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June 2019 chemo starters

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Re: June 2019 chemo starters

Thank you I certainly won’t put myself through that again xx hope your ok xxxxx

Member

Re: June 2019 chemo starters

Sorry lovely to hear you had a rough time at A&E.   Did you take your red card with you to show that you are having chemo treatment ???

i have also had real painful chest pain.  Took Lansoprazole at home but spoke to chemo nurse last friday during my treatment and she sent the doctor to me for a chat.

he has prescribed Omeprazole but so far 🤞🤞🤞i havent needed to take one yet.

wondering if maybe it was because i had 2 chemo drugs on my first session and now i have just one for 3 weeks..

chin up....a day at a time..... we're all here to chat and offer advice it we can 💖💖💖

Member

Re: June 2019 chemo starters

Thanks ruby, it was horrible. I slept well tho but teary this morning. I think my anxiety has raised its ugly head over last few days. I think I’ve coped really well up to then. I will ring my doctors tomorrow for a prescription xxxxx

Member

Re: June 2019 chemo starters

Welcome nicolaj and charliehedgy 

 

Alvilajo I am sorry you had such a rubbish time, that absolutely should not happen if I was you I would make a complaint. 111 is perfectly capable of faxing a prescription for a chemo patient directly to a pharmacy you should not have needed to sit in a and e at all as if they suspected infection oncology should have called you in. I know for a fact 111 can do this as they did it for me yesterday when my uti recurred, I spoke to oncology who referred me to 111, I had a telephone consult with doc and he faxed a prescription to my local Asda within about fifteen minutes.

 

if you have to go to a and e again make sure you tell them you are on chemo and you may be neutropenic. They should at least try to isolate you away from people who may be infectious.

 

you might need something a little stronger than the over the counter stuff, omeprazole and lansaprozole are both good. Your gp or your chemo suite can prescribe these, as can 111.

 

Pick yourself up, dust yourself off - you will be fine 😊 sending you a big hug, Today is another day, you have got this!

 

Sorry if I sound bossy (I am) but this kind of thing makes my blood boil and is totally avoidable when on chemo!

 

Ruby xx

Member

Re: June 2019 chemo starters

Hi Minimad, I am on carboplatin with weekly paclitaxel. Yes I have the Filgrastrim on days 2-6 then 16-20 of the cycle. Filgrastrim doesn’t like me much!

 

Ruby xxx

Member

Re: June 2019 chemo starters

Hi ladies

I’m new to the thread and due to start chemo on the 26th June.

I was diagnosed in February and have had a lumpectomy and full node clearance after the biopsy showed a cancerous node.

Having 3 x EC and 3 x Doxcetol (not sure I’ve spelt that right) going to try with the cold cap and see how it goes.

Is anyone else having the same treatment?

Hope you all have a good weekend xx

Member

Re: June 2019 chemo starters

Worst evening, rang out of hours oncology for a prescription to get some anti acid tablets and was advised to ring 111 which I did, then told to go to a&e. And say I’ve been told to get there within the hour!! Sat there for 2 1/2 had blood pressure done then sat again waiting. Ended up having panic attack in waiting room and had to get out. What a state to get in, I left couldn’t face going back in. Bought some gaviscon and going to bed now feeling embarrassed and low. First chemo was Wednesday and was feeling ok 🙁

Member

Re: June 2019 chemo starters

Hi every He, 

Also a June starter I’m starting on Wednesday 19th. My surgery that was planned for Monday 17th has been cancelled and we are trying chemo first. Anxious nervous and apprehensive aabout starting but I’m trying cold cap a well. Had some hints and tips from a few others in a thread who have had massive success. 

Member

Re: June 2019 chemo starters

Hi Ruby,

thx for your reply.

are you having to have the tummy injections ?  To encourage bone  marrow to produce more white blood cells ?

sorry...chemo brain already 🤪🤪...  whats your treatment plan again ??  Xxx

Member

Re: June 2019 chemo starters

Minimad - mine was paclitaxel as well, apparently you either get the hideous back pain or the hideous chest pain  but you don’t get too choose! 

