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**TAMOXIFEN**22 !

999 replies

MaryAnnSingleton · 06/04/2012 14:39

yikes- here we go...

OP posts:
topsyturner · 20/04/2012 20:59

Grey that's good news about your chest infection . Do you mind me asking what those initials stand for ( your bc diagnosis )

My hair has been dyed . Pic on Facebook if anyone wants to see it . I am liking it !

Gigondas · 20/04/2012 21:21

Cant see fb (can send you details if want to ) Topsy.
Ned glad your mouth a bit easier.
1in8 sorry about the blip-how is ds tonight?

Big gig had her first very put on cry about "big school" tonight. I would have got more bothered 1. If it wasn't the sort of crying you usually see when marian Carey tries to act 2. She wasn't using it as part of her "total war" strategy on not going to bed.

Gigondas · 20/04/2012 21:23

grey I agree with kurri that sounds positive. How was dgs first day? I am quite sure you will be seeing many more firsts (including doubtless some of the more memorable pre school concerts) with dgs.

MaryAnnSingleton · 20/04/2012 21:42

crafty Miss midi gig !!
greylady that sounds positive (GP appointment) - try not to fret- as amber says 5 years clear is something to hold on to - perhaps dgd going to school is a catalyst for making one feel wibbly,time passing and all
V nice to see my brother,he's gone to bed as he has such an early start. Mum very very bad with PD symptoms- awful- dad very worried.

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Gigondas · 20/04/2012 21:51

Mas- fil had pd but for some time. I will ask dh how he got diagnosed (was before we were married) as I think was controlled for some years .

Remind me never to look at google - I know I shouldn't but it's suicide inducing reading which has no relationship to what oncologist told me. This isn't unusual is it?

Iamseeingstars · 20/04/2012 22:02

Hi Everyone, just thought I would pop in and say Hello.

Sorry Ive not been around for a while. Been very depressed and feeling sorry for myself. Also spent a lot of time back in hospital for post transplant ailments. Must have had every kind of test available and the drugs have caused so many many problems with my body. I still cant walk properly and have lost even more weight (about 30kg now).

Am feeling a bit more positive now and know I need to focus on getting better.

Hugs to everyone

Gigondas · 20/04/2012 22:11

Hugs to you stars. you have had so much to contend but can hopefully start on upward curve of recovery.

jchocchip · 20/04/2012 22:21

Hello Stars. Glad you are feeling a bit more positive. Not surprising you've been depressed though, really is a normal reaction.

Hmm. For "a bit confused" substitute "hallucinating and climbing the walls" Been visiting Mum and she is not good. Thought she was in a car and there were other people behind me and her. May test for a urine infection and also brain scan. All obs pretty normal though. :(

Tired and emo now.

topsyturner · 20/04/2012 22:22

Stars!!!
So good to hear from you .
How are you ?

topsyturner · 20/04/2012 22:24

Jane I would lay money on a urine infection . I have seen some older ladies who you would swear were doolally , 24 hours of antibiotics later they were perfectly normal .

MaryAnnSingleton · 20/04/2012 22:40

hugs to jane and lovely to see stars
Mum can't tolerate the new drugs so she's not on any for PD at the mo - am worried

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thegreylady · 20/04/2012 23:02

Tnbc is triple negative breast cancer ie not receptive to tamoxifen or herceptin because not driven by hormones or by Her2 protein. It tends to be quite aggressive in first 3 years then by about 7/8 years if no recurrence then classed as 'cured.By 5 years only minimal chance of problems but if TN Mets happen they are harder to treat than those from +++ tumours.

topsyturner · 20/04/2012 23:10

Thanks grey , that was nearly me but I turned out to be herceptin responsive . Thank God as I have lung secondaries .

Gigondas · 21/04/2012 07:24

j mil had same sort of problem before Xmas . Forgot everything (dh and bil had to explain for her how to switch on TV about 20 times), couldn't remember who was alive / who wasnt . Was sent for a Check on memory but also treated for urinary infection . Was better within a week of starting anti bs.

jchocchip · 21/04/2012 08:38

Oh dear mas do hope they manage to find a treatment that suits your Mum. Such a worry when they are ill and you don't feel anything is being done.

I looked at Dr google for causes of hallucination, tremors, leg twitching and visual disturbance in the elderly and it wasn't helpful. It did reveal to me that there are a dozen different types of Parkinsons which I didn't know. I do think that Mum could be dehydrated, her eyes were sunken last night and it looked like she had no straw which she usually uses (otherwise its no so much drinking tea as bathing in it) helped her drink a bit last night and gave her half a ripe banana. Will see if they manage to get a urine sample today, but I worry that they find it easier to change the bed than hoist her regularly. Normally she is very articulate and therefore not as vulnerable as she can say what she wants.

Thinking about it now, the tremors and hallucinations could be morphine withdrawal as after initially upping the dose they have now reduced it to half the original.

There is a lady with a tn dx at my local group. She said she felt cut adrift at the end of treatment, because there are no pills to take, just wait and see.

Any way my big brother is coming later and we are thinking of going out tonight to a sex pistols tribute band! Not my normal night out, but it should be fun...

