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!

mysillydog and good luck fresta

Hello all. I had my final chemo round today! Quite elated I am for it too . After 4 rounds of Dose Dense AC and 12 rounds of Taxol, I could do with a break before the rest of the journey( rads and then Tamoxifen). I have been told I will have between 3 and 4 weeks before starting with the rads.
I hope you feel better soon sillydog . I had full axillary clearance in July and it takes a while for your armpit to feel anything like normal but as mrs advised the exercises are really helpful and I still do a few now and then. It does get better trust me!
I wish all the rest awaiting tests and the like al the best.
Boobz I had a lumpectomy not a mastectomy, so nothing in the way of reconstruction. I. Do feel frail although I have tolerated the chemo well in general. I am grateful for not having had to endure more and appreciate the simple things in life now so so much.
I want to start exercising but have no idea where or when or how to start! DH thinks walking and gradually building the distance and time up would be a good start.
Waving to everybody.

Hi, back from oncologist. Good news and bad news. My tumour has shrunk further, now 1.7cm, so about half the original size and apparently the enhancement was much reduced, so much so that it was apparently hard to distinguish from surrounding breast tissue. Think that's good? The oncologist said, because I am having such a good response to Docetaxel that she considered continuing with that rather than switching to the EC, but has decided to do two rounds of EC and monitor response. Quite glad really as don't think my body could deal with any more Tax. I told her I felt sick easily so she has prescribed Emend to take before the EC (huge capsule, no idea how I'm meant to swallow it)- thanks to those up thread who recommended this.

Anyway, while I was there I took the chance to ask her about the tumours they found in my lymph nodes they sampled as I hadn't really been given any info other than they found cancer in them. Kind of wish I hadn't asked as the largest tumour in the nodes was 1.5cm! That just seems to huge to me and a bit of a shock. Feeling really scared again now as I think if one was this big then it must be very likely to have spread much further! I always thought knowledge was power, but think I felt better being in the dark, just feel really shaky now and DH has had to go to Amsterdam for work so worrying alone now. Anyone out there had similar results from their lymph nodes and doing well? Would love to hear positive stories.

Congrats on finishing chemo Royal, I hope you are celebrating a little tonight before the side effects kick in. It's big milestone to complete

fresta thanks. I am knackered now so celebrations untill further notice and the news about that tumour is really really good!!!
As for the nodes:
I had A LOT of positive nodes fresta despite my tumour being less than 2cm. Worse than that they found some cancer in the node extensions which was scary. This had shocked me so badly as it was why I needed chemo. The good news is once they have cleared that "infestation" up, you are effectively much much better off!! I had all sorts of scans after the surgery and all were good. As Amber said, the nodes are that safety net that catches the cancer, so anything in there caught and eradicated means you are certainly better off. Of course I understand you will be worrying, but just think of it: all the treatment you will be having will see to it that anything that just may be lurking is caught and zapped. I wish you all the best

Yay royalmama... I think the walks are a great start. Don't overdo it.

fresta, sorry to hear that - it's really shocking when you hear news like this again. Focus on how well you are responding to the chemo. and

PS fresta Emend is a godsend xx

Thanks Happy and Royal- at least that 1.5cm tumour has already gone! I don't understand why they couldn't see that on the ultrasound, how could it look normal?

Further advice please ... Not about me for a change but about a work colleague. She was diagnosed with BC last month and has had a lumpectomy and node clearance. She has just had her first chemo dose - I think it must be FEC (she didn't seem sure but agreed she had red stuff from a syringe (Epirubicin)). So I am expecting she'll have three FEC and three Tax.
She thinks she can get through this without taking time off (unjustifiably terrified of being sacked if she doesn't maintain current workload).
So, does anyone think you can go through chemo whilst working full time (9 hours plus per day with no lunch break as she is so terrified she will lose her job) plus a long commute (car/train/bus tube) taking the best part of four hours per day? She is mid to late 40s and recently divorced with a new man in her life and adult children who don't live with her.
Our boss and her immediate boss have told her that she shouldn't worry about work - and I took quite a lot of time off, on full pay, when I had Tax so she ought to realise she won't be sacked!. I suppose we may have to let her discover the effect of the Tax truck if she won't listen, but we suspect that she is trying to cope through denial.

Goodness Lily, I couldn't have worked full time during Tax, I think if I had a desk job I might have managed to work some weeks, but certainly not the week immediately following it. I just about managed to get dressed and showered most days and spent most of the week after in an achey daze watching tv and sleeping. Reading a book was too hard some days.

I work in a school office and worked full time for 3 x EC, then had 6 weeks of school summer holiday sole charge of my 1 year old for 1 x EC and 2 x Tax then back to work full time for the last 2 Tax. I would have the day of chemo off and then back the next day.

