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June 2019 chemo starters

Member

Re: June 2019 chemo starters

Hi Avilajo,

 

how you getting on with your picc line ?  Have they been able to use it yet for your chemo ?

had mine fitted yesterday afternoon,  hoping it can ge used for my double whammy session later at 2pm.    Hair is just constantly shedding now,  its everywhere,  so am wearing my scarves now day and night  😲😲

 

ive not had sickness either,  just a kinda feeling so been taking just 1 Domperidone in the morning.

got weighed when i had my review on wednesday with chemo dr. lost a little but at least im still eating ok so far....  wonder if more side effects pop up the more sessions you have 🤷‍♀️🤷‍♀️

tc ladies n enjoy the sunshine if you can... xxx💖💖💖

 

 

Member

Re: June 2019 chemo starters

Hi chicken81 (sorry don’t know your real name)

glad the 2nd time seemed better, I’m def going to see if they can change my sickness meds, I’ve felt so rotten with headache and sickness. Hope you are feeling better soon xxx

Mrsingle83 

yeah I rang the Christie hotline and they were brilliant, it’s a horrible feeling sick. I’ve only got steroids for 2 days plus injections for 7 days.

tablet wise for sickness I have ondansetron but only for 2 days, metoclopramide and now I’ve got prochlorperazine. Bit concerned about taking them all and still feeling sick but will carry on and hopefully will pass soon

 

taken care and hope everyone has the best day they can love Nic xxx

Member

Re: June 2019 chemo starters


Different chemo regimes have steroids at different times, I get iv on the day and some take home for three days with one type of chemo and just iv with the other one. I have tablet ondanesetron, it’s pretty good most of the time. I call my chemo suite for everything in hours and the oncology ward at all other times. Different hospitals do different things but we have a nurse manned hotline and they are pretty good. If what they have given you isn’t working they are there to help and will if they can! Ruby xx
@MrsIngle83 wrote:

I haven’t got any steroids to take I’m a bit confused - I have some but they said to take them on the day of my chemo. 

Ive been prescribed metoclopramide but it’s not helping. When I ended up in a&e they gave me ondansetron IV and that was amazing! 

Is it the chemo hot line I call about sorting my sickness? 

 

Hope your feeling a bit a bit better Ruby xx 


 

Member

Re: June 2019 chemo starters

I haven’t got any steroids to take I’m a bit confused - I have some but they said to take them on the day of my chemo. 

Ive been prescribed metoclopramide but it’s not helping. When I ended up in a&e they gave me ondansetron IV and that was amazing! 

Is it the chemo hot line I call about sorting my sickness? 

 

Hope your feeling a bit a bit better Ruby xx 

Member

Re: June 2019 chemo starters


Keep going back to your team, they save the good stuff for the persistent ones! There are literally loads of options for anti sickness, not sure what you have tried but personally I found ondanesetron good, domperignone rubbish and metasomething or other pretty good. We are all different though! They can also give you an injection and get those steroids down you as they will help, and might make you fancy eating something which will also help! Ginger products help a lot of people on chemo, great excuse for ginger biscuits with a cuppa! Hope you get sorted soon, it’s a horrible feeling xx
@nicolaJ wrote:

Good morning ladies

 

Ruby I’m really sorry to hear your treatment has been delayed and hope they can do it soon, must be frustrating but I suppose these things happen. Get well soon xx

I’m still feeling nauseous just can’t seem to shake it and I’ve got 3 different lots of tablets, not actually been sick since weds and temp is fine.

i am just going to try and have a slice of toast so I can have my steroids, might feel better when I’ve eaten just don’t fancy anything which is certainly not like me - I love food!

anyway take care Nic xxx


 

Member

Re: June 2019 chemo starters

Oh Ruby, you are having a time. But it's good they want to look into it to make it better next time. 

 

Marie and Nic. Yesterday I had my 2nd EC chemo. I also cold cap. My first time on cold cap, the last 30min set me off feeling sick. So this time I got anti sickness extra into my IV. But the nurse said the EC drugs are horrible so that'll be why I feel sick.

But I've got they said the top anti sickness drug as they asked about travel n morning sickness and thought I'd likely to be bad so the normally start people on the bronze tablets then move them up, but I got the gold ones. I'm guessing it's price and strength? I'm resting up in bed atm but I can check my book for the names as you might feel sickly, but not too much you suffer a lot they said. 

