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August 2018 Chemo starters

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Re: August 2018 Chemo starters

Hi Cat

That’s good news if you aren’t suffering too much with ses
I’ve seen the oncologist today & gone through all issues / side effects from last cycle. The decision had been made to keep on track with chemo scheduled dates but reduce the dosage by 20-25% as the effects will be cumulative over the next 2 cycles - hopefully it will all go ok
Re radiotherapy- the consultant had said a 4 week gap from chemo, but as I wanted to finish before Christmas she agreed we could do 3 weeks 😀

Hope everyone else are doing ok

Jude x
Member

Re: August 2018 Chemo starters

Hi Jude,
Thanks, so far side effects haven’t been too bad, mainly general aches and pains, headaches and tiredness.
Good luck with the oncologist tomorrow and fingers crossed you stay on track to finish before Xmas 🤞. Are you having a break between chemo and radiotherapy? I’ve been told I will need a 3-4 week gap.

I hope everyone else doing okay too! 🤗

Take care, Cat x
Member

Re: August 2018 Chemo starters

Hi Ladies

Hope you are all doing ok

Georgie - hope the antibiotics are kicking in & you are starting to feel better, good luck with the T next week, hope it all goes ok
Cat - hope you keeping feeling ok & have minimal side effects - good luck with the herceptin

I’m still on antibiotics until tomorrow & I keep monitoring my temperature. Have to say I’ve been so tired, I’ve had to go back to bed twice today but am still managing a little walk everyday.
I’m back to see the oncologist on Tuesday, not sure whether he will tweak my treatment or keep it the same, I’m just hoping it doesn’t get delayed as I really want to keep on track so I can get my radiotherapy completed by 21st December

Sending hugs & love to all

Jude x
Member

Re: August 2018 Chemo starters

Hi Georgie,

Sorry to hear you had a bad reaction to Herceptin and your chemo is delayed – not what you wanted but better that you are well enough before you carry on with chemo. Take care over the weekend.

 

Hi Jude,

There was a change of plan today and I only had my first T (Paclitaxol). I’m having Herceptin next Friday and after I’ve been monitored for several hours I will have T (Paclitaxol) again on same day. They want to see how I react to T first which seems to makes sense. So far so good, no SEs yet but it’s early days!

 

Hi Jo,

I will buy some anti-histamine tablets tomorrow so I am ready just in case! Sounds like other than that you are doing well on T. Good news.

 

Hi Sue,

Thanks for the update, let us know how you get on at the docs.

 

Wishing everyone a safe and relaxing weekend. Take care!

 

Cat x

Member

Re: August 2018 Chemo starters

Thanks Jude, 

 

how are are you doing now?

 

I am going back next Thursday to try again.  Xx

Member

Re: August 2018 Chemo starters

Hi Georgie

What a bummer, obviously the herceptin hasn’t agreed with you
It’s a shame that you couldn’t have your chemo but far better to be fit before you start it
Did they say when you can have it?

Hope you feel ok over the weekend

Take care

Jude x
Member

Re: August 2018 Chemo starters

Good evening lovely Ladies,

 

Had my first herceptin yesterday.

 

The nurse kept telling me there are no side effects, but they were keeping me for 6 hours 'in case.... '

 

When I got home I felt really sick, had a sandwich, which I forced down, and went to bed. Was very nauseous and had a temp as well, plus diarrhoea so stayed there until this morning.

 

A friend came to me to pick me up for T chemo round 1, and said that I seemed really breathless again.

 

Got to hospital, but they were not happy with how I seemed. Onc decided I might have a chest infection..... so no chemo for me today. Ended up with 2 litres of fluid, and oral antibiotics to go home with. Was given the choice to stay in, which I declined politely! Had to promise to go to A and E if I wasn't feeling any better over the weekend.

 

Love to all

 

Georgie xx

 

Member

Re: August 2018 Chemo starters

Hi Ladies

Thanks for your support - it really helps

Georgie - hope you didn’t have a bad reaction to the herceptin & hope your T goes ok tomorrow. I’m sure they will check your line out again before treatment.
Sorry to hear about your accident, sounds like the insurance people have come up trumps!

