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May 2020 Chemo Starters

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Re: May 2020 Chemo Starters

Hi Adriana 

Welcome 🤗

That sounds really difficult! I'm so glad you've found the forum! It's been a big help, especially starting the journey pre chemo. There are so many threads offering all kinds of support and info.

I'm sorry you have to have more surgery..especially after finishing a course of chemo. That feels like it might be like being asked to run another marathon just after finishing one! 

Sending hugs and encouragement to explore and use this space to get the support you need.

 

Fiona xx

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Re: May 2020 Chemo Starters

Hi Adriana,

Welcome to the forum. So very sorry to hear the cancer journey you have been on already. Sounds like you have been very brave to have got through all that treatment. Once the surgery is over you will have completed a massive amount of your treatment. I had a single mastectomy and I am halfway through my chemo.

All of us on here are fighting our personal battles but we are all here to support each other. It must be difficult having young children and trying to cope with your treatment.

Sending positive thoughts and wishing you all the best with your surgery. You are doing amazing ❤

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Re: May 2020 Chemo Starters

Hi everyone, quick reminder please put personal email information into a private message, the forum is open to the world to read, please Keep safe with personal information you share. 💕💕Shi xx

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Re: May 2020 Chemo Starters

Hi Sarah

 

Good afternoon and I hope you are well. My name is Adriana, 45 years old with two children (10 and 7 years old) and I have been diagnosed with Bilateral breast cancer. First they found out only left side September 2019. I underwent two lumpectomy to get clear margins and full axillary node clearance. Unfortunately just one week before I started my chemotherapy, December 2019 I found out myself another lump which was confirmed cancer. I started the. Chemotherapy in January and I just finished . Waiting now for double mastectomy 

I hope you are well.

kind regards 

Adriana

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Re: May 2020 Chemo Starters

Hi girls 

Hope everyone is getting on okay. I’m getting a Hickman line in soon cos my veins aren’t happy and skin reacts 7 ish days post chemo. Think it’s similar to the PICC line but comes out near your collarbone instead of your arm? Don’t know why the difference! 

Daphne - YES!! A week or 2 after I have a horrible headache and sore neck, worse on the right side, worse when I wake up, lasts for days. What treatment are you on? I’ve obviously panicked several times it’s brain mets! But it’s not permanent and improves as the day goes on so blaming the treatment. 
xx

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Re: May 2020 Chemo Starters

Hi everyone

I’m the same. “Great veins!” they always say, and yet was told immediately that I was being booked for a PICC line. So anxious on the day, but actually glad to have it as it speeds everything up for treatment and you’re oblivious!  You have to wear a cover for showers, and make sure when the dressing is changed that it’s comfortable. Mine was slightly redirected at the first change last week and it’s not quite sitting the way I prefer which is alongside my body. 
On another note I am suffering stiff neck and headaches, plus migraines (which I get too). They take me out for hours. Am doing daily exercises, but curious to know if anyone else is experiencing the same?

 

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Re: May 2020 Chemo Starters

And I should add that you do have to go in every 7-9 days to have it flushed and the dressing changed so that does add a further dimension. 

s x

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Re: May 2020 Chemo Starters

Hi

I am always told when I need to have bloods etc that I have great veins. I still opted to have a PICC line though as I wanted to keep my veins that way. 
I found the installation was fine, didn’t feel a thing. Watching the machine is fascinating (not the needle, I can’t watch that going in!). I have to admit that on the first night I was ready to ask them to take it back out. I was convinced I was going to pull it out. However, over the next few Days I got used to it and use my arm normally. I wear a cover at night in bed to ensure I don’t catch it. 
I am definitely glad I had it now. Any questions, just ask.

 

sarah x

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Re: May 2020 Chemo Starters

Hi Mumbear

I hard my second cycle yesterday too. 
I found it emotional and my anxiety kicked in last week. I had to take lorazepam to get me there.

felt better once they started . They gave me biscuits tea and sandwiches hooking me up quickly so I didn’t do a runner 🤣.

 

i haven’t had any issues with veins so far. I take a small hot water bottle with me strapped on the arm. It brings my veins up. 

I feel like a pin cushion and after bloods I bruise easily now. 

im sure there are people on here that have Picc. Most of the patients around me have them. 

Hope you have an easier run with this cycle . 

Take Care 

Tricia xxxxx

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Re: May 2020 Chemo Starters

Hi all,

Hope everyone is well. I had my 2nd session and I must say it was so much harder than the 1st 😢 Found it mentally so much harder to cope with and nearly fainting after the Cannula was inserted again 🤦🏼‍♀️
They want me to have a picc line as my veins are rubbish. But I think (on reading) a port would be better as even getting bloods is tricky. That idea though was dismissed very quickly by the nurse and told I had to have a picc.

