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!

Hi Everybody, hope you all had a nice Xmas day and you are having a relaxing Boxing day today.

earthyambitions

I have gone through this process not long ago and I understand how you feel. As the lovely ladies here said that there is a very high chance that it is benign. If you have any questions that I can help you with by any chance, please send me a personal message. Of course, I can only talk about my own experience. It helps if you try to keep yourself busy to take your mind of it. Take care

Oooh I am in yorkshire too Mrs, the floods in Mytholmroyd look devastating, that's only a few miles down the road from me, luckily we live on a slope but feel so sorry for those living in the valley bottoms. It's absolutely pouring down still. Too achey today to feel like going out, we are having a PJ day day, board games, TV, and eating up the leftovers.

Hi cratos, I hope you've had a good Christmas. I've been wondering if you're ok, I seem to remember you got the all clear a short while ago and have cysts instead of the dreaded BC? Sorry if I've remembered wrongly, it's just usually people disappear pretty quickly when they've had the all clear and can't wait to get away from here.

If you're worrying about your diagnosis or the future the charity Breast Cancer Care has excellent nurses who you can phone to talk things through.

Hi fresta, we're safe from floods in Harrogate but are just about to venture out as its clearing slightly. I expect there'll be lots of surface water about though.

mrsrhodgilbert

Hello, yes you are remembering correctly and thank you for the advice. Yes I should probably disappear now - just didn't feel like it-:) I think.

I am not worried about the diagnosis actually but I think I would like to make sure that I get some ultrasound checks in the near future (might be in another country privately) since I have been told that my breasts are dense and also full of various bumps so I don't think I would be very good at checking myself.

Royal I don't remember jaw pain but I did feel achy elsewhere so probably is the chemo, I hope it eases soon
The floods do look dreadful :(
Fresta sounds like a nice relaxing Boxing Day
My tree is down, house tidy and all packed as we go away tonight. Doubt I will have the internet so I will wish you all a very happy new year now, good health and lots of happy times in 2016 x

Royal, I have a pressured feeling in the joints in my jaw after the docetaxel for a few days, also the joint feels sort of crunchy. Another weird things happens as well, sometimes in the week or so after chemo if I blow out my cheeks it feels as if the I get a big bubble in the jaw joint and the muscles detach from the bones- it was really scary the first time this happened but it goes back to normal after a few minutes and I'm just making sure I keep my cheeks firmly sucked in! Other joints ache too, this time it's my neck joints hurting the most.

Hello all 😊 I've recently been referred to the breast clinic over a very tiny lump in my breast (2.5mm?! I think) nothing seen at all on ultrasound, and consultant after said he was confident it was just fat necrosis that would eventually go. So I felt fine about it, but now, a week on, I'm thinking should they have biopsied or something? I'm mid-20s so they are unconcerned but still. Any advice would be gratefully received. Sorry for intruding

Hi Pontygirl, I'm not a doc of any kind, but if it's a specialist breast clinic, they are experts in working out what's cancer. As I understand it, the ultrasound will look for the whole shape, and if it's breast cancer, there will definitely be an ultrasound reading from it. Breast cancer is solid and would show up clearly. So I would trust their judgement. Hope that helps.

Thank you amber - I wound myself up about it terribly in the 2 weeks leading up to the appointment, and I'm still trying to talk myself down a little! You are completely right of course, they know what they are talking about. Thank you again.

Cried myself to sleep last night. I have absolutely decided this is bad news. Husband says he refuses to think it's anything other than fine until someone says different. Dreamt about telling my boss too. Every time I feel I convince myself there are more lumps but I'm not sure there are when I compare both breasts. I'm convinced it has already spread but have no rational reason to think that. I can switch off the morbid thoughts about dying, leaving things for my daughter etc. Yesterday we went swimming as a family and my daughter had such a lovely time playing with her dad on the water and all I could think was that it would be a good thing for them to do together when I'm gone. I don't want to die, I want to be there for my little girl growing up. I don't want her to have to deal with me dying.

earthyambitions i have two DC and the fear of leaving them and all that goes with this fear is very real too. Of course you worry, and of course you do not want to die. None of us do. I have found that the more I dwell upon these thoughts and let them take control, the less able I am to do what I have to do for DC! what you need is the information from the medical team to help you know what is going on and what will be done about it. Once that happens, you will start to concentrate not on how scared and sad you are, but on how you will get treated and be well for yourself and your family. Worrying is consuming and it does not help although we can hardly stop! everybody needs some comfort and support because we are only human. You will be okay once you have a much clearer picture. It is not about being "strong "or "brave", but about the natural innate need to survive the experience.
We are all doing our best to survive the experience and in that, sharing tips and advice and holding hands. I hope my words will help, but do keep coming and telling us how it is affecting you.

