February 2017 Starters

[atomicjojo]

Thanks for that Moijan!

I drove it all the way in tonight 😀 No leaks!

Last one tomorrow night, thank God. 

JoJo xx

[Maria12]

Plus upper back and neck ache , nurse reckons thats the injections kicking in x

[Maria12]

Reference injections, if they keep infections at bay then all good .my head been very heavy tonight , but seemed to clear abit with eating , decided to try dominoes think its been only thing that ive managed to taste since chemo ..doing reg temperature checks as have dry sore throat but then im in a warm house all day xx

[Moijan]

Hi Tessa, Mojo and Maria, thank you. Yes I was told that sometimes the gcsf can work too well in boosting our cells..the onc scrurinises mine,

i think it could be reduced if the cells got too flush!  

Re self injections...

Yes, I realise the self injections are/can be very off putting. 

I never thought id be able to do them! However, I got a dvt from capecitabine and have now been self injecting In the tummy for about three years!  The blood thinner leaves little lumps which one has to try and avoid injecting into ...but they go away after a while.  

The GCSF doesnt leave lumps and doesnt hurt.  I have three daily injections after each Eribulin.

re the fluid coming back out of the injection site...this frequently happens and I dont think it matters...obviously we lose a Tiny  fraction of the dose.....its more likely to happen if the needle isnt quite in to the hilt. You could discuss it with your onc or nurse.

hugs, moijanxxx💜💙💜

[Maria12]

Interesting article and does make you realise about our nhs , im having 7 days of flistagram , no blood tests till 3 days after i finish , i wonder if you can end up having too many injections .hats of to you jojo ive opted to let the nurse do mine as im way too worried about doing them myself .Its much better for me not to see the needle xx

[atomicjojo]

Interesting article thank you.
Made me realise again how lucky we are to have our nhs. Can you imagine having to barter with insurance companies to fund your treatment?

Has anyone who's injecting themselves had an ooze from injection site? Like when I'm pushing down on the plunger & withdraw, a little bit of the liquid comes back out. Not sure how important that one little drop is!

Happy Saturday folks
Jojoxx

[Mama T]

Hi Moijan

thanks for the info. They did time the Neulasta so it was at least 24 hours after chemo. I had the chemo on Thursday morning and the neulasta on Friday lunchtime. I might ask about having it the day after this time and see if it makes a bit of difference re side effects overall though.

Tessa

[Moijan]

Hi Mama T,

interesting you were given neulasta the day after chemo,  im on Neupogen, which is similar and was told i must begine the injections at leasr 24/24 after chemo....you might want to check with them if it should be given a bit later next time......i get the odd bone ache but nothing unpleasant.this article is very informative...xx

https://www.verywell.com/neulasta-vs-neupogen-for-chemotherapy-treatment-430223

also...drink buckets of water if you can

hugs,

Moijanxx

[zena75]

Bless you jojo . A uti on top 😓 just for fun eh .. what a proper horrible thing chemo is .. let's hope it's doing the thing it's supposed to you amazing girlies xxx

[Lexxy]

Jojo, Maria and Zena I hope you are all feeling better very soon. Sending loads of healing vibes and hugs your way. You are all amazing xx

[atomicjojo]

I've given up today & gone back to bed where its nice & warm. Feeling very out of sorts today, but I think it must be a combination of uti, antibiotics plus those pesky g-csf injections. Oh yeah and the chemo obvs. 

I had much more energy on the Docetaxel albeit with aches and pains. I dunno. Frustrating FEC!

JoJo xx (no snow yet!)

[zena75]

Jules could you repeat Facebook page stuff as Maria trying to locate it .. I'm rubbish at Facebook so totally forgot how xx

[zena75]

Jojo is right though I felt much better when stopped the drugs even anti sick ones - However I did start nozinan but that was for sleep and anti sickness..and it was what I needed after 5 days of pure hell tbh xx

[zena75]

Maria I have pmd you xxx

[Maria12]

Thanks jojo , might get some aloe vera juice , just want a good day so i can go home .my poor mum is doing everything from going to shops and finding lifts to feed my cats , worried about the toll its going to take on her x

[atomicjojo]

I stopped my Ondansetron as soon as nausea stopped as they are constipating. Kept on the full course of Dex tho. I reckon once you stop taking tablets & let your system reboot you'll feel better. Aloe vera juice is good though!

