Member
Posts: 321
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

Quite a few of the symptoms overlap with chemo side-effects, and my pain level isn't too bad, thankfully. But I think I'll need to visit the ophthalmologist tomorrow so that they can check out my cornea, as the throbbing is getting a tad too persistent.

Member
Posts: 677
Registered: ‎03-04-2018

Re: June 2018 Chemo Starters

Bloody hell, shingles isn't pleasant. Hopefully you've only got a mild dose.
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Posts: 321
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

[ Edited ]

@Sally -- That is so upsetting. Worth noting that I am sure I have read on another thread that some people have trouble with letrozole and have been switched to one of the other two AIs and fared much better. (And some do well in letrozole, and don't do well on another.) So do report your symptoms -- especially lack of appetite -- to your team and see if they might want you to switch sooner rather than later. (There might be a "breaking in" process, of course, where they want you to stick with it for a few weeks before trying something else.)

In personal news: just in time for cycle 7 -- last hurrah! -- it seems I've got shingles. I just thought I had a rash on my forehead, some eyebrow acne from hair regrowth, and a sty on my eyelid from lash regrowth. The pain and weird tingling should have been a clue. Now on antivirals and curious to see if Friday's chemo will be the full cocktail or if I'll only be given my HER2 infusions and skip the docetaxel (an option thrown out by the oncologist this morning). My body does not like this stuff.

Member
Posts: 677
Registered: ‎03-04-2018

Re: June 2018 Chemo Starters

Yeah, unfortunately it is. Hair thinning is a common side effect of letrozole according to the leaflet and I'm losing far more than I did during chemo. Nearly 5 months, 20 weeks, of cold capping, and 4 weeks after all that's done it looks like that was a big old waste of time. I've also lost my appetite and can't face eying much, except in the mornings. The hot flushes I'd got past are back with a bang, worse than ever and I'm itching like a flea-ridden dog.

I was better off on chemo. I had none of this.

I have my meeting at Guys in the morning about the drug trial. See what joys that adds.
Kip
Member
Posts: 898
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Oh Sally how unfair about the hair, is it caused by the medication?  I just picked up my tamoxifen and bit worried about taking it but needs must.     Big hugs to you.  Xxx 

LJ
Member
Posts: 61
Registered: ‎12-06-2018

Re: June 2018 Chemo Starters

Oh Sally, I'm so sorry, I'd want to cry too, after you'd done so well with your hair through chemo. Have you spoken to a BCN at all?  Hugs

 

I've just started taking Anastrozole and I'm fearful of thinning hair from it. Like you I've already gone from long thick hair to short and the thought of it not growing back properly is almost too much to bear. 

 

LJ

Member
Posts: 677
Registered: ‎03-04-2018

Re: June 2018 Chemo Starters

Hi,

I could cry. Nearly 4 weeks past chemo and one week on letrozole and I'm losing so much hair it's unreal.
Kip
Member
Posts: 898
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Thanks CDC, I think i am going to try for nightime first off, if thats a problem I'll switch to morning, its got to be taken whatever so sleeping through it might be the best.  Seems crazy to be worrying so much about a pill when we've had chemo, operations etc doesn't it.

Sally - What a mare!  How on earth does this sort of thing happen... keep on at them!!

Kip

x

Member
Posts: 690
Registered: ‎25-03-2018

Re: June 2018 Chemo Starters

Glad that the rad planning went well and you won’t need rads to the middle of the chest. Frustrating that they hadn’t received all the informati9n needed beforehand. Certainly understandable to feel emotional. I’m glad the nurse was sympathetic and helpful. Good to get info on therapies and counselling too. It’s so important we look after our mental health in all this. I certainly don’t know how I’d cope without seeing my therapist once a week. I also hope you are SE free on the tamoxifen, Not sure when you’re supposed to take them but Sally’s reasoning taking them at night seems sensible.

Sleep well everyone xx
Member
Posts: 690
Registered: ‎25-03-2018

Re: June 2018 Chemo Starters

Aaaagh!  Makes my blood boil Sally.  It’s so unfair that you’re having to go to the effort of detailing all the inaccuracies and misinformation,  Surely the whole point of the investigation was to work out what exactly had gone wrong, issue a fulsome apology and explain how they’d prevent anyone else going through what you’ve had to.   I hope you can get some proper answers soon.  Xx

Member
Posts: 266
Registered: ‎22-05-2018

Re: June 2018 Chemo Starters

Sally you must be infuriated, being lied to is appalling. I admire your tenacity. 💪
Member
Posts: 677
Registered: ‎03-04-2018

Re: June 2018 Chemo Starters

Hi,

Dunno about anyone else but always take medication with possible side effects at night so that hopefully I sleep through the worst of it.

Received the emailed 13 page report for my complaint which was signed off and sent to the CCG nearly a month ago. I hadn't been sent a copy until I asked for it despite my emailed complaint in May triggering the investigation in the first place. It's full of inaccuracies and misinformation so at the weekend I'll go through it and send my reply which I don't think they'll be expecting especially when I send it to the CCG as well. I was told an investigation was being done when I was diagnosed in January but it seems not. I was also told my cancer was a new one and not a recurrence of my previous one at diagnosis. In the report it talk about it being a recurrence. Someone has lied to me. I'm like a dog with a bone. I'm not prepared to let it go.
Highlighted
Kip
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Posts: 898
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Hello,  just back from Rads planning session.  All painless, tattoos in place and only took about 10 minutes.  I saw a lovely nurse and when I burst into tears (been very emotional recently) she was very kind and talked me through my diagnosis and treatment adn explained its all normal to feel this way at Rads as its another treatment but also the light at the end of the tunnel.  They got me to fill out a form to say how I was feeling and will offer me some therapies and counselling should I want it.  Annoyingly before I could start the planning scan she said they hadn't got my results from the ANC (panic moment as thought I had been given someone elses last week) so she had to see the ONC as they had written I needed Rads to middle of chest.  ONC told her the nodes were clear so I don't need the rads to the middle of the chest after all!   Good job she checked.  Wish they would talk to each other.  Now going to start Rads on 29th November for 3 weeks.   Still haven't got the Tamoxifen as the GP hasn't sorted it yet.  I hope I do as well as your Mum does CDC, can't decide whether to take them last think at night or first thing in morning?

