**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

lovebeingananny thank you for your reply and I'm sorry to hear that tamoxifen has been such a struggle. I've heard that some women don't get bad side effects but when I asked my BCN if everyone got (significant) side effects she said yes. I asked if they got better and she said no, not really! The sensible part of me agrees it is worth trying it at least

Queen I'm all for BCN's being honest. But that's not true. I know lots of ladies who have had no or very few side effects. Also ladies who have had side effects for the first few months, and then things have settled. I have just been unlucky, my body doesn't seem to like Tamoxifen.

I will say, If you do decide to start taking it, there are different brands and although they are the same drug, they can affect different women in different ways. I found 2 brands that I hated, the one I am on now is the most bearable. So always worth trying a few brands, IF you find you have side effects.

Wishing you all the best for whatever you decide xx

That's interesting about the brands lovebeingananny. Did you ask your doctor to prescribe something different or just go to a different chemist? I've no idea how this works. Reassuring to hear that not everyone has the same experience too.

Hi Queen I don't know if it's the same everywhere. But my GP just prescribes Tamoxifen. The brand is totally down to the Chemist. Although most chemists are aware that ladies have different side effects to different brands, and most seem only to happy to order in the Brand you prefer. My Chemist now have the Brand I prefer on their computer system. Good Luck xx

Queen, well done for getting through the rads without too much difficulty. I had a very similar diagnosis to you last summer but I didn't ask about the chances of recurrence with or without tamoxifen, I just took it.

I have had very few side effects and I'm a bit surprised your bc nurse said what she did. I have had two short periods of experiencing hot flushes, neither particularly bad. About three months ago I noticed that my hair was thinning, but I think that has slowed down and nobody else would notice.

I have not had any other issues. I feel perfectly normal so I would say give it a try. I had no idea so many women abandoned it. Having said that I think they will move me onto letrozole in another year or two and I have heard that has unpleasant side effects so I understand your concern. I think it's worth trying it although I cried when I went to get my first prescription from the chemist.

Hi, well done on getting through rads. Tamoxifen has been fine for me. I've had hot flushes, but nothing too bad, and evening primrose oil helps with that. Apart from that, I've been fine.

Actually, recently had a womb cancer scare which is a side-effect of tamoxifen ( fortunately no cancer), although have gave got endometrial hyperplasia.

I also find that every so often, the hot flushes return, and just it down to that particular box of tamoxifen.however, day to day, I'm fine

Why don't you try it and see how you get on?

Thanks for explaining lovebeingananny

mrs that's great that the hair thinning is getting better. I can relate to the crying as I am very emotional these days. I have my first counselling session on Monday and goodness knows what that will release!

rivercam I'm sorry to hear about the womb cancer scare, that must have been terrifying. Re evening primrose oil, I used to take one called Efamol for my skin (it seemed to work unless it was the vitamin d I was taking at the same time) but stopped taking it when I was diagnosed as I wasn't sure if it was ok so glad to hear that's a possibility too.

Thanks everyone, you've given me some hope that it might be ok!

nannythanks a lot.

My experience with three hormonal treatments has been that they have all given me achy bones and tiredness. I'm post-menopausal and haven't had hot flushes and I've also have secondary cancer (bone mets) so am not typical.
I looked through the Breast Cancer Care forums and found that posters recommended a glass of tonic water (for the quinine) each day and omega 3 oil (with glucosamine an star flower oil being other common suggestions). I've started taking these and my aches on my current tablet (Exestamene) have been more bearable than on Tamoxifen and Letrozole.
Worth looking at the BCC forum for suggestions for other side effects.
I'm also starting a course of acupuncture (suggested by my oncology nursing team).

Forgot to add that there are long threads on the BCC forum about the different brands of tablets. General consensus seems to be that if you have SEs it is best to be on the original brand rather than generic and cheaper brands. If that is so you need to get your doctor to specify the brand on the prescription.

Hi lilymaid. Sorry to hear about your side effects. From googling it seems that the original brand is Nolvadex. The ones I've just been given are Wockhardt and I'm still debating whether to actually take them but will have a good look on the breast cancer care forum

Queen, I have the Wockhardt ones and I've had very little trouble with them as I mentioned yesterday. I'd be worried if the pharmacist gave me anything else, they seem to suit me.

I have finally plucked up the courage to post on here. After a CT scan and a biopsy I was yesterday told that I have bile duct/liver cancer with a secondary in a lung. I am numb and calm so far.

The hospital are having an interdisciplinary meeting early next week then they will meet me and tell me what, if anything, they are going to try and do.

I have found out that Dr Google can be a mine of information - but also can give facts that you may not want to read!!

Thank you for reading.

Hello whether, that sounds quite shocking and I understand how you must be feeling numb. I think that's quite a common emotion initially. None of us think it will happen to us. With breast cancer there is also the fact that you generally don't feel I'll either, I'm guessing maybe you haven't been feeling too well though?

I hope that there will be a treatment plan, I've not come across anyone who hasn't been treated, yet and things feel more in control when you see what's going to happen.

Beware of google, with breast cancer much of it is out of date and frankly too scary to read. Stick to the known charity websites for your illness.

Do you have a family around you for help and support? You're very welcome here, I don't think anyone has the same cancer as you at the moment, but we all understand the fear and how overwhelming it is. Keep posting.

Hi Whether
I hope you have lots of RL support and are able to use this thread for support, posters are very knowledgeable and welcoming.

I'd second using Known charity websites/NHS as Dr Google can be scary and not always helpful.

Tuesday's appointment is taking forever to get here.
Getting fleeting burning/pulling pains, think its probably psychological tho.

