Tamoxigang thread 49 when Sumer is y cumen in and we get out the Pimms

[Lilymaid]

New thread!

amber if you're still around, I was asking the other day about the amount of time tamoxifen is prescribed for. I've heard of 5 years being standard and now ten is coming to be recognised as useful. I've been recommended 2-3years then a change to something different. Probably going through the menopause in the next couple of years was the simple explanation but I'm confused. Can you throw any light on that, I will of course ask but I'm not due to see a doctor for a few weeks.

mrs - once they confirm you have gone through the menopause you will get a different (but equivalent) drug and the total time to take them for will probably be 10 years.

Just wanted to post that DS2 got a 2:1! So pleased for him as it has been a hard struggle for him academically, not helped by being diagnosed with Chronic Myeloid Leukaemia in the autumn of his 2nd year.
He's off looking after disabled people as his summer job, and there's a letter from the hospital for him waiting at home ... should I steam it open? It is probably his blood test results. I'll probably wait until he comes home for the weekend and then stand over him as he opens his post!
I'm now on my 8th cycle of full strength Capecitibine and managing to work full time with a four hour commute each day. So if any of you end up on Cape, it isn't necessarily as bad as you might fear (and for me a lot better than Letrozole which made me achey and very tired).

Thank you lily, I didn't realise tamoxifen was a premenopausal drug. How did I not know that? There are a lot of drugs mentioned on here that I've never heard of before, but I feel very ignorant not knowing that.

Welcome to the new ones again, sorry you find yourselves here but it's very friendly.

nelson are you around? How are you feeling after your op?

Well done to your DS2 Lily it's great to receive good news

Welcome Lady and great news about clear nodes

Really Thanks for sharing info on the menopause magnet - if these hot flushes I'm experiencing carry on I will be investing in one myself

A big well done to your son lily and glad the drug is letting you work.

Hope the op went well nelson.

Have just got back from first dose of docetaxol. In that strange bit where not sure what to expect. Still felt sick as I went through the doors of the hospital; I wish my brain would cut it out!

malt how is end of term going? How much longer?

I didn't know tamoxifen was a pre menopausal drug either, no one has mentioned the menopause to me. Had a coil for years before dx so didn't have periods so how do I know if I'm menopausal or not ?? I was just told it would be tamoxifen for 10 years if I get that far

Speedy 1 more week I'm knackered !

Great news about the 2:1!

Amber, yes you're right. My consultant says there's some really exciting stuff due to be licensed in the next couple of years. feels like an absolute age to me but I know in research terms that's like next week! I used to work in medical research but at the really early stages, either cells or mice...

Lady great news about the nodes being clear!

I've had quite a good day. Still stuck in bed of course but MIL has been here looking after the kids and she's made sure they've been up to see me plenty of times. I undressed my baby boy for his bath just now and changed his nappy, which is the most caring I've done for him in weeks V small things but it was bloody lovely It was my daughter's 2nd birthday yesterday and we had a little tea party with her grandparents, my SIL and DD's cousins, who are 3.5 years and 21 months.

I've got a new hobby of entering competitions online. Must be getting really bored of being bed bound!

Mrshodgilbert, www.ncbi.nlm.nih.gov/pubmed/24074782 might be a handy one to give some basics.

Thanks amber, you're a mine of information. Still a little concerned that I'm being offered five years of treatment when recent thinking seems to indicate ten is better. Wouldn't like to think that's a financial decision or that my team are not implementing new recommendations. But it could be different again in five years.

In the world of cancer treatment, things change every two years (generalising). With all the personalised genetic-based stuff being tested, I suspect most people will be offered tailored medicines within five years. I reckon they're offering a good choice for now, then will adjust later when more trial evidence happens.

malt I'm the same as you, I've had a coil for a few years, although still had very very light irregular bleeding. Now I'm on the tamoxifen I haven't had any bleeding, as they said would probably happen, so how will I know I've gone through the menopause? I'm 50 so I guess it might not be long. I noted your last comment above, it's a daunting thought isn't it, looking that far ahead? I just hope the clever scientists keep discovering new stuff that will keep me going.

THanks again amber. I'm going to have to bring this up when I next have an appointment, just to put my mind at rest.

Malt, mrs - your consultant will check if you have completed the menopause with a blood test.

There are a number of post-menopause drugs to take (as opposed to usually tamoxifen for pre-menopause) - eg. letrozole (Femara), anastrozole (Arimidex), and exemestane. But I believe there are more bone density issues with these.

lily fab news about your son and I would open the envelope

mrsrhod you quickly get up to speed with all the drugs etc in a frighteningly short time. And it is fine to discuss and question treatment with Oncs .... They do not mind at all. I think, and I may be wrong, that they tend to follow guidelines and standard patterns of treatment.
Mine was happy to persue more aggressive treatment when I requested it.

becca glad you managed to achieve a couple of lovely things with your baby .... It must be so hard.

I have just recovered from a couple of days of nasty diarrhoea (sorry tmi)
But glad that's behind me (arf)

Foo Are you on docetaxol? If so when do any SE kick in? Had mine yesterday but feel okish at the moment which makes a change from the fec! Glad you are feeling better.

speedy I have just finished my last docetaxol (of 3 cycles yay!). I have my treatment on a Monday and the SEs don't kick in fully until the Thursday.

