Tamoxigang - 41 and counting

[KurriKurri]

Morning all, new thread, croissants on trolley, and I'll put a brew on.

Sorry, I am just so scared. Did you all have many positive nodes? I have one in three removed.

Daughter of EMIN so sorry for your loss, your family are in my thoughts and prayers.

Well I never thought I'd say this but FEC is easier than tax.... Yowzer bone pain, hot flushes, feeling as if I have the flu, diahorrea, nausea (that was the easy bit!) sore throat/mouth, have spent the last three days in bed or lying like a loppy dog on the couch. still feeling really rough, but better than yesterday so hoping its easing off now.

I'm way behind on the thread so I hope everyone who is having treatment is doing well. Hopefully I can catch up properly tomorrow.

Hello Eco. Bugger about the node. Totally get how scary that is to hear. I'm not sure if this will help, but I had 4/22 nodes positive. I'm well over 3 years from diagnosis now and honestly fine (if still a little paranoid!). Ask anything you want. There are a fair few of us with nodal involvement.

Betsy sorry you're having such a tough time. Tax is a bit butch isn't it?! Count the days, tick them off - you will feel better soon. You're probably wiped out from the FEC. I'd bet that's not helping.

Oh Betsy that sounds awful hope you feel better soon
Eco I had a sentinel node biopsy when I had my lumpectomy which tested positive for cancer cells so have no idea how many more it's in. They wanted me to have the chemo 1st which will hopefully kill off any other cells then when the nodes are removed they might just contain scaring where the cancer used to be.
Other surgeons do the node clearance 1st then chemo I think it's just their preference
I was terrified when I found out it had started to spread but you do get your head around it in the end and of course the lovely ladies on here who have been through it are very reassuring

EcoRI - I had 3/8 positive, a good friend of mine had 17 positive - she is doing well now three years on.
I understand how you feel sweetheart - it is bloody scary, - I couldn't function for a couple of days after I found out I needed more surgery. You can only take it a step at a time, deal with each thing as it comes along - for now concentrate on your surgery and recovery from that, then you can think about the chemo and how you are going to deal with that. If you look at the whole picture it looks overwhelming - little steps yes? - and you will get there.

Use your BCN and your GP as resources - that's what they are there for. You GP can help if for example you are feeling very anxious or having trouble sleeping, and would like something just to help you for a few weeks. Your BCN can talk you through all the procedures and help with any anxieties you have.

And hey - don't say sorry OK? xx

Betsey - sorry you are feeling so rough, - as well as the mouth wash you get from the hospital. my GP recomended dissolving a couple of soluble aspirin in half a glass of water and gargling/rinsing your mouth out with it several times a day (don't swallow, just use as a mouth wash) - I found it helped a bit with soreness. Sucking fresh pineapple is supposed to be good to stop you getting mouth ulcers. Hope you feel a bit better tomorrow x

Betsy - was this your first Tax treatment? I got all those symptoms the first time round, but not so many on subsequent treatments (though I can't say I'm overjoyed with the thought that I will have 8 Tax treatments in all and have only had 4 so far). I'm now on 75 (random units) rather than 100 units per time. This time, I had chemo last Thursday and only really felt grim on Monday. Not exactly bursting with life at present, but it is almost tolerable.

Eco ri - it must be a horrendous shock but you will get through this. Kurri speaks good sense (as always). I think the advice on going to the Gp is particularly good - anti anxiety (Valium etc) comes into its own at this point - you won't need it forever but when you are too scared to sleep as you think you will die and throwing up every meal , it does help. Anti depressants and sleeping tablets also can help.

Kurri- so sorry about your ds/Ddil. I do hope they find something soon. They do sound lovely and with loads of good experience so I should hope not too long before they are snapped up.

Offering to betsey kitkat and anyone else in need.

Had lovely lunch with pigeons where we put world to rights. Better go ask as mini gig eating chalk which is probably not a good idea. Big gig decidedly grumpy after day in the sun.

ecori sorry to hear your news and I have no words of wisdom but just know that the folk here will be able to help you and allay your worries.

gigs yes i LOVE masterchef, cant wait for the next installment !

betsy sorry you are feeling rubbish and hope things settle soon

HND - I've had insertion of tissue expander (400cc in size - so small !!) which was expanded by 100ml in the Op and will be 'pumped up' with saline over the next few weeks. Then 6 months after radio is completed I can have the expander replaced with tissue (not up on the details of that yet).

Oh no Betsy - sorry you still feel awful - especially as like you I wouldn't have thought anything could be worse then the FEC nausea. I am resigned to getting 3 TAX but that's only guess work at the moment.

ECORI - sorry you are paniked at the moment but like everyone else says it is still fixable and you will feel better once the shock has worn off. Bizarely I have 1 positive node (out of 2) but as it was only a micro (2mm) I'm not having any more nodes removed - it does seem that protocol varies between areas.

Malt - have you made a decision on cold cap for tomorrow?