Kip

xx

Member
Posts: 677
Registered: ‎03-04-2018

Re: June 2018 Chemo Starters

Had a reply to my email query of the other day saying the report for my complaint t was finalised and signed off by the CCG last month.

Nobody bothered to send it to me though. Just waiting for my copy to come through now. How they can sign it off without my input is a it baffling.
Member
Posts: 332
Registered: ‎05-05-2018

Re: June 2018 Chemo Starters

Clare I feel fine now apart from the horrid taste ta. I am fine physically thanks after the surgery. I felt well enough to go to work today until I was ill yesterday.
I am glad that you have arranged to move your surgery to the Marsden. Will you have radiotherapy at the Marsden too if you need it? I have an oncolgy appointment on the 26th at my local hospital which I managed to get abit sooner as I said that I didn't mind seeing a different oncologist as the one I saw when having chemo is not seeing anyone in November.
Hopefully I won't be sick tomorrow fingers crossed. x
Member
Posts: 690
Registered: ‎25-03-2018

Re: June 2018 Chemo Starters

Kip glad to hear the exercises are making some difference. Hope the CT scan goes ok and it doesn’t cause you pain. I was talking to someone who has been on tamoxifen for a while. She went to her GP having been on it for a couple of weeks. He asked how she was and when she said she felt fine he remarked it was good because normally any problems manifest themselves within a few days. My Mum has no issues at all whilst on it so I hope I’m as lucky although I fear not- I’m having horrible hot sweats on chemo!

Sally sorry you’re still waiting to hear back with regards to your complaint- I’m compartmentalising mine and not getting my hopes up that I’ll ever receive an explanation of what’s gone wrong or indeed an apology. I’ll keep you posted. X

My chemo went ahead on Friday. I’ve to keep off my feet as much as possible. Oncologist wants me to get another two cycles under my belt which would be equivalent to 3 Docetaxel (I was due to have 4). The surgeon I saw initially has said she would expect me to have rads too but it will be interesting to see what the Marsden say

Hugs to all xxx
Member
Posts: 690
Registered: ‎25-03-2018

Re: June 2018 Chemo Starters

Oh Linda Thst sounds horrible. How are you doing now? Very wise to stay off work. Could the sickness still be a SE of chemo even though you finished some time ago? I’ve defintely got some issues with taste. Bizarrely everything tastes great when I start eating but as the meal progresses I get a horrible taste in my mouth or I can’t taste anything at all. My OH likened it to when you go into a place that smells strongly of something eg cats Yoi get used to the smell then can’t smell it at all. I think my tastebuds get used to the taste of things then switch off - it’s very disconcerting. I was told to be careful of prawns whilst on chemo so they might be the problem. Or indeed a bug. Just look after yourself and take care. Clare Ps meant to say how are you doing physically following the surgery? I got a call to say the Marsden have accepted my transfer of care. I’m relieved!! See them in a couple of weeks to start planning what steps to take next.
Member
Posts: 332
Registered: ‎05-05-2018

Re: June 2018 Chemo Starters

Hi,
I have been sick yesterday and today but not sure if it is due to the prawns I had on Saturday a bug or the chemo as I have felt sick on and off from before surgery. I rang the helpline and they said stay off work so you are 48 hours clear of being sick as there are alot of bugs around now. The bad taste I have they say is due to chemo. My Mum has felt sick and been off her food unlike me. Has anyone else been suffered like me? (finished chemo nearly 10 weeks ago and surgery was 3 weeks ago but this is the 1st time I have actually been sick). Thanks. x
Kip
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Posts: 898
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Hi Ladies, sorry for not replying over the weekend, had Mum to stay as OH and step dad took a boys holiday for the weekend.   Been very busy.  

Georgia Gee - hmm your seroma problems sound like mine,  I am getting movement back in arm and the seroma is definately going down but its still there and tight around the joining bit from armpit to breast (or what was my breast).  Its not painful but tight and still feels like a lump when I put my arm down.  I guess I'll keep on with the exercises and see what happens.  I keep my heart cushion pressed under there most of the time and that helps too.  Just hope my arm movement is enough for the CT scan tomorrow.

JacB - good to hear that your seroma went eventually, although not great about the scar reopening. Nothing is ever straight forward is it.

Meesh73 - your post made me smile... I imagined sticking to the fridges in the supermarket with my knicker magnet.. I haven't read any very convincing posts about it helping but worth a try sometimes I guess.   I haven't got the Tamoxifen yet as need to get to GPs to pick it up. Do you take yours in the morning or evening?  Any ideas for whats best?

CDC - how did the chemo go, hope you are fairing ok this time round. 

KTK - how are the rads going?

I've got CT scan tomorrow and rads planning, looking foward to getting this bit started, but actually after the euphoria of gettting good news on Thursday I've felt a bit down really, it seems its up and downs all the way doesn't it?   Just now feels like another huge hill to climb and then the unknown after that? 

RedRose - how are the nails?   I'm going to remove my nail varnish and see whats what with mine, they keep breaking very short so not exactly attractive at the moment!

Kip

xx

Member
Posts: 266
Registered: ‎22-05-2018

Re: June 2018 Chemo Starters

Have faith Georgie, at one point I thought the seroma would never go but it has now. Keep squishing! X