***Tamoxigang - thread number 40!***

[GoodbyeRubyTuesday]

Hello all! New thread as we have almost filled the last one. Help yourself to chocolate chip muffins from the trolley! :)

Kitkat are you eating and drinking little and often as that may help
Is your temperature ok ?

Betsy I had:

Emend - once a day for 3 days;
Ondansetron - one tablet twice a day for 6 doses;
Domperidone - 2 tablets twice a day (have 30 tablets).

last of the Domperidone taken today but not noticed it doing much. I was awful on day 1 (partly psychological though) and then bad as soon as Emend finished.

(previously I had Dexamethasone as well)

I have a Morrisons superstore near me (but not my nearest supermarket) but have never been - will def have to make an effort to go soon

If I had to make a choice, I'd got for T as well as FEC. Cancer is 'semi-intelligent'. If it's one of the brighter ones, it can figure out how to get round three chemo drugs, but not four. But much depends on the type and how your body reacts to stuff.

I have had my onc appointment. He didn't have my results, he could see the pictures but the results had only been dictated not typed up yet. Annoying. I accidentally looked at the pics though eek!

Anyway ignoring that, I am having a week off for my holiday (yay!) and at least another four cycles of capecitabene.

Amber - I think I am down for FEC only due to it being 'locally advanced' - ie. big lump but no spread to lymph nodes or body. However if there's not been much shrinkage on 3 cycles of FEC then he's going to switch. No idea if I'll get any say in the decision - if i do I will bear that in mind though (had read the 4 dugs thing myself). BTW - do you happen to konw if it is a good thing if said lump hurts during chemo (onc keeps asking me)?

Trice - could onc not interpret the pictures then? When do you go back again?

kitkat The drugs were not as good when I had chemo, in fact I don't remember them giving me any since I was never actually sick, and it was certainly usual for me to feel nauseous for a week, and really not eat much at all, in fact my appetite was pretty much done for throughout the cycle and I ended up losing 2 stone (and, unlike now, I didn't have 2 stone to lose.)

The feeling of nausea being induced by any association with chemo was also throughout the cycle, things I eat in the hospital, or even being in the vicinity of the hospital, which was annoying as it is near very nice shops, restaurants and museums, and taking refuge in very expensive designer shops (which are not normally my thing at all, apart from my new birthday handbag ) was one of my coping strategies, a whole new perspective on meeting the customer need for aspirational experiences .

I would certainly pursue getting more drugs and I have wondered since if I should have had some CBT or even hypnotherapy (I now have friend who is v. good hypnotherapist, not one that makes you take your clothes off in public, or at least I don't think so , and she has done wonders with Little Copt's panic attacks). I do still have all sorts of issues with hospitals, doctors, South Kensington generally

Friends on Taxol said it felt like having flu, achy but no nausea and no drop in white blood cell counts, not nice but easier than our AC chemo regime. (I was only one with FAC)

gigs Glad I am not the only on that gets entranced / excited by misted herbs and vegetables

KitKat - I'm on Tax only at present (keeping FEC in reserve) and am prescribed Omeprazole for the stomach and Domperidone for nausea. Haven't had too much nausea though it often feels as though I am on the edge of having it (if you know what I mean). I get the metal mouth immediately after chemo, but no other symptoms until about two days later (will correct this as am having chemo on Thursday so will have up to date information from then!)
My Onc referred me for an MRI scan on Friday and I arrived back from work today at 6:30 to a message that I had to phone up urgently about the scan ... it has been arranged for tomorrow. (This is via BUPA rather than NHS but could do with a little less immediate action - a few days notice would have helped). So tomorrow is blood test in the morning in one hospital, scan in the afternoon at another hospital, the other side of the city. I was going to a friend's house for coffee/lunch but that will now have to be water only for me!

Cop - did the associations stop at some point though? I am generating such a long list of things I can't eat/see/do now. When I was pg all my 'issues' disappeared immediately DCs were born and I had no lasting effects but i worry that this may be different.
Sadly I can no longer watch Grey's Anatomy - have nearly finished series 2 but have the full box set waiting.

Lily - funny about the scan happening so quickly. I am also private but had enough notice to chose my scan day so I can get 2 hospital visits done on the same day. What are your tests for - are they just to check progress?

Cop - what birthday handbag did you go for?

I will be treating myself to a post-chemo handbag but had better wait a few weeks after last cycle to make sure I don't get bad handbag associations !!!

Kitkat- my associations did fade over time. I actually got a hypno therapist to work with me who made me a tape that helped break my issue of feeling nauseous the minute I entered hospital.

Trice- hope you don't have too long to wait,. I never have looked at my scans.

