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Original poster

**Tamoxigang counting down to Easter eggs- thread 48**

998 replies

BetsyBoop · 21/03/2014 20:05

throws some hot cross buns on the trolley

OP posts:
difficultpickle · 08/04/2014 10:41

really you are having such a rough time. I hope today's appointment brings some answers and some clarity. I can understand why you are so fed up.

Wren enjoy your gardening.

bigger buns hope you get on okay today and don't have to wait around too long.

I'm waiting to hear what happens next with my treatment plan. I'm just hoping I get a couple of days notice before I have to go back into hospital. I'm not sleeping at all well so feel shattered when I wake up. I don't want to take sleeping tablets as I need to take those in hospital and after a while they stop working. I'm hoping the gap will mean they will be effective for a while when I resume taking them.

malteserzz · 08/04/2014 13:16

Wren hope you've done your planting ! Seems strange everyone on Easter holidays, we don't break up till Friday. I hope tax is kinder to you, certainly some people have found that's the case

Pickle I hope you get some notice too and I sympathise with you on the not sleeping thing I'm the same.

Handbagsatdawn · 08/04/2014 14:15

Wren - I initially found the tax part of chemo easier to bear - no nausea, which was such a relief after the unpredictable sickness of the EC. What I did find with the tax was I literally ached everywhere. Every little ache I had ever had in my life seemed to come back. I can strongly recommend some anti-inflamatories for the first few days after to ease the aches. I also found I got quite glum about 4 and 5 days after tax and had to take myself off for walks to cheer myself up. I had 4 rounds of tax and I have to say, by the end I was ready to be put down if anyone had been kind enough to offer! Once you've had one round of tax though you'll know what SEs to look out for and how to best manage them.

Really - am keeping my fingers crossed for you today.

Biggerbuns - hopefully by now your op will be well underway and you'll be up and about later this evening (not on here obviously).

Malt / Really / Pickle - am also struggling to get an uninterrupted night's sleep. The only way I can foresee getting one is by taking some knock-out pills (lorazepam is my drug of choice). I haven't taken anything to help me sleep since finishing chemo as I was hoping that by now my sleep patterns would have reverted back to normal, but no such luck. The dreaded night sweats reliably wake me up several times each night.

I had a two hour gym session this morning (a core strength workout followed by spinning). I bet I still won't sleep properly tonight, even after that.

MomOfTwoGirls2 · 08/04/2014 15:26

Wren I did OK on Tax.
I got bone aches for about 3 days each time, around day 4-6 after treatment. The first cycle was the worst. I got a prescription for strong pain relief after the first session, and then I never needed it for future sessions.

Sleeping was a problem for the entire first two weeks after chemo. My Onc said it is because you get such a high does of steroids for Tax. Get a prescription for sleeping pills, if you don't have one already.

I also felt more tired in week 3 than I had on AC. I watched a lot of TV during the day... Good time to catch up on Sky+ or Box sets. But I still did all the driving to DCs hobbies, made all the meals, did light housework, etc. Just took it easy when the house was quiet...

Onc told me short walks help with both the tiredness and bone aches. But we had horrible weather for most of the time I was on Tax, so didn't get out.

Best of luck!

difficultpickle · 08/04/2014 16:56

malt and Handbags sorry to hear you're having sleep problems too. I feel well in myself although my blood test results today show that I must have been fighting a viral infection over the weekend (explains why I felt so crap, can't believe how much better I feel today). The other good news is having come out of hospital three weeks ago today with a huge bag of meds to take on a daily basis I'm now down to just an antiviral three times a day.

I'm impressed at the 2 hour gym workout Handbags. My current work out is pegging out and getting in the washing Grin

I'm looking forward to tomorrow morning when I get my hair shaved off (very little left!) and get my wig properly fitted and trimmed.

Wren48 · 08/04/2014 17:34

Thanks for the thoughts on tax, everyone. Fingers crossed! As ever, my hospital starts with the minimum drugs and will only beef it up when one has a rough time.

MomOfTwoGirls2 · 08/04/2014 21:09

I start Rads tomorrow. It will be a bit of juggle during the school holidays, which start on Fri. I will have total of 33 sessions including boosters. Hospital is about 10/15 mins drive away, so that's good anyway.