Do any of you lovely ladies have them? Any advice/guidance would be really helpful. 
Thanks

Louise 

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Re: May 2020 Chemo Starters

Hey everyone, how are we doing?

I've been a little in the doldrums, but I think I'm feeling a bit better now - just in time for cycle 3 next week!

Hope everyone is managing feelings and side effects ok......I thought I might mention "one good thing" this week, which for me would be a little sound clip of my four month old niece who has apparently learned to squeal and likes this new sound VERY much!

Love to all

Fiona.

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Re: May 2020 Chemo Starters

I also got small spots on my chests/shoulders/back x

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Re: May 2020 Chemo Starters

Hi Daffodil63

Me! At about Day 9-10, a small red patch appeared on my cheek then within a day I suddenly had terrible acne-like spots on my forehead, chin and cheeks. I called the chemo line who advised me to contact the GP. She put me on antibiotics. I’m on day 20 of cycle and day 5 of antibiotics; it’s clearing up a little bit now and getting very dry.

they said it could be caused by either the chemo drugs (I’m in TCHP) or the steroids. Steroid-acne is a thing apparently. The skin issue has got to me more than the thought of being bald.

 

Sarah x

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Re: May 2020 Chemo Starters

My skin was pretty rough the first cycle, this time around I’ve moisturised a few times a day since treatment and fingers crossed it’s a little better. My back was really spotty from cycle 1 but has faded. I don’t think it’s an uncommon effect I’m afraid, but mine improved a lot by next cycle so hopefully yours will soon. Keep moisturising!

Can recommend MooGoo products, a lot have been designed for chemo/radiation xx

 

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Re: May 2020 Chemo Starters

Hi Daffodil

We had our chemo a day apart ! Yes I found my skin got oily around my nose and spots have appeared on my face. My neck felt stingy too. Hands itchy and little blisters appear . 

it’s coming at the same time as my hair becoming sensitive . If it’s troublesome I would speak to your team. 

Even covering up and factor 50 my skin has become incredibly sensitive. 

Take Care XXXXX

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Re: May 2020 Chemo Starters

Hi,

ive not had any on my face, but had a couple of spots, almost like bites on my ribs and one on both arms underneath! They aren’t bothering me though so have just left them alone. My 1st session was on 22nd May. Feeling relatively normal now so hope this remains until my next session on 12th June. Hope everyone is doing OK. Xx

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Re: May 2020 Chemo Starters

Hi has any one experienced spots and blemishes on there face please and neck since having chemo 

I had my first chemo may 21st and have come out in spots and skin gone really dry .

just wondered if anyone had experienced this and if so what did you use to maybe help it xx 

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Re: May 2020 Chemo Starters

Hi norflondon

So it is a thing then . 

We have a living room that’s cool with the blinds down. I can see myself living in it . I was cold last night and opening and closing windows . I may invest in a fan.

love your ideas Fiona . I’ll give them ago and report back . 

I can see myself sitting in the air conditioned car all summer 🤣

Take Care ❤️❤️❤️

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Re: May 2020 Chemo Starters

Ruby Rose I feel exactly the same. I find my temperature regulation just isn’t functioning properly. I have to keep all the curtains and blinds shut as my bedroom and back yard are west facing. At night I’m up and down opening and shutting windows. 

And in the morning I’m cold for a while. 

I am praying for a cloudy day and we badly need rain. 

XxC. 

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Re: May 2020 Chemo Starters

The mouth pain is the worst for me just now....the nystatin does help, so I hope you are soon feeling better Lisa. My throat is still really sore, but lozenges and alternating hot and cold drinks is making it manageable. 

Re heat.......wow, no bright ideas I'm afraid. The obvious to drink, drink and drink. A spritz bottle of water in the fridge to spray on your face? A bowl of ice cubes in front of the fan to make sure the air is cool and maybe a bit moist? First aid ice packs applied to pulse points? If you don't have them, we use empty plastic bottles filled with water - great for rolling your feet over. Also good for plantar fasciitis. Cold wash cloth in the fridge - apply to forehead, then rewet and recool?  Loose, natural fibres and try not to get agitated about the heat, like I do which then makes it worse! Cool showers - who cares if you have to have more than one a day?

Hope there is something there that helps!

Take care everyone. On a bit of a downer myself so just keeping a bit schtum, but thinking of you all. 

Xxx

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Re: May 2020 Chemo Starters

Hi Ladies,

 

Has anyone had issues with the heat?

I can’t take the heat. Sat indoors with a fan and it’s not even that hot! It’s that mild sunstroke feeling . Haven’t gone outside today . 


Any tips would be great . Hate to think how I will feel when temperatures reach 30! 

