why people on here were wondering where they could get Accord. I hope this helps.

[Egret]

Hi!

I read the tread about Accord. I am looking for info about meds (5-10 yrs, an eternity) so I would like to know the pills options. Why is Accord preferred? How different from Taximofen? Why are so many women not taking the meds?  Who prescribes? Grateful for your experience sofar.

I am still on rads for another 12 sessions with an ABC rigid breath tube stuck in my mouth. The mouthpiece is trouble. There should be four different sizes available XBig, Big, Medium, Small according to the product website (from what I gathered) but ***sigh*** I must endure a "one-size-fit-all-to-big-for-my-small-mouth".

Today is one of those days when I just want to pack up. I am so SO tired, exhausted of trying to go through for the past 7 and 1/2  months (12 mths for my hair despite the torture of the cold cap). Yes, I fear pain in my gum, yes I am good at controlling my breath, staying stock still with the indignity of boobs out, but it seems to me that at each step some new hidden "torture" are looming in wait. I am now more anxious about "treatments" - (next Taximofen or some other ghastly meds with side-effects?) than I am afraid of bc!!!  I might well be one of those patients not taking her tablets for the duration, because I have enough of the "one-size-fit-all" approach, and the dustbin label of "moderate discomfort" - yeah. Fed up. Sorry, ranting. It helps. Egret x

[mf]

Hi Jennifed. Spoke to BC nurse today re swollen lymph nodes after exercise and onc dismissing this. She said it's not a normal response to BC treatment as it's not just in armpits and to see GP for poss blood tests or referral back to onc. Thought I'd share this as you had similar prob.

[Jill1998]

On the supplement front you will find a lot have soya or corn oil base,I ended up "allergic" to both after taking supplements with them in for years .Holland and Barrett have a range that are free from both,also Solgar vitamins are free from these and other potential nasties too.If you have to pay for them and the others are prescribed that is an issue though.

[mf]

Crikey, Ces, you've been through it healthwise. My scales haven't seen 8st 5lb since I was 16. I was told I was overweight by an obese nurse!

[familytree]

Oh I'm on same suppliments as dexa scan showed osteoporosis...Will check ingredients on mine as I've heard the same 're soya x

[Cesrabbit]

Adcal is calcium and vitamin d which is prescribed alongside anastrozole as it can 'strip your bones' and can cause osteoporosis!

[familytree]

What's adcal for? The cheek of your Dr saying that! She would have me put down if she thinks 8 stone is fat! Lol x

[Cesrabbit]

Hi guys. Managed to track down Accord from little independent pharmacy about 8 miles away...I may have been fine on another brand but psychologically I just needed to stick with Accord. It's strange how we measure side effects? I was on HRT until I was diagnosed. Took it from 50 after a surgical hysterectomy (I wasn't menopausal at that time either so had no experience of it) and took it for 4 years. It was a wonder drug. I felt fab. Lovely skin,hair,energy. Was happy and felt young I suppose. Now I'm off it and on an anastrozole..well I don't ache, I am a bit more wrinkly, but diagnosis of bc aged me overnight, and I feel tired. Hair very dry and my scalp itches.Nothing major. Lost 5lbs tho..so that's good but have adjusted diet as now have pre diabetes and high cholesterol! Anything else?!! I'm only 8st 5lbs too but GP said 'you're probably fat on inside'. Wanted to punch her at that point. Anyway, I too shall keep you posted of any developing se with this drug. Also on Adcal altho I notice they contain soya oil and I thought that was a no no? Thoughts? Ces x

[familytree]

Good point Jill re success results if percentages are so high for giving them up! Oh it's all so complicated and beyond me... I will take them because I'm a coward! Good on you Christine for making the decision x

[tweeks123]

I tried 5 and stopped taking them I was ok after a week or two..got them out of my system..why dont you give them a try for a week see uf SE. come back x
christine x

[mf]

That's interesting, Christine. Onc said I might well have same SEs but just to stop if that happened. Unfortunately it seems to take weeks to recover, which is why I'm reluctant to take them.

[tweeks123]

I was switched fron letrozole to Anastrazole.. and I found SE the same even though Anastrazole waa a lower dose thought I would have been ok when seen lower dose but only took about 5 and couldnt cope decided not to take any tablets .. x
christine x

[mf]

Hi E. I have just been switched to Anastrazole from Letrozole but haven't started taking it yet. Not sure yet whether I will. Glad you're doing ok on it.

[Jill1998]

That should be research findings not funding.