Sorry to ramble on. I will go out shopping later, maybe a trip to Waitrose for some treats. :)

jchocchip · 21/04/2012 08:39

Mum has had a uti before, hope it is that again, but it seems different.

Gigondas · 21/04/2012 08:49

Dr google never helpful j but if she is coming off painkillers (ESP anything with codeine or opiates in) that would explain a lot. I know what it did to me and it is min altering .

MaryAnnSingleton · 21/04/2012 09:00

jane a comforting hug for you for your mum - I worry so much about dad too- they were going off to stay the night on Sunday in bath with my brother as dad was going to go sailing but mum feels she can't move enough.

Beautifully sunny here which is cheering...

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jchocchip · 21/04/2012 11:03

Hugs to you too mas. Hope your Mum can be brave enough to go tomorrow.

NedSchneebly · 21/04/2012 11:27

Morning all. Hope everyone bearing up this morning. The sun is shining here, which is a bonus! I am doing OK, except for an eye infection. I have the "barbed wire under the eyelids" thing going on. Sad its a miracle I can see to type at all! Got good ointment from the docs, just want to to be working NOW, not in 48 hours time. . .

Stars ! Good to see you! Am pleased to hear you feel more positive - you really have been through it, and deserve to feel better. Sending you some positive vibes x x

gig step AWAY from Google! we know it is not helpful. Sit with me on the box and we can eat biscuits together instead. I bet midi gigs rant was amusing to watch!

jchoc ramble away, its what we're here for. So sorry about your mum - what a worry. Hopefully you can get some answers soon. Sending you all very big hugs x x Sex Pistols tribute sounds a good night out - hope you can have a great time this evening with your brother!

MAS big hugs to you and your mum too. Hope she feels well enough to go and see your brother tomorrow.

Big hugs to topsy Sorry to hear you're having a wobble, my love. Hope you had a good night out last night, and are feeling a bit brighter today. The daily toil of staying positive is very hard work, and its natural for that to slip sometimes, I think.

I think we all deserve some Thanks this morning x x x x

amberlight · 21/04/2012 12:50

..and some Brew too
Hugs all round for those that appreciate that sort of thing.

HanoverGirl · 21/04/2012 15:19

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smee · 21/04/2012 16:08

Hanover, obviously I don't know what your friend's specific situation is, but from what you've just posted it sounds like she definitely has breast cancer, but is choosing not to have any treatment. Is that right?

If so, I really hope you don't mind me saying this, but from all I've learned going through cancer myself, if you're unlucky enough to find cancer in your breast, it needs to be removed. Alternative therapies won't do that. The cancer will grow and it will spread. Once it reaches vital organs such as liver, lungs, brains it will kill you - might take time, and sorry to be blunt, but that's the simple truth.

Alternative therapies are undeniably brilliant - there's lots they can help with, especially with prevention of recurrence and recovery from treatment, but they really won't remove the cancer.

You sound like a lovely friend and you must support her to do whatever is right for her obviously. But still you have to be realistic. If she really isn't aware of what I've just said so starkly, well she possibly needs to be told. Sorry. Hard to write, let alone hear and feel free to ignore me..!

Hope everyone out there's okay. I see many in need of hugs and Brew. sorry to rush through - working away as usual. Have a Monday deadline on something, so might be more sane and around after that. Smile

Gigondas · 21/04/2012 16:52

Hi smee hope you get everything done.

hanover I would echo what smee says. I also assume that you are both aware that her breast cancer may continue to develop /spread . Therefore the treatment options she has been given now and rejected (eg chemo , rads) may no longer be suitable to help.

I am sure you are aware of this but the prognosis for Steve jobs would likely have been very different if he had taken the original conventional medical treatment rather than using alternative treatment. That is just one reason why I would echo smee on using alternative therapy for recovery rather than treatment purposes .

Lovely day here- big gig here while dh at rugby with mini gig and dss (so much for revision). So far we have only had minimal acting up from big gig but i did have to eat raw leek and potato as part of the soup she had made when helping me cook .

Mas any update on how your mum is doing?

KurriKurri · 21/04/2012 17:38

HanoverGirl, - Does the book you have recommended reject all conventional approaches to cancer treatment? (I haven't read it so I don't know) If so I'm afraid I think that is a dangerous path to follow, and I have seen someone die from taking that route. I am all for complementary therapies, anything which you find helpful emotionally or physically to get you through the illness. But modern treatments have been proven to work, - I have never seen any convincing evidence of the no-treatment/alternative medicine system working.

Of course everyone must make their own choice, and it is entirely your friend's business which path she chooses to follow, but if your friend has early stage BC, it is entirely treatable with conventional medicine, but untreated it will kill her. I'm sorry if that sounds blunt, but it wouldn't be honest not to give my viewpoint on this.

I'm sorry she is going through this, and I do think you sound like a very supportive friend, but it would be sad if she made ill informed choices which ultimately harmed her. I wish her all the very best.

love to everyone, and hugs for those having worries with parents xx

Stars - it great to see you and to hear you sounding happier, it would be remarkable if you didn't have periods of feeling down given what you have been through. But do keep coming here to talk - we're always here to listen if you want to get your feelings off your chest Smile xx

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