December 2017 Chemo Starters

[KirstyH]

That's good Camilla 🙂 I didn't have any pain last time really, but this time my muscles in my shoulders/top back and top of arms have went all stiff and that happened last night, after chemo Thursday. Its not too bad thp so hoping it doesnt get

fingers crossed you gey off lightly with the docetaxol xx

[Camilla9]

Hi Kirsty, I'm lucky, the community nurses come daily to do my injections. Also gives me someone to consult if necessary.

I had the docetaxol 3 days ago and so far nothing much has happened. When did your bone and muscle pains kick in or were you ok?

It's hard to plan one's life when waiting for horr things to happen!

Gd ur husband able to do your inj.

[KirstyH]

Hey unicorngirlmummy, oh I couldn't do it myself lol the needle seemed so much longer than i expected it to be 🙈 so my hubby did it for me, actually hardly felt it in the end so was ok. Will just get him to do them each night xx

[Unicorngirlmummy]

Morning,

I hope everyone’s nausea is starting to settle.

Kirsty, how did you get in with your injection?

The gloopy stuff for oral thrush is horrible, doesn’t help when you’re nauseous either does it 😕

Have a good weekend xx

[Shi]

Hi runawaygirl, sorry to hear you’ve got oral thrush, I had that every round of chemo, my onc put me on fluconzole tablets and I also had the difflam mouth wash, so don’t struggle, if the drops don’t help ask for fluconzole. 💕💕✨✨shi xx

[runawaygirl248]

Unicorngirlmummy - yeah I thought that maybe they start us on the cheapest meds which makes sense but I guess sometimes they have to listen to the patients 😊

Saw GP this eve and he thinks it is oral thrush so have some nasty tasting antifugal drops to try and some Difflam spray. Spoke to him about anti sickness meds too but he said I'd have to get the hospital to swap to some others. Hes suggested Gavison and Ranitidine for heartburn as probably contributing to all the nausea.

I feel like I am starting to rattle now with all the medicines!!

Body deffo in need of some clean eating after all the chemo 😊

[Jencat]

You're welcome Unicorngirlmummy, I don't know if the bands do work or I've just been lucky, but anything's worth a try to stop the sickness xx

[Cathsin]

I have been managing the nausea not to badly with the meds but when hubby starts talking about food and what I am wanting for tea it's time to pop the pills . X

[Cathsin]

Glad you managed to get the jabs though Kirsty hopefully should help x

[KirstyH]

Sorry you are all suffering so bady with the nausea, I havent had any so no tips I am afraid. But almost there, we are all getting so close!  

For me, I just seem to have bit been hit with these unexplained high temperatures with so sign of infection, resulting in the hospital stays in these past 3 weeks, so hoping it doesnt happen again!

Thats brillians rads is so soon Fiona, another step closer to the end!

Mamdeacs how are you?

Im dreading starting my first self injection tonight lol but know its for my own good, so will get on with it

Hope you all have a good weekend x

[Karebear]

Day 3 after chemo 4 and the nausa and heartburn are worse this time. I suffered from alwful morning sickness when pregnant.
But hopeful after day 7 the sickness will pass.
Only 2 more to go can't wait

[Unicorngirlmummy]

My oncologist doubled my omeprazole which really has helped with the burning at the back of the throat. I do sympathise, it was really painful & adds to the misery.

They start us off on the cheaper anti sickness meds, hopefully when you next see your oncologists you’ll get the good stuff! When I had my first cycle in 2016, I was sent to A&E as the vomiting & nausea was so bad. The oncologist specialist nurse told me that younger women seem to suffer the most with nausea, or women who suffered with morning sickness during pregnancy.

Gosh Fiona, that’s not long in between chemo before you start radiotherapy. Compared to chemo though, it really is a breeze. It’s tiring going every day but it doesn’t cause nausea or any of the other nasty chemo side effects. They give a sheet with all your dates on which is so lovely to tick off each day 😊

Hope everyone’s side effects swiftly go away as they’re not wanted!! Xx

[SamH87]

Are you on anti acids?? That burning feeling is what I was getting before I was taking ones that were prescribed! Fingers crossed the doctors apt goes ok later and this weekend is a turning point for you!! Xxx

[runawaygirl248]

Hi SamH87 - the nausea last night and today as bad as infusion day but think a lot is to do with throat and mouth. Popped to Pharmacist this morning to see if oral thrush, he said it could be but could prescribe anything as prescription only. Rung docs and managed to get appt for this evening. I have white patches on back of throat, under tongue and even on the "clacker" bit that hangs at the back of your throat lol.  Throat, Oesphagus and tum feels like its burning so will get it all checked out. I'll just be told "its the chemo effect!". Will ask about other nausea tablets as well.