Sue - talk through the add-aspirin trial with your oncologist, it might be ok for you - I do find that the chemo gives me heartburn so I don’t want to make things worse when I start the bisphosphonates.
Replens does sound a bit pricey - talk to your doctor who may be able to prescribe something?
My breast care nurse signed me an exemption form (which I need to send off) for free prescriptions - it covers anyone who has or has had cancer - so you should all be exempt from paying regardless of circumstances

Cat - slept better at home than in hospital! Hope your H & T went ok & you didn’t have any bad reaction

Jo - Ive not had any red face issues but I had taken some hay fever tablets for a couple of days before T as I’d been sneezing. I’ve got intermittent tingling in mainly my fingers but I’ve got shellac on my nails so not sure what they are like underneath!

Take care all

Jude x
Member

Re: August 2018 Chemo starters

Hi,

Good luck to all of you starting your new treatments this week and I hope those of you still on the initial treatments are doing ok.

 

Ive just spoken to the chemo unit about my red face- I keep getting red cheeks which flare up for unknown reason and feel really hot, bit like sunburn. My face is also very dry. 

 

Ive had it for a couple of days and at first I thought it might be sun burn from my walk the other day but the redness wasn’t calming down. 

Apparently it is a common SE of the T regime- just been told to take antihistamine tablets to try and reduce the 

redness. They said it is just a mild reaction and only concerned if breathing difficulties or temp.

 

So maybe make sure you have some anti histamine in your ever expanding pill cupboards! But obviously if you do get a red face then check first with the chemo unit just in case it is something else!

 

Apart from that I’m actually feeling ok - I’m in Day 11. A little bit of sorenesss around nails......eek and occasional pins and needles in feet.... but I ll wait till I see onc next weeek to discuss these issues.

 

jo xxx

 

Member

Re: August 2018 Chemo starters

Hello Cat

I was given Sylk on prescription however this didn't come with an applicator so I struggled to get it where I needed it to be. Not sure if Replens is available on prescription though but worth while asking. Another alternative that im aware of is an estrogen gel that you apply - however they may not let you have this depending on the type of cancer they found. I'm TN and was told not during chemo but we can discuss it afterwards.

Good luck

Sue x
Member

Re: August 2018 Chemo starters

Hi Jude,

Fantastic news that you are home - I hope you had great nights sleep in your own bed! Take care.

I start H and T tomorrow but my T is Paclitaxol not Docetaxol hence weekly rather than every 3 weeks.

Interesting to hear that you are going to have bisphosphonates, I am discussing this with my oncologist and just weighing up the benefits versus the SEs....but think I will go ahead.

 

Hi Georgie,

Sorry to hear about your accident. Not what you need! But good that nobody was hurt and you will get it sorted through the insurance.  

Good luck for today – I start Herceptin tomorrow.    

 

Hi Sue,

I’m wondering if you could get treatment for ‘’dry bits’’ on prescription? I’m planning to talk to my Doctor about it to see if I can.

Good to hear that your enzymes down and chemo back on track. I know what you mean about being relieved, I have my end date cemented in my brain so will be gutted if it gets delayed!

 

Take care everyone!

 

Cat x

Member

Re: August 2018 Chemo starters

Hi everyone, 

 

Jude, I am so glad you are home... stay well!! 

 

I start on Herceptin tomorrow, and T (docetaxol) on Friday.....

I wish I didn't even know the H word or the T word.... just thinking, this time last year, most of us didn't.

 

Had a little wobble this morning when I thought I saw some pus around the picc line entry point. The chemo unit had me come in to have it looked at, dressing changed and swabbed the white fluid? They said they didn't think it looked like an infection, so I am going ahead with treatment as planned.

 

Didn't help that on the way in to the hospital, someone backed their taxi into the side of my car. I got all the drivers details, took a photo of his car and mine, and even asked him to sign a statement to say it was his fault....... He was really apologetic, but then tried to say he could ask a mate to fix it if I didn't use my insurance company etc. No way!!!!! Not too much damage, but it will need fixing properly. Insurance company was amazing. They are arranging all the repairs and supplying a courtesy car. I have told them my 'situation', and that I was not sure I would be home when they pick up my car and bring the hire car.


Could have done without this, but in a funny sort of way, this just doesn't matter; with what we are going through with treatment, which is essentially saving our lives, a broken car seems like a minor complication.

