All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

Good morning everyone.

Lily, that's great news for you about your 'retirement'

I too would love to start some exercise Royal, what have you been doing? I've been trying to get out for a short walk most days and really want to start swimming again. I just can't imagine my arm ever being flexible enough to do breastroke again at the moment though- although hopefully it will in time.

I definitely have cording and think I may have a seroma too- my armpit feels so swollen at the moment it's like walking around with an orange or something tucked in there. I really feel fed up this week. Also dreading the results of pathology on Friday.

Hello fresta. I started with some walking ( 15-20mins ) but am now doing some jogging( not much as i am not fit enough!) and some rope jumping. my calves and knees are aching and i know that it will take some time before i can do more, but i feel less guilty now for having at least started.
As for your seroma. I struggled with fluid build up a lot post surgery and at one point before chemo they drained some of the fluid from under my arm. I kept being told it would eventually sort itself out and, yes it did in the end, but yes it is very uncomfortable and sometimes achy. I found the more stretching i did the better my arm felt.
There was one time when I got really anxious about possible chording in my affected arm that I gently massaged it whilst doing my stretching exercises and something "cracked " and oh how good my arm felt afterwards and I could raise it without it feeling tight ! I did some reserach and found out that is what "experts" try to get to happen, so I felt quite pleased with myself
The amount of stuff we have to put up with from day one is just crazy, isn't it.

Hi all, thank you for all supportive messages and hope everyone is doing ok. I'm recovering from my mastectomy and lymph clearance ok I think. It hasn't been as painful as I thought. Trying to get my head round having my baby and then starting chemo. To be honest it still all feels like it's happening to someone else. I feel like everyone is hormone positive and I'm out on a limb with my hormone negative (possibly triple, still waiting for her 2 result). Does anyone at all have any experience of this?

Hi rust and good to hear from you post surgery. Take care of yourself and focus on one thing at a time if you can.
I recall Boobz was triple negative. She has not been on here for a while though.

Immunotherapy...in trials, and some pilot schemes in Germany.

Hi all
Glad you can keep working without the commute, Lily. Have you got a holiday coming up? I hope so.

Grand job on getting through surgery, rust. Hope you're managing to rest. Sorry I can't help on the triple neg front.

I'm through with radiotherapy now. Think I escaped relatively lightly though now suddenly shattered so taking a bit of time off. Feels odd not to be trundling to the hosp every day.

Very best wishes to everyone here.

Hi everyone, hope you don't mind me tagging along to the group...my mum was diagnosed with breast cancer following a screening visit in January. She's had WLE and is now going through 5 cycles of FEC, to be followed by a wee bit of radiotherapy to finish things off nicely! Now the radiotherapy bit I understand well (I'm a Medical Physicist in a hospital...) but the chemo has me a bit stumped! Mum's just had her 2nd cycle and is really suffering from both oral thrush and constipation. Does anyone have any wonder tips for reducing the risk of getting these in later cycles, or even just lessening their effects?

Thanks in advance, and & & and/or to all!

Hi Helter, welcome to the thread and sorry to hear about your mum. Constipation and thrush are very common. My doctor prescribed Movicol for constipation which I started on the day of chemo and too until things got moving again, usually abot 5 days. As for thrush, I used an antifungal gel, can't remember the name, it wasn't a wonder cure, but it helped a little. I found just avoiding eating anything sweet and sugary the most help for keeping the thrush to a minimum.

Rust, glad you are recovering well.

dinster, nice to hear from you, is that your treatment finished now?

Royal, thanks for the advice, I've been stretching but think this isn't helping the fluid in my armpit, it swells up with activity so have been trying to rest it more, but that's easier said than done, especially as it is my dominant arm. I'm already worrying about if I'll be able to raise it enough for the radiotherapy machine.

Helter Your Mum needs to drink lots of water - a couple of litres a day above any other drinks she may have. I was told that the constipation was usually a side effect of Ondansetron (anti-nausea drug usually prescribed). I haven't had oral thrush but careful brushing, use of mouth wash and plenty of water (again) will help.

I am a fan of the movicol, I take half a sachet in the morning just to keep everything moving. Guts can be very painful and temperamental. I also like the peppermint pills for cramping, gaviscon advance for heartburn . Before I had cancer my medicine cupboard contained a spare toothbrush and a packet of lemsip - these days I have a full pharmacy in there.

I had a bad day yesterday. I have developed a condition called numb lip and chin syndrome which is a great deal more painful than it sounds. The oromorph was hardly even touching the pain, I was climbing the walls. It is a tumour on a nerve in my jaw. I will need radiotherapy to treat the pain if I live long enough to be referred, although it is not so bad this morning. I wish we had a choice to use a clinic like Dignitas in this country, I would be better able to bear it if I had a way out.

Sleepy, I am so sorry that you had such a bad day yesterday and that are going through this pain. Pardon my ignorance but i got confused about whether it is a syndrome or a tumour? Bloody cancer seems to know no limits. I hope they manage to alleviate the pain for you. Sending you a whole lot of virtual hugs.
Helter, welcome and sorry about your mum. I was given something for oral thrush when on chemo, although I never got it. Forgot the name but you swoosh it around then swallow it. For constipation lots a dn lots of water especially first thing in the morning. Hope she feels better soon.
Fresta, ask your nurse if you can have the fluid drained ( fine needle aspiartion it is called) before the rads. It makes a massive difference.
Waving to everybody else.

