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June 2018 Chemo Starters

LJ
Member

Re: June 2018 Chemo Starters

Hoorah for movement KTK - that's good news!

 

I had a good night's sleep - DH slept in the spare room so I had plenty of room to move around and that definitely helped.  Legs seem ok this morning, just feel as if I'm post flu now, slightly spacey and a bit out of sorts.  Mouth is still ok, no ulcers and taste buds only slightly affected. 

 

Trying to decide if it's wise to go away to our caravan tomorrow for a few days.  Part of me thinks it would us good. The other is a bit scarred by events of the past two days. It's my birthday on Friday and I'd love to be on the coast for it. 

 

Have good days ladies. 

 

LJ

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Glad you got out in the end LJ, its good to get home isn't it. Sorry to hear the pain was so bad though, it must be linked to the injections as I don't have them (as yet) and didn't really suffer with aches, just slightly heavy legs and hips but nothing major. I may have jinxed that now... watch this space
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Yippeee
ktk
Member

Re: June 2018 Chemo Starters

Yeah! Movement !! Hopefully I will have a brighter day!!! Love to all xxx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Morning everyone.  

cdc sorry tk hear that the sickness is still troubling you, at least on T not many see. To auffer with that, i certainly havent.  Such a shame you didnt get tk eat with OH i aas the same yesterday, we were going to have lu ch out but as i cant taste properly it seemed a waste so we didnt bother.. makes me feel so sad to keep missing out on things.  Its good to hear that your daughter could share her tears with you, thats important.  My daughter told me that she cried when she knew j was staying in hospital but didnt tell dad because she didnt want to upset him..  bless her..  i feel she is hiiding a lot of fears and worries from us.  She said ahe didn't really jnderstund why i was in hospital either, i dknt think OH thought to explain to her.

ktk ,. I had terrible constipation too, i got some lactulose from tesco and that sorted it in a day or so.  Sorrh to hear you are feeling exhausted, i am too for the first time really during  this but i tujnm it buikds up as uoh go along doesn't it.  I still have slimy tongue and altered taste buds but otherwize thats the only major side efect, no a aches.  How are your fingers feeling?

Embolorry, good lluck for cycle 2, hopefully this one may be easier?  My Onc said the first is usually the worst.   Sending positive vibes xxx

Member

Re: June 2018 Chemo Starters

Morning

Funnily enough since chemo Friday I've had the best nights sleeps I've had in ages, waking up and tossing and turning with hot flushes was the norm for me pre BC. I did mention to my oncologist about going 24 hours without sleep after the last round and asked if he could further reduce the steroids. He was going to ask the head bloke. I have mine as an infusion now before chemo so maybe he did reduce it? I know my blood sugars have definitely been better then they were previously with the steroids. Fingers crossed, still no side effects. I can't believe my luck on this.

Glad you got home LJ. It's bad enough to have to deal with all this stuff without extra trips to hospital.

Member

Re: June 2018 Chemo Starters

Hi all,
Been awake since 4, well awake at midnight, then 1.30 then 4! Ah bloody steroids!
CDC, sending hugs, it’s so hard having children and going through this isn’t it? This time will pass and just take each moment as it comes. Sorry you couldn’t eat with your OH - that must have been hard for both of you!
LJ sorry to here about your hospitalisation. But glad you’re out now, take it easy and be kind to yourself!
I am due this morning for my second cycle of T, absolutely dreading it but have been fasting to see if it makes a difference to side effects - I will let you know if it does!!!
Enjoy this week Kip - the last week before was the best week for me and I felt almost normal...
Sending love to all,
Em
Xxx
Member

Re: June 2018 Chemo Starters

Glad you are out LJ! I count myself lucky that I’ve had no hospital stays due to chemo as yet.  Sorry to hear everyone is in pain too,  

 

I’m getting worried about the T part.  I’ve definitely felt an accumulation of side effects on my fourth round of AC.  Even with the steroids I’m back to feeling nauseous the majority of the time and have little appetite but I don’t have any pain,   I think my taste buds are gone too 😢 I’ve felt pretty ok psychologically on the whole apart from the reaction to steroids but this cycle is getting  to me and I feel so low.  Thankfully my sister is looking after our daughter tonight so my OH and I are having a night away.  I couldn’t join him for dinner as the thought of food just made me feel so ill.  Earlier, it was lovely to see my daughter so happy playing with her cousin,  Haven’t  seen her smile so much in weeks.  Yesterday my husband was out and she came to me sobbing her heart out ,  She said she couldn’t explain why.  In the end we just lay on the sofa hugging and crying together,   Chemo sucks!!   It was such a miserable day and the rain just reflected our mood,  I really feel getting back to school next week will be good for her.  I also need the opportunity to rest more.   