 

Scary isn’t it? I am ok with pain having had lots of surgeries and reconstruction work done already so I consider myself a tough old bird really but that chest pain was grim.

 

glad they got it in eventually 

 

my picc line line is awesome, bloods and chemo through it from now on. Don’t feel a thing! They were using my knuckles for veins so I said enough is enough!

 

i feel pretty ok today but think I might still be swimming in drugs! No steroids for me this time for afterwards which I was surprised at?

 

hugs to you all, Ruby xx

Member

Re: June 2019 chemo starters

Morning Ruby x

yes second lot for me yesterday.

i also had a reaction about 20 mins in. (Paclotaxel)  horrendous lower back spasms.. treatment stopped....more steroid and anti allergy.  Took 20 min to settle then on with treatment.

worse than child birth but i am not one who can do BAD pain...ok so i'm a woss 🤪🤪😆😆

 

had trouble with veins and cannula again.  Am going to have a picc line fitted to ease my stress and worry.  Shouldget a call on monday hopefully.

hoping all you lovely ladies are coping in your own way to get through this worrying time.

and big HUGS to you all......  one day at a time....we'll get there 💖💖💖💖💖

 

Member

Re: June 2019 chemo starters

Morning ladies,

 

second chemo done, had very scary allergic reaction three minutes in and went into anaphylactic shock. No discernible pulse or bp for a few minutes but the chemo team were amazing and calmly sorted it, slowed the infusion and we got there in the end! Feel like a cat with one less life this morning!

 

Hubbys fiftieth today so hosting a big bbq for twenty five people! Wishing I had some steroids to take today!

 

how is everyone today?

 

Ruby xx

Member

Re: June 2019 chemo starters

Thanks guys 

think my cold cap experience maybe won’t be as efficient as it was my husband running to freezer to replace gel bit every 30 mins or so, not a pump one, and only 15 mins before & after treatment whilst flush going through! Maybe that’s why it was more tolerable! Zed x

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Well done Zed for the first FEC.  I had that too.   Also had the woozy head first day and nausea but soon passed.  The bag of treats you get given is quite shocking at first isn't it.  I had to keep a diary and write down when to take what but you soon get used to it.  Also well done on the cold cap... I never tried it but it sounds like an endurance mission!

Kip

x

Member

Re: June 2019 chemo starters

Go Zed for having cold cap n saying it was OK. 

 

I'm in two minds whether to try it next time as I don't want that horrible sick feeling in last 30 min of the 90min you have to keep it on after chemo.

It's deffo helped me with no loss of hair, but I don't know if I'll be able to keep it up. 

 

FYI re cold cap question... 

It's like a gel hat, it's tight on your head. Then over the top is another hat, that gets draw string pulled tight and strapped around your chin. 

Freezing cold gel is pumped around 30min prior to chemo, then during chemo then 90min after.

You'll get ice on your hair. 

You'll be cold in the head. 

It's OK I thought, til the last 30min which were hard going. Til then I was like what's the fuss. Then it hit me that freezing cold feeling I couldn't shake off.

I suffered sweating too as I had a hot water bottle and various blankets, possibly too many, might try less next time n see how that goes! 

Member

Re: June 2019 chemo starters

Hi all. Had my first FEC yesterday. Long wait, long day, felt grotty last night with woozy head, headache, nausea, but much better today. Bit flushed in face looks like pink beard! Did cold cap & that felt fine but not convinced how effective it will be.... 

Came home with shed loads of tablets to take which I didn’t expect- probably stupidly- & the tummy injection things others have mentioned. Drinking ginger drinks to relieve nausea seems to help. Good luck all x

Member

Re: June 2019 chemo starters

Hi Kip

Thanks for the advise.Lots to think about before I start chemo next Friday

Member

Re: June 2019 chemo starters

Hi fellow chemo starters. I joined forum today having had my first oncology consultation yesterday. I'm due to start chemo (HPTC) on 21st June providing they can fit all the tests in before then. 

