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TAMOXIFEN -the third thread ***

740 replies

MaryAnnSingleton · 26/02/2010 10:40

here we are- will put a link on the old thread.

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MaryAnnSingleton · 26/03/2010 10:59

hope the creme egg ice cream helped RWU

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reallywoundup · 26/03/2010 11:36

ooh i think it did mas! i feel a hell of a lot better today, still really tired and achy, but i am up and dressed!

MaryAnnSingleton · 26/03/2010 11:41

oh that's good...best get some more in just in case...can I send you any of my peanut butter fudge ?

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Pennies · 26/03/2010 11:46

That's good RWU. I'm assuming you ate the ice cream rather than smearing it on the rash. tho I expect ice cream on a shingles rash would be rather soothing!

I'm at the clinic today having my mid cycle bloods done. It would seem I'm neutropenic again (0 neutrophils and 0.1 WBC) so they've isolated me in a tiny room (yay for iPhone) and I'm to sit here until they've decided A Plan.

I expect the plan will be to lessen the dosage but I really want the full whammy to bust the bad bugs. But obviously the chemo is wreaking havoc with my bone marrow.

Not in the best of moods I think.

MaryAnnSingleton · 26/03/2010 11:51

poor Pennies - it really is taking it out of your poor bod. Lots of good thoughts coming to you and as you say,hooray for iPhone

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Cakesandale · 26/03/2010 13:36

Glad you are feeling better RWU. I imagine the creme egg ice cream is a big help, I know the Cadbury's caramel I have just troughed has soothed out a bad morning for me

Sorry to hear you are neutropenic Pennies, thank God for iPhones as you say, don't worry if they cut the dose,sounds like you may be having rather a lot!

Hope you aren't held prisoner for too long, there's a weekend just waiting to be had!!!

Cakesandale · 26/03/2010 14:56

Bloody hell KK, calm down! That's the second week in a row you got an honourable mention in the weekly MN round-up!

reallywoundup · 26/03/2010 15:25

kk if you carry on like this you'll be too 'mn royalty' for us meer mortals i did chuckle over that thread lol!

Kids finished school early today so they have got home and had the holiday de-lousing treatment (comb and conditioner during term time as they pick them up so regularly from kids who's parents don't bother if i used hedrin each time i'd be bankrupt) so end of term we do the whole lot (and me and dh!) with the proper stuff to be sure that we have a nit free holiday!

KurriKurri · 26/03/2010 15:44

its got to be a sign that I spend far too long on here ,

Glad you're feeling a bit better RWU. And hope you are home soon Pennies and SR not feeling too yuck from chemo. Have a good weekend all

MaryAnnSingleton · 26/03/2010 15:59

well done KK !
We aren't on holiday until next Thursday dahn sarf...

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Pennies · 26/03/2010 17:51

Been sent home with instructions to isolate myself until Monday. Coz that's easy with young kids...

sandripples · 27/03/2010 13:43

Pennies - so sorry you are having these problems. It must be a worry. When is your next lot of chemo due or are they having to wait till your counts are better?

Hardly dare say this, but my blood counts were all really good yesterday so I am very lucky on this. Oncologist was v pleased with me and asked what my secret was! Veins were problematic again, but nurse found one after a bit of digging - I hate that bit.

Feeling a bit yuk today so better get off pc as I think it makes me more nauseous. Have enjoyed the comments re ice cream etc. I'm brown rice and hair shirt myself, for a couple of days.What thread should I see to enjoy KK's contributions? have I missed something (shock horror)?

DH in Bort today as his sister and BIL are renewing their wedding vows - I'm sorry to miss that but didn't fancy the journeys just after chemo.

Glad you are feeling beter RWU.

Pennies · 27/03/2010 14:29

I am utter agony with a throat ulcer now. Last night it was so bad that I couldn't even swallow my saliva and it made me cry.

