Morning everyone
Thanks for the advice Nikki…it’s great to hear you’re through and there’s a light at the end of this hellhole. I’ve not heard about doing the Steroid tail, so I’ll ask.
Thanks to everyone RE advising about my pain on this T. I’m seeing my oncologist nurse tmoz so I’ll tell her about the pain. It’s now gone to my hips and lower back…I swear it’s like child birth splitting pelvis pain. I have issues with my bowels, so the only painkiller I can tolerate is paracetamol. Everything else reacts badly with my bowel and causes more pain issues. I’ll see what they say tomorrow. I’m using heat pads at the mo and meditation to get through.
On a good note, there’s blue skies and it’s Sunday, so I’m gonna spend time with my little family ?
Love to everyone xxx
Evening everyone,
It really is fantastic to hear from someone who has been through all this rubbish and come out the other side. Thank you, Nikki.
Little Pixie, I hope you were able to sort something out to deal with your pain and are feeling a bit better.
Went for a nice walk in our local park with husband today - good to get some fresh air, although I’m feeling breathless again.:smileyfrustrated:Also managed to do some Christmas shopping locally, which was very unusual for us - we’re usually in a slight panic by mid-December! I’m planning to go in to town tomorrow get a few more pressies, something useful to do with my time anyway.
LisaT & Jacqs: I am trying not to snack too much, as I realised I was putting on a lot of weight. I have tried to get temporary relief from the bad taste by drinking lots of different herbal teas, which kind of helps, though by dinner tonight I was so desperate for food that my husband had to remind me to slow down! :smileylol:So maybe that doesn’t quite work either?!
Rubbish night last night: I felt really hot one minute, then threw the duet off, only to get absolutely freezing within seconds, so kept waking up and eventually gave up around 5am - awake until c.7am, then fell back asleep, only to be woken at 8am by our neighbour’s son playing some wild game that involved screaming the house down (he’s only 3!). Hopefully I’ll sleep a bit better tonight, as long as my body doesn’t do that hot-cold thing again!
Love to you all,
Gx
Hi,
Nikki: so great you have got through this journey??
I am also triple negative and it scares me so much. Have you made many changes to your lifestyle post treatment?
Reading books on diet etc. but all a bit brutal… no chocolate, carbs, wine??.. all the good stuff!!!
Tip for those going through T chemo, I find if you get some vitamin C tablets and put 1/2 of one on you tongue it freshens your mouth a bit and gives you some saliva.
I am suffering from dry mouth and sore finger nails after 2 T’s.
Hope everyone has a good week:heart:
Good Morning!
Nikki49 - thanks for taking the time to pop in…so good to reinforce that there is light at the end of the tunnel 
Alittlepixie - I hope you are a little more on top of your pain and that your visit to the oncologist nurse finds some resolution for you…!
GabyF - I am also having problems sleeping- too hot, twitchy legs, head spinning, can’t remember the last time I actually slept well! I am lucky I can sleep during the day…probably the wrong thing to do but I have to as I am soooo tired ?.
Does anyone know what the hot flush thing is all about? I get the whole reduction in er but why do you get hot? Must google it!
MamaTony - I have my first T on Thursday…feeling anxious so following your tips avidly! Bit C tablets at the ready!
LisaT - hope you had a lovely weekend away celebrating your birthday ?
and to everyone…hang in there…it is a long slog…I don’t want to wish time away but I dream of spring sunshine and daffodils. GGx
Morning,
Hope you are feeling brighter today GabyF / ALittlePixie Hope you will get a solution from your oncologist today ALittlePixie - sounds like you’ve had a rubbish weekend ? Not heard about steroid tail but I had 3 days of steroids plus an extra day of steroids on half dosage … not sure if similar thing.
Thanks for the tip about the fizzy vitamin C tablets Jacqs / MamaTony - will definitely give that a try. Did you find that you follow the same pattern of SE with Ts MamaTony?
Had a lovely weekend away thanks Galligirl … really lucky with the weather … it was just what I needed as had a bit of a wobble on my birthday. Good luck with your first T on Thursday ??
Hope everyone has a good week ? Lisa xx
Hi Everyone,
Another rubbish night with hot flushes and nightmares. However, I dragged myself in to town, got some nice presents for my husband, then got back home, had some soup and crashed in to bed for an hour and a half. Absolutely shattered! Just got up and had another bite to eat and am feeling so much better. I did try to reduce my daytime sleeps last week, as I thought they may be affecting my ability to sleep at night, but that theory seems to be out of the window, so, like you Galligirl, I’ve decided that I might as well get some sleep when I can!
MamaTony: I’m also triple negative. So far I have very deliberately not read up anything anywhere on this, as I am terrified what I might find. However, I am very slowly (maybe, possibly :smileywink:) coming to the conclusion that I can’t shut out all knowledge forever and perhaps, just maybe, finding out a bit more might be a good thing. Did you google this at all? I’ve been told by various people here on the forum that that is a very BAD idea. Or did you just get some books from the library? I’m really not sure how to go about finding out more without scaring myself too much! :smileyfrustrated:I might ask at Maggies when I go there on Thursday and will let you know if they have any good tips.