Hi all and hope everyone had a great Xmas. I don't post much at the moment but do pop in occasionally.
I was diagnosed with grade 3 cancer in both breasts in September 2013, 8 weeks after the birth of my DD. I had chemo, mastectomy and radiotherapy followed by ovary removal as I turned out to be BRCA2+. I went back to work a year ago, and am doing fine apart from the joys of menopause. Not what you want at only 38!

mumto2and fresta thank you for responding. I think it is linked to nerves. Paracetomol helps but I am hoping this will go when I am done with the chemo.
I should have only two more rounds left, but I suspect I have a UTI now :(
no fever but an urgency to go to the loo and some pain and discomfort. i have been told they will need to take a urine sample for a culture and that if the infection is bad , then they could delay tomorrow's chemo. I want the chemo to end and have been lucky that none of my rounds were delayed before but seems there is to be some drama towards the end( suspense!)
I hope it is not wuch a bad infection and that it won't mean any delays!

weebarra hello again. Great to hear you are doing well overall!your DD must be 2+ now? The menopause symptoms are already hitting me too and I haven't even started Tamoxifen yet:( with little ones it can be extra challenging!

Yes Royal, she was 2 in August and the boys are 8 and 5. DS1 is still getting over my cancer, he gets very upset at any stories where parents leave children. I'm sure he'll recover in time!

earthly, what Royal said is right, it is hard not to worry, but you will soon know one way or the other and you will deal with whatever the outcome. You have to. Chances are high that you will be fine though.

Hope you are OK Royal for your chemo tomorrow, not long to go now. I had my last Tax, on to EC next time. I feel crap right now, but keep telling myself I will never have to experience this feeling again and hoping I will feel well enough to hit the sales on Friday x

Any experiences Of EC chemo will be greatly received- dreading it already as I feel sick easily, travel sickness, morning sickness, sea sickenss- I get them all really bad!!

Thank you royal and fresta, your words mean a lot. I hope you are ok for your chemo, royal.

Fresta, my advice would be to tell them that you get easily sick and ask for extra anti sickness meds. The one I took, after being sick the first time, was called something like Endemol(?) and you take one tablet an hour before chemo and then one on the following two mornings. The nurse told me it's quite expensive so they don't give it out routinely as most people don't need it. After the first time I wasnt sick after taking this. You and I are swapping round now as I'm about to start the Tax, although mine will be weekly now for 9 weeks. I go in on New Years eve and I'm dreading it already...

The nurse told me that the Tax doesn't make you feel so sick - is this right?

Hi Anna, thanks for the advice, I haven't been given any pre-meds to take with the EC, they told me I will get anti-sickness meds aferwards and a steroid. I will speak to them! The Tax doesn't make you feel sick, I have been Ok with just the odd bout of indigestion. The main side effects for me have been the aching and lack of energy. They don't tend to kick in until about 3 days after because they give you steroids which keep them at bay, although speaking to other ladies who were having the weekly Tax (mine was 3 weekly) it's apparently milder than the 3 weekly dose. I think you will be fine, It's not nice but the side effects are easy to ride out by snuggling on the sofa and letting everyone look after you, the only downside is you don't get that recovery time between doses. It will soon be over though- you will finish before me as I have 4 ECs, so 12 weeks to go! Good luck with it

Fresta, I'd take ginger supplements. They really do help a good number of people. And wear 'sea bands' on your wrists. And take all the antisickness meds they ask you to take. Even if you're not feeling sick at the time. If they don't work, tell them straight away and they can prescribe stronger ones. There are at least eight varieties in different doses. Never suffer sickness - there's no need.
Tax - I found it fairly easy, after FEC. It is like having gastric 'flu for days 5-8, I found, but strong painkillers/anti-diarrhoea stuff helped. Far less sickness. Got v tired by fourth cycle of it, though.
All do-able if you pace yourself and take really good advice from teams.

anna i am about to finish my 12 weekly Tax and compared to the four doses of twice weekly AC, it is a breeze. I was given the Emend you mentioned as well as other pre meds for the sickness when I was having the AC, but with the Tax there is no sickness. The weekly Tax is easier on patients according to several studies. All that bothered me was the fatigue, the slight indigestion, low mood and general aches ( like in my jaw) but all very doable. I also noticed these kicked in as Fresta said between days 3-5.
I am so looking forward to finishing the chemo..even though the treatment goes on with the rads and Tamoxifen, I want this chapter done!
Have a lovely day ladies..i am hoping my chemo today is not postponed!!

No news about my (now over) 2 week referral. Contacted gp to chase. Awaiting call back.
to all.

Thanks for all the advice, I'm pleased that the Tax doesn't make you as sick.

You've reminded me, Royal, that the drug Fresta needs to ask for is called Emend - I knew it began with an E! If you take this, Fresta, then I think you'll be fine. The only thing is that they may want you to try the first lot without it to see how it goes so you'll need to stress that youre very prone to sickness. Amber is right, nobody should suffer with sickness as there are so many drugs for it and the emend worked for me.

It seems like everyone else has 4 rounds of each (or 12) rather than 3 rounds of each. That does concern me slightly.

Dotty, I hope you get your referral soon, the waiting is awful; just keep harassing them daily.