 

I've used the cold cap paxmo machine, I do get a headache from it, they gave me paracetamol yesterday for the pain, today I'll hold off taking one, not sure I'll deffo need it. But take them if you do need it, just remember to take temp before hand. 

Hopefully your steroids will give you the humph you need, I'm more tired the next day when they wear off as I only get them for day two. 

 

Oh... Chemo team said I'm officially strange in my effects, as pubes are normally the last thing to go and it's the first thing to go for me! Well apart from the thinning of hair too Smiley Sad

Got a hair cut booked, so I'll still go as my fringe needs a tidy up. 

 

 

Member

Re: June 2019 chemo starters


Appointment Monday assuming he is back from sick leave, otherwise it will be Thursday. Feeling a bit more human today and tbh relieved to have a week to recover and get some strength back!
@Alvilajo wrote:

Aw ruby poor you, have they given you any idea when they’ll see you next xxxx


@rubythursday wrote:

Hello ladies, my chemo for tomorrow has been postponed as I need to be reviewed by the oncologist due to the reaction I have had each time and he is off sick so my appointment cancelled 😞 now battling diarrhoea and still feeling nauseated and lousy. Tomorrow is another day ...

 

Ruby xx


 


 

Member

Re: June 2019 chemo starters

No sickness for me thankfully but I’m still malting but seem to have full head of hair, I thought it would come out quicker. Saw my oncologist yesterday he’s happy with me. Dressing in piccline changed and plaster took bit of my skin off, I wondered why it was stinging so much, dreading next week as I don’t think my arm likes sticky dressings x

Member

Re: June 2019 chemo starters

Good morning ladies

 

Ruby I’m really sorry to hear your treatment has been delayed and hope they can do it soon, must be frustrating but I suppose these things happen. Get well soon xx

I’m still feeling nauseous just can’t seem to shake it and I’ve got 3 different lots of tablets, not actually been sick since weds and temp is fine.

i am just going to try and have a slice of toast so I can have my steroids, might feel better when I’ve eaten just don’t fancy anything which is certainly not like me - I love food!

anyway take care Nic xxx

Member

Re: June 2019 chemo starters

Aw ruby poor you, have they given you any idea when they’ll see you next xxxx


@rubythursday wrote:

Hello ladies, my chemo for tomorrow has been postponed as I need to be reviewed by the oncologist due to the reaction I have had each time and he is off sick so my appointment cancelled 😞 now battling diarrhoea and still feeling nauseated and lousy. Tomorrow is another day ...

 

Ruby xx


 

Member

Re: June 2019 chemo starters

Nicolaj, mrsingle83 and everyone else - how are you all doing today? Nausea under control?

 

Ruby xx

Member

Re: June 2019 chemo starters

Sorry you're feeling so poorly Ruby and hope you feel much better very soon xx

Member

Re: June 2019 chemo starters

Hello ladies, my chemo for tomorrow has been postponed as I need to be reviewed by the oncologist due to the reaction I have had each time and he is off sick so my appointment cancelled 😞 now battling diarrhoea and still feeling nauseated and lousy. Tomorrow is another day ...

 

Ruby xx

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hello NicolaJ, sorry to hear you've had a rough ride so far, Shi is right your unit will have different meds to give you so don't just put up with it.  I used to wear travel sickness bands during my Fec cycles, might be worth a try? Also keep taking the anti sickness as prescribed even if you think you feel OK. And don't worry just because u feel sick this time it doesnt mean you will every time.  As for the steroids,  I was OK on them, but constipated (used lactulose) and can disrupt your sleep.. But mostly when you come off of them you may get an emotional crash.. I always got down for a day or so when finishing them but they passed to. The injections can give you aches and pains usually legs and back.. But take paracetamol if they do... Remember to check your temperature before though.  I know thus all sounds dreadful but as you get a cycle under your belt you will work it what you need to take when and you'll be fine.

Kip

Member

Re: June 2019 chemo starters

Thank you Shi, 

I’ve got three different lots at the minute and I’ve stopped being sick now so it’s just nausea, I feel slightly more human now.

just didn’t expect it so soon after, just had my first steroids and injections, do you normally get any side effects from these do you know? 