Sleepy, I wish you didn't have to go through all this, I am sending best wishes and hugs. Have you got a new treatment plan in place? I am sure you will be referred quickly for radiotherapy and hopefully that will help. Being in pain is horrible and it makes it much harder to see a way forward. Hopefully today will be a better day.

Thanks Royal, the nurse said she could drain it but wanted me to see if it resolves by itself first. I think it might be a tiny fraction less today. Fingers crossed.

My nurse just rang, she wants me to go for results! Scared it's bad that she wants me to see her rather than tell me over the phone. She said "get some lunch then come to see me!" Too nervous to eat!

Sleepy, kindest wishes from here too. Is there anything more you can have for the pain? Are you managing to sleep? Sending hugs.

Thinking of you Fresta and hoping for good results.

Good luck for your results fresta. I'm getting mine on Tuesday-dreading it!

Sleepy I send positive vibes and hope that some decent pain relief can be provided for you if you have to wait for rads.
Fresta more positive vibes winging your way. Hope you hear good news.
I'm having another blood transfusion at the moment to build me up for my Seville trip with DS1. Can't wait to get away from the cold!

Well, it was good news! Complete Pathological Response. They found no cancer in my breast or the lymph nodes. There was just a small amount of DCIS remaining. I don't think I could have hoped for better than that.

I will now need 3 weeks radiotherapy. I'm a bit concerned because apparently there is a delay and it might be another 6-8 weeks before I start that, and they don't want me to start tamoxifen until after that because there is a chance it can interact and cause problems.

afternoon all, sleepy so sorry to hear of your pain, I hope you get a referral quickly for the radiotherapy and they can control this syndrome
helter welcome, I was given a mouthwash by the hospital as part of my pack of medicines so maybe your mum could ask her bcn for advice. I plan to take something for constipation before my next cycle (not quite sure what yet though!)
fresta brilliant news on your results, you must be so relieved
I've spent the week working just 3 hours a day which has restored my faith in normal life after 8 weeks off. I'm still undecided about the redundancy offer and need to make my mind up sharpish really
rust the MacMillan forum has a triple negative group, don't know how busy it is but perhaps reading through their threads may help you? Glad you are recovering well from surgery and I really hope you're able to spend some time looking forward to the baby.
lily hope your transfusion tops you up for your trip! Planning a trip away feels a long way off here at the moment so I shall enjoy yours vicariously (I have some spare DS's you can take - they're driving me loopy with silliness at the moment which is manifesting as fake American accents and sriously trying my patience)
Waves to everyone else!

Hello everyone, and thank you so much for all your helpful advice! Would love to thank you all individually but my phone is not very useful for scrolling up and down without throwing a wee hissy fit! Mum is drinking plenty of water so glad to hear that will help, she's also been prescribed Movicol for her next cycle. Like you sleepy mum formerly had a packet of generic ibuprofen and paracetamol in the house! Funny how things can change overnight. Your lip and chin syndrome sounds absolutely miserable, I really hope you get your slot for radiotherapy soon and that it does its job .

Fresta wonderful news about your results! How will you be celebrating this evening?

Sleepy I'm sorry that sounds miserable. I hope you get the radiotherapy very soon, it's horrid to be in pain. Sending love to you

Fresta that's great you must be so relieved. I'm sure the wait for radiotherapy will be fine

Sleepy I'm so sorry to hear you are in such pain. I hope your team can come up with a pain relief plan.

Fresta excellent news.
Good luck rust for Tuesday. Only 2 more weeks before you get to cuddle your baby.
Pepper I'm impressed that you are working on chemo. Good luck with your decision about redundancy.

Sleepy, please ask for an urgent referral to a trigeminal nerve specialist. Morphine doesn't work for this, at all. But other things do and there should be no reason for you to be in pain. There's stuff you could be taking right away. For example botox. No, seriously.
Sending much love. x
And waving to all.

Urgh, I have twitches Tuesday my right eye started twitching and now my index finger is spasming (is that a word?) on and off. Driving me loopy.
And I have an enormous zit, with the occasional stray hair wafting to the floor behind me I as I strop about the house. Oh, and the period from hell
is not improving my mood. DH and the kids are hiding, and my parents are coming to visit tomorrow for the first time in about a month. I was hoping to still look vaguely normal!

I celebrated last night with a meal at the local pub. I was trying to stick to my mediterranean style diet so chose lamb with roasted vegetables and cous cous and washed it down with a big glass of red

A funny thing happened to me today while shopping in Hobbs. Two lovely ladies came and asked me if they could take a photo of my hair so one could show it to her hair dresser because she wanted it cut like mine. Their faces were a picture when I said of course they could, but that it wasn't real hair and if they wished they could buy hair exactly like it in the wig shop round the corner. It made my day!

Pepper, I had twitches like that too from time to time on chemo, think it might be something to do with it affecting you nerves a bit, it soon passed though. Hope you feel more yourself again soon.

Hope everyone is enjoying the Bank Holiday - I somehow caught the sun yesterday and got told off this morning at the hospital (gently) for not wearing sunscreen. I hadn't realised how quickly the skin sensitivity could affect you I guess.
On the bad news my white blood cell level wasn't high enough for chemo this Wednesday, (it was 0.97 not 1.5 apparently) so it looks like they may try an extra GSCF (sp?) injection tomorrow and then new picc and bloods on Wed and chemo on Friday (as if I have anything else to do this week other than go to the hospital!) Or they may put it off to next Wed. Very frustrating. I have to wait for them to phone first thing to see if I should start my steroids, I've bravely offered to have an extra breakfast if necessary as they need to be taken with food