Tamoxigang thread 50 with summer sun, sangria and maybe even some sand

[foofooyeah]

Welcome to thread 50 .... Yes FIFTY.
Lots of us are rising 50 so rather apt!

Oh poor you, that could be quite a wait and you have my absolute sympathy for that. It drove me crazy a few weeks ago. What I don't understand, or want to accept, is how you can start off with one sort of bc but then you can get a different kind too. What you are talking about is all new to me too so I can't offer any help, just hand holding. I'm sorry you have all this new worry.

Marshy, oddly, DCIS with microinvasions has a slightly better long term result than just DCIS in recent studies - possibly because of the more wide ranging treatment as a result. Both have excellent long term outcomes at or around 95%+ success after the usual 5 years. And of course that other 5% includes all the people who are very elderly or very unwell with other things or whose teams aren't quite as well educated as others. Not that any of this stuff is easy to contemplate... It's doable though.

FEC and hair, elporto? Day 17, more or less.

Hi amber
I wondered if you were out there!
That is reassuring news.Do you have any idea what the likey treatment regime will be for me and how the decisions are made? My surgeon gave me lots of time to ask but I was taken by surprise and was on my own as well so no one to help me out. She seemed to be saying that there would be no further treatment if the results came back her-ve. I'm not sure if that's a good thing or not.....Feel such an idiot with all this

Hello all! Not been around much lately but hope everyone is doing well. Will try and catch up with the thread.

I have a question Amber I've read a little on Dexa scans recently and have had contradictory advice regarding Tamoxifen and bone thinning. Do you have any knowledge you could share on the subject?

I've now had two counselling sessions, cried pretty much all of the first session and half of the second however after the second session I did feel like I had made some progress.

Marshy, all depends what the results say. They may bung you on a long term tablet or two, for example. Once you know the full set of results, we can have a better look at what's what.

Mummywheel, www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/osteoporosis-risk-and-hormone-therapy is a good summary of the current thinking. Generally tamoxifen doesn't do major harm to bone density. If you take a bit of extra Vit D and eat a good diet with calcium in it, and do some weight-bearing exercise, it'll all help. Definitely discuss options and other nifty stuff with the team.

Thanks elporto, am busy getting myself all geared up! My hair started to come out a week before the second chemo but my friend's hair hung around until afte her second lot.

Marshy sending you a big hug. Am afraid I don't know much about DCIS but hope you get the answers you need soon.

Mummy glad you feel you are getting somewhere with your counselling.

Ok amber thanks for coming back to me - will have to be patient which is not a strength of mine.

Mrs thanks for your kind words

X posts speedy. Thanks and good luck for Weds

Oh Marshy it's awful going to those meetings at the hospital, I'm sorry it is not what you hoped. However the lack of lymph node involvement is really great and I hope you can hang onto that until you know more. My thoughts are with you, the waiting is awful. Cancer: the gift that keeps on bloody giving eh.

Marshy sorry you're in limbo it's horrid when you don't have the full picture. Try not to google and let your thoughts run away with you. Glad Amber has helped.

Elporto think mine started to fall out around day 17, it started with a tight feeling like you've had your hair in a too tight pony tail. Fingers crossed for yours

Mummy wheel nice to see you :) glad the counselling is going well I'm sure they see a lot of crying.

Thanks amber x

Elporto my hair also started to fall out just before second FEC.

Marshy really feel for you, waiting is horrid.

Amber, do you have any information for bone thinning on arimidex rather than tamoifan? thx

Hi ladies, just checking in to see how you're all doing. Hope you get some answers soon Marshy.

I'm doing ok. Had a fairly unproductive meeting at the Marsden last week, which was disappointing. My consultant was pretty surprised at their response. I think he thought they'd be a bit more progressive in their thinking, but their approach seems to be to sit back and wait for the melanoma to re-emerge, whereas I gather some of the leading thinking in the USA is to tackle it whilst it's down. DH and I came away from the meeting feeling pretty deflated. For any of the immuno-therapies to have a chance at being successful I have to be well, and last time the melanoma was in control I was in hospital vomiting constantly.

On the plus side, Dr A (my consultant) has managed to obtain funding for a new drug, that offers the best hope for people like me. Only the second hospital in the UK to have access.

www.cancer.gov/clinicaltrials/results/summary/2008/atac-bone0308 is a useful summary of Arimidex and bone thinning, and how they stop that happening with various potions.

Beccajoh, that's not the most proactive meeting in the world, eh. Do have a go at curcumin, lactoferrin, Vit D and (if safe for you to take) low dose aspirin. All will help subdue cancer to some extent. Which drug does Dr A want to use?

Ipiluminab is the next line of treatment then the PD1 he's just got funding for. Initially he wants to try and get me on a mek inhibitor so move me from vemurafenib to the dafrenib/trametinib combo, although it might not be possible as you're not really allowed to do that. He thinks some of the side effects I've been having might swing it, though.

I'm taking vit D already but I'll look into the others

Hi all
I'm having a miserable time, fuelled by googling. Have convinced myself that I am doomed. Feel close to panic although have spent the day in a haze. A friend came round this afternoon and that helped a bit. I have no further contact with the team until Friday afternoon when I might get some more results and then next Weds when my lovely BCN is back from leave and I can talk to her and maybe get some perspective. I think this is the worst I have ever felt.....