Thank you everyone for all your advice it’s nice to know you’re not on your own xxx

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Hi your units should try you on different meds as long as you let them know, you are not expected to struggle through, they will try on on different ones till they get combination right for you ❤️I was on akynzeo and metochloprimide which worked a treat, no sickness, kept my appetite too. Don’t be afraid to ring your teams they are there to help and support and take care if you on this journey ❤️Hope this helps 💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

That’s what I’m thinking, maybe we are just unlucky and fingers crossed it passes soon. I’ve just had something to eat but feel really sick again.

what did they say at the hospital? Were you being sick or just feeling sick? 

Hope we are both feeling better soon, did you have the cold cap? I’ve got a headache and not sure if it’s from that or not eating and drinking properly 

take care xxx

Member

Re: June 2019 chemo starters

Oh goodness I hope you feel better soon Nicola. 

I ended up in a&e last night - had a temperature so rang hotline and they said to go in. Felt wonderful after all the anti sickness drugs and antibiotics kicked in. 

Just got up (didn’t get in till 6am) Feeling nauseous again though so I’m trying to eat little and often to help it and got a ginger tea. 

I don’t think I can hack feeling nauseous all the way through. 

Member

Re: June 2019 chemo starters

Hi rubythursday

That’s what I thought, most people said you start to feel a bit iffy around day 4 I’m hoping I’m getting mine out of the way early and it doesn’t last all the way through.

I’m currently on 3 different lots of anti sickness tablets, I can handle pain but feeling and being sick is not nice.

thank you and hope you are doing ok today? Xxx

Member

Re: June 2019 chemo starters

Nicola I think you have been unlucky, you might need more pre meds next time as you shouldn’t feel that awful day 1. I hope you feel better soon xx

Member

Re: June 2019 chemo starters

Good morning ladies, 

hope you are enjoying the sunshine.

 

Still feeling rubbish after my first EC treatment yet, was being sick most of the night so had to ring the Christie hotline who were amazing, they wanted me to have an injection but the out of hours Gp wouldn’t do it so ended up with some other tablets. 

Haven’t been physically sick this morning but still feel so sick and can’t stomach anything. Need to start on the steroids so will have to try something. Plus I’ve got a banging headache which I’m not sure is down to the cold cap or because I’m not drinking properly.

is this normal to feel like this straight away or is this just a blip and I’ve been unlucky?

Was supposed to be going for a meal tonight to celebrate my dads 70th birthday as it stands no chance.

Hope everyone else is having a better day

love Nic xx 

Member

Re: June 2019 chemo starters

Nicola -

ive just had first treatment today too and felt fine initially but now feel nauseous. 

Did I read your having FEC T too? 

 

Hoping an early night will sort me out x 

Member

Re: June 2019 chemo starters

I hope it passes quickly nicolaj. x


@Alvilajo wrote:

Also Nicola don’t forget to drink lots of water xxxx


@Alvilajo wrote:

Hi Nicola, I don’t think I felt sick until day 4 when i stopped the 3 anti sickness tablets they give u. Then I went on the other ones. But we’re all different. I hope you feel a bit better soon. You might have a tough day followed by a better one, rest up and don’t over do things like I do. Headache could be just stress from the day. Take care hun vic xxx


 


 

Member

Re: June 2019 chemo starters

Also Nicola don’t forget to drink lots of water xxxx


@Alvilajo wrote:

Hi Nicola, I don’t think I felt sick until day 4 when i stopped the 3 anti sickness tablets they give u. Then I went on the other ones. But we’re all different. I hope you feel a bit better soon. You might have a tough day followed by a better one, rest up and don’t over do things like I do. Headache could be just stress from the day. Take care hun vic xxx


 

Member

Re: June 2019 chemo starters

Hi Nicola, I don’t think I felt sick until day 4 when i stopped the 3 anti sickness tablets they give u. Then I went on the other ones. But we’re all different. I hope you feel a bit better soon. You might have a tough day followed by a better one, rest up and don’t over do things like I do. Headache could be just stress from the day. Take care hun vic xxx

Member

Re: June 2019 chemo starters

Glad to read the picc line went ok, another thing out of the way!