 

Hope we we all have a good nights sleep and as you say LJ fingers crossed for a better day tomorrow.

 

Hugs to all xxx

LJ
Member

Re: June 2018 Chemo Starters

They finally let me out about 2.30pm - three hours waiting for pharmacy nearly killed me!  Legs are much easier today, though the hospital concentrated on high temp and haven't given me anything stronger for pain relief. I have got co-codamol left from op so I'll be taking that. Have seven days of ABs along with injections to contend with now. Have stocked up on prunes, prune juice and senna tabs as I don't want to get caught out. 

 

Will be having a convo with Onco about pain relief and minimising symptoms for next time, I can't cope with that level of pain for that length of time again. 

 

Have borrowed a foot spa and one of those electric impulse machines that Ian Botham advertises from our neighbours. She suffers from fibromyalgia so has a number of tips for leg pain. She's also given me some Biofreeze which is a topical cold first warm second spray, which should come in useful. 

 

Fingers crossed tomorrow brings better days for us all

 

LJ

ktk
Member

Re: June 2018 Chemo Starters

Sorry to hear of your visit LJ. Hopefully you have escaped by now!

After s good start I have been completely wiped out! We went out for lunch today but I had to force myself and have come straight back to bed! I am dozing on and off. Taking codeine if I feel achy and am severely constipated which doesn’t help. I am taking 4 Macrogol at a time!! Hopefully something will happen soon!

I have my LGFB session tomorrow. Hope I am well enough to enjoy it!

Love to all Kxx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Thanks Jaqb i hope thry ofer me a reduction, i dont want a hospital stay again.  

LJ hope things ok and you gethome doin. Xx 

Member

Re: June 2018 Chemo Starters

@kip
Glad to hear your mouth is much better My Oncologist offered me a dosage reduction iof either 5 or 10% plus injections because of neutropenia. I took the 10% and had no problems. Let’s hope yours can tweak your dosage to improve things for you.
@LJ sorry to hear you’ve been in hospital overnight, it’s exhausting isn’t it? Hope you are home and resting soon. Best wishes to all
Jacq x
LJ
Member

Re: June 2018 Chemo Starters

Well I've spent the night courtesy of the NHS. On an assessment ward. On a trolley.  I phoned because the leg pain was unbearable and temp was 37.7 so they invited me in. Bloods were fine, but wanted to monitor me in case injections were masking sign of infection.  Had a chest x-ray, three lots of antibiotics and now glugging water to try and get a sample out.  Fingers crossed once I've done that they'll send me home. Just desperate to sleep. 

 

LJ

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Morning!  Yayyy ulcers gone....  Slimy tongue still here but feeling slightly less slimy...  Taste buds 50/50 so at least some improvement.  This has been a long cycle or so it feels. 

Cdc how are you feeling, less sick i hope?

Ktk hope the nasty mouth isnt getting worse .Have you had bone pain?

It was so miserable weather here yesterday like first day of Autumn but OH says September supposed to be hot??  We are havjng a woodburner fitted tomorrow..  ive always wanted one and after this diagnosis we thought why not??  Im very excited although have no idea how to light a fire🤔, . 

Hopefully gettjng a walk today as yesterday got rained off.  Back to work tomorrow and then Onc appt on Wednesday pre next chemo, wondering whether they wilk lower the next dose as had neutropenia?  Or maybe I'll get the injections?  Lots of questions to ask, also need to decide kn having nodes removed or not?  Lots to think about.

Have a good day ... Kip xx

Ps .hair lookjng fluffy on top but pure White eek.  

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Oh dear nasth mouths seem to be the norm dont they.  linda I am on day 14 and still nn taste.. althiugh, dare j say, i think it may be alowly returning.  I h aventried pineapple and ii have some, might give it a go, i find i can.tolerate soup but mism things taste and feel like soap.  If any of you do get ulcers i found Iglu helps a bit .it creates a barrier over them for a while.  Salt water with bicarbonate of soda in as a mouthwash helps too,o, Difflam is good too.

Member

Re: June 2018 Chemo Starters

Thankfully I've had no mouth problems whatsoever.

All I've had is the clots which they said is more usual with a picc line which I don't have. The arm is very lumpy and bumpy. If I twist it to the side it looks like I have a 6 pack there and you can feel a hard vein all the way down my inner arm from elbow to near the wrist. Doesn't hurt anymore though.
LJ
Member

Re: June 2018 Chemo Starters

My mouth is faring well, sweet things taste a little off but other than that all ok. I've been hit with achy legs though and my word they hurt!  Consequently I didn't get much sleep so I'm not the happiest. Alternating paracetamol and ibuprofen with the occasional co-codamol. Miserable. 

