lalaa's breast cancer update thread

[lalaa]

Have been posting all over the place and with updates from time to time and have decided would like one place to post!
So, have just done chemo number 4. feeling pretty sick today (two days after administration) but that is par for the course. the physical aspects are easier to manage than the emotional ones. this situation is a huge strain on my dh, who has to become a single parent for 7 - 10 days out of 21, looking after dd and me. and it's also hard because we usually work together and i can't be there all the time right now. some of our friends and family have been absolutely amazing, and others have been disappointing. we continue to learn so much from this whole thing.
it looks as though I'll only have to have another two chemos before heading for radiotherapy, herceptin (funding allowing) and hormone treatment. might have to go down the cutting off my ovaries route in order to give me the best possible chance, but not sure yet. and that will be a whole other thing to get my emotions around - one thing to choose not to have another child but quite another for the option to be taken away.
hair still non-existant (cod!) but hats and scarves are doing a great job. haven't worn my wig at all (too self-conscious!). can't wait for the weather to start getting warmer as am permanently cold (due to lack of hair, I think!).
and I think that's it for now.....

lalaa I'm not really sure what to put. But that is a very interesting and well-written post. I wish you well with your further treatments.

Do you think you could be feeling the cold because your body has taken such a battering from the chemo as well as the lack of hair.

Oh, lalaa. I hope at least you feel better soon.

The chemo affects you feeling warm, it's something we used to give grants for (extra heating) when I worked for Macmillan.

It sounds like you are a very brave lady, and your Dh is pretty special too.

When do you have to apply for herceptin funding, or has that been done already?

peachy, that's interesting to know - makes sense too. herceptin funding was applied for in november, but PCT have just said they are waiting for formal application from my oncologist. absolute load of cr*p - i saw the original letters from my onc and I know that the PCT are playing games. am hoping to hear really soon though. and then I'll send them a blasting off letter.

Message withdrawn

Four down, more than halfway...wow, well done you. I've heard that herceptin is 'easy' compared to standard BC chemo, and radiation (though it has its own PITAs no doubt) too. So hopefully this is you 2/3 of the way through the toughest part of TX? Physically, anyway...
I can't help thinking 'funding bloody better allow' when I read your post, still makes my blood boil to think of women not getting it who might be helped...
Let us know if 'they' don't cooperate, the MN Hoodies will sort 'em......

I wish you well lalaa. My friend had her last treatment almost exactly 6 years ago. She is fit and well and has been given the all clear for the last 4 years.
I hope you feel strong again soon.

Re ovaries, was your tumour ER and/or PR +ve?

Moderately ER+ and not really PR+

Lalaa not sure what to say aside from well done, you are a trooper.
Take care of yourself and hopefully some joy is just around the corner for you.

I'm sorry...just realized its probably nosy and rude to be asking ??s like that. Its just that a friend had a mildly ER+ve sort that was deemed ok with 'just' hormone treatment for a few years..hoping the same for you. Either way, probably not the time to be taking all that on anyway...(she says, having brought it up )

Sending lots of good vibes your way.

lalaa, just to wish you all the very best with sorting out the Herceptin and other aspects of your treatment. Sending you and dh and dd lots of encouraging heat-charged vibes.

Message withdrawn

Sorry to hear you're feeling rough atm, Lalaa. Ds1's mil had her fourth chemo yesterday, as well. Haven't heard yet how it's gone, as she prefers to have a few days to get over it before talking on the phone. I'll be thinking of you both and hoping for the best.

lalaa, I´m sending my positive vibes too. I hope you´re not feeling too rough. Good look with the rest of your treatment, still can´t believe you have to fight for certain medications. Take care x

good to hear from you, best wishes.

Ah lalaa, I was just looking for the other thread to thank you for your reply and I found this. I'm so sorry you're feeling so rotten, it must be so very hard, and you're amazingly brave to be posting all this. I am still rooting for the herceptin, and very that you're not just getting it automatically. I read the other day that letrozole (Femara) is better than Tamoxifen for HER2+ breast cancer by the way- is that what you've been given (sorry if too nosy, feel free to ignore me)

xx

tamum
tamoxifen is the standard hormone therapy for pre-menopausal women but it isn't as good as femara or arimidex. my onc wants me to have arimidex (close cousin of femara), which is only suitable for post-menopausal women, so we will have to see whether chemo takes me through the menopause, or whether we have to do that medically or surgically. we're not there yet though.....lots of waiting around still to do.

I know it's very complex, lalaa. This is the abstract of the paper I was thinking of, it's by my collaborators: abstract . I would definitely push for letrozole or a similar drug.

thank you for that tamum. the other drug mentioned in the article is arimidex by it's proper name, i think. i didn't realise that my HER2 status had a bearing on tamoxifen's efficacy - i just knew it wasn't as good. so really helpful.

It was news to me too, but I thought of you when I read it. I'm glad it was useful, anyway. The first author of that paper is a really good guy, very active in research.

Message withdrawn