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23rd **TAMOXIFEN** thread

999 replies

MaryAnnSingleton · 01/05/2012 15:20

oh my !

OP posts:
Gigondas · 17/05/2012 16:22

Hey snoopy- will leave the results to others but can talk about rads as had nearly 4 weeks. It's knackering and makes you sore (my soreness only just starting) but doable .

Your dh is a funny manHmm - defo do not google!!!

Back and resting from tests. If my dad says a place is grim, it must be. Some poor man coughing his lungs up and needing to go and lie down all time on gurney in corner of waiting room.. Was a lovely experience .

Gigondas · 17/05/2012 16:24

topsy IMe a wound infection is as sick as I have ever felt with anything . And ga aren't much better so no wonder you are feeling blue.

It did take a few days to get anti b to kick in too so hope they work soon.

smee · 17/05/2012 16:28

Snoopy, glad you're back. You must feel exhausted. I'd say results have a lot of positives Obviously stage 3's not great, but it's a heck of a lot better than 4 and it's early stages, so yay for that. A lot of us are 3 - me included. I think if you're pre-menopausal it's v.common to be 3. Nodes result really positive too. Rads, well I had 5 weeks, so you're less than me! I had FEC and Tax - think that's a v.normal combo and tried and tested. Definitely don't Google or we'll be over with the duct tape.

Heck Gig where were you?? Does indeed sound grim. What's next?

Gigondas · 17/05/2012 16:32

Was on private clinic in Harley street. So I would say private not better

snoopygirl · 17/05/2012 16:45

gig sounds awful bet you'll be glad to be home! What i didn't realise is rads is every day!

smee I feel ok at the moment, don't know why didn't sleep. I am not worrying about grade too much. I was expecting it, as read grade 3 is standard for age. That's what i've got so just got to get on with it.

I really need to have a little list so can see/remember where you all are with things.
x

1stepatatime · 17/05/2012 16:51

Ned - thanks for the info, it's really helpful. I'm having FEC-T, 3 x FEC followed by 3 x T, every 3 weeks which I think is pretty much the norm.

Snoopy - re Rads, think I'll be the same as Smee. Been told it will be every weekday for 5 weeks.

Gig - glad you're back home, after what sounds like an unpleasant experience to say the least. When do you get your results?

Waves to everyone else :)

Gigondas · 17/05/2012 16:59

It's every day but holidays. It isn't too bad as treatment goes- I quite like the radiographers as they are a laugh. Although did ask another one who wasn't clearly hungover off his game to press the buttons last week Grin

NedSchneebly · 17/05/2012 17:25

1step same as me then. I've got my second of the T (Taxotere) on Monday, and honestly, its hard but manageable.

snoopy I'm grade 3 too. I am having 4 weeks of rads once my chemo is done. 3 weeks is standard, I think, then they do "boost" weeks on top of that, depending on circumstances.

Bloody hell, gig that sounds deeply unpleasant. Hope you are resting up a bit.

smee · 17/05/2012 17:35

Catch up for Snoopy: I was diagnosed in March 2010 aged 44. Grade 3/ stage 3, 1.7cm lump, but lots of DCIS too, so mastectomy and nodal clearance. It was in 4/ 22 nodes. I had 3xFEC/ 3xTax and 25 Rads. Am on Tamoxifen now as tumour was hormone positive. Then talked them into second elective mastectomy last October. Have had implant reconstruction, so I now have rather perky prepubescent (nipple less!) breasts. Grin

On rads, I think it depends where the tumour was in terms of what you get. I had a lot of DCIS and the tumour was close to skin surface, so they really blasted it, hence the 5 weeks/ 25 shots. I was told Rads was more important for me than chemo.

Gig, you'd expect a better class of grim in private clinics somehow.. Hmm

LimeJellyforBrains · 17/05/2012 17:48

Snoopy I was dreading rads with it being every day and about half an hour's drive away, but in the end I really enjoyed my 'commuting'! I dug out lots of CDs I hadn't listened to in years and had a great time singing along Smile When they say 'every day' that means weekdays only - you get weekends off. An early slot is good so you can get it out of the way and get on with the rest of your day. But be warned, for some reason you do feel really shattered - I found my eyes were closing by about 6pm and I could hardly wait for the boys to go to bed so I could too, and then I slept really deeply all night.

NedSchneebly · 17/05/2012 17:49

Where I am for snoopy diagnosed January 2012 with grade 3/ stage 2, 2.4cm tumour with DCIS too. Had lumpectomy, and nodes tested but all clear. Am about to have chemo #4. Having rads and then tamoxifen.

amberlight · 17/05/2012 17:50

Hi all, still on phone connection in North. Hugs all round.
Snoopy, not bad results. Especially with need that they have new drugs for sorts that are not hormone positive.
I was grade 3 her+ 2.3cm or 4cm depending who you believe of the specialists. 4 lots of Fec 4 lots of Docetaxel, lumpectomy and 18 rads. Chemo killed the lot, for me, it seems. All doable.