 

Goodnight everyone.
Georgie x

Member

Re: August 2018 Chemo starters

Hello Jude

Great news that you are home - you must be so relieved.

I've not definitely decided if I'm going to do the trial - I want more information on taking aspirin over such a long period of time - 5 years seems a long time but like you I want to give something back but obviously want to make sure Im not setting myself up for any other issues.

In other news - I'm reporting back on my dry bits issue. I've been using Replens now for about 2 and a half weeks and there is a massive improvement. I'll be watching what happens with the next round of chemo and if that impacts it but so far Im hopeful. Downside is it's quite expensive - about £12 for 6 treatments which will last about 3 weeks and the reading I've done on it seems to suggest it's a permanent need. I am hoping that as the initial dryness is addressed I can maybe reduce the frequency of each treatment to maintain things but will see. Will report back again in a couple of weeks.

Nite all wishing you all good sleeps free from hot flashes and middle of the night angst

Sue xx
Member

Re: August 2018 Chemo starters

Hi Sue

I got home at tea time today & cant wait to sleep in my own bed!
That’s good news about your liver enzymes, like you say pleased to be having chemo 😂, but I know exactly what you mean
I was asked to go on the add-aspirin trial & I wanted to do it as I wanted to give something back. But when I looked into it as I will be taking bisphosphonates daily for 3 years (starting after chemo) & these can cause oesophagus issues so I decided against it, as I wouldn’t know which drug (or placebo) had caused it

Take care

Jude x

Member

Re: August 2018 Chemo starters

Oooooo - forgot to add. I've also been asked if I'd be interested in joining a trial. They are looking at the effectiveness of asprin in preventing reoccurrence? Has anyone else been asked about this?
Member

Re: August 2018 Chemo starters

Hello Jude

Good to hear to are improving. Fingers crossed that you are allowed home today.

I've been to the hosp myself this morning and my liver enzymes are back down so I can resume chemo treatment and I'll be having my 4th one tomorrow.

Never expected to be relieved about being able to have chemo......

Hope everyone else is keeping as well as can be expected.

Sue xx
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Re: August 2018 Chemo starters

Hi Cat
Good luck with the T!
9 weekly sessions of T sounds quite heavy? Do you know what the dosage will be?
My temp has been down for the last 2 obs & as my white blood count is up I’m pretty confident I’ll be going home today

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Jude,
Totally get that. I’m due to have 9 weekly sessions of T starting on Friday so will finish Chemo in December and the plan is to have a break over Xmas and start radiotherapy in Jan...would also be gutted if Chemo was delayed.
Hopefully you get some good news today. 🤞🤞🤞
Cat x
Member

Re: August 2018 Chemo starters

Hi Cat

Chemo & herceptin is on 3 weekly cycle so hopefully will be ok for next one
I really don’t want to get delayed with the chemo as radiotherapy is provisionally planned in to finish 21 December - I’ll be gutted if it runs over Christmas & into the new year

Take care all

Jude x
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Re: August 2018 Chemo starters

Hi Jude,
Fingers crossed you get home tomorrow 🤞
Are you having weekly chemo sessions now? Will the next one be delayed?
Take care, Cat x
Member

Re: August 2018 Chemo starters

Thanks Cat

The doctor has been round & said I need more IV antibiotics so I am staying at least one more night - they will send me home with oral antibiotics & an appointment to see my oncologist prior to next chemo
Temperature is quite erratic it comes down & then spikes again
Hopefully get home tomorrow

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Jude, sounds like they may want to keep you in for a while longer......it’s not much comfort but you’re in the right place to get best treatment. I hope they can sort the bone pains out too. Stay strong 💪.
Cat x
Member

Re: August 2018 Chemo starters

Hi ladies

Thanks for your support

I had felt shocking yesterday & my temp was 38 so I phoned up for advice & they decided to admit me.
Neuts were 0.36 & that’s with having the Filgrastim injections! Also keep having nosebleeds which I don’t normally suffer with. Had 2 lots of IV antibiotics last night & 1 lot this morning
Temp was 38.2 this morning, doctors are due round shortly so should know a bit more later - not sure if I’ll get home today
Unfortunately the morphine didn’t help much with the bone pains!