I'm her2+, hormone - grade 3 lymph node involvement. Tumour currently approx. 5cm but growing fast so needs shrinking before I can have surgery.. Anyone with similar diagnosis?

I'm have my pre-treatment council on Monday so any advise would be appreciated. What is a cold cap? 

Member

Re: June 2019 chemo starters

Minimad, some have pre meds some don’t. Depends on your regime and your oncologist. This time I don’t which tbh I prefer as the pre dosing steroids made me super hungry and the last thing I need is to be bigger than I already am (thank you seven years of Letrozole!) I have iv steroids when I go to the chemo suite then three days worth straight after.

 

Do ask nurses about the acid, there are multiple drugs you can try. One will work!

 

Ruby x

Member

Re: June 2019 chemo starters

I am sorry to hear that Louise, this happened to me with my first lot of chemo in 2011. They pumped me full of antibiotics, took endless bloods and after five very boring days (we practiced each other’s make up and eyebrows) they let me home, infection sorted,  newts intact. It’s a scary thing but they do this all the time, make sure all visitors are healthy and no sickness. You have been unlucky to get this first round, did they give you Filgrastrim to inject?

 

big hugs. 

Ruby xx

Member

Re: June 2019 chemo starters

Oh no Louise. I hope they can sort it out quickly xx hugs 

Member

Re: June 2019 chemo starters

Hi 10 days after 1st round - Docetaxel and Carboplatin - and I have been admitted to hospital.  My temp is 39. They say its an infection - but dont know what sort of infection.  My Marker is 110.  I'm not sure what the marker is  what that means.  I have the Neutropenic thing.  My white blood count is very low.  Feeling very fed up

Member

Re: June 2019 chemo starters

Hi Ruby,

you mentioned acid indigestion....   i have had a real bad sharp pain behind my chest bone in the middle.   Doesnt feel like burning or burps..... like its acid....

taking a Lansoprazole once a day....  but still getting twinges.

will talk to nurses when i go for my second session on friday...

 

did you have some pre meds before your first treatment ?   Do we assume this is going to be the norm everytime before our chemo  ??

thx  xx Jan  💖

Member

Re: June 2019 chemo starters

Hi, all went well, I need to have a pic line put in for next session as veins a bit hidden! I feel fine in myself but apprehensive what’s to come. Procedure painless. One drug made my nose hurt a little bit but only lasted 5 minutes. Good luck tomoz xxxx

Member

Re: June 2019 chemo starters

Thanks for the prunes tip Debi2, I was eying up a tin in my cupboard earlier so some weird form of mind read going on maybe?

 

spot on with the anti sickness if you are still feeling or being sick or even the dreaded acid indigestion then ask for something different.

 

Ruby. Xx

Member

Re: June 2019 chemo starters

Welcome Whlsarah :-)

 

 

Member

Re: June 2019 chemo starters

Hi everyone, 

I started my chemo on June 3rd, like others I’m having chemo first, 4 cycles of EC, then 4 pertuzumab, trastuzumab and docetaxal - so 6 months altogether, every 3 weeks. 

I was wiped out the first few days, but feeling better this week. 

I had the picc line fitted, and have just had the dressing changed today. 

I had the 💩 issue last week, I tried lactulose as recommended by the nurse. We will see what happens next cycle! 

My scalp feels a bit sore, so I guess my hair is going soon. 

Its been great to read all your posts and hear about similar experiences. 

Member

Re: June 2019 chemo starters

HI

 

Just popping in from April starters - i have been having two prunes on a morning and two on any evening (tinned kind in syrup) and they have been good for the plumbing issues. i am trying to eat a lot of fruit too although i do slather them in cold custard which i seem to have a craving for at the moment!!

 

I also had to change my anti sickness because my first lot made me feel more sickly.  The nurses are there to help you so do ask if the tablets aren't working.

 

Wishing you all well.