Jojoxx

[Maria12]

Thanks sue , only tomorrow left for steroids and anti sickness tabs , hoping stopping them will ease things , fingers crossed x

[Maria12]

Thank you zena , what where you recommended for constipation, only been couple of days which tbh is normal for me im not an everyday girl 😂😂 though thinking it may ease my stomach a little x

[zena75]

Maria .
Call gp if you can and get some nozinan it will help you sleep and relieve nausea for a bit or equivalent as per my antiemetic post on page 12 or 13 now on here I think.
I was where you are ...so so so so so awful , 🤢debilitating and exhausting too .. to feel sick all the time is one of the worst things and very exhausting even with sleep.
I was bathing a lot so I could relax . As I was up all night too.
I'm sorry you feel it's affecting your son , I know as my 10 yr old looks worried at me sometimes. It's unfair for them to go through this , but also unfair on us. The only thing we can do is get better for them. I know that sounds patronising but it's true.
I'm wondering why so close together for the chemo ? I guess to hit it hard ..so this does mean the cancer is getting a real bashing especially if you feel so awful the cancer will be feeling worse so that's good💪🏻.
You are being an incredibly brace lady and this hell is for a really good reason and it won't be forever I promise, mine did ease and I was very bad too .
Keep going and fighting xxxxx

[Sue H-S]

Hi ladies,

Sorry to butt in on your thread. Having read Maria's struggle on another thread and seeing how others struggle.......

Having a diary to record your symptoms, side effects, temperature, etc. is very helpful.

Should any of you struggle with nausea or diarrhea for more than a day or two - you really ought to contact your chemo team or helpline. It is very important that this is addressed quickly. Don't despair too much - your anti sickness medication can be adjusted for the next time. hence the diary is a very good idea.

Please do not take any additional medications, which have not been approved/ checked as ok by your treatment team. They could be contraindicative to your chemo regime.

Steroids - as you come off them, you might find that you 'crash' - so be aware and be kind to yourself.

I have gone through 6 x FEC and am now 4 1/2 months past my last one. For some, the first chemo is very challenging, whilst others struggle more further down the line. Chemo affects everyone in a different way due to type of regime, age and underlying health challenges.

Please call the chemo helpline or your treatment team, if anything at all is amiss - that is what they are there for. Do not wait and see, whether it goes away or gets better - your body will, through chemo - nor react and work the way it usually does.

Hugs

Sue x

[Maria12]

Jojo like you ive never been off sick , could always work through anything i got hit with but this is so different .my plan is bed straight to bed after chemo in future ..instead of waiting for side effects to kick in ..doing my temp about 4 times aday .it went up a little past my normal earlier but not enough to warrent there phone call .steriods have kept me awake all night which means i have to constantly deal with the nausea feeling . Past two days have already started to take its toll on my son .feel like a crap mum right now aswell x

[Maria12]

Hi zena im having the gcsf for next 7 days was originally 5 but its been changed, then only 3 days till chemo review then 2 days after chemo .dont feel like there be a good week ..no sleep tonight as steriods have me wide awake , which isnt helping the nausea think if it werent for that id wouldnt feel so bad one thing i stand is feeling sick ....never realised gaviscon was so vile neither lol xx

[atomicjojo]

Maria, I strongly recommend that diary! You can write everything down daily, how you're feeling, what you've taken, eaten, achieved (because you WILL achieve stuff)
It will enable you to plan next cycle. Once you know what to expect, you can plan! It gives you a bit of control back. You will get in to a routine with the cycles. You'll know what days you'll start to feel better.
However, if you're feeling really ill, I'd suggest phoning your emergency contact no. for further advice. Dont ever worry about bothering them. How's your temperature? Do you monitor it? I felt the first cycle was the worst as I just couldn't comprehend what my body was telling me, going from being very healthy, never off sick to having cancer & chemo!
Awful thing to say but you'll get in a groove. And before you know it you'll be half way then it's all downhill from there.

Zena. You have my total admiration. Can't imagine your pain/embarrassment right now!

