**Tamoxigang 53** Roll up, roll up... Anyone with any cancer (or test-waiting) welcome!

[MarthaCostello]

Good evening all,

The old thread had nearly run out when I posted so I have taken the liberty of starting a new one before it fills up completely.

I hope the title is OK - there isn't actually that much room, I was trying to fit in that people should come along even if they haven't been diagnosed yet.

If you're new here welcome to the Tamoxigang thread. This is a great place for anyone with any type of cancer (it originally started out as those taking Tamoxifen for breast cancer, hence the name, but has expanded). Please introduce yourself and make yourself comfortable! You're more than welcome here if you haven't been diagnosed yet too, sometimes people find it helpful to talk through their fears whilst waiting for results. And we will hold your hand until you find out, and hopefully wave you on your way with an all-clear :)

There is almost always someone around to chat, or to answer any questions. Nothing is off-limits here. This is somewhere to offload any fears and frustrations, in a safe place where someone will have been there before.

I hope everyone has been enjoying the gorgeous summery weather

BreakingDad, sorry to are both going through this, it is a scary time. Waiting is extremely distressing and her mind will be taking to places she probably won't even tell you about.

I would recommend keeping her away from Google, there is a lot of rubbish on there. It is far more likely to be anything other than cancer but if the worst is confirmed there are a few things you should know.

Firstly not all breast cancer is the same, there are many types which respond to different treatments. Not everyone needs chemo or a mastectomy. Secondly, with a positive diagnosis comes a treatment plan, in that very same appointment. Things happen very quickly which is reassuring.

Strangely a positive, detailed diagnosis is much better than this torturous not knowing because there are lots of things that can be done. It is very treatable.

Hi all,
I've just seen the back pain discussion and thought I'd join in as I'm on annual leave from work atm and laid up with painful sciatica, and yes my mind has been wandering into murky 'what if...' territory.

Having said that, my predisposition to sciatica well predates the boob issues, but hard not to think unhelpful thoughts at times.

I have my annual check up with boob surgeon at end of Nov, which I'm hoping will be "yes, your implants look and feel great...now on your way til next year Mrs M". I really hope the back thing has cleared up by then and then I won't feel obliged to mention it.

You have my sympathies nanny. It's a right pain to be drawn back in.

Mrs..hope you have a nice time spoiling your dd.

Waving at everyone else and great to see people continuing to get support and information from this thread.

BreakingDad...crossing everything that your dw gets good results very quickly. Chances are she will and if by any chance that isn't the case there is fantastic treatment and support available. This waiting bit is in some ways the hardest. Hang on in there with her. My dh has been a star and I will always be grateful to him for that.

Great post there Mrs.

Special wave to amber and malt if they're reading

Hi marshy, lovely to hear from you. Sorry you're suffering with back trouble too. Hopefully it's 'just' sciatica.i wonder if we will ever face a Iain without thinking the worst.

Has anyone been getting annoyed with the song by Jamie Lawson, it's all over the radio at the moment? The last verse seems to be about someone getting secondary cancer and dying. It's really pissing me off, I keep hearing what a beautiful song it is but it makes me so mad. There is nothing beautiful or romantic about all this.

Dd should be home in a couple of hours, with or without washing!!

Face a pain, not an Iain !!

I tend to have radio 4 on all day mrs (my ds has just said something very unkind about the archers ) so I'm pleased to say I haven't heard it. It sounds like one to avoid.

I think Iain would be preferable to sciatica

Think I need to switch to radio 4 marshy. Dd is home, I went to get her in the end, never driven into the big city before. It's amazing what you'll do when your child sounds ill and pathetic on the phone.....with a pile if washing!! I'm in nurturing mode already.

Well, Marshy, with regards to my back pain, I've just heard that my tumour is not malignant; it's called a Hibernoma (inside the bone) it's very rare but it's not a metastasis and I was convinced, absolutely convinced, that it was secondary cancer. It's very easy to worry and see every little pain as something sinister. It's worth getting it checked out though, if only to put your mm d at rest.

