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February 2019 chemo starters

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Re: February starters 2019 - yes, we rule!

DiKat you are always so good to us popping from our "future" to help and reassure

 

Thank you so much for that.  I know we talk a LOT in here so we can't be easy to keep up with Smiley Happy

 

Since being stuck in here with nothing much better to do I've done a lot of googling, and it seems that your experience of "running slightly hotter" under T is not unusual.

 

I think in future cycles I will give my temp a little bit more encouragement to come down before panicking  and going to A and E.  Unless it is a really high spike of course.  Because in the end I came here with a temp only about half a degree higher than my usual, as I usually run around 37.2 or 37.3 anyway.....  and as it turns out my neutrophils were fine.

 

Ah well you live and learn.  I obviously wouldn't ignore it if I felt properly unwell or if I couldn't get it to cool down after a couple of hours....

 

Rosina, as ever, you are an inspiration but please don't overdo it!

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Re: February starters 2019 - yes, we rule!

Thanks for this Dikat, 

I think I enjoy being blithely ignorant.

Sorry to hear that Seasidesar, Nettinoo, Sonia28 are all feeling crap. 

Sarah, hope you are let out soon.

Edinbird, I have been for a walk.

 I saw a swing and swung on it too 🤗AF1289C2-8658-4A8F-BA78-68A90D3EAFDA.jpegSimple pleasures

The deer were keeping an eye.

Marlyn you do make me laugh 😆 

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Re: February starters 2019 - yes, we rule!

So sorry to hear that so many of you are having a rough time at the minute with hospital admissions, aches & pains, thrush etc.

I don’t know if there is a reason for it but my temperature was higher whilst on T. I’m normally a 36.5 to 36.9 kinda girl but it seemed to be around 37.4 to 37.6 most of the time. Having my wig on also made me warmer so bare that in mind if wearing any kind of head attire ladies. 37.8 was the point I took myself to a&e as that was the point I’d got neutropenic sepsis with Fec. Keep being vigilant ladies!

Just keep a close eye on that thrush Sonia28. It can travel further down your gullet. Nystatin wasn’t effective in my case...the oncology nurse said it’s such a small amount and low dose it’s often not effective and best to get Fluconazole prescribed. That tends to get on top of it pretty quickly.

Look after yourselves ladies and hope you’re all on the up soon. I’m now 20 days post last T and my neutrophils were only 1.25 yesterday so our immune systems really do take a battering often without us being aware. Hugs to all 🤗xx

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Re: February starters 2019 - yes, we rule!

Oh Nettie I hope you don't end up back in the hospital!! Please keep us updated!

 

 

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Re: February starters 2019 - yes, we rule!

Sonia, glad you’ve seen a dr and got something for that mouth. Hopefully when the meds kick in your sense of taste will improve. 

Implausible, do you need a “free the Swindon one” protest organising outside the hospital? I’m sure we can arrange something between us😘

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Re: February starters 2019 - yes, we rule!

I'm so sorry so many of you are feeling so yuk.......nettienoo...please god your good to go home and curl up on the sofa....fingers crossed for all my beautiful sisters who are feeling grotty.....xxxx

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Re: February starters 2019 - yes, we rule!

Hi lovelies, I’ve kept quiet on the personal info front the last few days as I’ve been a bit under the weather since Saturday but had managed to stay out of hospital. I’ve got really painful glands on one side of neck and feel a bit grotty but  they don’t appear swollen. . My temp has been ok so I have just been resting and hoping things improve,

determined I wasn’t going to end up in hospital Now chemo 3 +13 days and the pain in my neck was worse last night so had to take ibuprofen and paracetamol alternatively every 2 hours.

i finally succumbed to ringing for advice this morning so now sat in Oncology triage. The blood test better show all is well so I can go home with antibiotics or better pain relief. 

I AM NOT BARRYING BEING ADMITTED! Xxx

 

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Re: February starters 2019 - yes, we rule!

Sar, hope you feel better soon, I’ve been feeling pretty rotten, my temp had been constant 37.5 which is running a bit higher for me but nothing major. I’ve been to dr this morning, got nystatin for the oral thrush and hydrocortisone cream for my rash. I felt like a bit of a zombie walking around, managed the pet shop after then back to the sofa to veg out now. 