LisaT: So glad you had a nice weekend and birthday. It’s so important to find those happier, lighter moments.:smileyhappy:
And finally, Galligirl, I think we all want Spring to arrive, with lots of hope, sunshine and flowers. It’s not about wishing time away, just looking forward to a brighter future (I’d better stop here, otherwise I’ll start blubbing! Seriously, I thought I’d done with tears, but they are often not that far from the surface!). So here’s to Spring and Sunshine!!! :heart:
Gx
Hi,
Lisa: I do find the side effects for me have been the same. Bad furry mouth for the first 7 days, have got anti biotics to sort that out. Loose my taste buds for the first couple of weeks and also suffer from dry mouth, have bought biotene mouth spray which helps that. Few aches and pains but manageable and tiredness…better than FEC tho!
Gaby: I have not googled as too scary. I think the main difference is that there are no tablets longer term so get 6 monthly scans I believe. My thinking is to live my life and try and be as healthy as I can whilst still enjoying life!
Thanks MamaTony … it’s good to know that they should be the same … can prepare a bit … or try at least ?
Ahh GabyF sorry to hear you’ve had another rubbish night.
I’m not looking forward to the hot flushes at all … can you take something to ease them?
We definitely need some lighter moments to keep us going … this nightmare seems never ending at times and just when I think I’m coping ok I start blubbing again. We are getting there tho … Christmas seemed a long way off when I first started treatment ??
Here’s to Spring, Sunshine and kicking the crap out of cancer ? Lisa xx
Hi Everyone
I am now on weekly paclitaxel and am suffering terrible with hot flushes.
I can’t sleep at night it is so bad.
Anybody else suffering like me on the same chemo.
I am also putting on so much weight as well which I didn’t expect.
I am now a bald sweaty umpa lumpa. ???
Kath xx
Your as bad as me. My pillows are soaking with sweat.
Have you had any other side effects?
I’m having my 3rd session on Thursday.
Kath xx
I’m having the odd nosebleeds.
Don’t have the bad taste at all like I did with FEC. That was horrendous.
My main side effect is pain in my legs, hips, bone pain, muscle pain. It’s manageable but not nice at all.
I was bed bound with FEC but thankfully I am up and about with this paclitaxel and still managing to live my life so far anyway.
Good luck with yours as well. Will be thinking of you.
Am here if you need a chat anytime.
Kath xx
Jacqs
I’ve found that fresh pineapple gives a bit of relief to the awful tasting mouth. Might be worth a try for you. Fingers crossed ??
Sue x
Good morning you lovely lot!
Thanks for all the best wishes RE my week of hell. So, I went to the oncologist who reckons I’ve had an allergic reaction to the T which is why I’m in such pain and crappiness. She’s taken full bloods and will call me today. They’re possibly going to put me on weekly paclitaxel instead.
Im stuck with paracetamol for the pain as I have bowel issues which restrict other pain relief unfortunately. Its the rib pain that’s the worst I think.
Sending love to everyone xxx
And I’m putting pineapple on my Tesco order!!!
Alittlepixie - glad you have an answer to how crappy you felt but sorry you had to go through all that! Hope things pick up for you soon.
I had my 4th FEC last Thursday. Not too bad apart from yucky taste in mouth, tinnitus, tiredness and achy/sore collarbone/shoulders. Oh and constant bottom burps. But I keep telling myself it’s my last FEC for now so just have to get through it.
Hoping you are all managing your SEs ok x
Hi everyone,
Had a new SE last night - felt very dizzy most of the night and when I first got up:smileyfrustrated: Had a long, hot shower, breakfast and then staggered into hospital for bloods etc. They checked me out, but everything seems as normal, so it’s just another of those unexpected & unpleasant things, lovely!
LittlePixie: so glad they’ve identified what the problem is. Paclitaxel is not too bad at all (it’s the carboplatin that gets me), so hopefully you should start to feel better very soon :smileyhappy:
Met a former colleague this afternoon for a tea. She had Hodgkin’s Lymphoma years ago and has been clear of that dreadful cancer for years. It was so good to see someone with a great positive story. We have to keep reminding ourselves that we will get through this and live a happy, healthy and long life! :smileyvery-happy:
Gx
Hello Everyone
I’ve been a bit quiet recently…been ok just lurking! Got my fourth FEC on Friday saw oncologist today ahead of this. Does anyone else go through having their lump measured with callipers? I feel very confused as today she said it measured 3cm by 2cm…I don’t get it because on MRI it was 2.3cm!! I should have asked or said something but my list of questions/symptoms was sooo long today ? Also I discovered that I’m neither HER2 positive or negative but borderline and they’ve requested a FSH test?! I have no idea what this means or what the implications are-all I can tell you is that it’s taking a very long time!!! It was requested early August!! Enjoy the rest of your week lovely ladies xx
Hi aley. I asked about the calliper measurements too and was told they aren’t comparable to mri or ultrasound measurements and usually measure bigger as it’s hard to identify where the lump starts and ends. So I wouldn’t worry about a few mms difference.
Sorry I can’t help with the FSH test. Think I had one but no idea what it was for or what it meant.
Thanks Pulapula, just wish I could get a more accurate idea of what’s happening to le lump! ?Bit frustrating doing chemo first ? wondered if anyone else is getting hair growing between FEC cycles? I haven’t gone totally bald yet and there’s definitely growth between cycles…
Hey Aley
I’ve finished my FEC and started T and my head has def got some fluff growing, although one of my eyebrows have just disappeared!!! I look very attractive…not! ?