 

LJ

Member

Re: June 2018 Chemo Starters

Kip I really do hope you have at least some relief before your next T. You’ve had it so tough. I’m grateful for the heads up about the mouth problems, It seems no one is really escaping them! Hope everyone can have a restful day.

Defintely time for a little joy jig Shi! 💃🏻🕺🏼👍👍! It really was a relief! X
Member

Re: June 2018 Chemo Starters

Kip my mouth is awful too.chewing gum helps and tried frozen grapes yresterday which were cold to swallow.i have tinned pineapple chunks too which are supposed to be good. I cant taste anything. Ive tried sprays gel mouthwash toothpaste but just riding it out. 10 days til last chemo.seeing surgeon on Tuesday but think surgery is 6 to 8 weeks after last chemo. Hopefully find out more on Tuesday!?
ktk
Member

Re: June 2018 Chemo Starters

I’ve been very lazy the last couple of days. No energy but plenty of dozing which is good. My mouth feels grim but no ulcers yet. No incentive to go out in the rain! Watching crap tv 🤣🤣 Kx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hello, geat news CDC one less thing to worry about!  kTK glad you are atill feeling ok, lets hope T keeps being kind.  I still have sljmy mouth and no taste really altho the ulcers seem to be getting slowly better.  Cant believe i only have 7 days until next T, i really hope i get some good days before then. 28 days hntil last chemo so trying to be positive and focus on that.  If it wasnt for the mouth issues i havent actually had many other SEs, slight aches and fingernails hurt a bit but the mouth OMG!!  I did just read the leaflet with my antibiotics s and one of the side effects is .a reduction in white blood cells... Great hey!

Enjoy your day ladies, I'm joojng to get a little walk as going stir crazy!  🙃

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Kip glad your home ❤️❤️CDC 👍👍👍great news it’s gall stones and not the other, hope you had a little joy jig 💃🏻💃🏻🕺🕺💃🏻💃🏻 💕💕✨✨Shi xx
Member

Re: June 2018 Chemo Starters

Good to hear you got so,e rest ktk and Sally.  I’m Hoping to get a good nights sleep tonight too.  I was up at 5am for breakfast and meds as I had to fast for 6 hours before my gall bladder ultrasound.  Felt rather queasy all day as a result.  Thankfully scan shows I do have gall stones and calcification but the BC has not spread.  

I was pretty sure that would be the outcome but relieved to get confirmation all the same,  Looking forward to starting to feel more normal in the next few days,  

 

im thankful i’ll be getting a PICC line next cycle. Anything that will help me get through T has to be a bonus,  

Hope your throat feels better soon ktk and your temp has stayed normal.

 

xxx

ktk
Member

Re: June 2018 Chemo Starters

Glad you are home Kip. Makes me thankful for the Picc!!

I’ve had a brilliant nights sleep! I was a bit flushed on and off yesterday but my temp kept returning to normal. I was really sleepy so took some codeine as a precaution and have slept through to 6.30am. It must be the best sleep I’ve had since this started!! I have a very achy throat, so will keep the fluids up and keep an eye on my temp.

Have a good day everyone xxx
Member

Re: June 2018 Chemo Starters

Not a bad sleep considering the steroids yesterday. A good 6 hours straight which for me is good any night. Wide awake now. Son has a new bed coming between 7 and 1 today and he has to take his girlfriend to work so I'm waiting for it, watching Love Island Australia Smiley Happy
Member

Re: June 2018 Chemo Starters

What a long day Sally! Hope you can have a good night and enjoy the weekend. Xx
Member

Re: June 2018 Chemo Starters

OMG Kip! What a nightmare. So painful for you. So good to hear you’re home now. Thank goodness! Hope you have a restful night and neuts continue to rise and your mouth improves, Take Care xxx
Member

Re: June 2018 Chemo Starters

Great news that you are back home. Fingers crossed your nuets continue to go in the right direction

Sue x
Member

Re: June 2018 Chemo Starters

Glad you are home Kip. It's a bloody nightmare when they can't find a vein. I had some try 7 attempts in A&E when I first started chemo. I was black and blue. A doctor eventually bought a small portable scanner in , scanned my arm and inserted the need by looking in the screen, straight into a vein.if only that had been done earlier.