Usually by about day 10-12 my nausea eases up so hopefully the same happens this cycle but so far its been the worst cycle for nausea 😕

Good to hear you are feeling better wirh the nausea today though! 😊  xx

Hope everyone has a good weekend and manages ro do some lovely things x

[Fiona17]

They just scanned the top half of me.

I’m so looking forward to being able to taste again, I’ve been lucky and not been too nauseous but food and drinks have tasted foul since Christmas. I’m becoming completely fixated on being able to taste food again.

I’ve promised myself a trip to Borough market for loads of cheese and as many pickles as I can carry I’m then going to gorge myself until I can’t move😂😂😂 or I self combust what a way to go! 

[SamH87]

Ah glad it all went ok Fiona! Did they do a full body CT or is it just a specific area??
Fingers crossed for a good weekend for everyone!
I feel like I MIGHT have turned a corner today... I drank a glass of orange and it actually tasted how it’s supposed to!! I’m whispering this of course.., just in case! 😂
Xx

[Fiona17]

Afternoon ladies,

Sorry you’re all feeling a bit queasy, with a bit of luck I hope it calms down for the weekend, it seems never ending though when you’re going through it.

Any news on Mamadeacs after her full and thorough batch of tests, last I read she was waiting for results.

I had my ct and planning early this am. All relatively painless, so last chemo next Wed then 2weeks off and onto 4 weeks of radiotherapy. I had hoped for a bit longer between as chemo every week since December has finally worn my energy reserves to almost zilch, 

Hope everyone has a decent weekend and steers clear of casa NHS.

F x

[Cathsin]

Sam I am with you in the day 10 flick of the switch it's bizarre although I then say I am on a good week .. it's not good at all it's just a bit better isn't it x

[SamH87]

How are you feeling today runawaygirl?? Xx

[SamH87]

Thanks Moijan and Jencat - unfortunately I have tried the bands and tried the nibbles and I’m still no better 😫

I would say that it seems worse towards the evening for me and by day 10 it’s like someone has flicked a switch and I’m feeling a lot better again?? It’s so bizarre??

Xx

[Unicorngirlmummy]

That’s a really good tip jencat, thank you xx

[Jencat]

Hello everyone, I'm from the Oct thread. So sorry that so many of you seem to be suffering with sickness. I don't know if this tip will help or whether you've already tried it, but when I had my chemo (I've got my last one tomorrow!) I've worn seasickness bands. I don't know whether it was psychological, but apart from feeling a bit nauseous a few times, I haven't been sick. I kept the bands on for several days after chemo until they were too uncomfy on my wrists! xx

[Moijan]

Sam, and Runawaygirl,

I too am nauseous, but when nibbling it seems to go.I once many months ago had ondontreston(wrong spelling) any way it was good and worked. I think the gum one you mentioned may have been buccastem..stemetil.....I was on a very large dose of that when I got my dvt....but I often use buccastem...it’s only a low dose.  Haven’t used it for this chemo tho.....I’m worried that driving might be affected.

have you tried a little ice cream when you feel sick? I find the extreme cold helpsxxx

best of luck with it...I seriously hope it improvesxxx

[SamH87]

That’s what I keep telling myself Kirsty 💪🏼
Huge well done for today though.. 3 weeks time and last one checked off.. that’s amazing!! Feels like a tiny bit of light at the end of the tunnel!! Xx

[KirstyH]

The nauseas issues you are having girls sound awful 😞 that is one thing I have not had at all. I hope the change in antisickness meds help! I know it so horrible feeling rubbish and poiprr quality of life but just remember its not forever, a number of more weeks of this crap then chemo will done and hopefully done the job its supposed to do