Kitkat I was rather surprised not to get any notice of the MRI, but presume they have the van there on Wednesday and places to fill. I won't see the Oncologist again until September, so it isn't as though it is that urgent. The Oncologist wanted to check my other breast via the MRI, but I really don't want to know the results if it picks up other stuff!
Hypnotherapist sounds like a good idea - one of my friends is one so I may try her if I feel really bad.

kitkat - I think the Domperidone is similar to metaclopromide, which I had first cycle and it didn't do much for me either - onc didn't prescribe it for second cycle, just the ondanestron for longer. As they have had to knock the dexamethazone off your list to stop the high blood glucose issue, they obviously need to up the level for the anti-emetics. I think there are also other drugs they can give you to help with the anticipatory nausea - which is very common. (I'm trying not to think about Thursday for that very reason, and am very glad this is my last FEC, fingers crossed the T won't be so bad) My lump and armpit have really ached during the mid cycle week both times - it's on my list of qu for the onc on Thurs, I'll let you know what he says! (I'm hoping it's a sign of the cancer cells dying and not a sign of them growing!)

trice how frustrating no results, when do you get them? Hang on to the fact that you are feeling loads better than you were. :)

gigs - I agree with what the others have said, they wouldn't be doing the op if they didn't think there would be long term gains for you. Everyone watch out for superamazingrobogigs visiting a Morrisons/Tesco/Waitrose near you soon!

malt I loved the wig, both on you and on your DH!

HND hope you are home with hole nicely mended :)

waves hello to everyone I've missed, sorry for being hopeless at keeping up with the thread at the moment, making the most of my good days. :)

Lily - my original MRI did pick up a few things in the other breast and I ended up with a fine needle biopsy and another core biopsy. Fortunately 1 was a cyst and the other a benign lump so nothing further needed - I suppose the good news from all of that is that I knew I was all clear (other than orignal lump) - more stress at the time though.
Can i ask how come you had your bone scan done (don't think i had that) - was there a reason or is it just protocol in your area?

Betsy - has your lump continued to get softer (I know you had great progress in 1st cycle)?

lily how are your feet ? mine are terribly dry and horrid, not sore or red though,which is good.
Wig looks fab malt
Sorry- am useless at reading and remembering everything.
We had a nice visit to MILs - terrible journey up as stuck in traffic on M1 nr Luton,whole trip took 6 hours and we missed seeing friend in Derbyshire as we'd've been very late getting to MILs where we have to then go shopping to buy supper.
Nice party next door for her best friend's 90th and very delicious lunch out yesterday -saw various ILs. Always seems sad leaving MIL as she looks so tiny and frail.

Kitkat I'm not sure why I had a bone scan done (all done privately though in the NHS hospital). Perhaps the Oncologist was concerned that I might have bone cancer as I had bad sacroiliac pain that started up in March? Anyway, I think the result was that they found that I had bone cancer and that the breast cancer might have been secondary to that or possibly vice versa. So I'm being treated for both and hopefully the chemo will zap both. I'm having injections every 4 weeks for the bones as well - some drug that isn't yet approved by NICE for the NHS, but which the Oncologist thinks is more effective than existing treatment

MAS - my feet are a bit dry underneath (but need a good treatment with some Flexitol) but not hurting at all and not really that different from their usual summer state. My hands, though, are very dry and need vast amounts of handcream so that the skin doesn't look like that of an aged crocodile.

Lily - it does seem to vary doesn't it. Still at least they can treat everything at once for you.

I'm not sure how much 'extra' i get as someone is paying - am sure I wouldn't have had an echocardiogram on NHS (not having Herceptin).
I got a full body CT and an MRI but no mention of bones. Someone helpfully asked me the other day (in a concerned way) if I had had a brain scan - of course that sent me right off and I was ' do I look like I have a brain tumour now then?'

Hmm a brain scan - in my case, that would probably show there wasn't anything there at all.
It is amazing how I've gone from seeing a doctor once every few years and never having anything more invasive than a smear test to having all parts investigated in great depth.

Mas I hate that part of the m1 we always seem to get stuck there
Trice pain about not getting your results
Thanks for all the nice comments about my wig, it's getting close to 2 weeks since 1st chemo so keep pulling hairs from various parts of my body to see if they come out easily, weirdo !

kitkat - my whole breast is feeling softer now (and is definitely smaller) but my actual lumps (all 3 of them) are more defined (and feel smaller) now rather than just one big hard area IYKWIM. The whole breast softer bit makes me wonder exactly how much is going on in there Glad the whole thing is getting the chop TBH. (Another qu for the onc on Thu!)

I'm NHS and I had a nuclear bone scan, chest x-ray and abdominal ultrasound which is apparently a standard practice at my hospital, I was told it's so that they have a baseline to compare to if they need it . I also had a heart muga scan as standard to check ticker ok due to the epirubicin (which can cause heart issues) and a breast MRI (as difficult to get accurate view from mammo/ultrasound). I agree it does seem to vary by hospital/consultant what checking they do.

ah Betsy - my breast is softer with the lump much more defined and smaller (but still large!!) so very interesting.

I'm in 2 minds with mine as if lump does not shrink enough will get the chop (most likely) but if it does shrink will just get the lump out (so smaller op).

Are you still going to push to get both done?