MaryAnnSingleton · 17/05/2012 18:35

snoopy I think the results don't sound too bad - you didn't mean stage 3 surely, but grade 3 ?
Catch up about moi - diagnosed in April 2009 aged 50 with 2.4 cm grade 2 invasive ductal carcinoma, nodes clear ER+ rads and tamoxifen.
I had about an hour's journey to Southampton for radiotherapy- fortunately I got hospital transport which was great - a bit of hanging around sometimes waiting for another lady but usually done and dusted by early afternoon (appointments at around 11 am)
gig am shocked at private clinic being grim - hope you are resting and recovering from your ordeals.
Loads of gentle hugs for topsy - poor love.
smee eek at cost of taps !! Went for one slightly less expensive than the one that most resembled our present tap - it looks nice and sleek anyway...

OP posts:
1stepatatime · 17/05/2012 18:49

Round up of my situation for Snoopy - Dx March 2012, had mx and lymph node clearance 3 weeks ago, lobular 6.7 cm, 11 lymph nodes affected, grade 2. Awaiting CT scan, start chemo in June, followed by 5 weeks of rads and 5 years tamoxifen.

Gigondas · 17/05/2012 20:45

How does chemo tiredness compare to radiotherapy as I am early stage pregnancy tired (If that makes sense) and don't much fancy months more of that...

snoopygirl · 17/05/2012 20:48

Thanks ladies that's really helpful, got you all in my litle book. I'm not stalking you honest Grin
It's really helpful to understand where you all are with things. On the Miscarriage thread we had on ongoing list there were so many off us and we used to update it every few days.

I am a bit worried as I am picking up HER neg is not so good as positive? I am scared of reading too much even on Macmillan website.

Sorry mas grade 3 early stages.

ned how is chemo for you? Tell me honestly are you up and about? Chucking all time what else Have i got to look forward too? Smile

lime I was told everyday including weekends as "cancer doesnt' take a day off"!

1step sounds bloody gruelling

smee was reading about 3d nipple tatoo the other day. It's on youtube!

Gigondas · 17/05/2012 20:49

Really every day incl weekends - that sounds odd as most rads dept only do weekend emergencies.

And step away from google even macmillan. The closest answer you are going to get on your status is from your medical teams and even they don't know for sure (better or worse ) how things will pan out.

Gigondas · 17/05/2012 20:54

I am not sure I would like a list here.

Think it would put me off coming here as it is a place for support from those who are going thru similar but I don't really want to labelled by what kind of cancer I have etc. i don't really want to be labelled thus way and it's not helpful as none of us are stats.

graciesmall09 · 17/05/2012 21:01

gigs your day sounds grim. I hope you are resting now. I can't comment on the chemo/radio tiredness as I have only had 2 chemo but I'm not really finding the tiredness a problem, the sickness yes.

My roundup for snoopy Dx March 2012 with 1.6 cm Grade 3 (can't believe I don't know whether lobular or ductile no-one told me). Sentinel Node biopsy clear. According to onc I'm Grade 3/Stage 1. Had lumpectomy March 2012 with clear margins, having 8 x FEC followed by 25 rads, Herceptin & Tamoxifen as ER/PR/HER2 positive.

Topsy What a rotten time you are having. Really hope the antibiotics kick in soon. Will be thinking of you.

Gigondas · 17/05/2012 21:04

I wish you would pass on scone recipe gracie as mine never work.

jchocchip · 17/05/2012 21:19

Thinking of you topsy, hope the antibees kick in soon.

Snoopy I was dx August 2011 grade 2 no node involvement invasive ductal. Had lumpectomy, snb rads and tamoxifen.

Watching new tricks. then Brew and bed ... :)

graciesmall09 · 17/05/2012 21:20

If you really want it gigs I'll pm you tomorrow. It's really easy and foolproof because I am a rubbish cook

NedSchneebly · 17/05/2012 21:22

snoopy you get into a pattern and figure out when your good times are. On th FEC I felt spaced out and wobbly for about 5/6 days. I was nauseous but not physically sick. The first cycle was the hardest: I was pretty miserable, and was very achy, but I got better anti sickness for the second cycle onwards and the achews and pains were less. By the second week of each cycle I was back doing the school runs and driving. Still very tired, but doing OK. By the third week I was on reasonable form, going out for lunch with friends and supermarket shopping etc. Honestly, the hard first few days go pretty quickly, particularly if you get decent anti sickness meds and you are sensible and get lots of rest. Just listen to your body and do what you need to do. Eat a bit of whatever you fancy, don't worry too much about what it is. Drink plenty of fluids, as it flushes the drugs through your system. I found fizzy stuff settled my stomach, diet coke, fizzy water etc.

I didn't do so well on my first Docetaxol, so won't comment too much on that one! I'll let you know after Monday how i get on with the next one.

You'll do great, love. Stick with us and we can see you through it all x x

Gigondas · 17/05/2012 21:27

Yes please gracie Grin

snoopygirl · 17/05/2012 22:07

thanks everyone. Ned what's Docetaxol? Is that the FEC-D part of drugs? spose I'll find all this out at pre chemo meet. Sounds charming.

gig Just saying what we did over there. There was alot of us. I understand what you are saying and wouldn't force anything that someone wasn't comfortable with. She definitley said everyday as cancer doesnt' take day off, just checked with DH is case was imagining things!

Off to Oxford again tomorrow for Bone PET CT scan. Apparently it takes 1.5hrs and I will be radioactive for 6hrs after and told i can't hug son! I might have to stay away from Kitten too as I may nuke him he's so small!
Told DS and he was v good and he made me a special bed with teddies in spare room for when i'm poorly Smile