I'm trying to manage it with codeine & ibuprofen but it only takes the edge off it - I can't eat and even drinking is a major chore.

Any advice?

Pennies · 27/03/2010 14:35

Next chemo is due on Thursday, SR.

It is wiping me out big time now. I had 14 neutrophils (so bloody loads of the things) when they gave me my last stuff, which was elevated due to all the injections and it has killed them all off. I obviously want the strongest dose I can be given but if I'm being frank this is utter torture and I don't think I could face another 12 weeks of it. I'm hoping that if they reduce the dosage a bit maybe I'll tolerate it better, but what if a reduced dose isn't enough to kill the cancer off.

I'm also concerned about all these injections to boost WBC and neutrophils. It seems so dangerous.

V.v. unhappy and sorry for myself here, I'm afraid.

KurriKurri · 27/03/2010 15:18

Pennies - so sorry to hear you are having all these problems. I suspect it may be to do with the accelerated chemo combined with a lowish wbc count to start with, because my experiences were similar to yours.

How far down your throat is the ulcer? When I had ulcers I was advised to wash my mouth out and gargle with soluble aspirin (dissolve 2 in approx half a glass of water). It may give you a little relief. And can you ring out of hours doc. or your unit for advice, they may be able to give you something for the ulcers. (I had adcortisyl tabs., but mine were more in mouth than throat - but definitely worth enquiring)
I sympathise massively - they are awful and depressing, I hope you get some relief soon.

I had loads of the injections - and don't feel as if I suffered any ill effects so try not to worry too much about that. They may also lower the dose temporarily, and then put it back up when you are a bit stronger. Perhaps they will also consider putting you on the three week regime, to give you more recovery time?

Of course you are anxious - that is very natural, - but remember chemo is only one of the ways they are tackling your cancer, you've had surgery, and will be having other anti cancer drugs (and Radio?) Talk your concerns over with the oncologist, they will be able to reassure you. (little tip - write down everything you are worried about, so you don't forget what you want to ask)

This is such a bloody awful business sometimes, it is one step at a time, and try to deal with each bit as it comes. Take care, and hope you fell a little better soon xxxxxx

MaryAnnSingleton · 27/03/2010 16:19

Pennies - can't suggest anything helpful but really hope you feel a bit better soon xxxx

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sandripples · 27/03/2010 16:32

Pennies, this is so miserable for you. I can't beleive the team can't help you more with all this. Why do you have to be a 2 week regime I wonder. 3 weeks gives you time to recover and build up strength and I thought most people were on 3 week cycle. (i know I am speaking in ignorance but worth discussing).

My next door neighbour (a doctor) says they build in time on chemo anyway so that it does not matter if a tratment is a week late, so I don't understand why they are pushing you so hard.

I also think your dentist might have some advice re mouth if you have a good dentist. Mine offered to help me if I had problems.

Keep going and have whatever treats might help. Sending all positive vibes.

Pennies · 27/03/2010 19:38

They are giving me a dose dense approach. If you're interested here's the thinking behind it. Although the line about there being fewer cases of neutropenia did make me somewhat.

This neutropenia is worrying me big time. I feel so bloody vulnerable.

wubblybubbly · 28/03/2010 16:22

Pennies, I'm sorry you're having such a rough time. I've read the link and it the research sounds interesting but the reality of it for you sounds just awful.

Is it part of a clinical trial you're on or is this now standard treatment? This neutropnia sounds terrible. Like you saw, with children I don't know how you're supposed to keep yourself from infections and such. My little one comes home with something from nursery every other week.

I'm about to find out (I hope) what they've got planned for me next week, so it's good to be forewarned.

RWU so sorry to hear about your shingles. I hope you're feeling better soon.

I'll be looking for lots of scarf advice soon I think. I get a free NHS wig I believe, but not sure what it'll be like. I'm tempted to think if it's free it'll be like one of those you buy on the seafront at Blackpool!