Mine included chronic exhaustion (including double vision as if my eyes are too tired to focus)and a rash (under breasts, between legs and bizarrely on eyelids).

My eyelashes fell out after the 2nd docetaxel over a few days and I i had thee most horrendous eye infection and styes (never had a stye in my life and had six in the space of about three days).

Also just musing as I am planning a post treatment holiday. What do you do if you need to renew your passport (thankfully I don't). At the moment I wear a wig, wear false eyelashes and have drawn in eyebrows don't really look much like 'me'. Consequently any passport photo of me isn't going to look much like me for long. Anyone had to deal with this???

Congratulations to lily's son. Have to admit in would struggle not to open the envelope.
speedy I am on docetaxol as part of my TAC treatment, it is the T bit as another name for it is taxotere. My nurse did say that that was the drug of the 3 that would cause most SE, but mine have been manageable. No sickness, very bad aches and pains and exhaustion ( felt about 120) but only for a couple of days. Kicked in during the night of day 2. I have been feeling pretty much normal from about day 6.
So, today, I am going into have my hair shaved off. Started coming out yesterday (day 15) which was the exact day that other forums suggested for TAC, but is coming out in handfuls now. Want to get if shaved before my scalp is too sensitive. My hairdresser is off today but is coming In especially this evening to do it for me, which is really sweet of her. I thought I had come to terms with the hair loss, but apparently not and have cried today for the first time since my diagnosis. I know I will feel better once it has been done, unfortunately I have onc appt today so have to go out with scabby hair, also get my CT scan results, so all in all, a bit het up today.
Going out this evening so hope I can work out how to get my wig to stay on.
I do have a couple of nice wigs which I am looking forward to wearing, this is a picture of my dog, Mungo, modelling one of them - unfortunately it looks better on him!

Thanks feline. Glad you have finished- good news. Am hoping it will hold off until after my birthday tomorrow. Sore eyes don't sound nice! Did you have to get rash checked over by doctor or is it a normal thing? Did you have to get drops for eyes? Did you have to take anything for muscle aches? Sorry, lots of questions there!

Not sure about the passport thing. I know what you mean about not really looking like yourself. I would go for it anyway, you deserve to go away.

Cross posted bigger buns.

Thanks for the info, it is good to have an idea, although I know everyone is different.

I cried too when my hair went even though it wasn't the thing I most worried about. Now I have got used to it. Was sat having chemo yesterday rocking the bald look as none of my scarves matched my dress and I got too hot in the wig! Your wig looks lovely by the way and am sure will look just as good on you as it does on Mungo .

Speedy. My onc gave me some artificial tears for my eyes but re the infection I spoke to my pharmacist and got some antibiotic eye drops OTC. My onc just said if the infection starts again to use the antibiotic eyedrops again. Sorte eyes are a nightmare. I love reading but it was too uncomfortable and even just trying to watch tv wasn't good. I didn't need anything for my achy joints as it really wasn't bad enough but my onc said she would have given me pain killers.

The rash is sadly normal so didn't get it checked out. The only concern they had was that I then had the runs (not connected to the rash) and it was really impressed on me that I had to check my temperature and come in if it went over 37.5. It did go to 37.8 but not for long so didn't press it further.

My nails have been so far unaffected. They've not even ridged but they have been covered in bright pink nail varnish since I started docetaxel so don't know if the advice to paint them worked or I've just been lucky.

consider I do really feel for you. losing my hair was by far the worst part and I cried solidly for about 5 days. I thought I'd be fine and was even looking forward to wearing my wig but the reality was somewhat different. I think it just takes time to get used to a 'new you'.

I'm now fine with my wig and I have even had people say it really suits me and when I grow my hair back I should try and get it to look like my wig. Certainly I now feel like 'me' even if it isn't how 'me' used to look.

Ah buns it sounds like you have quite a day ahead of you. I hope you get good news from the onc and the trip to the hairdresser is not too stressful.

Passport thing - I had to renew my driving licence when I was wearing my wig,so it doesn't look much like me. Also had to show the immigration people my passport when entering Spain wearing a bandana last week and they didn't bat an eyelid.
Hair has started growing a bit so have been out in public with nothing covering my head for the first time in 6 months, feels great!

Shortly after starting chemo I booked a holiday, to have it to look forward to. Today is first day of that holiday!!! We are doing 9 days in Longuedoc, South of France.
And we just got a massive upgrade, from Family Room to an entire bungalow! Pity we are in this hotel just one night...

Enjoy your holiday mom. You must have been wishing for this moment for so long.

wee you must be relieved to be able to bare your head, it's so warm and muggy. Hope you had a good holiday. Did you manage to stay out of the sun entirely?

My rads start on Monday. I'm a bit concerned as we're in Harrogate, along with many thousands of visitors and all the infrastructure that travels with the Tour de France. It's very exciting but getting to Leeds for 8am on Monday could be an issue. It's travel carnage at the moment and its all got to leave yet.