Jojo xx

[zena75]

Maria .. it's so awful I know .. I was the same ..even the lead thing I'm sure I wrote that in here ..
They said about patches next time il tell you when I know more ..
Have you got naproxen? That knocks you out so you can sleep and have me and hour after of slight peace From SEs ..
The gcsf injections also are rough so when they stop that will ease . Or If you had the big shot it will ease in 2 days ... I found eating crap like KFC and subway sandwiches - weetabix and brown sugar , Pitta bread and houmous .. grapefruit juice diluted for different taste as water tasted vile .
I just ate what I fancied , keep eating little and often .. also prunes or something as try not to get constipatied because ondazatron will do that .. and then your me in AE with a nice man surgeon wiping cream off to inspect your bum bum 😣
Also my downstairs is now coming out in clumps so he got a load of them too .., god The embarrassment is excruciating 😖
Maria I want to help you .., can I offer anymore help ? Ask anything please or just moan and moan .. it's so awful and we understand and you need to vent it babes xx

[Maria12]

Really wondering if i can cope with 4 months of this , with them so close together , can beleive how ill i feel ..everything so contradictery if you feel ill phone or go to hospital .side effects say you feel ill ..if you feel this phone hospital or go to hospital , or call 999 its like what meant to be right or wrong x

[Lexxy]

Huge hugs to all you ladies feeling rotten today. I can only imagine at the moment what its like x 

[Maria12]

Hi all , looks like a day in bed for me , body feels like a lead weight , not sure if thats normal xx

[Jo C]

Big hugs Zena. You really have had a raw deal (I was going to say bum deal but I thought that might be insensitive and make you laugh!). Hope you're ok and they get something sorted for you.

Jo xx

[atomicjojo]

Zena I don't know how you cope! It sounds so painful. Hope your onc will sort you out for next cycle. Big hugs

Jojo xx

[atomicjojo]

Sorry to hear that Tessa.
It's hard to figure out what are se's or something else. Maybe you've suffered more as you've had an almighty dose rather than smaller regular doses like me. Who blimmin knows?

So today for me is...yep! UTI day!! Yay! So am currently sat in gp waiting room hoping not to contract tb or something. Uti might well explain the never ending fatigue though. Happy days .

Have a good day team

Jojo xx

[Mama T]

Morning all

Sorry that we all appear to be suffering a bit with some aches and pains and everything else 😞 

Jojo, I had the single shot GCSF Neulasta, which is supposedly slow release. I had it the day after chemo. Felt yuk the next day (but suspect that was poor reaction to steroids), then started having butt pain 2 days after jab, this then carried on for about 3-4 days with aches in shoulders, back and legs. I also felt like I was getting a cold, and one lymph node swelled up (went to GP, no sign of infection). It's difficult to know whether our aches are unrelated, or what they are the SE from e.g. chemo, steroids, GCSF, antisick etc

As for constipation, my son takes medicine for this. Lactulose and Movicol are stool softeners, but to get things moving, sodium picosulphate does the job (heavy duty), but can have very nasty side effects (it's what they sometime give you before tummy scans for a 'clear-out')

Tessa

[zena75]

I haven't been constipated which may sound odd I know but I think it's the being stuck in bed for 7 days with the horrific nausea .. if I'd been consitpated I'd have cut my body and n half by now lol 😬X
I went to gp but couldn't bare to let her look to much .. she said she couldn't see an infection so I thought it would be clearing up by now .. but it's worse so I think may be infection 😢.. I'm mortified to be talking about this and can't believe I am .. the things we start to lose all vanity's for is astonishing really .. eg the boobs out thing too 😳🙆🏻Xxx

[zena75]

Thank you .. I've been given proctosedyl from gp and it's not doing a thing x

[Sparkydee]

Xyloproct...

[Sparkydee]

Maria, sorry u are feeling wiped out. Hope the hospital can offer some advice to help..I've only had indigestion a couple of times in my life so heart burn must b awful.
Zena I had internal piles a few years ago, was excruciating and felt constipated but couldn't push.. gp gave me some cream with lidocaine and it was marvellous. Will get the name when I go upstairs...
might sound daft but I'm hoping for diarrhoea as SE rather than constipation, it's a battle I fight so often 😖 Xx

[zena75]

I didn't take ..