Aw, enjoy nurturing mrs

Fab news Anna. I have been on the phone to my gp today and got some extra pain meds. Will go and see her if it doesn't start improving soon.

That's great news Anna

First round of docetaxyl yesterday, it went well and didn't have any allergic reaction, feeling a touch nauseous today but nothing too dramatic- does anyone have any experience of how quicky hair loss is likely to kick in, I know everyone is different but nice to hear how others found it?

Wonderful news Anna

malt has asked me to say hi to everyone from her, she's fine but deregistered during the hacking. Hopefully she will return soon :)

Marshy I hope your sciatica improves soon, sounds horrid.

lily how was your transfusion? I hope it has given you a bit of an energy boost :)

A friend is involved in a new charity specifically for secondary breast cancer, called Second Hope. I thought it might interest some people here :) as you may know, secondary breast cancer receives only about 5% of research funding so one of their goals is to change that, as well as providing support after diagnosis, and their website has a lot of information about secondary breast cancer. (So perhaps not something to read if you don't have secondaries and are anxious!)

fresta I hope your first round of chemo went OK. They might have given you a diary, but if not, I'd recommend keeping a little diary of your symptoms as I found that by the time I saw the oncologist again I'd forgotten my earlier side effects and couldn't remember timings. I hope you don't have too many side effects

BreakingDad good you'll be at your wife's appointment, I'm sure she will value your support. I hope you can both put it out if your mind as much as possible over the weekend

nanny it must be a worry, I hope it is just general aches and pains. I imagine the nurses would be extra cautious given your history, better safe than sorry and all that :) my team are quite eager, I was only stage 3 but they drag me in for testing if anything could be remotely related to cancer. It's annoying, but on balance better to be that way round than letting possible issues slip through the cracks. I hope your oncologist can put your mind at rest and any tests are done quickly.

WornOutJo how are you doing? What day is your appointment?

NewNormal and Whether and anyone else who hasn't posted recently, if you are reading I hope you are doing well.

This is getting rather long! I hope everyone has a good weekend and waving to everyone :)

Can I just ask whether anyone has experienced a stiff neck after starting tamoxifen? It's not down as a side effect but when I googled it several threads popped up where women were complaining of having a stiff neck.

frest my hair started falling out by week 3 just as my oncologist said it would.i guess it could depend on the kind of chemo and dose. I was on my AC cycles then. Even now on Taxol weekly, I will continue to have hair loss. So far my eyebrows are still there and my eye lashes very much thinned out, but most of the hair on my head is gone.
Do you know what you will do on terms of either shaving it off or not etc?

My hair fell out just after the 2nd round of Tax (i didn't have FEC).
I'm now on further intravenous chemo for my secondary bone cancer so decided to have my head shaved the day after my 2nd round as my Onc told me that it always go on Epirubicin. At the moment (a week further on) it is growing back!
I had my blood transfusion on Monday but can't really tell what effect it has had as I have been very tired (was at work the rest of the week). I'm hoping that the Hb level will stay up this time round.
All the hormone treatments I've had have given me stiffness and aches in various parts of the body.

Hi everyone, thanks for the replies. Royal, I think I will probably go down the wig route, I have an appointment made for me at the hospital for Friday to try some on. I really think dd is going to be upset about the hair-loss, after explaining a little more to her about my treatment today, and what to expect it was the one thing that upset her- she says it will just be awkward if I don't have hair. I asked if she wanted to come with me to help me pick a wig but she was really against that- says she wants me to pick one that looks just like my hair does now. So tricky- I hope she'll come round soon . I was thinking of having my hair cut shorter in prep (its a short inverted bob already), maybe a shortish crop and then it wont seem such a dramatic change and hope a short wig will be easier to manage too. I have pretty fine hair anyway, just hoping wigs don't look heavy compared to my own hair as they always seem quite thick loooking.
Did anyone else have chemo to shrink a tumour and if so could feel the lump shrinking and how soon?
Not had too many side effects yet at 2 days post first docetaxel round so fingers crossed x