Hope you get a decent nights sleep (after you have celebrated son's GCSE results of course.
Member

Re: June 2018 Chemo Starters

OMG Kip, your poor dear girl. . . . thank goodness you escaped.  Virtual hug xx

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Yessssss!  I am home.  What a few days!  Had atrempted blood test today by jr doc, he couldn't fin a vein, so got 2 expert ladies to do it.. nk provlem full vial of blood!  4 hours lAter he comes back tk zay they didnt have enough.. now i  know they did but what happened to it i dont know so jr doc and his colleague mrs jr doc havd anothwr go, this time going directly jnto my artery inside of wrist!!!  Omg never felt pain like it, both had a couple of goes each whikst i cried and winced ... No joy they couldn't get any blood.  So then they got me standing up holding onto the sink whilst they laid on floor attempting to get a vein near my ankle bone!!  After 2 attempts finally got some.  Neuts have gone up to 0.6 so still not great but no evidence of infections so allowed home.  Have ulcers ii.mouth now but told to use salt water difflam and painkillers.  Cant wait for my own bed.  Thanks for all your support and kind words.  Just hope mouth gets back to normal before next T.  Hipe uou are all keeping well xx

Member

Re: June 2018 Chemo Starters

Well that was a marathon day. At hospital for chemo at 9 (as uneventful as usual) followed by anticoagulant clinic at 2.50 then an hour wait in hospital pharmacy for injections. Finally home at 5.3pm.
ktk
Member

Re: June 2018 Chemo Starters

Hi Kip. Sounds like you are feeling brighter! Fingers crossed 🤞 for good blood results.

My hair is also lightly fluffy and I had to do a bit of a leg defuzz the other day. No hobbit toes though!!

I felt so good yesterday and slept quite well but I’m quite flushed now. I’ll up the fluids. Temp 37.3 so I’ll keep an eye on it. Other than that, generally much better than FEC so far! 😁
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi my eyebrows and lashes have definitely thinned this cycle but still some remaining, ill ilve to transplanr the hairy toes hairs elsewhere!  Just had bloods taken..  well attempted veins all done in now so waiting to see if the one drop they got was enough..  goodness knows if ill have any left for next chemo...

LJ
Member

Re: June 2018 Chemo Starters

Sorry you're entombed Kip - hope those numbers shoot up quickly and you're back home kicking booty soon xxx

 

Have a little low level back ache this morning, but as I said to DH nothing worse than having slept awkwardly and I still feel pretty energetic so I'm off for a walk with the dog in a mo - gotta get a cuppa in first!  I finished a crochet blanket yesterday so that will go to our caravan sometime over the next week and I've picked up another that's been languishing in the to be finished like for a while. Really enjoying this cooler bright weather. 

 

Hair deffo much thinner, but I had so much anyway I've still got a good covering. Not stopping me looking for a hat pattern to knit up as the weather chills a little!  No hairy toes here, or other hairy parts if you get what I mean ;-)  Think my eyebrows are thinning, but had deliberately chose glasses with a heavier frame before this started to help disguise!  Also have a friend's daughter lined up to help me draw them back in needs be!

 

Here's to good days ladies, chin, chin!

 

LJ

 

 

Member

Re: June 2018 Chemo Starters

Morning Kip,

Glad your feeling a bit more human today, hope you get to go home. Hairy toes is good. It shows you have good circulation to your feet. That's what I tell myself when I look down at my hobbit toes anyway.

I have T number 4 today and it's still so far so good with no side effects at all. Where my hair had thinned on top of my head, small patch (despite the cold cap) there is hair regrowth. I'll have a really long day today. Chemo starts at 9am till whenever, about 1.3ish then I have to hang around for an appointment with the anticoagulant clinic about the clots in my arm which is at 2.50pm and then I'll probably have to hang around at the hospital pharmacy for about an hour to collect my clexane injections. I'll be lucky to get home by 5pm. Good job we have a Bank Holiday Monday. I'll need another day off (even though I had last week off).

Have a good day all.
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hee hee i know soon be able to audition for Greatest Showman .

Member

Re: June 2018 Chemo Starters

Hello kip

The hairy toes made me laugh out loud!! What an odd thing.

Hope you are fixed up and back home soon

Sue xx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Morning all thanks for your good wishes.  Manages some sleep lst night but get woken every 4 hrs for obs then for so me reason morning starts at 5.45am...  on goes the lights and i get my IV drugs so thata sleep done.

Shi your posts always make me smile..  ill 💃💃💃💃💃 round my room !!  If you pass my errant neuts whikst on your flight could you ask Captain Costa to send them back p!ease.🛬🛬🛬

Georgee how long did yoj have to stay jn?  I am near the nurses station so noisy here too!!!  I have ear plugs now tho.  Woke up this morning with worse thrush tongue again... Feel like i will never taste again!