When I got home earlier felt ok now I feel terrible, stomach pains, headache and really sick i am assuming this is just the shock to the system? Did anyone else feel like this after their first treatment?

they have given me some anti sickness to start taking tomorrow but also some as a back up as and when I need them, feel like I’ve had lots of tablets today already but think I’m going to have try one and hope it makes the sickness pass. Xx

Member

Re: June 2019 chemo starters

Just had pic line fitted and it didn’t hurt but didn’t know it went into chest, glad I didn’t know to be honest. Hope you all ok today xxxx

Member

Re: June 2019 chemo starters


Everyone is different but I found fec ok, nausea but no sickness (take the anti sickness and if you still feel sick insist on something different) and fatigue were my main issues. Taste went a bit weird, but then it seems to on all chemos that I have had so far! You will be fine 😊 sorry your son is banished, it won’t be for long and you really don’t want an infection 

 

xx

@MrsIngle83 wrote:

Hi Ruby 

 

Thank you, I’m just on way to hospital now. How did you find it? Any major side effects you experienced? 

 

Just been to GP with my son who’s got tonsillitis and he’s said it’s best he isn’t around me so I’m currently feeling very sorry for myself as he’s gone to my mums for 5 days. 


 

Member

Re: June 2019 chemo starters

Thanks everyone for your comments and good luck Mrs Velo for tomorrow!

First one done and dusted I’m glad to say, the cold cap was the worst in the first 20 mins then think your head is that numb you can’t feel it but I will be taking a hot water bottle and blanket next time!

have a good day ladies xxx

Member

Re: June 2019 chemo starters

Thanks for the reminder to keep hydrated Shi.  I start twelve cycles of Paxil tomorrow.  

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Just keep the water flowing those starting today, it’s important to keep hydrated and if you are fec, the red one will turn your wee pink for a bit, don’t panic 😘😘 it’ll sound mad but that’s the first one off for you 👭👭you’ll settle into bit of a routine after first one out the way. Keep eye on temps and if you wee burns but no temp ring your units, it’ll be a uti and will need antibiotics, you can’t just relay on self medication during chemo ❤️❤️Keep safe 💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

Hi Ruby 

 

Thank you, I’m just on way to hospital now. How did you find it? Any major side effects you experienced? 

 

Just been to GP with my son who’s got tonsillitis and he’s said it’s best he isn’t around me so I’m currently feeling very sorry for myself as he’s gone to my mums for 5 days. 

Member

Re: June 2019 chemo starters

Hi Marie - hope all goes well today, I did FEC T in 2011 so if I can help within anything at all please do shout 😊 Ruby xx

Member

Re: June 2019 chemo starters

Hi, I start FEC-T chemo today. Opting to try the cold cap. I’ll have 6 cycles in total and then have surgery. 

Good luck for today Nicola x 

 

Marie x 

Member

Re: June 2019 chemo starters

All the best Nicola xxx 😘

Member

Re: June 2019 chemo starters


Best of luck for today Nic, it’s rarely as bad as you expect it to be and we are all here for each other xx
@nicolaJ wrote:

Good morning ladies,

hope you are all as well as you can be.

today I start the next stage of the journey, had two ops and now starting chemo today, feeling very anxious and not quite sure what to expect, going to try the cold cap and see how it goes. The way I see it is the sooner we start the sooner we finish!!

hope you all have a good day 

Nic xxxx


 

Member

Re: June 2019 chemo starters

Good morning ladies,

hope you are all as well as you can be.

today I start the next stage of the journey, had two ops and now starting chemo today, feeling very anxious and not quite sure what to expect, going to try the cold cap and see how it goes. The way I see it is the sooner we start the sooner we finish!!

hope you all have a good day 

Nic xxxx

Member

Re: June 2019 chemo starters

Morning ladies,

 

how are you all today?

 

my head feels like it is sunburnt/sore and I have had some thinning, but it’s not coming out in clumps yet like it did the first time. I have a hairdressers appointment tomorrow and I literally have no idea whether to go as I may not lose much hair or cancel as it might have all fallen out by next week! 

 

My Anadin extra seems to be working in my one woman war against Filgrastim. Might be worth remembering if any of you have any nasty side effects from your jabs, just make sure you check with your chemo teams as red blood cells need to be good if you take anything with aspirin in it apparently. 

 

May your hair loss be minimal and your side effects even less.

Ruby xxx

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Definitely get the fluconazole and make sure you get it every cycle and take it every time.. It stopped mine getting as bad as the first time. 

