Tamoxigang cancer support thread 54: A new thread for a new year!

[WhatWouldLeslieKnopeDo]

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

Good morning all. I have not been well, so was away for the past two days and oh my has there been alot going on in this time!
I can not address every single post of course, but in general I want to reiterate that this thread has helped so many of us. I have only been on for a few months (since I was diagnosed) and coming on here been a vital element of my daily life with cancer.Most of us do not know each other in real life and yet we understand what we are going through and can relate better than others to the struggle of dealing with the cancer. I for one am not here to judge anybody and all I wish is to share and support and be supported in this tough time.
Now back to what really matters here!
Somebody asked about Tax? The 12 weekly Taxol dose (chemical name: paclitaxel) offers the same benefits as getting a higher dose every 2 weeks but with less side effects. I am currently on this 12 week dose. My last round is this coming
Tuesday. It was definetly easier than the AC course I had before it, but is not without issues of its own, mainly the fatigue and nerve pain which I had lighter than most but still did bother me.
Wishing you all the very best and hoping all who need to be here stay on.

Oh just realised there was someone asking about port a caths?
I have one for chemo and I am so glad for it as opposed to the alternative canola. The thought of nurses having to find a vein every chemo round and the stress and anxiety of that! It is a bit unsightly and it did take a few days getting used to but now I hardly notice it.
I would strongly recommend having one.

Morning everyone

Anna I put on loads of weight during chemo, I thinknyou just have to do what you need to to get through it, 2 years later I've lost it all so don't worry too much. You sound like you are being sensible though, I was a bit like I have cancer I will eat what j want !

I didn't have a port and managed ok though it did get harder to find a vein with each chemo

Love to everyone

Good luck Mysillydog I hope all goes well :)

Dotty pleased to hear you have an appointment soon, and looking forward to you reporting back with IBS and fissures. Is the diltiazem helping? I hope so

I second a portacath, had mine throughout chemo and has been fab. Is under the skin so out the way, have played netball with it too and no problems X

Sorry about all of the typos in my post I obviously haven't woken up properly yet !

mumto2 i don't think anybody here tops my number of typos:) i type so fast and hit post each and every time

Just waiting for the prescription now Leslie. It is the first chance I have had to attend the hospital without do during pharmacy opening times.

I currently have a nice pot of tea and chocolate tiffin cake, while I wait for it to be done

I'm having my sixth Epirubicin chemo today. Think this may be the last though am confused as Onc mentioned eight courses at one point then talked about maximum recommended dosage which was less than eight.
Exciting question of day - I seem to get very constipated in Week 1 - not a SE mentioned in chemo leaflet. Is it something to do with the steroids I have to take over first three days?
I've got a pack of prunes at the ready (and will drink ridiculous amounts of water).

lily constipation is usually mentioned as a common chemo side effect as is diarrhoea. I got constipated first week of chemo (AC) but found the medicine they gave me helped ever so well. Keep drinking lots of water and yes prunes and the lot should help.

OMG Leslie, it burns and itches. I feel like planking my bum in a cold bucket of water.

Good luck Dotty for your test on Sunday. Very good to not have childcare problems.

I'm in hospital and feeling stir crazy already. They will take blood soon and then start me on the drip and I will be immobile for days.

So as soon as my blood is taken I'm going for a walk before the results get back from the lab.

Thanks mysillydog. Definitely get that walk in while you still can. Hope you are up and about soon.

Hopefully it'll wear off quickly Dotty the burning is worse when the skin is broken, it was much better for the week or so when my fissure had started to heal. I think the itching/tingling is because it increases blood flow. Some days I really have to brace myself to apply it as I know it will sting, but honestly it really works so it'll be worth it!

Mysillydog enjoy your walk and I hope the results are good. Hospitals are such odd places. How long will you be there this time? I hope you'll have lots of distractions while you're stuck in bed :)

One week stay is planned. I feel like I have a cold coming on though which is a bit of a worry because I want this op done. My temperature is normal though.

I hope your temperature stays down, and that they are happy to go ahead

A long time retired poster here. I don't normally post anymore as 14 years on from treatment for a primary Breast Cancer they gave me 60% chance of surviving I have moved on to coping with all the other challenges life throws at us. I have seen a lot of other old time posters, some of whom have become close friends IRL, also get on with their lives and I hope that gives hope to those enduring the treatment but also as Leslie recently highlighted earlier a few who faced a greater challenge from this bugger Cancer who are no longer with us and much missed.

I was tempted on to the thread to say I was so pleased to see Sleepy post . I had missed you and several of us were asking after you. I am sorry you face another challenge of treatment and shocked at your woncy oncys. They definitely need a kick up the wot sit. Your deleted post was was spot on and well meant and I agree totally. I am sad to see your integrity and care in any way questioned on what has always been such a supportive thread.