Hi mrsrod and Chesty. Thank you for answering.

I have had no symptoms at all so it has come as a shock (I was originally sent for an x-ray for a chest infection and they started to find this).

I agree Dr Google is not a friend - I read something yesterday that said my type of cancer cannot be treated and it did upset me somewhat. I have a grown up son with Aspergers who is doing up his first house and is moving out in about 3 weeks, and a brother who has lived with me for 23 years. I have a good friend for support.

I really need my Mum (!) but she has memory loss through age and although I've told her a couple of times I am poorly she has forgotten the next day. She would be mortified to know I was going through this without her support. She has been my best friend all my life.

I am hoping the hospital really really means it when they told me I will be told early next week what is going to happen - but I must admit that so far they have shifted themselves unbelievably fast for a local hospital 'out in the sticks'.

Will keep you posted. Many thanks.

Hi Whether. Not quite the news you were hoping for there, then. First of all, do step away from Google. It is not a medical researcher and knows nothing at all about the latest treatments and odds. Cancer treatment for liver and lung has changed almost completely in the last couple of years....and there's a ton of different treatments out there. Any and all survival info on google is hopelessly out of date, now, so don't bother reading it. I read up on cancer every day. Not a doctor - just a breast cancer survivor (nearly five years) and autistic, so have the sort of brain that loves data and statistics and charts etc, so reads the latest info from the research teams, as it happens.

You need a really good specialist hospital. Your local one may be lovely, and fast - but there are hospitals with consultants who spend every day reading their new research - for precisely what you have. They will know the absolute best plan. So do ask for a referral to the best of the best. Your own team should be happy to work side by side with such a team. The big London hospitals for example. Macmillan helpline can tell you what's what, I'd think.

Treatments may include surgery, radiotherapy, cryotherapy, heat therapy, nanoparticle chemotherapy, immunotherapy - and about half a dozen different combinations of those. Mostly, even rudely behaved cancer can be persuaded to shut up and keep still, these days. No guarantees, and the treatments won't be a lot of fun...but there's nifty stuff...and new stuff being released every year.

Also, ask for a personalised genetic profile of the cancer. That will help them tailor the treatments.

Sad news about your Mum, also. Really hoping new research into memory loss starts showing good results very soon.

Keep talking with the lovely folk here.

Thank you amber - your bit about 'rudely behaved cancers being persuaded to shut up' made me laugh for the first time for days.

We are very very rural and our next hospital is 50 miles away - London is 250 miles and Bristol 120 miles. So specialist hospitals are few and far between down here in the West Country. No doubt I will be put in touch with Macmillan soon and will then get people to talk to. I will keep in touch. Thank you for making me laugh.

Hello all, waiting for the chemo sessions to start. They want to check that the swelling in my post op affected breast is ok before chemo. In the meantime I am trying to "enlighten" myself so as to be well prepared for what comes. Although I ask myself can anyone really be prepared!
Those of you have had chemo and have DC, may I ask about how you dealt with the issue of infection seeing as it is going to be hard to keep my DC away from me if they have a cold at any time. I mean just last night my DS aged 9 had an upset tummy and came straight to me in the middle of the night. I am worried about how to deal with situations like these later because I realise I am supposed to keep away from sick persons etc. but how do you keep away from your own children?!!! Any experience with this, suggestions, thoughts, advice you could share with me is very much appreciated after having read the serious medical stuff:(

Can I say hello. Went to docs a few weeks ago due to spotting between periods. Actually only happened once and it was two bright red spots of blood and I felt what was like a hormonal surge (can't think of another way to describe it). Anyway doc decided to refer me for an ultrasound just in case and results show I have endometrial thickening. Now for to have further tests for womb cancer although doc did say it could just be a sign of the perimenapause (which I know I am going through - I think this accounts for the spotting too) Fingers crossed - I suffer from terrible health anxiety and the wait to be tested 4 weeks and then the wait for the results apparently another 4 weeks just seems soo long. I know you ladies have been through it how do you cope with the waiting game ?

Hello amiveryunreasonable, sorry to hear about your ordeal. Hopefully it will be nothing serious. As for coping with the waiting. Well, when you have no choice but to wait, there is hardly any heroism in it! You just wait and try to surround yourself with the right people and keep yourself busy. I did not have to wait as long as many others for the unfortunatley bad results, but I did wait and yes it was torturous. Not knowing is so hard. I hope you get good news after this.

Hi amiveryunreasonable,

Sorry you have to go through this, waiting is torture and no matter whether you go private or nhs you will have to wait. My only advice is to keep as busy as possible. Tasks that are laborious and absorbing are best as they help you forget for a while. I find reading is helpful, something easy to read again that helps to make you forget. I find it keeps me sane just having those precious minutes of not thinking. Family and friends help immensely. Have my mx next week so am doing the same at the mo good luck X

royal hope chemo went ok ( as ok as can be)

Waiting indeed sucks AmI hoping my appointment is good news tommorow, feeling anxious.

Chestynut thinking of you tomorrow ! - xxx. A praying for good results. So tired tonight as no sleep last night - having a very large glass of wine to hopefully sleep well x

H¡!
I was diagnosed with BC lasy July and had a mastectomy. I am now 9 months into what is supposed to be 10 years of Aromatase Inhibitors - have just changed from anastrozole to Letrozole to see if the side effects are more tolerable.
I am really struggling with them at the moment. Joint and muscle aches are horrendous - and I frequently get restless legs - and arms - and everything else which prevents me sleeping. I have put on loads of weight, and my libido is non-existant, although as my STBXH dumped me last year that is not a great concern.

How do you cope with the side effects? I can't face another 9 years of feeling like this.