Yes, Fresta, I think that for children one of the hardest thing is the loss of hair. I had a similar conversation with my son this morning, I asked if he'd like to come with me to choose a wig but he said he wants me to get one just like my hair is now. I went to try some on last week and there's nothing that looks convincingly like my hair. I'll get it cut to match the wig as soon as I find a wig. They all look like wigs to me - even the real hair ones that cost £400! I've ordered a couple in the styles that I liked in my colour hair but I sU spect I'll end up wearing hats/ scarves. The woman having a wig fit next to me had a short wig and it looked real actually so maybe to look real you need to go short. I can't do that though because my ears stick out and I'll look like a pixie!

fresta cutting your hair vety short in preparation is a great idea. I did that too and it really did make it easier.i did not tell my children( aged 7.5 and 9.5) about the hair loss. I just started with really short hair(which they disapproved of ) and then once it started coming out, I took to wearing turban stule head coverings. DS1 kind've figured it our for himself!he asked if i was covering my head cause my hair was falling from the medicine, and I said yes. He said he did not want to see me without my hair, so I do not want to distress him. I got myself a wig, but have been loathe to use it! It just doesn't feel right for me.
Children do not like it when things change and when the things they are accustomed to are altered, so just take it slowly with your DD. she will eventually adapt.
Best of luck all.

OMG! Feel like I have been hit with truck! M body aches from head to toe. I have spent the whole day yesterday laying on the sofa unable to do much at all. Thank God DH could take over looking after dd. This morning I still feel terrible, combined with feeling lightheaded, dizzy and constipated. Is this normal?

fresta yes it is quite normal, sorry :(
You can have somethung for the constipation. Has your nurse or doc mentioned constipation as a side effect and what you could do aout it?
The fatigue will hopefully subside and you will feel better. Make sure you drink enough water and do not push yourself. When you can't do something, don't do it. Rest is essential.
Hope you fell better very soon.

Feel like I have been hit with truck
Yep, I'm afraid that the Tax Truck usually hits (about 2-3 days in). I found I had about 3 days of feeling like I had flu but then the rest of the cycle was much better. Best to languish on the sofa, watching TV with a large jug of water, ginger biscuits and Haribo.

I found hot water bottles helpful with the tax aches. Hope you feel better soon Fresta.

Hi Ladies, good to see how well a lot of you are doing.
I visited this thread 18months ago when my dear dad had cancer. You were all so lovely and helpful. He is doing really well now which is great,

Unfortunately it is now my cousins turn! She has breast cancer and has been told she will need surgery then radiotherapy,
Well she had the surgery on Monday and is still in hospital, it was a lump removal, in the milk duct, picked up on her first routine mammogram (she's 53)
The surgery didn't go well, she had to have 2 blood transfusions and now her whole body has 'blown up' and they are keeping her in,
I live a long way from her so haven't visited but was wondering if this is usual? It was meant to be day surgery. Her mum, my aunt is frantic.

I myself have had breast lumps removed and was out the same day, I feel so sorry for her.

Lavender, how awful. I had that operation last year and was in hospital just as a day case. I have never heard of anything like that before. No words of wisdom I'm afraid, I wonder if this was a result of this particular surgery or her body would have reacted like this whatever was being done? They do always say surgery has its risks and I guess this is a prime example. It must be very worrying for you all. I hope she makes a complete recovery very soon.

Was it your dad who was having rads to his throat last year?

mrshodgilbert thanks for replying, I'm guessing it was, like you say a risk of surgery, poor thing has all this to cope with before even thinking about the rads,

Yes it was dad who was having rads on his throat, well remembered! He took a while to recover but is doing really well now, back to his gardening, although he gets very breathless,
He never did get back to drinking his beloved coffee, just sticks to water now.

I also hate that song you mentioned!!!

Hi lavender
Good to hear your dad is doing so well. I remember it being a tough time for you all.
Your poor cousin Can't the swelling sometimes be something to do with having a blood transfusion? I'm not sure though - I may be talking complete rubbish! Hope she's feeling better soon.
I'm still hobbling around with sciatica which is slowly getting better.
Just had a lovely chat with dd at uni who is coming back for some home comforts next week so really looking forward to that