I also had my first Pilates lesson today! I felt great afterwards. I will do a private lesson for 6 weeks and then plan to join a class. I can feel those tummy muscles even now, hope I won't be too sore tomorrow! I took it easy but those muscles hadn't been used in a long time!!

Must get walking again too.

malteserzz · 08/04/2014 22:25

Really how did you get on ? Hope you're ok x

Mom good luck with the rads, remember to moisturise ! It is tedious going every day but other than that I didn't find it too bad

IamtheZombie · 08/04/2014 22:50

Hello friends old and new.

malteserzz, please talk to me about a full node clearance.

malteserzz · 08/04/2014 22:56

Hello Smile I had mine in December but on it's own as I had the lumpectomy back in June. They took 26 nodes I think and all were clear apart from the sentinel one. I was meant to go home the same day but they kept me in for 1 night. I came home with a drain which fell out after 4 days or I'd have had it longer. I had pain for a few days especially if I moved my arm funny or jarred it but mostly was ok.

It's just a pain afterwards as you have to look after your arm so you don't get lymphodema but they'll go over all that with you

What else do you want to know? Lots of us on here have had it

IamtheZombie · 08/04/2014 23:01

It's the risk of lymphodema that worries me.

Last time I just had a sentinel node biopsy and by the time the physiotherapist arrived to give me my exercise programme I'd already done most of them. She wasn't late, I just didn't have any problems (and knew no better than to brush my hair, etc.).

My BCN says I'll probably be in hospital for 3 or 4 days. It is Easter weekend after all. Hopefully I will go home drain free.

malteserzz · 08/04/2014 23:06

It is a worry, I'm going on holiday at the weekend and I'm worried about the sun, bites etc. I guess you just learn to live with it and try to reduce the risks

IamtheZombie · 08/04/2014 23:11

OK, thanks. As you say, I'm sure they'll explain it all to me. [gulp]

UKsounding · 09/04/2014 02:32

I have recently been having some issues with lymphodema. (I had Mx+node clearance and then rads. Some weeks after the rads were finished I began to have swelling, reduced mobility etc.) I had a session with a massage therapist last Friday for an hour, and it has been like magic! in the event of developing LE, there are ways to manage it apparently and we will get through this too. :-)

reallyreallyworried · 09/04/2014 07:10

Hi all

malt thanks for asking. Things went okay ish! Well other than me having a complete meltdown Blush You know when you get to a point when you just can't deal with anymore! Which wasn't helped by having 2 older men sat there looking at me like I was some sort of drama queen. Luckily my BCN was there to offer some support.

I have an appt to go back on Friday to discuss things, without the tears (hopefully) So more decisions to make before then!

Surgery is an option BUT it comes with some pretty high risks!! There is a possibility of having more Chemo, but that also carries risks because of the issues I had before! Or I can do nothing, and they will keep an eye on things?? That to me sounded a great option, but also sounded like giving up?!

I'm going to have another scan on Friday, they want to check if there are anymore dodgy areas in my liver! Apparently it's unusual to just have one area of cancer, once it's spread from the breast! Sad On this occasion I would quite like to be unusual.

Hope that made some sense! Right time to stop feeling sorry for myself and get ready for work!

Hope everyone has a good day. Xx

foofooyeah · 09/04/2014 07:32

really sometimes doing nothing and seeing what's happens IS the right option. Listen again when you are calmer but don't feel like its a cop out.

zombie I had full node clearance a couple of weeks ago, so far so good. Would be surprised if your in as long as that, I could have really come out the same day but stayed in to be sure (and because my hospital is so nice!)

mildmay · 09/04/2014 11:06

Speedy hope you feeling abit less sick.i had first fec on friday and today is first day i have felt okish.Sorry to hear things not so good for some of us.But while i have not checked in for a few days it so helps knowing you are all out there.Heres to a nicer day for us all .HUGS to all.

Speedypenguin · 09/04/2014 13:48

Hi to everyone and thanks for all the messages. I would like to respond to all and comment on other posts but my brain won't work. It was not a pleasant night but they say they will give me something different next time to try and stop it. Now at morning sickness stage but am managing to drink and eat a bit. Will try ginger beer.
Hugs to all and hope operations, appointments etc go well.