Trying to work out what I can drink that tastes vaguely okay. 

Hope you get out soon Sarah, it is madness when they keep you in, but they are aring on the side of caution.   

Member

Re: February starters 2019 - yes, we rule!

Sar hope you feel better and on the right side of 37.5 I always panic when I hit 37 as I often take a while to get it over 36!

 

Legs still not right. Had to run down the stairs to get the door (fortunately I was 10 secs away from getting undressed!) and I feel rather weird now! Must just be general weakness though as I’m not sore.

 

I will try a walk later and see how that goes but right now I’m getting stuck into reviewing a document that I’m quite enjoying so this will be fine to keep me occupied today.

 

Re sickness meds I was given one tablet before the T started and then Metroclopramide which I’ve had all the time. I wasn’t given my other sickness meds which were Granisetron they said I didn’t need those anymore. Tbh I’ve never really known which I’ve needed as I’ve had no nausea to speak of

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Re: February starters 2019 - yes, we rule!


@MBJ wrote:

Hi Implausible

If you are still bleeping to be free from the drip and just need to walk somewhere just take the electric lead out of the back then plug it back in when you get back to bed. X


Oh I have been, I've been taking it for walks like a puppy Smiley Very Happy

 

The actual drip  finished 2 hours ago.  So it doesnt need to be plugged in....  just need someone to come and unhook it and give it a flush

 

Seaside, so sorry to hear you are under the weather Smiley Sad  keep us updated!

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Re: February starters 2019 - yes, we rule!

Hi everyone,

 

I'm still feeling barry awful so I'll keep this short.

 

Good luck today, Daisy. I got given Ondansetron just before my T infusion and I haven't suffered from nausea. At least that's one positive of T.

 

Sarah, what a pain that they're so keen to hold onto you now. I can imagine you're going stir crazy. Hopefully they'll let you go home soon.

 

My temp was borderline all day yesterday, staying at 37.5 which is high for me as I'm usually a cold fish. I just kept taking paracetamol and opening windows so in the end it dropped to my usual level. Hubby was all ready to wheel me to the hospital but I wasn't tempted.

 

Staying in bed today and hoping I get over the aches and pains that I still have.

 

Take care all.

 

Sar xxx

MBJ
Member

Re: February starters 2019 - yes, we rule!

Hi Implausible

If you are still bleeping to be free from the drip and just need to walk somewhere just take the electric lead out of the back then plug it back in when you get back to bed. X

Member

Re: February starters 2019 - yes, we rule!

Hi Daisydi 

I didn’t have any anti- sickness meds for T. Just the high steroid dose ( a day before, during and 1 day after).

They did offer me anti- sickness meds to take home with me ( after being dosed) but I didn’t take them as already had plenty at home.

I didn’t experience any nausea with T which was fantastic and my appetite has been good.

Hope this helps,

Rosina

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Re: February starters 2019 - yes, we rule!


@daisydi wrote:

Just a quick question did any of you T girls take any anti sickness meds before infusion?

 


Hi Daisy.  I got given Emend as usual like on FEC.  So one an hour before chemo (they give me the tablet as I arrive), and then 2 for the next day with breakfast and lunch, if I remember rightly

 

T is supposed to be a lot better than FEC nausea wise though 

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Re: February starters 2019 - yes, we rule!

MBJ I know in my heart of hearts it was the right thing to do to come in.  Grudgingly I have to admit that Smiley Very Happy

 

It's the getting out again bit I am struggling withSmiley Happy

 

They finally got bloods on day 1 and confirmed I was not neutropenic.  (They never gave me a number but told me it was high 1 point something)

 

They took bloods again yesterday and my neutrophils were up to 2.7 so even better

 

I haven't had a high temp now since Sunday apart from that freak reading because of the woolly hat being over my ear in a hot room

 

I have felt in absolutely perfect health since yesterday morning, until the "loose stool" incident this morning which I know is 100 percent down to the AntiBs as they get me every time

 

It just seems crazy that I am taking up a NHS bed now, while they still have people out in the corridors on trolleys..... when I am absolutely fine!