Marshy sending you a big hug. We've all done it but try not to google as you'll only convince yourself it's the worst case scenario. Whatever the results there will be a treatment and you will feel better once you know what's going to happen honestly :) x

Hi Marshy, you're not alone with this, we have all been where you are and it's the absolute worst. I know it's hard but please step away from Dr Google or you'll drive yourself insane. Can you make yourself a hot drink, have a bath and maybe take a sleeping tablet to help you get through tonight? I know the night times can be the worst, I am guilty of posting on here at 3am but it does help. And maybe try to plan some distractions for the next few days if you can. Sorry, I know this is all very cliched advice please know that we are all here for you and holding your hand.

Hand-holding here Marshy. Try and stay away from Google if possible.

Hello All, not posted for a bit, been steadily feeling fitter and stronger since last cycle of chemo and been busy catching up on some of the things that have been seriously neglected over the last few weeks (mostly housework). speedy hope I catch you before you leave for hospital. Best of luck, after chemo It will seem like a walk in the park. Wet wipes, ear plugs and lots of downloaded programmes are my tips. My BCN turned up with my softies so needed a bra to pin them in and also gave me a very attractive drain bag. That might be particular(peculiar) to Plymouth.
marshy sorry you are feeling so worried and you still have quite a long time to wait. Ignore google and listen to amber more accurate and much more reassuring.
Welcome snowflake things get so much easier mentally as you get more of the facts and can feel a bit more in control - keep us posted.
ssaver, glad the op went okay. I had a picc line rather than a portacath, (through the arm rather than directly into the chest) I was very grateful for the simplicity during chemo and I have rubbish veins in my hands. Did need flushing out every week, though, and difficult to shower properly - got through miles of cling film. I had long hair and didn't bother with a cold cap, my chemo nurse suggested it wouldn't be much help for the regime. Losing your hair is tough but when else to you get the chance to try out a different hair style or scarf everyday - I will miss my wigs when I don't need them anymore.
elporto glad you have come through chemo no. 1 fairly unscathed. Long may it continue. Do you move onto FECT at some point? I lost my hair on day 17 exactly as predicted but my oncologist did say it was partly down to the growth cycle of your hair. I had mine shaved as soon as it started going and donated to a charity that makes wigs for children. I still have a little bit of stubble so if I hadn't shaved it, I guess I would have some attractive stray wisps left - not a good look.
lily hope the blood transfusion went well and did what it needed to do.
becca sorry your team aren't more reassuringly proactive - the new drug founds promising though.
Hello to everyone else and good luck with wherever you are at. I have already had my marking up off rads - 2 new tattoos to go with those from 1985. I was surprised that did it only a week after last chemo but they have some more investigative work to identify where they can point it without duplicating the dosage from previous rads so will be a few weeks before the actual rads start.
I do have a couple of questions, if any of you have waded through this post. Those if you who suffered from neuropathy, did you also found that all of your skin felt a bit odd, particularly nods and face. Slightly numb but also all clothes feel a bit damp, when they aren't - ring any bells?
Secondly, I gave been given my first lot of tamoxifen with the very vague instruction to start it a couple of weeks after chemo. When did you all start taking if and when is the best time of spray. I am already suffering from hot flushes from the chemo and so would like to minimise the drug induced ones.

buns the advice I was given wrt tamoxifen was that I should do chemo and rads first. They don't mix too well.

speedy good luck for your surgery today. When I had mine I was amazed as I only seemed to be asleep for 1 sec .... But it was actually 5 hours.

marshy no words of wisdom but a big old hug for you.

elporto I kept hair on FEC the whole way through and cold capped. But cold cap is grim, makes me feel sick just thinking about it. Docetaxol though completely wrecked my hair, and it still hasn't recovered properly.

Morning all. Thanks for all the good wishes. Got up very early so I could fit in some breakfast. Am getting a bit apprehensive but thanks for all the reassurance. I have my bra at the ready but also got the sports bra as suggested in a slightly bigger back in case my one is too tight.
Buns- I will get bags as well to carry the drains. No idea about tamoxifen sorry.
Foo my op is about two hours but wondering what I will look like with expanders and some skin!
Marshy thinking of you. Hope you got sleep and feel a bit better today.

Would like to say hi and respond to everyone but am getting twitchy so need to go and do something- will start by making packed lunches.

Good morning speedy, try and treat it as an excuse for a rest. One other thing, I did suffer really badly from indigestion from the GA, if the same happens, don't suffer in silence or expect normal gaviscon/Rennie to work, ask for the hard stuff (omeprazole). See you on the other side.
Thanks foo I have had some strange advice from my onc - he does tend to be a bit distracted so will maybe hold off the tamoxifen until I have double checked.

Buns I have what I now believe must be peripheral neuropathy (they thought it might be B12, but that's fine). It was a risk with my chemo, but I didn't notice at the time as it also made me extremely cold sensitive so I was always tingly anyway! Now it's just my fingertips, the end of my nose and my feet, but I also get the wet clothes sensation you describe. I thought I was just going mad :) I only get it on the front of my left thigh, no idea why!

becca sorry that your appointment was a bit useless, but glad that your other doctor is more proactive - could you just see him instead of the other one? The various drugs sound positive, it's good that he has lots of ideas :)