I've been reading some of you are getting to the tingly head and hair loss stage,  be brave girls...its a tough one but remember it's one step further down the line to a new head of hair.. Take care

Kip 

Member

Re: June 2019 chemo starters

Will do xx


@Shi wrote:

Alvilago, you’ve not got trust mouth starting have you? Please give your unit a quick call in the morning to see what they think. If it is please get fluconzole from them and not fobbed off with drops. Better to check with unit to keep safe ❤️Hope this helps 💕💕✨✨Shi xx


 

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Thrush mouth 🙄text gremlins out and about tonight 💕💕✨✨Shi xx

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Alvilago, you’ve not got trust mouth starting have you? Please give your unit a quick call in the morning to see what they think. If it is please get fluconzole from them and not fobbed off with drops. Better to check with unit to keep safe ❤️Hope this helps 💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

Evening all, hope you’ve had a good day. 

My scalps just started hurting like I’ve had my hair ripped out. Taken some paracetamol as so sore. It’s defiantly starting. I’ve never seen myself bald lol don’t know if to laugh or cry 🤣😥xxx

Member

Re: June 2019 chemo starters

Sorry you are in pain minimad, it’s the worst thing pain, although losing your hair isn’t great either!

 

i am fourth dose double whammy Friday too, such fun! 

 

It is is hard to know what to do sometimes, I despair of medical teams who can’t agree at times, so very frustrating!

 

Ruby xx

Member

Re: June 2019 chemo starters

Sorry, cannot help re sore mouth advice. 

 

Mini mad... Glad you mentioned it.. Yiu know how I said I had hair coming out more than usual and had some tears... Well yesterday in shower I had pubes coming out, now been to loo and knickers had pubes in. 

:0

Deffo in hair loss stage, cycle two on Thursday so two days off from that. 

Still gonna do cold cap, hopefully it means hair will just thin rather than fall out in clumps. 

Member

Re: June 2019 chemo starters

Two weeks since first chemo and hair coming out, not lots but more than normal, exhausted today but it is 28 degrees down here in Kent xx


@mini mad wrote:

Its real hard to know what to do when given conflicting advise...fingers crossed you can manage the injection with the new meds xx

ive had real bad bone pain in right shoulder and upper arm yesterday.  Taking paracetamol and seems bit easier today.  Ive got my picc line going in on thursday,  just hoping i can put my right arm in the correct position by then..

also seeing chemo dr tomorrow for review then 4th double dose whammy on friday..

how is everyone else doing today.???

oh and my hair is shedding more now n think i lost a few pubes in the shower last night 😳😳😳🤪

 


 

Member

Re: June 2019 chemo starters

Hi I’m beginning to think the sore mouth throat swollen lips is gonna be part of this now. Any suggestions other than mouthwash and lollies xxx

Member

Re: June 2019 chemo starters

I have a bit of temperature but less than 37 and feel my upper throat a bit swollen but not painful.I had some paracetamol  this morning andt help with the inflammation feeling.I eat and drink well but I thought was best not to commute to work today.

Called the chemo line to check about some uncomfy feeling around my PICC line but since it is not swollen or irritated they told me just to keep an eye since I have the dressing chsnged tomorrow.

How's everyone else's day going?

Big hugs

 

 

Member

Re: June 2019 chemo starters

Its real hard to know what to do when given conflicting advise...fingers crossed you can manage the injection with the new meds xx

ive had real bad bone pain in right shoulder and upper arm yesterday.  Taking paracetamol and seems bit easier today.  Ive got my picc line going in on thursday,  just hoping i can put my right arm in the correct position by then..

also seeing chemo dr tomorrow for review then 4th double dose whammy on friday..

how is everyone else doing today.???

oh and my hair is shedding more now n think i lost a few pubes in the shower last night 😳😳😳🤪

 

Member

Re: June 2019 chemo starters

Morning ladies,

 

i am am really struggling again with these blinking Filgrastim injections, chemo suite rang back and told me to go to the chemist and get migraleve to try -  migraleve was apparently withdrawn a couple of years ago! Pharmacist recommended an aspirin based product, rang oncology to check if I could take it, haematologist said no, oncologist said yes! I took it and it helps a little (I am able to semi function) but they want me to carry on with the injections. I have done the third one but I am dreading the next ones. I am hoping my somewhat robotic oncologist is actually human when I see him on Thursday!

 

how is everyone else doing? 

 

Ruby xx