 

I could have gone yesterday if it wasn't for the "CRP" reading in my bloods being elevated.  I read up on that.  It is an infection marker to do with the liver.  But note, he said this was normal on my day 1 blood tests, and only went up on day 2 when my temp was back down and I felt fine.... and the nurse said it is also sometimes elevated by anti biotics Smiley Happy 

 

So I am pretty sure that the only symptoms that are keeping me here are side effects of the medicine they are giving me.

 

Sigh.

 

I am beginning to sound like a broken record now, sorry ladies!

 

Hopefully a doc will come soon so I can have the convo with him.

 

Not much hope of that given I have been beeping for 2 hours just to get unhooked from the drip! 

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Re: February starters 2019 - yes, we rule!

Just a quick question did any of you T girls take any anti sickness meds before infusion?

 

MBJ
Member

Re: February starters 2019 - yes, we rule!

Implausable

I really think it was the right thing to do to go to hospital. You could not afford to ignore warning signs of possible neutopenic sepsis as the consequences of doing that would be very serious. I can see like me you have not had a good hospital experience and I really hope you are well enough soon to go home. You are certainly no drama Queen I think you have been very calm about it all and also very accepting of the pretty rubbish care you have received your care. Hope the bowels improve, the same happened to me and I was too ill to walk to the bathroom so had to be wheeled there on a comode at 3am so dignified. Take care x

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Re: February starters 2019 - yes, we rule!

Thanks Nettie.  

It isn't watery.

But they still seem to think it is worth resetting my 24 hour clock.

 

They are so keen here!  I just want to see some common sense.
Like yesterday afternoon they were about to let me out, I just had to pass the temp test. I had a little hat on because of my bald head and it was over my right ear and the waiting room was boiling.
My left ear was fine but the right ear was over the limit temp wise.

The nurse took her own temp and even she was over as the room was so hot.
I took the hat off and asked them to try again in 10 mins which they did and it was fine.
But by then a junior doc had already said no and reset my clock!

 

 

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Re: February starters 2019 - yes, we rule!

Implausible, they only seem concerned if it’s a watery poo if it’s just a very soft one there is no need for concern. X

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Re: February starters 2019 - yes, we rule!

Morning daisydi

Thinking of of you. Starting on T is like going back to the beginning and the fear of the unknown rears its ugly head again😦. All this toilet talk/humour is making me laugh🤣. Is that bad?

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Re: February starters 2019 - yes, we rule!

Oh dear we are having a poop day already! My poop is still tearing me in half but at least I can report that’s my main concern! My lower legs feel slightly achy so I don’t know if it’s just residual or they really objected to my short walk yesterday or I just need to get out of bed and move about?

 

Funnily enough when I was in hospital I’d spent the last 6 days unable to stop going fairly unpleasantly and as soon as I was there on the IV I didn’t go once! So I wonder if my bowel and bladder symptoms were a very minor infection or my body just struggled to sort them out. I swear it was more likely thrush though as that came on after (but again, you give me antibiotics and that happens so chicken or egg?)

 

Certainly the T terrors only seem to last a few days and we are out the other end (sorry no more poop references). I will try and walk a bit again today and see if my legs can do more than drag. I don’t feel like I have any injection related aches which is good. Still three of the damn things to take they are never ending!

 

Best get up and see if my taste has improved again, it seems to have ground to a halt.

 

Good luck Daisy we haven’t been selling T to you but it’s doable xx

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Re: February starters 2019 - yes, we rule!

You're ok Implausible, I've had my morning coffee☕. Just don't follow up with descriptive photos💩💩💩 

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Re: February starters 2019 - yes, we rule!

Marlyn I will spare you all that Smiley Very Happy

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Re: February starters 2019 - yes, we rule!

Morning all I feel good today so maybe steroids do work.  Sarah I had a little accident too when I was taking loads of meds.  Thought I had wind but followed through so to speak.  Couldnt control it. My friend and her daughter were here at the time and I was mortified.   And as for sneezing with a weak bladder ...... Glad you are feeling better.  I am telling myself that I will be fine, I will be fine.  Just want to get this first T out of the way.  Glad you feel better too Rosina.  Nice to know it only lasts a few days.  Speak later when I am all T'd up xxx

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Re: February starters 2019 - yes, we rule!