Take care

Jude x
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Re: August 2018 Chemo starters

Hi Jude, oh no! so sorry to hear that, i hope you are back on track very soon. What symptoms did you have before you went in?Sending you big hugs 🤗
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Re: August 2018 Chemo starters

Sorry to hear your news Jude

Hope they have you fixed up and thY you are back home soon.

Sue xx
ktk
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Re: August 2018 Chemo starters

Good luck Jude. At least you have a quiet room!! Kxx
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Re: August 2018 Chemo starters

Jude,

Sorry to hear about you hospital admission - did you have a temperature or just felt unwell? 

Morphine for the bone pain sounds like a good idea!

 

Take care and wishing you a speedy recovery 

 

jo x

Member

Re: August 2018 Chemo starters

Awww Jude!! 

 

Love and hugs! 

 

Let us know how you're doing! 

Member

Re: August 2018 Chemo starters

Hi Cat

Not sure if I’ll be doing the pink party adjust been admitted to hospital with low neuts!
Currently having IV antibiotics & there going to give me a little bit of morphine to combat the bone pain 👀
Got a single room on a small quiet oncology ward so it could be worse

Hope all ok

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Lovely Ladies,

 

Ktk – Big congrats on finishing chemo…..a milestone we are all looking forward to!  

 

Jude – Great blog, thanks for sharing. Good luck with the Pink Party and the baking…..I would definitely be buying in regardless of how I felt… but that’s because I am a rubbish cook/baker! Smiley Happy

 

Sue – Sorry to hear about your delay but pleased to hear you are being well looked after.

 

Georgie and Memar  – I’m also starting H and T soon….this week (Friday), so I will be making the most of the next few days whilst I’m feeling good!

 

Jo and Jude – good to hear your updates on H and T, gives us an idea of what to expect.

 

Good luck to everyone undergoing treatment this week and I hope those pesky SEs are kind to you all.

 

Take care

 

Cat x  

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Re: August 2018 Chemo starters

Hi all

I’ve written a short blog on Pinktober, breast awareness month x
https://dancingwithchemo.wordpress.com/2018/10/02/pinktober-fest/
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Re: August 2018 Chemo starters

Hi Ladies
Hope you are all coping!

Jo - I seem to be following your pattern, absolutely pooped today had to go back to bed for an hour but did manage a slow 30 minute walk. Aches & pains worse today but tingling not as bad.

Sue - hope your liver enzymes settle down, bit of a blow being delayed a week if you were feeling ok but better safe than sorry

Linda - I’ve only tried the water based product but does seem to help overall!

Georgie - you’ve had a really tough time so it makes sense that they reduce your chemo & steroids, hopefully it will work out better for you. Giving yourself the injections is ok, the bone pain is a bit wearing but manageable - I’m just taking paracetamol & nurofen as required. Hope it all goes well

Take care ladies

Jude x

ktk
Member

Re: August 2018 Chemo starters

Good luck Georgie. It is good that they are looking after you. Sending you loads of positive vibes!! Kx
Member

Re: August 2018 Chemo starters

Hi All, 

Jude and Sunfower18, I am very interested to hear your experience on T so far. Hope your aches and tingling bits settle... it's  all so horrid isn't it?! 

 

As you know, I have had an awful time with FEC, and was due to start Herceptin and T on Thurs and Friday this week, but because of all the neutropenia and hospital admissions, I had a meeting with the head oncology nurse on Thursday instead of treatment.  Onc has decided that I am very over sensitive to chemo drugs full stop!..... I tend to agree 😫!!!

 

So they have planned to only give 75% of the full dose, even before I start... and only 50% of the steroids.  Don't understand all of the technicalities, but the nurse said that they are trying to keep me out of hospital.  They're giving less steroids because he said they didn't appear to make much difference with FEC, and even with the white cell booster injections, I still had neutropenia and 3 trips to A and E with high temp. and infections. 

 

They are giving me 2 whole weeks of fluconazole and mouth washes too, since the oral thrush was so bad that I could hardly open my mouth whilst in hospital last time.  When they asked me to say the obligatory 

'aaaaah', I only came out with a very husky oooooooor!! 😂🤣..... 

 

So it's Thursday for Herceptin and Friday first T.  