Take Care 

Tricia ❤️

Maisy Moo hope your mouth is feeling better today . ❤️

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Re: May 2020 Chemo Starters

Had to use the bat phone for a mouth infection. GP issued the prescription for Nystatin and sent it electronically through to my local chemist. They brought it out to the car for me. So all sorted hopefully.

Good luck everyone. Stay safe ❤

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Re: May 2020 Chemo Starters

Na na Nar na na na Nar na don’t be afraid to use the bat phone 👍🤣😂🤣😂😂keep safe everyone 💕💕Shi xx

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Re: May 2020 Chemo Starters

I’ve been lucky so far. Called the oncology line and they have spent a lot of time on the phone trying to work out the problems. First do you have a cough or temperature. My temperature has gone up a bit but not to what they would call a temperature. I’m usually 36 but on occasions it’s gone up to 37.4. 

Feeling unwell is a difficult one . Cos I do feel unwell . 🤣. But I know what they mean. We go from top to my poor bottom and talk about symptoms. I feel my G.P. Is getting use to me calling but they won’t bring you in. They have improved no end on communication skills . 

I feel guilty calling all the time .( OK twice in a week). Hospital really don’t want you in so to protect you . Under normal circumstances I think I’d be using the Batmobile 😂

I have noticed everyone is working as one big team and I don’t feel forgotten . 

So I get the message is, keep calling if you need to. I find it hard but I usually feel better afterwards ❤️

Love to you all ❤️❤️❤️

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Re: May 2020 Chemo Starters

😁 it was the bat phone fidget, I rang and checked everything out with them during chemo, always best to ask and check it out with your team, they have seen it all before and know what to do 👍 it’s not being dramatic or a pest it’s being vigilant and helping them get you through safely 👍💕💕Shi xx

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Re: May 2020 Chemo Starters

Holy sh!t although I'm LOVING you calling it the bat phone!! I might borrow that one!

Thanks hon x

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Re: May 2020 Chemo Starters

Hi fidget 👍 you can have infection and no temp too, I had burning wee and no temp and it was uti caused by the chemo and needed antibiotics not just a bit of cranberry juice and resulted in 6 day casa nhs stay on my first chemo back in 2017. So after that I was on the bat phone to team about anyo wasn’t sure of during chemo, getting through chemo safely is what matters ❤️💕💕Shi xx

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Re: May 2020 Chemo Starters

I will call them tomorrow. I do put off phoning the treatment helpline, because every time I do, the hospital say to send me over and it's never anything serious but I totally get that I shouldn't rely on that.

Girl Guides promise - I'll call them in the morning. I check my temp regularly and it's never above 36.5 and usually a lot lower than that.

I will be sensible and keep safe.

Thank you 💙

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Re: May 2020 Chemo Starters

Hi fidget, please ring your unit and check about your throat, you might need antibiotics. Main thing is to keep safe during chemo and your team won’t mind they want you safely through too, just because you had it last time doesn’t mean it’s the same thing causing it this time ❤️Just please keep safe 💕💕Shi xx

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Re: May 2020 Chemo Starters

Isn't it weird how we're all the same, but different? 

I think my hair (stubble as it is) is actually growing again! But probably not. 

Right now I have a RAGING sore throat 😢😢 had it last time and the Nystatin eventually helped, but bu**er me.......so I'll join Tricia in feeling sorry for myself just now!

It is good to offload here......thank you pink warriors! Keep fighting 🥊

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Re: May 2020 Chemo Starters

Hi Ladies

So good to read I'm not alone, I'm on day 16 and my hair started falling out yesterday after a few days of having a prickly head.  The silk pillowcase sounds like a good Idea I must have a try. 

I saw a link someone posted about cancerhaircare.co.uk and I contacted them and they were very helpful and their website has lots of links to short videos about hair/head covering options, make up and eyebrows.  The also will send you a free cap and goodie bag.

I am suffering a lot with really cold feet and having to sleep with fleecy socks on.  I was given the advice today to try using a foot spa to stimulate the ciculation so going to give that a try to see if it works.

Stay strong everyone, we can all do this!

Sending lot of hugs to all

Ragusa

 

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Re: May 2020 Chemo Starters

Bless you all, yep this is a hard journey with different mountains to climb

Love and hugs to everyone ❤

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Re: May 2020 Chemo Starters

I’ve been put on antibiotics and steroid Cream this afternoon . 

They think it could be fungal rash and secondary infection . As the tablets haven’t worked they are going all out attack . Something must work . 