I pulled out a card just now ( thinking of Sarah). This is what came up:D1B1B8F7-4E2E-44C9-9414-1F325231D3D6.jpegI feel better just looking at her !

 

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Re: February starters 2019 - yes, we rule!

Implausible, your certainly not being a drama queen Hun.....now...if you had posted a pic of your cardboard offerings........that would have been quite spectacular drama queen behaviour....xxxx

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Re: February starters 2019 - yes, we rule!

Don’t worry Sarah,

I am having my coffee 🤪

Remember 4 down. 

Is it 2 to go left for you too?

 

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Re: February starters 2019 - yes, we rule!

But I know what I am like on anti Bs.  It won't stop until I stop the drugs.  They won't stop the drugs while I am here.  They just started me on yet another drip.  Catch 22.

 

I have just eaten my breakfast, gone again, and collected it in a cardboard bowl for them so they can see it really isn't that bad at all.  The lengths I go to!!!! Smiley Very Happy

 

I am SO sorry if any of you are reading this while eating your brekkie!!!!!

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Re: February starters 2019 - yes, we rule!

Implausible, same happened to me love, I feel your pain! I was set to go home from first hospital admittance. It only happened once, due I am sure to all the drugs they’d given me but I was kept in for another 24hrs. Maybe if nothing else happens this morning they will let you go but I have a feeling the rules on this are quite strict. Xx

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Re: February starters 2019 - yes, we rule!

You're not being a drama queen Implausible, you just want to go home and at the moment they won't let you.   

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Re: February starters 2019 - yes, we rule!

Thanks for the update on T side effects. Good to know they just last a few days. Until now I've been able to feel the effects of chemo doing it's job by shrinking Gremlim. I won't have that point of reference after surgery. Take care xx xx Susie  

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Re: February starters 2019 - yes, we rule!

On the plus side, I am now one week post my first T and like you, Rosina, the aches and pains seem to have gone away.  They were ok yesterday too.  So yes it was days 4 and 5 that were bad for that.  Or 3 and 4.  Depending on where you start countingSmiley Happy

 

In other words I had T tuesday and the pains kicked in Friday evening and throughout to Sunday morning.

 

Sunday I didn't have leg pains so much as really bad back pains but I put that that down to 9 hours sat on the world's most uncomfortable chair in the hospital waiting room more than T Smiley Happy

 

I honestly think if I had just stayed at home Sunday and waited another hour for my temp to go down , i could have avoided this whole hospital fiasco and would be absolutely fine by now.  Given that my only symptom is the one caused by the antibiotics....

 

But I guess you have to err on the safe side.....

 

It reminds me of all those stories where people get locked up in mental institutions by mistake but end up there for their whole lives because the docs keep finding some tiny reason to keep them there.  But maybe that's just me being a drama queen Smiley Very Happy

 

 

 

 

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Re: February starters 2019 - yes, we rule!

No, I know they don’t 76451935-274C-4EEB-8B7E-9571748D601C.png

 

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Re: February starters 2019 - yes, we rule!

Oh Implausible that really is the Barrying pits. Having the runs is a common side effect of antibiotics. You'd have thought if your temp is normal that would indicate that you are no longer fighting an infection. I'd want to get home too. Sending you hugs❤❤❤❤❤❤.xxx 

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Re: February starters 2019 - yes, we rule!

Oh I'm fine for entertainment.  I listened to a podcast last night and have my iPad and a good book.  Don't worry.

 

I am just a bit fed up as have essentially felt completely fine healthwise since yesterday morning, my temp is fine, my neutrophils are fine, but they just don't seem to like letting you go once they have hold of you....  

 

 

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Re: February starters 2019 - yes, we rule!

Feeling for you Sarah,

 I do hope they let you go.

Hugs,

Rosina

PS can you listen to podcasts to take your mind off things? 

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Re: February starters 2019 - yes, we rule!

Sigh

 

I'm beginning to think I am never getting out of this place.

 

Woke up, felt fine, they did my obs, temp still down, all good.

 

Then I got caught short on the way to the loo and had a (minor, but enough to need me to change my jama bottoms!  Sorry, TMI) accident, because antibiotics ALWAYS give me the runs and I told them that from the get go.

 

And apparently that sets me back to the start of my "24 hours symptom free" clock .  Sigh.