IamtheZombie · 09/04/2014 14:30

UK, I had DCIS in this breast 21 years ago and had radiotherapy then so that's the one thing I know I won't go through again. Nice to learn I may have an excuse for a massage though!

foo, 3-4 days is the estimate my BCN gave me. It's going to be mastectomy + node clearance. She said a lot will depend on the drains. I really don't want to come home with drains still in as I live alone. Plus, the operation is on Maundy Thursday so good luck having anyone around to discharge me over Easter weekend.

Handbagsatdawn · 09/04/2014 14:32

Speedy - you've got chemo brain then! Sorry you're feeling rough, have they given you Domperidone? You can take this every few hours and I found it quite effective.

Speedypenguin · 09/04/2014 14:34

Hi handbags.
Yes they have and that does seem to be doing trick a bit, although I keep calling it the name of a posh champagne! Off for a nap now.

UKsounding · 09/04/2014 15:19

Zombie Massage = fab! It was heavenly on a Friday afternoon...

Really ((((((((((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))) I know that you are tired and feel like shit, and you are trying to keep things together for the children all the time. it must be so difficult!

If it were mets somewhere else, wait and see might be a good idea. HOWEVER, liver mets are very, very treatable and there are many more options than the ones presented to you!!!! It is worth dealing with it asap as (1) liver mets can be to all intents and purposes cured and (2) if you let the tumor grow there it will massively affect how well/sick you feel and its opportunity to spread even further. Look here for info. and I am sure that there is a UK equivalent somewhere: www.cancer.ca/en/cancer-information/cancer-type/metastatic-cancer/liver-metastases/?region=on
(I guessed that your onc would take this tack. You have to hold this b*ards feet firmly to the fire though and make them do the best for you, not the easiest for them. )

  1. Here patients with mets to liver get sent to the new cyber-knife theatre with pretty good results. (I had herceptin last week so was quizzing patients to see what the standard of care is here.) Also a number have had old-fashioned surgery with good results. Rads are possible too.
  1. Did they explain that chemo for liver mets. is not the same as chemo for breast cancer? You only had problems with Tax, right? Firstly, there are other chemo drugs that work better on liver mets than tax anyway, so you shouldn't be getting tax.- navelbine is the one used in N. America, but it may have a different name in the UK. Secondly, chemo should be delivered directly to the liver (intrahepatic chemo) which targets the drug where it is going to be efffective an reduces side effects on the rest of the body.

I would explore all the possibilities very thoroughly before I agreed to 'wait and see'. I am slightly very annoyed with your onc. that he/she would even start this conversation without having worked out (a) whether this was an isolated spot or involved more than a single lobe of the liver and (b) repeating your bone scan etc. if it wasn't done recently. I would give him/her a solid kick up the pants and tell him/her to do his/her job.
In all honesty, a second opinion before you make any decisions would be a good idea and given your history with this hospital/onc. do you actually want them to treat you long-term? If you are going to change onc/hospitals, now would be the time to do it... Your hospital has sucked in many different ways up to this point and this conversation seems to be pretty inappropriate in the absence of up-to-date scan results!

UKsounding · 09/04/2014 15:22

Really Please look specifically at the page on treatment: www.cancer.ca/en/cancer-information/cancer-type/metastatic-cancer/liver-metastases/treatment/?region=on

Wren48 · 09/04/2014 16:52

Zombie, drains at home are a nuisance but can be coped with without too much bother, to be honest. I didn't find my two drains that I had at home for a week much trouble. The children hated seeing them, but that was the main drawback. As soon as I figured out a system for carrying them (cloth bag that could sling on the shoulder; baggy cardi so the kids didn't need to see) plus a system at night (husband kicked out of bed so I could spread them out), it just became an admin issue. Good luck.

malteserzz · 09/04/2014 17:19

Really you've had some great advice on here that I can't add to so I'll just send you a hug

Speedy next time you should get all of the drugs so it doesn't happen again

Zombie the drains are a pain and we all moan about them but I'd rather be at home with them than in hospital

Shattered after being at work all day, lovely day making Easter chick cards etc though !