Love to all, especially those on treatment this week or next ❤️

 

Georgie ❣️

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Re: August 2018 Chemo starters

Jude 1962 I noticed you are trying yes. Are you trying both water and oil lubricants or which do you think is best? Ta.
Linda x
Member

Re: August 2018 Chemo starters

Hello all

I've had a bit of glitch in my treatment. My blood tests showed that one of my liver enzymes was quite high so they are delaying my 4th treatment by a week to give it time to settle down. Wasn't the news I was expecting as so far I feel as though I've been quite lucky with the fairly minimal side effects I've suffered in comparison to some of you.

I feel fine - really my pre-chemo self so I'm hoping it will sort it's self out.

Has anyone else had this issue?

Sue xx
Member

Re: August 2018 Chemo starters

Hi,

 

I hope everyone is ok.

 

Jude, Yes completely agree- the nausea was awaful with FEC.

i was really tired yesterday, the worst I have been and didn’t even make it out for a walk. I couldn’t lift my legs.

 

Spent most of the day curled up watching trashy TV and sleeping. 

 

Good  nights sleep though and I’m actually venturing out to take my daughter to her netball match this morning, something I couldn’t have even contemplated yesterday! I may well sleep for the rest of the day as I will probably be exhausted!

 

Have a good weekend all

 

 

xx

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Re: August 2018 Chemo starters

Hi,

 

I hope everyone is ok.

 

Jude, Yes completely agree- the nausea was awaful with FEC.

i was really tired yesterday, the worst I have been and didn’t even make it out for a walk. I couldn’t lift my legs.

 

Spent most of the day curled up watching trashy TV and sleeping. 

 

Good  nights sleep though and I’m actually venturing out to take my daughter to her netball match this morning, something I couldn’t have even contemplated yesterday! I may well sleep for the rest of the day as I will probably be exhausted!

 

Have a good weekend all

 

 

xx

Member

Re: August 2018 Chemo starters

Hi Ladies
Hope you are all doing ok & coping well

Jo - the tingling fingers & toes started yesterday & today I ache all over & feel like I’ve been kicked by an horse! I’ve started to take pain killers just to keep on top of it. I’m also keeping an eye on my temp as I do feel slightly under the weather - but it’s a lot better than constantly feeling sick.

Take care all

Jude x
ktk
Member

Re: August 2018 Chemo starters

Hi Jo. I took codeine for the bone ache. My GP advised not to wait until the pain got too bad. I found my mouth was hideous, it felt as if it was covered in lard. I couldn’t taste anything and my tongue felt numb. Unfortunately it didn’t stop me eating and I craved sugar and salt! I have put on all the weight I lost☹️

My worst SEs with T were diarrhoea and indigestion. I got a few hot flushes but no prolonged temperatures. Just taking it easy and looking forward to the drugs leaving my system.

Good luck with the rest of your treatment. Kxx
Member

Re: August 2018 Chemo starters

Well done ktk in finishing your chemo!

 

I’m now on day 5 of T and luckily sickness/nausea has stayed away....

 

Feeling very tired though and my bones ached liked anything last night, really uncomfortable but think I should take some painkillers if it gets worse agin.

My throat is also sore and such a weird taste but think that is to be expected. Ice lollies at the ready! 

 

Ktk as you have already said,  with FEC there was a pattern but I’m at that awkward stage where I dont really know the pattern this is going to take and whether my SEs are side effects or an infection but keeping an eye on temperature. I’ve decided that I’ll just take each day as it comes and if I cannot do anything then just rest- I managed to get into work in the last week of the FEC cycles but if I don’t this manage it with T, well it doesn’t matter...

Take care everyone 

jo xx

ktk
Member

Re: August 2018 Chemo starters

Hi Memar. I am TN too, although I had surgery first. Talking to the surgeon and oncologist they said it would make no difference to the outcome but the surgery may be less if the chemo shrinks the tumour.

Re chemo, I found FEC made me feel like I had a bad hangover for three or four days, which I could keep on top of with the excellent anti sickness and painkiller meds I was given. I then had two good weeks and could make plans etc. I found the Y cycles more difficult because you don’t feel sick so are ok for the first few days. I then went downhill mid cycle, feeling very tired, with diarrhoea. Had a few days in bed but better in the last week. I found that I couldn’t make plans with T as I didn’t know how I would feel day to day. But do remember it is different for everyone!