Round 5 done and home now, so 3 weeks today and will be on my last treatment. Im terrified of ending up in hospital again with temperatures, each time they disnt find any infection either which made it even more frustrating! Ive got tje antibac gel for when the acne rash starts appearing this time so hopefully control it and ive got the injections for 10 nights this time too for the white blood cells. Fingers crossed for a better 3 weeks than last xx

[SamH87]

Funnily enough my oncologist said to me last time around that he wouldn’t want to be on the drugs I’m on 😂😂 ... 🙈🙈

Emend seems to be the only one I havnt been on. I started on metoclopramide, had domperidone, then switched to a couple this time around (can’t remember the names) but one melts on the gum and the other is taken before bed and makes you super drowsy.
I was told the same thing about my digestive tract being my weak spot... I’m also suffering from acid, vile taste in the mouth and I literally cannot stomach the sight of any kind of drink .. so I’m probably doing myself no favours as im struggling to get the liquids in,

I’m Day 9 now and Iv literally pushed my dinner to one side again. 😩😩😩
I keep saying that it’s only 2 more to go and I WILL do it (not without moaning though!!) but in my eyes it’s still 20 more days of nausea and feeling so sick.
I just desperately need the sickness meds to work!!!! Xxx

[runawaygirl248]

The nausea is just the worst SamH87! I have the anti sickness thats supposed to work for 5 days before the infusion but I am on anti sickness tablets again within 4hrs so not sure if they work. I was prescribed Metclopromide for cycles 1 and 2 which did nothing and had cyclizine for cycles 3 and 4 which again dont touch the sides. The nausea is just relentless 24/7. My chemo nurse just said that "your digestive tract is obviously sensitive and a weak area" ....like I dont know that!! That coupled with slimy mouth, white patches and what feels like burning down the throat is just becoming too much. The taste in my mouth is like pond water...Im sure Im not alone in that one!

I just feel theyve never got to grips with managing my nausea and S/Es and its starting to just affect quality of life for me. I said to my husband today that maybe if we chemo patients all strapped our Oncologists down to the chair, stuck a cannula in them and filled their bodies and veins with highly toxic drugs then they might start to take us all seriously when we tell them about the debiltating S/E's!!

[Unicorngirlmummy]

I’ve also found cycle 4 the hardest. My muscles are so very achey, I get out of breath walking up the stairs. I’ve slept & slept The slimy mouth too. Just feeling fed up & grotty! I’m sure the dog is even fed up seeing me on the sofa with a blanket!

Well done Kirsty for cycle 5! 👏

Sam, do you have emend or akynzeo before your chemo? It lasts for 5 days. Doesn’t fully take the nausea away but it’s a huge improvement. The emend made my headaches worse but akynzeo has been good.

Hope everyone’s side effects are kind to them xx

[Cathsin]

Sam they have given me emend this time don't know if they will be any better or not x

[SamH87]

Runawaygirl - please don’t think you are being a wuss. I have literally cried after every single treatment with how rubbish it makes me feel. For me the nausea is playing a huge factor in that and I too have a meeting next week regarding a plan of action for the next 2 rounds of treatment. For me it should be another change up of the anti sickness meds and hopefully something a bit stronger that I can start before treatment. Rather than reduce the dose can they juggle your meds a bit to try and alleviate the side effects for you?
With 2 to go you have done amazing so far xxx

[Cathsin]

Sorry runaway girl I mis read you have had the doxetaxal x

[Cathsin]

Runaway girl my oncologist told me she was reducing my doxetaxal this time but when it came to it I was given the same dosage i will be mentioning it when I see her on 6 mar if I ha e as bad a do as the last one . Apparently they have a 25%tollerance in it anyway x

[runawaygirl248]

Cathsin and Camilla - Im with you on the mouth slime and I havent had Docetaxel! This cycle it started before steriods finished and is worse than previous.

I know a lot of you ladies are suffering with lots of various S/Es and hospital trips etc. but I have found cycle 4 to be the hardest yet and Im only in 7 days in it. My chemo nurse is going to request a meeting with the medical team before my 5th cycle as Ive said Im either stopping anymore chemo or I would like them to review the high doseage Im being given as my body is just struggling to cope. I feel like a wuss compared with others but body feeling broken by the chemo.  I was told I was being given a high "curative" dose of chemo but its no good to me if my body is suffering.  Sorry to moan 😕

[Cathsin]

Camilla I started with the slime (thickened saliva ) today after my treatment yesterday was hoping for a few days but it kicked in early this time x

[SamH87]

Round 5 Kirsty — well done!! Hope the side effects are kind this time. Can’t believe it’s the penultimate one now!