[zena75]

Jo jo I did take antihistamine but only because I was still taking so many tablets and more felt greedy 😉

Maria - poor you Hun I know how you feel it's so awful .. I had gavisgon for the lovely heartburn 😞
If you are like me I felt better day 6-7 but I hope you aren't as those days we're very hard to get thru ..

I am going to AE this morning as my 🍇Are so bad I cannot walk or move .. I even had 2 codine ( not supposed to take as constipates ) because I was in so much pain and it didn't touch it 😩😩😩😩
Never been like this before it must be from the chemo , so have your weetabix girls lol 👍🏻Xxxxx

[Maria12]

Thanks jo c , cant beleive how rough i feel and i have heartburn to the hilt , will ring hospital in morning to find out what i can take ..just going to loo is a chore x

[atomicjojo]

Oh Jo perhaps I'm being premature then! I guess I'll wait & see. I've got another 4 days worth to go. Fingers crossed as I can't stand being cooped up for too long!

Jojo xx

[atomicjojo]

Zena mine are spring loaded too 😁
No I'm actually ok on them this time so was wondering if it's the change of brand or what? I do take antihistamine as well tho. I'm day 6 now & still so fatigued though. Wet rag mode. It's hard to accept sometimes.

Jojo xx

[Jo C]

Well done Maria. One down is a big step. The next few days will feel strange but stick with it. I had a dreadful headache the first night and was desperately tired. I was also desperately thirsty and couldn't drink enough water for the first week. If you feel like eating, try snacking little and often for nausea. Take all the drugs you can for anti-sickness. I was given metackoorimide to take if needed. I didn't wait until I needed it but used it for the first few days before meals. Day 2 I was exhausted but managed nausea quite well. Day 3 I felt lots better and went out for the day. I felt a bit out of it but ok. Couldn't wait to get to bed though and sleep. Day 4 I felt human again and have got less tired as the days have passed.

Jojo, I injected Filgrastim for 7 days and was feeling quite smug about not aching. It hit me yesterday and my hips and back were so achy and shooting pains in my spine. It's the first day since chemo that I put my feet up on the sofa and slept after dropping the kids at school. I really had to take it easy. Back to normal today though, thankfully.

[zena75]

I had them - 5 days . Spring loaded .
As I felt very nauseous anyway it's hard to tell but I can say that :
1st day after I stopped : so day 7 after chemo I felt better and then on :
day 9 I felt very bad, like flu was upon me .
And then 10 much more normal .
I blamed the dox as I took that for first 3 days afterwards.. but I think now it was the gcsf .
Why jojo are you feeling bad ? Xxx

[atomicjojo]

Can we talk about g-csf injections?
On my first bout of chemo I had Lenograstim (Granocyte) brand where I had to make it up myself to inject but the trust has had a review presumably cost related and now give Filgrastim (Zarzio)(kept in fridge).
With the Lenograstim I was much more achey although this could've been due to the docetaxel. I have felt fine on these new ones. Would like to hear everyone else's experiences!
Jojo xx

[Maria12]

Yeah, checked anti sickness se's apaz headache is one . Feel so bloody rough , nurse comes out for 7 days for white cell injections , then i have 3 days till next blood test then back on chemo ..god i hope it gets better as time goes on xx

[zena75]

Yep I had a headache too .. so it's ok must be sort of normal for us lot 😣
Bless you sweetie xxx

[atomicjojo]

Oh Maria that damn nausea!
Take whatever tablets they've sent you home with & drink lots of water.
Hope it doesn't get too bad for you

Jojo xx

[Maria12]

Thanks all , the nausea is slowly kicking in plus headache , is headache a normal thing cant find it in side effects xx

[Lexxy]

It's lovely Laura on the FB group - Pinkloz83 on here 🙂

Then Susan is the day after us and we have 2 ladies starting the day before us

xx

[Sallyann43]

Lexxy - who else is starting the same day as us? I know Susan is starting the day after xx

[Mama T]

Well done Maria, one down.  At the time of my first FEC I felt wobbly, and looking back, I think my head was somewhere else, definitely not on top of my shoulders, for probably 5 days. Whether that was the chemo or as Zena says, your take home pharmacy, I have no idea.

Best thing is to take each day at a time, and rest if you need to.

Tessa