Take care 

Debi2

 

 

 

Member

Re: June 2019 chemo starters

Hi Ruby,

so pleased Picc line was ok. I asked for a portacath but my hospital only does cannula....😖😖

Good luck for friday,  we can compare notes in the evening.. tc xxJan 💖

Member

Re: June 2019 chemo starters

For those having a picc line fitted, it was done in under an hour, no more painful than having a cannula put in 😊 could have driven myself home but my step dad was being taxi today due to me still taking the codeine. Good luck ladies with chemo this week, I am back for number two on Friday 😊

Member

Re: June 2019 chemo starters

Hi ladies,

Ruby so good to hear your news....💩💩 i also have had some success today but pains in tummy pretty awful...  and heart burn....again....and again....

def feeling peaky for past 2 days.... blood test tomorrow at drs.  Then second session friday.

is yours tomorrow ?

good luck to the ' first timers ' this coming week...  thinking of you .. 💖💖

Member

Re: June 2019 chemo starters

I will. I’ve got to go and have ecg today as they’ve lost mine 🙄xx

Member

Re: June 2019 chemo starters

Hi Alvilajo

I'm the following day for my first one. So completely empathise with you. Let me know how you get on. Good luck xx

Member

Re: June 2019 chemo starters

My first chemo is tomorrow. Nerves have set in now. Been on two weeks of antibiotics as breast red and slightly warm but they’ve not worked so stressing about that although it doesn’t hurt. Feeling scared of the unknown xxx

Member

Re: June 2019 chemo starters

Thanks Kip, yes they gave me that as well while I was an inmate in hospital this past week! Good tip!

 

However, exciting news I am sure you will all be thrilled to hear...

 

i have had a 💩 😁 

 

not going to let it get so bad bad next time, still on codeine so need to keep on top of it!

 

having picc line fitted today and woke up this morning really hungry having had no appetite for a week or so.

 

wish the washing machine noises in my ears would stop and praying the hearing damage is only temporary!

 

how is everyone else doing today? 

 

Ruby xx

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hi all,  oh dear the back end problems hit me too, I think it is the steroids which do it.  I was told to buy a bottle of lactulose (it's in Tesco etc) and used to take a couple of spoonfuls before  bed for the first few days of each h cycle and tils things improved in that department.  Once steroids were out of system things were normal again.

Kip

Member

Re: June 2019 chemo starters

Mini mad - I was given my movical on prescription by the chemo suite. It’s a powder you dissolve in water, tastes like lemon squash it’s ok. Not bloody worked yet though 😳😂 contact your chemo suite and let them know, they will sort you out for free 😊 here’s to normal 💩😉

Member

Re: June 2019 chemo starters

Hi Ruby,

glad you are feeling better now you are back home 💖 take things easy.

tonight i had some nausea kick in so have just taken Domperidone.  Hoping this helps me some.

also i think im like you....the back end plumbing isnt working properly...  not passed anything today but yesterday i managed ( sorry everyone ) 3 hard marbles...  im eating loads of fruit, wholemeal bread,  weetabix and plenty of water.    What is Movical ???  Over the counter or from hospital ?

thx  💖

Member

Re: June 2019 chemo starters

Hello everyone, hope you are all as well as can be expected, I am recovering much better in my own surroundings as predicted although still pretty off my face from my own personal pharmacy....however it is now day seven without a 💩😳 think the codeine and morphine have broken my plumbing! Chugging Movical and pretending it’s 🍷...

 

good luck for Thursday Zed, I found FEC doable personally, my top tip if you feel sicky or acidy is to remember that they often start you off with the cheap anti sickness 😉 don’t be afraid to ask for something different if it’s not doing the trick for you xx

Member

Re: June 2019 chemo starters

Hi everyone. Hope you all feeling a bit better. Just been for my new patient appointment with nurse & been given my first chemo appointment this Thursday (FEC). Will try the cap. Scary stuff

Member

Re: June 2019 chemo starters

At least they have let you out..... no matter how bad things are they just feel a little easier when you are in your own home.   