CDC ans ktk how are you doing?  My hair is definately fluffy now altho still white..  and a!so .ade a major discovery last night (very boring jn here!!) ..... I now have hairy toes... What???  Why??  Whats happening.. not a good look!!!😕

Member

Re: June 2018 Chemo Starters

Wishing you the speediest of recoveries Kip! Hope you’re out of there soon and can go and celebrate with your son,  Huge congratulations to him,  What a star!  

Sending hugs and positive wishes xxx

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Kip 😘😘sorry you are sheet testing in casa nhs darling. It does send you 🤪🤪🤪🤪being in but knowing you are in the safest place while neutrophils are over in Florida keeps you 💪💪💪💪girls the famous neutrophils 💃🏻💃🏻💃🏻🕺🕺🕺🕺💃🏻💃🏻💃🏻💃🏻💃🏻That the may17 girls all did for each other when casa nhs residents called for so come on get your gal outta there ladies ❤️❤️❤️ You can do it kip you are a 🤸‍♀️🤸‍♀️🤸‍♀️🤸‍♀️Kick ass kinda gal 💕💕💕✨✨✨Shi xx
Member

Re: June 2018 Chemo Starters

Hi Kip and everyone... 

i just popped on here as I find it helpful to see how people are doing further on in their journeys.  I have been following yours Kip, as I am on FEC T plus  Herceptin, but no hormones involved.  Had 2nd FEC today.

My advice from being in hospital for any of you is:  get some good earplugs, they are a life saver!  Or in their absence, put your own relaxing music on your phone or tablet, and put your ear phones in to shut out the noise.  I was put next to the nursing station in isolation, so it was incredibly noisy all day and night.  

I pray that your neutrophils score shoots up very soon, and that you will escape colditz! 

No one knows until being in hospital how scarey and lonely it can feel, and it can seem like a prison.  Bless you. 

Big hugs 🤗

Georgie Gee ❌

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Just been told still at 0.1 grrrrr

Highlighted
ktk
Member

Re: June 2018 Chemo Starters

Oh Kip, what a tough ride. Well done to your fab son. Look how well he has done, obviously taking strength from his brilliant mum! The end of your road on this hideous journey is in sight and he is in a great place to start his journin spite of it. It is incredible what gives us strength. Get well soon and get home to him!! Lots of love Kxxx
Member

Re: June 2018 Chemo Starters

Oh Kip, sorry to hear you’ve been admitted. Sending all best wishes to you for a speedy recovery.
Jacq x
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Well hi ladies, sorry ive been quiet but currently languishing in Casa NHS!  Temperature was 38.2 yesterday rang hotline and got sent to A&E for few hours.  Now isolated in a room until they come back up.  Habing iv antibiotics but they are still 0.1.  im so fed up, mh son got his gcse results todsy and i couldnt be there.. so shed some tears.  He passed them all tho so immensely proud.  Bloody bc takes all mh precious moments.  Im hoping to see onc tomorrow to see if j can have injections to boost cells.

Im glad to hear you are all doing well, look after your mouths girls mine still hurts.  My room is underneath a dementia ward so the screaming and shoutjng from one oftheir patients continues through out thd night, its so sad to hear a grown man screaming for his mother.

Take care ladies

From colditz

LJ
Member

Re: June 2018 Chemo Starters

I had a good night - went to bed at 11pm and woke about 7.30am, with a couple of wee breaks through the night - one of the drawbacks of copious amounts of water!

 

Steroids takens, just making breakfast now - porridge and plum compote. I've already unloaded and reloaded the dishwasher and tidied round the kitchen and walked the dog.  Making the most of the cooler weather and feeling not too bad, which I'm sure won't last.

 

I think with the injections, it's luck of the draw with the approach the Oncology unit takes. So this time I've got three days of steroids, last one today, no Ondanstreton only Metoclopramide if I need them and the blasted injections. They've given me muscle ache over the last cycles and the Oncologist warned me that the T aches hit about the time you start taking the injections so I'm expecting a double whammy!

 

Hope your days are good ladies and side effects minimal. 

 

LJ

 

 

ktk
Member

Re: June 2018 Chemo Starters

Yes that sounds right Sally. Not even made 2am!! Kxx
Member

Re: June 2018 Chemo Starters

It's not injections Cdc, it's infusions and it only for post menopausal women as far as I can make out. Onew every 6 months for 3 years is nothing so no hassle at all really.
Member

Re: June 2018 Chemo Starters

Will definitely check out moving my chemo day so I can do the cooking course.

Sorry to hear you’re needing more injections ktk, LJ and Sally. How do they decide you need them or will we all get them on T? Hope you all manage to get a good nights sleep.

Hugs to everyone xxx