Mrs Rhod You are absolutely right that this thread should and always has been a place where all are welcome to share their experiences and deepest fears and feelings, often those are feelings that cannot be shared anywhere else because it would be too painful for friends and family so it being a safe place where care, honesty and respect are the norm is of the utmost importance. You may not be aware the thread dates back to 2009 when the lovely MAS was the first OP. I am actually one of the posters who pointed out a few months ago that Nanny's ( then posting as Reallyworried ) continuing experiences of treatment since 2013 were so unusual as to be virtually unique. We did so because several people on the thread had expressed anxiety, online and offline, as a result of reading about them. You are right, health professionals and institutions are not perfect as Sleepy is experiencing but in the fourteen years since my treatment I have had a lot of experience of busy London teaching hospitals, both personally and through the many people I know who have been treated for BC, and I have heard no other tales of scans getting mixed up, bits falling off radiotherapy machines and being sellotaped back on, people with a secondary diagnosis not being closely monitored and every slightest symptom immediately investigated. As I said to Nanny it is not a matter of not believing, it is a matter of reassuring others that it is very far from the norm. In fact thinking of my fantastic Dr Geek scaring the bejesus out of me poring over every last pimple on my chest I do feel a little bit cross that anyone might think Nanney's posts are in any way representative of his care and professionalism and that of the Breast Care unit in which I was treated. It was Nanny who decided she was not believed. I am sure we all hope that Nanny can be open and honest here about her issues and fears. And that you and she will realise there has been no "unpleasant speculation" but rather concerns that have developed over several years of the thread. And I would add that I know of no posters on the thread whose experiences were not entirely genuine. Everyone's feelings should be respected here. In any case as Leslie has said it is for Mumsnet to ensure this is dealt with in a way that ensures all the vulnerable people concerned are protected.

Hi also to Lilymaid I had shocking constipation in the first week after chemo, it was as if I had given birth again. When people were telling me how "well" I looked and how "strong" I was I was sorely tempted to tell them about the state of my bum and how I had just spent the last hour on the loo in spite of a fruit juice and prune diet.......

Hi Ron, it's great to hear form someone who is 14 years in from treatment. Reassuring for those of us just starting out.
Silly- hope today and the week goes well and that you have plenty to keep you occupied.
So I splashed out and ordered a great wig! 😀 I have decided not to cold cap and got a synthetic wig which will be fitted next Friday. My real hair wig arrives in 4 weeks. It can stay on for 4 weeks at a time. Is stuck on! Will let you know how it goes. Feel much better about baldness/no cold cap now.
Lily- hope the prunes are working. I can recommend apricots too 😀
Anna, have been eating A LOT 😄 and chemo hasn't even started! Good to know the weight comes off afterwards. Just wondering if you are on tamoxifen?
Dotty- good luck for Sunday.
Hi everyone else x

well said dear ron - I am MAS but name changed after the security kerfuffle - I rarely visit mumsnet these days but am eternally grateful for the brilliant friends I've made from the tamoxifen thread - I feel a kind of motherly pride that it still carries on being a support for lots of new people but stand back now as there are so many people able to give good advice I'd just be repeating it ! I was concerned that newer posters just starting out on their 'journey' (hideous phrase) might be distressed and scared by the accounts of terrible bad luck in the course of her treatment by nanny- particularly with regard to treatment or monitoring someone with secondaries - all hospitals and teams have their own ways but from my own experiences as someone diagnosed with metastatic breast cancer it felt a little haphazard and not very reassuring. I can say that my treatment has been one of continuous careful monitoring and that my life is still pretty damn good !

I have put a stone on in weight already- I keep telling myself it is all water retention- can you get his on your thighs?

Seriously though, any tips for water retention greatly received, the nurses just shrug when I tell them about my puffy swollen eyelids and ankles. I have tried lying with my feet in the air and massaging around the eyes but nothing helping really. It seems the fluid starts off in my face and makes it's way down to the feet by the end of the day!

ron, it is reassuring to hear form someone whose breast cancer is in the distant past, just been talking to a friend too whose mum is 16 years out and going strong.

Also, just reading my notes and it appears that EC chemo is to be given over 4 hours- does this sound right, I had assumed it would be over an hour the same as the Tax?

whatwouldrondo it helps a lot you coming on and telling us who have been recently diagnosed or are undergoing treatment how well everything has worked out for you. Cancer stories differ and vary, but for sure every story counts.

Fresta, yes, EC or FEC tends to be given over a longer amount of time. Not least because there's more than one potion to load and gradually push through the tubes. Four hours seems quite a lot though. That might include monitoring time.

Hello, I've been lurking for a little while and thought I may as well post. I was diagnosed with non-hodgkins lymphoma recently and have started chemo. I went from GP to first chemo in 9 days which was a big shock to me, friends and family. Not the best Xmas present... However I had been unwell and it was good to get a diagnosis even if it is cancer...fortunately a very treatable form.

Welcome SandwichYum :) but sorry you've had to join us. How is the chemo going? I had my surgery 11 days after my diagnosis and was desperate to get things underway, but it all felt like a bit of a whirlwind! I hope you've had a chance to get your head around your diagnosis since then