You sure are having a crap time arent you...  we just dont know what this awful stuff is doing to our bodies and how we react...

lots of rest inbetween loo trips,  water to flush everything nasty and be kind to yourself..  things will get better you just gotta go with it... sorry going on too much.

tc    Jan xx 

Member

Re: June 2019 chemo starters

Hi Chicken81,

sorry to hear you've felt grotty after your first session.  Just have to go with what your body tells you.

i'm not doing the cold cap as when i mentioned to my surgeon i have headaches she said the cap could make them worse.   

So i now have my ' wiggie '  and have ordered some cotton head scarves in different designs and a couple of sleep caps ,  so you could say i'm ready.... not really but no choice......

hope things improve for you.  I have my second session next friday....

good luck .... Jan xx 💖

Member

Re: June 2019 chemo starters

I have escaped the hospital! They agreed I could just as easily have the headache from hell and 🤮 in my own home so have let me home with a carrier bag of antibiotics for the uti I picked up, codeine, anti sickness and oromorph. Nice to be home but still feel like 💩 to be honest! Can’t stand up for more than a few seconds...am considering slithering to bathroom on my belly!

 

tomorrow is another day for all of us, let’s hope it’s a better one 😊 XX 

Member

Re: June 2019 chemo starters

Hello everyone, 

Had my first chemo, EC, Thursday.

Friday was OK for me, but Saturday, it was like I lost the day, just totally knackered beyond belief. Today I feel a little better, but I'm guessing I'll be resting up most of the day. 

I did use the cold cap. The first 30min before chemo was OK.

Then had to have 90min after chemo. The last 30min where horrible. I felt sick, was teary, just wasn't comfortable at all.

I'll give it one more go, but those last min were not nice at all. 

I'm still just lethergic is all I can say. Feel very weird not being able to just crack on with things. 

I've signed up to the race for Life for July 14th. Got 20 on the team so far.

Hopefully get into some sort of regime of training soon enough. The race is a few days before cycle three, so should be OK for it. 

Hoping everyone is OK. 

My head is a little hazy, not sure how else to describe it. 

Speak soon

X

Member

Re: June 2019 chemo starters

Well started on the tummy jabs,  took out of fridge half an hour before.  John did mine and didnt feel a thing.. yay........ no problem!   Good luck with yours xxxx 💖

Member

Re: June 2019 chemo starters

Hey Ruby,

thanks for your update... hang in there girlie 💖

took my jab out of fridge 1/2 hr before,  john did it for me n didnt feel a thing...yay...

stay in touch yeah ??  💖💖

 

Member

Re: June 2019 chemo starters

Hiya, I am still in but pain improving although now have a uti! Too many hospital carbs!

 

the thought of the injections is far worse than the doing, yes you pinch some flesh and put needle in at angle. It is self retracting. See how you go but I found it helpful to a) take out of fridge half an hour before and b) have some paracetamol handy (check your temp first) in case of fluey like symptoms 

 

Ruby x

Member

Re: June 2019 chemo starters

I have to have 5 days of injections too, it’s to prompt the bone marrow into producing more white cells ( I think that’s what they said) my hubby is going to try to do mine god help me 🤔

Member

Re: June 2019 chemo starters

Sorry to read you are having bad symptoms... maybe your are out of hospital now ..

i will be starting the Fili....something tummy injections tomorrow.   Was never told i would

be having these so bit of a shock.  My husband is going to do them for me.

once you've pinched the skin do you put the needle in at an angle ?  Was told this made it less painful or just straight in....

do hope things are beginning to improve for you..big hugs. 💖

Member

Re: June 2019 chemo starters

Welcome samarshall66 😊 

Chicken hope it went ok and cold cap not too bad?

i am still an inmate at my local hospital, came in for a head ct on Wednesday been here ever since. Severe headaches probably weird side effect of chemo or Filgrastim injections. Now got uti and sickness so looks like I will be here for a couple more days. Keep smiling ladies Ruby x