I trying to pluck up the courage to go for a bra fitting tomorrow. There's a local shop (for local people ) ran by a lady who has had a mastectomy. At the minute I'm avoiding going out because I don't really feel up to wearing the softee thing, I'm still really swollen and tender. I'm not sure if this cleavage I've got is going to be permanent!

I've avoided the thread for a while, I've been in denial for a few days but I'm coming to terms with it all again now.

Elibean · 28/03/2010 16:33

So sorry to barge in, but I visited and saw what Pennies is going through. I had neutropenia a number of years ago (not cancer treatment, but it blasted my red and white cells irrespective), and ended up with loads of throat and soft palate ulcers (ie hospital on a drip for a week) and just had to chip in to a) send major sympathies and b) tell you, Pennies, that the drug that helped the most with the pain from the ulcers was Voltarol, preferably by injection but suppositories or even tablets would help too. They also gave me codeine, but the Voltarol injections helped far more iirc. That, and gargling with soluble aspirin, if its not too far down, as someone has said.

It also helped, a teeny bit, knowing that ulcers last 5 days and are self-limiting...it can't go on forever. Meantime, major get well vibes and stamina vibes and any other useful vibes to you, and anyone else who needs them atm. Thinking of you.

Elibean · 28/03/2010 16:35

ps to Wubbly: so v v glad to see your altered diagnosis! Good luck with the tx.

Pennies · 28/03/2010 16:41

Wubblybubbly - lovely to see you again.

They're taking this approach because it's a BUPA thing and the onc. thinks that this routine "has the edge on" FEC-T which is the NHS approach. I think that it is becoming the standard in the States, so I can imagine that happening here too if it were not for the fact that the GCSF jabs weren't so expensive (£1,000 a pop) which makes it prohibitively expensive for the NHS to routinely provide it.

Been to the hospital today for the DR to look in my mouth and she said it didn't look too bad!! OMG, what is bad then? Also the ulcer is in my throat so it's not visible, but hey ho. They've given me some different mouthwash stuff to gargle with (again, it doesn't get into my throat, only the back of my mouth) and sent me on my way. On the + side they did a blood test and my cell counts are rising, but I'm not out of the neutropenic woods yet and it also looks like I'll need a blood transfusion before my next chemo on Thursday as I'm quite anaemic.

Wubblybubbly - I also hate wearing my softies but I've got a bit used to them now. I really didn't want wear them at all but actually it is helping to make me feel a little bit more feminine which is important to me as chemo dispenses with my hair!

Cakesandale · 28/03/2010 16:42

Pennies -so sorry you are feeling so bad. Do you have some of the mouthwash they give you? Difflam Oral Rinse, I believe it is called.I did not suffer with my mouth and don't have any input to offer other than the wash, and the suggestions KK gave. I hope they can sort you soon, it sounds awful. Sorry not to be more help. I think I got off a bit lightly, all things considered.

Wubbly - the NHS wigs look surprisingly good, go and take a look before deciding what to do. i did not wear mine, it was just a bit too bulky somehow (Ihave pretty fine hair), but I saw many people looking surprisingly realistic. Make sure you take as long as you need with the wig lady.

Good luck with the bra shop! I keep promising myself a trip to get measured properly, and almost acheived it today. may be one day this week....

sandripples · 28/03/2010 16:46

Pennies, thanks for the reading. It doesn't mention whether the effect is for all grades of cancer, but anyway I obviously hope you can get through all these awful side effects which the article seems to underplay!

Wubbly - nice to see you again. I DID get my wig in Blackpool! It was a very nice shop though!

I'm pretty whacked today. A bit more than in 1st cycle.

Cakesandale · 28/03/2010 16:47

Forgot to add Pennies - quite a few of us on here had the GCSF each time, and it did not seem to have the effect you are experiencing. I wonder if you can get to the bottom of why it should affect you so badly, next time you see the doc? It seems odd to keep giving it if it is not boosting your cell count, just making you feel bad....