Going to try to talk sense to the doc as this isnt a symptom of infection.... it's a symptom of the medicine they have been dripping into me non stop!

 

I just want to be at home where I have easy access to my en suite loo, my shower and changes of clothing!

 

 

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Re: February starters 2019 - yes, we rule!

ADDF819B-B19A-480D-9921-672024F43637.pngPretty apt for today

 

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Re: February starters 2019 - yes, we rule!

Morning Susie B

I have woken up and all the aches have gone away. Yeah ! This is Day 5 after receiving my T dose. Day 4 was my worst but maybe I overdid things ( What with the yoga day on Day 3 ?) .

Its as if I had to wear full body armour to walk around for 24 hours and today the armour has come off.

A friend ( ex nurse) said think of all the ‘bad stuff ‘ the drug was killing. I also kept hydrated.

Meditation now,

hugs ,

Rosina

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Re: February starters 2019 - yes, we rule!

I don't like the sound of T at all😝. After surgery I'll have 4 rounds of the stuff together with C. Please tell me it gets better after each round. I live in hope. Good night all🌕🌖🌗🌗🛌🏾🛌🏾xx 

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Re: February starters 2019 - yes, we rule!

Deano, my daughter has blurred vision, sometimes makes it hard just to watch telly.

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Re: February starters 2019 - yes, we rule!

Sarah, let us know asap what did they see in the bloods.

Rest a bit, a nap sounds good.

So sorry for all this mess honey Smiley Sad

 

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Re: February starters 2019 - yes, we rule!

Sonia28, you poor thing. It does sound like oral thrush. As you have an itchy rash on your neck as well, do you think it would be a good idea to ring your helpline number and see what they say? Xxx

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Re: February starters 2019 - yes, we rule!

Hi all

Super quick update as I am so so tired and am going to have a nap

In short, still here, temp was ok, neutrophils back up to 2.7, but something else in the bloods (CRP) worried them so they want to keep me till tomorrow

 

At least I have a proper bed this time

Catch you tomorrow

 

 

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Re: February starters 2019 - yes, we rule!

Talk about brain fuzz, I send families all the time to nhs choices didn’t even think to look there today, I’m now sporting a lovely rash around my neck that’s driving me crazy itching. I’m with you Deano, not liking T now ,but hey only 2 more to go 🎉🎉🎉

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Re: February starters 2019 - yes, we rule!

When I had a sore throat first FEC the dr said I’d have had spots on my throat with thrush as well as a white tongue. I’d been using the bicarb a lot so mine didn’t look too bad. Must remember to use some of my heavy duty mouthwash later to try and give my tastebuds a boost!

 

Aches have gone away at the moment. Don’t feel too tired either. Watching Game of Thrones with husband (well he’s watching I’m not so fussed). Made a tomato bean and leek casserole with eggs and totally over cooked it as I didn’t want to risk runny eggs and the toast took forever. Tasted odd at the start odd at the end and ok in between!

 

Apple crumble courtesy of the neighbours shortly. Should feel better but just a bit fed up really. Just hope I sleep later

MBJ
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Re: February starters 2019 - yes, we rule!

Hi Sonia 28

If you have oral thrush they will probably prescribe Nystan liquid. It's very effective and does help the whole gut as it goes through. X

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Re: February starters 2019 - yes, we rule!

Thanks for the encouragement daisydi. I've just got to remember that, like with chemo, my body needed the extra help to shrink Gremlim and it will now need  help from a surgeon to get rid of Gremlim and his relatives in my lymph nodes. xxxx  

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Re: February starters 2019 - yes, we rule!

Hi sonia28 

Just looked on the NHS choices website and it certainly seems as though you've got oral thrush☹. They've got some lovely photos if you want to check it out.  Hope you can get it sorted soon. This chemo just keeps on giving. xxx 

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Re: February starters 2019 - yes, we rule!

Hi Rosina

I am in the fed up club too lots of aches and pains but I agree not enough to take pain killers - my tongue and throat is sore no tastebuds either. I managed a walk this morning and nothing eases the aches but determined not to take owt until I need to. Anyone got blurry vision it comes and goes I am hopeful for a better day tomorrow with the lovely T - used to like T not anymore 

Another day over ladies gets to tomorrow ❤️❤️