I am still mulling over whether to continue if I have to have more chemo as I do have a bald spot on the top of my head and i can't believe the rest will hang on for another 3 cycles.
Annoyingly my leg hair is back to full strength (it's now almost 5 weeks since last chemo) but no sign of any improvement on head hair.

Ecco I had a positive node and I am still here twelve years later. The Consultants don't regard one node as a big deal. It is still local and has not spread, that is only if it turns up in other organs. One doctor told me that lymph nodes are the rubbish bins of the body, so definitely the right place for Cancer I had all my Lymph nodes removed and lived in fear of all the scary side effects they list on the info sheet but have been lucky not to have had any problems in spite of being a keen gardener who would have to await hell freezing over before my husband did the heavy lifting and double digging.

gigs and I just had a lovely lunch and a good goss. She is looking great and definitely on the move. I felt it necessary to support her in the acquisition of calories and may have two dishes laden with Mozzarella

One thing we did feel on this sad day is that we should all remember that EMIN was unlucky but that does not mean that any others of us should feel that we will be unlucky too. Since I was diagnosed twelve years ago I have known many women who had this awful disease and have endured the horrible treatments and got on with living their lives, even those with secondaries. Of all those women I have only known one other person who sadly was not so lucky. It is tragic whenever this horrible disease takes someone from their loved ones but sadly the statistics do mean that the more women who come into your life as a result the more likely it is that one will be one of the unlucky ones. But that doesn't mean it will get us too. It does make you feel more angry and sad about it though

KK So sorry about DS and DDIL's jobs, and so soon after he received the award as well. At least that will go on his CV so that future employers know how special he is.

Betsy You do seem to be having a bad experience. You should mention it to your team as it may be that the dose is greater than your body can cope with and should be reduced. I have never known anyone feel that bad on Tax, bone aches and fluey yes but not the rest. I know the chemogang have been made of stern stuff and have not had to reduce doses so far but it is very common and quite normal, the doseages are crude. Perhaps it would be better if you were hit by a single decker Tax bus next time......

pigeons - my BCN said similar - she said think of the lymph nodes as 'the fishing nets' - so catching any stray cells.

Thank you all. You are so kind.
The initial shock wore off and I'm feeling ok. Just concerned about lymphoedema now. Does anyone have experience of this?

Eco I don't but think we've just got to be really careful with that arm afterwards

Pigeons thank you for that post which was very reassuring in lots of ways, glad you and gigs had a good lunch

Kitkat I hope to keep cold capping, even though I wouldn't leave the house without my wig now I do like my little bit of hair at home. Worried that they will say its not worth it though. Yesterday I met a lady who hadn't cold capped at similar stage of treatment and she had same amount of hair as me so I don't think it's doing much ! Hope yours starts growing back soon

Just caught up with gbbo laughed at the custard !

oh that's pissy ECO but am sure the chemo will zap any buggers in your system. Everyone is different and their bodies respond differently to this disease - I had no positive nodes yet I have secondaries 3 years on,but having said that I am very well (I sometimes wonder if they had given me chemo then I might not have progressed to stage 4) this isn't meant to alarm anyone, just saying that it's kind of unpredictable.
Sorry that you are suffering betsy

Betsy, grr re tax truck effect. It did seem to lift fast with mine, but I react so strangely to potions that it's difficult to tell how useful that is for other people.

Eco, with your set of results, the difference in survival between no nodes and one node is 96% versus 93%. If that helps. Even if you had a whole brace of nodes that were affected, you'd still have a better than 85% chance of cure now...without even factoring in the modern new drug combinations or other things. And in five years, they will have the proper holding chemicals in place anyway, (the ones that will stop even ruder cancers from progressing) from the look of it. So, I reckon you'll be OK on that result.

Nice for you, I think.

Those stats are reassuring amber- here is hoping they can do similar with my cancer.

At the risk of lowering the tone , it's been a while since we have had a good orange man pic but I found a doozy on another thread be afraid he is releasing a new album for Xmas

Gigs are you trying to make me go awol again. Might have to buy you his new album.

It's a bloody mystery to me who buys his stuff as someone must unless he pays to release this stuff himself.

Gigs, yup, new combinations on trial the whole time now, many holding things for years by the look of it. Not everything's a success but it's improving by the month.

New drugs/therapies are being developed all the time and that things are improving every year regarding outcome. DS1 has CML and has benefited from this drug. Until it was developed CML patients didn't have a good life expectancy. Now life expectancy is normal (as much as can be forecast for a drug only on the market for just over a decade) and since it was developed, new even more effective drugs have come on stream (and have even been sanctioned by NICE despite their cost).
On the other hand, the thought of the 100th album by CR doesn't fill me full of hope for the future!

Good god gigs that was unnecessary.

Sorry hangs head - but would this be better for topsy. It's not as good as the one kurri found where Tom looks like is dancing with a ferret down his trousers.

And if you really need a scare , check out some of the links on this [[
www.mumsnet.com/Talk/_chat/1843766-Oh-god-Cliff-Richard-is-to-continue-recording-and-singing thread]]