Camilla/Cathsin - hope it continues to go ok and the SEs are kind to you too!

Mamadeacs- hope you are feeling better? Xx

[Camilla9]

Had my chemo 4 first docetaxel yest and waiting for se's to appear.
Today managed housework, washing, a long walk in the sun now friend arriving while I'm still ok .
Just horr taste in mouth and no food tastes good.
Had gcsf inj this morning..

The wait goes on ..

[Cathsin]

Round 5 Kirsty that's fantastic only 1 more to go after today

As for crying runaway girl it does you good I find

My slime has kicked in already after my treatment yesterday ... drat I was hoping for a few days without it .. looks like it is home made tomato soup for the next few days x

[KirstyH]

Hi karebear, from what I have read they pass thru your body in a few days butvthe effects continue working. Think you are still classed as cytotoxic for up to a week. Im not totally sure tho so someone else might know more.

Thats me hooked up for round 5 as bloods and temp all ok. Praying for no more hospital admissions

Hope everyone else is ok xx

[Karebear]

ladies have any of you ask the question 'How long do the chemo drugs stay in your system'
I forgot to ask when I was seeing the oncologist on Tuesday ???

[Unicorngirlmummy]

Morning ladies,

Runaway girl, yes it really is hard to see the light sometimes & you’re more than entitled to a good cry 😘 As you say, when you feel nauseous, achey, nothing tastes nice, sore throat, it’s hard to get enthusiastic about doing it all again 😐 You’re absolutely right though, we can all do it (through gritted teeth & sparse eyelashes 😩🙈).

Hope everyone is doing ok & good luck to those in the dreaded chair xx

[runawaygirl248]

Unicorngirlmummy - yeah the night sweats are really annoying! My chemo nurse said that they are probably being induced by the EC chemotherapy and to keep a diary as to see if any other patterns are identified i.e. drinking enough, diet and activity levels. Im eating and drinking similar to last 3 cycles and activity might be slightly less so will see lol. I guess I will have ro get used to it anyway - I apparently have 10 years of Tamoxifen tablets to look forward to 😕

Cathsin - good to hear your chemo went fine (another one under the belt!) and I hope you did eventually manage to get some sleep 😊

I had a bit of a cry last night (not usually one for crying) but couldnt help it. Getting so frustrated with nausea, horrible sore mouth and throat and the relentless fatigue each cycle. Hard to see the light at the end of this chemo tunnel at times isnt it?

I keep trying to remind myself - we can ALL do this! 😍

[Cathsin]

Good morning ladies hope you are feeling better today . After my 6 hour chemo session yesterday afternoon/evening I am now wide awake and can't get back to sleep

Loving the mug runaway girl will have to find one of them x

[Unicorngirlmummy]

Runaway girl, I meant to say earlier, chemo also put me through a temporary menopause. The hot flushes through the night are exhausting! My BCN told me we can’t take any supplements to help. I did order a chillow from amazon which helps take the edge off of them, & a mini hand held fan! Just to add to the joys eh! Xx

[Fiona17]

That’s a very generous gin concealer runawaygirl 😂😂🤪

[Moijan]

Fiona XX 

have pm’d youmoijanx

[Unicorngirlmummy]

Love the mug runaway girl 🙂

Hope you have anti sickness meds at home Camilla & that you don’t need them 🤞 xx

[KirstyH]

Great mug runawaygirl, lovely present!

Good luck Camilla hope you stay ok

Xx

[Mamadeacs]

Hope you stay well Camilla...lots of love xx

[Camilla9]

So sorry ur in hosp mamadeacs. I've yet to have that pleasure. Had my first docetaxel today and home now. Currently feeling fine. Strange knowing it all whirling round in the blood but not manifesting itself - yet.
Have not been given my usual anti-sickness meds to bring home so assume that's a good thing...

All a waiting game ...

[runawaygirl248]

Ladies, hope you are all OK this afternoon. Just wanted to share this photo of a gift I received in the post today from a very good friend of mine - it applies to all of us!