I finished chemo on Wednesday 😁. Start rads at the end of the month. Good luck with the rest of your treatment and feel free to ask anything! Kxxx
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Re: August 2018 Chemo starters

Hi all,

 

A little unsure of how this works. I have just finished my 3rd cycle of FEC and due to have my first of 3 T on 22nd this month, Just wondering if the SE from the T are likley to be as bad as the FEC ?? My cancer is triple negative and is currently also sat in atleast 3 lymph nodes, hoping having the chemo before surgery was the right move, feeling confused and wondering why I'm putting myself through it all Smiley Sad

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Re: August 2018 Chemo starters

Hi Ladies. Doesn’t appear to be any recent comments but perhaps looking in wrong place?! Hope you’re all doing ok. I questioned why I was putting myself through this **** but few people said how would you feel in future if you didn’t have what’s offered. Last of 3 FEC yesterday and then pacetaxol for 12 weeks then radiotherapy. It’s a long haul but there will be end to it!!! Keep strong ladies. Love and hugs to you all 🤗🤗🤗
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Re: August 2018 Chemo starters

Hi Lovely Ladies,

 

Jude & Jo – Well done on getting through your first T/Herceptin – another tick! It’s good to hear how you are getting on, I have my first next week (12th) and I’m really hoping I can avoid the nausea (which was by far the worst SE for me during FEC), but will have to wait and see!

 

Sue – thanks for bringing up the topic of ‘’dry bits’’ – I’m not aware of any other products other than those already mentioned by you and Jude.

 

I can highly recommend the Look Good Feel Better course…even if you go just to get the goody bag which is great! They introduced different colours for my eyes and lips that I wouldn’t have used otherwise and really liked it!

 

Take care everyone,

 

Cat x

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Re: August 2018 Chemo starters

Hi Jo

I’ve had another good day today & even went for a 5.5km walk - I do find that I need the fresh air & I think walking mainly on my own gives your brain a bit of processing time (if you know what I mean!)

I will await the tingling to start! Hope yours isn’t getting any worse
Also I’ve been swilling with the mouth wash to try & avoid any mouth issues, as with the first EC I did get mouth ulcers

Take care

Jude x



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Re: August 2018 Chemo starters

Hi Jude,

yes I agree, long may it continue.

 

Wide awake again last night at 3 but I have now finished the steroids for this round so hopefully it won’t be so bad tonight.

 

Day 3 - im getting tingling/pins and needles in my feet though and my legs do ache today but at least  I have not got the nausea, so I have been eating well!

 

Im just playing the waiting game at the moment- waiting for all the other side effects to kick in.....hoping they don’t though! Planning to go out for a short walk later so I will see how far I get.

 

take care

jo x

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Re: August 2018 Chemo starters

Hi Jo

Thanks for the info

Have to say at the minute I’m preferring T to the EC I had previously! I agree that the E (the red one was awful)
I had no reaction to the herceptin on Monday just a long day as you have to stay on the ward & be monitored for 6 hours, but due to the steroids I barely slept Monday night!
The T was fine, no nausea or sickness & I ate as normal yesterday - did go to bed around 9.30 though & slept really well. Long may it continue

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Jude,

 

Sorry I don’t respond yesterday, very tired so was in bed by 9.

yes i I did get injections but I’ve been on them the whole way through FEC as well.

 

The nurses struggled yesterday with finding a vein that hadn’t collapsed but once they had canula in it didn’t take too long - about 1hour and half as they dripped it in slowly to make sure I didn’t get a reaction. I had pre sickness meds first and then a flush through afterwards. Much easier than the 3 FEC drugs as I didn’t have that awful red injection!

 

I had a good night but wide awake at 3 - think that was the steroids kicking in but no sickness/nausea today which is good for me as I felt really nausea on FEC.

 

Hope you get on ok today with your first T.

 

jo x

Member

Re: August 2018 Chemo starters

Hi Jo

Well done on the first T - how long did it take?
Have they given you injections to do at home to generate the white blood cells?

Hope you have a reasonable night - take care

Jude x