It CAN be done if your are not that badly affected by the side effects, but there is no way knowing how badly you will be..... I was lucky that I didn't suffer THAT badly and just kept going. (I was SO cross that I had cancer I wanted to just ignore it and carry on as normal)

So she could have a shot, but not to be too disappointed if it turns out to be impossible......

Fresta I was like you on Tax. It was like having flu every three weeks! I carried on doing some work from home in Week 1 but had difficulty focussing on the screen (and thinking). I watched a lot of day time TV and snoozed, then went into work part time some days in Weeks 2 and 3 (I also have 4 hours commuting per day). This time round, on Epirubicin, I haven't missed work, but do get very tired.

When my oncologist asked how I had found the side effects of Tax I described it as like having flu, a hangover and morning sickness all at once. She said if was to tell her other patients that she'd never persuade anyone to have it .

Lily, I'm having 6 fec. Have been working 2 weeks out of each 3 so far (desk job with 1.5hr commute) but am considering taking some more time out as I'm feeling a bit grim with it. Doesn't mean your colleague will though...

Royal, congrats that is fab news to be done with chemo!

Fresta, I can quite see why that node news would have knocked you but hope the onc gave good reassurance. Sounds like the chemo is doing its thing just as it should and I've heard nothing but praise for Emend.

Thinking of you post surgery, mysillydog, and waving to all.

Fresta glad the chemo has done its job, it's natural to worry but I try and tell myself that we've had the best possible treatment and they do know what they are doing

Lily I wasn't allowed to work being a teacher but I couldn't have anyway, the tiredness, the aches plus the emotional side. Some weeks I didn't want to talk to anyone. It's a shame she is worried about her job. Rodent I'm in awe of you !

fresta that is just how I would describe chemo but multiplied by about ten!

Re work, I took about eight weeks off immediately following diagnosis and then went back two days a week from home since then (mid November). It has meant that I have worked the days after chemo but has worked well mostly: there have been days when I have just about collapsed at the laptop though. I feel very lucky to have been so well looked after. There is no way I could have commuted or gone to the office.

I was "lucky" in that I was on maternity leave while having chemo, which effectively meant I was still being paid. I work for a quango so we also get 6 months full sick pay. I don't know if I could have worked - looking after three DCs was hard enough!

Royal- glad you have finished chemo. I would start building your strength up gradually. It took me about 4/5 weeks after last one to feel I was beginning to get back to normal. I walked a bit more each day and took it from there.

Fresta- the shrinkage is very good. Definitely focus on that. Emend was great- once I had that I wasn't physically sick.

Lily- I couldn't really move for a week after tax but I had a friend who was doing most things, although she did stop cycling by the last dose. Apparently once we have a cancer diagnosis we are classified as disabled for work purposes so am not sure they would be able to sack her, although I am not an expert on that sort of thing. Maybe it would be worth looking into.

sillydog- hope the op went smoothly.

Right, am gearing myself up for another three days with 30 small people!

Thanks speedy and Dinster.
Luckily I havent put on much weight , just 3 kilos in all and I am still within the healthy range, but I used to be active and need to get back to something as close to that as possible considering I am not the same person anymore.
speedy good luck with that birthday party!
Wishing you all a fine day ahead.

lily i has to take time off work( i teach at uni). I reckoned with two DC and the stress of teaching( exams, assessments, essays, etc) i would be far too stressed. It was my decision to not work to give myself the time I could to deal with the chemo without any other pressure, but some people can not afford not to take time off, which may be the case of your colleague. I do get awfully bored as I am used to working, but rather be bored than stressed and at risk.

Sorry I had

Thanks for all the response about working on chemo. I'm now sat at work telling her she must drink water all day (no water on her desk) and moisturise her hands with hard core hand cream regularly. She is just not fully accepting what has happened! No one at work is going to sack her (I've been paid in full all the time I had off) and they will get in extra help if necessary (I had a full time temporary assistant all the time I was having the first lot of treatment).
PS I am awe of all of you who have had to cope with small children at the same time!

Hi everyone
Just a quick check in. I'm still in hospital and my care has been great. There was plenty of medical cover yesterday for the strike day. My shoulder is still frozen. The doctor told me that lots of my lymph nodes were hard to reach so there was a lot of moving about my muscles and nerves to reach them all. That must have been what the surgeon was referring to as I came around from my anaesthetic.

I'm feeling a bit wobbly at the moment. Hopefully once my drain is out and my shoulder stop hurting this will pass. I should be home by Saturday at the latest.

The relief when the drains come out is fabulous! You will feel much better then. Are you getting lots of visitors? Pain can really make the time drag.

I have an appointment with the clinical trial people next Wednesday. I am keen to get some treatment started. I do hope I don't end up on a placebo.

You really will feel better once the drains are out!
Has anyone spoken to you about doing arm exercises? I had a bmx and node clearance on both sides and I have pretty much full range of movement in my arms because I really worked at the exercises. Total numbness in my left arm, but there you go!
Lily, I'm sorry about your colleague, she does sound like she's in denial.