Drying myself with a hairdryer will be a new experience for me . 😊

 

All these new experiences just keep on coming .😊

 

The world is gradually opening up and I will be hearing my lovely neighbours enjoying time in the garden with relatives . We will just sit and wish it was us. Feeling sorry for myself so I’ll go now and stuff my face with the only thing that tastes . CHOCOLATE 🍫 

Take Care X

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Re: May 2020 Chemo Starters

I called the chemo line at the weekend and they told me to call the doctor x doc put me on antibiotics. I’m in for bloods tomorrow so I am going to raise it with the nurses there again x 

 

thank you c

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Re: May 2020 Chemo Starters

It’s worth ringing your teams about the spots, they might be able to give you some cream? Anyway best to check all ok ❤️💕💕Shi xx

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Re: May 2020 Chemo Starters

I have had little blood blisters appear around my nose and my skin around there is very oily . Funny as that is the area I would get spots before menopause. I also ended up with a rhino nose two days ago . It’s still very oily . I also woke up with a burning hand . My palm was hot to the touch . I

get eczema on my hands and feet at stressful times. Put some cortisone cream on and it calmed down . 

As a precaution I’m taking antihistamines and anti fungal meditation for the rash on my chest . 

I also bought a pack of two silk pillowcases from amazon . 

Glad to hear everyone is coping the best way they can . 

Tricis X

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Re: May 2020 Chemo Starters

I got horrible pimples on my neck! Blooming sore they were, too!!! Not loads and loads of them, but a few. Savlon actually helped them go down? But nothing on my face. And I totally get why that is more upsetting - it's like added insult isn't it?

 

My hair started coming out on day 18.....even now it hasn't all come out.....my head looks a little like a world map with "continents" of stubble and "oceans" of bare patches 😂😂😂😂

I'm so sorry about the acne though, that truly is pants. Could your toiletries be exacerbating it? 

Sorry I can't suggest anything more helpful....

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Re: May 2020 Chemo Starters

Lovely to read through all these posts. We are bloomin’ warriors.

 

can I ask if anyone has had any drastic skin changes? I have the most dreadful acne on my face, plus a little on shoulders, chest and back. They think it could be caused by the steroids. GP has put me on antibiotics but they don’t seem to be touching it at all. I’m more upset about my skin than I am my hair (although that is not yet falling out at Day15 post cycle 1 of TCHP).

 

sarah xx

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Re: May 2020 Chemo Starters

Hi yes got my silk pillow case from ebay and I also got a memory foam pillow. They have both made a real difference xx

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Re: May 2020 Chemo Starters

Hi - I ordered mine from amazon. I just put silk pillowcase in the search function and bought a reasonably priced set. They do make a difference!

Hope that helps 😊

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Re: May 2020 Chemo Starters

Hi , have been reading on here about silk pillowcases please could anyone suggest or recommend where you got them from please xx

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Re: May 2020 Chemo Starters

Morning Everyone,

I can relate to some of what everyone is saying on here. I had my second chemo on Monday and I have touch wood been better than I was on my first cycle regarding the sickness. I only felt whoosy on the first day and have been fine since. When I was having my chemo this time the nurse said the key was to feed it in slower so she set the timer on the machine for longer and it seems to have worked. She also says to take my anti sickness for the five days at home even if I don't feel sick so I am.. The steroids have affected me more this time so sleep is interrupted but I finished those yesterday so hopefully that will improve.

Regarding hair mine fell out the end of last week and I too was hacking away at it with scissors as no clippers and the remaining comes away each time when I shower so virtually bald now anyway. At least it is cool in the hot weather 😁.

Good luck ladies and great to have you all ❤

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Re: May 2020 Chemo Starters

Hope you pick up this week Fiona. 

Best to be safe than sorry . I swear the steroids mask so many side effects but once they are stopped, you feel bad. 

Just having a shower wears me out . Talking to people is a real effort. I’ve just started to feel sick again so took anti sickness again . Not sure if it’s because I’m not eating as regular or it’s the medications I’m taking . Temperature is ok. 

I bought a pair of silk pillowcases ready for the painful head. I may start using them now. 

Take Care and hope you are out walking soon Fiona X 

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Re: May 2020 Chemo Starters

Hi everyone! Tricia that rash does sound painful....so sorry! The nurses are very good at loading us up appropriately to deal with these things, aren't they?

I was doing much better on day 1 and 2 of the cycle and then got more and more and more tired (which somehow took me by surprise!!??) Felt really quite sick on Tuesday morning and then despite feeling better for a brief period on Tuesday evening, ended up in hospital overnight! I think it was an overreaction on the part of the hospital, but better safe than sorry!

So I've been a bit distracted to say the least. However, feeling a wee bit brighter now so fingers crossed this is me starting to move past the worst of it.

The sore head thing is the worst.....did you get a silk pillowcase? Even now (with my baldy heid) I find it really comfortable. 

 

Much love to you both Trish/Tricia

and to everyone. Take good care of yourselves. 

Fiona.

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Re: May 2020 Chemo Starters

Morning Trish,

ouch about the hair . 

I am already getting sensitive hair so can image how painful it is. Hopefully you will feel better after shaving . Just remember to put the safety comb bit on. Take it gently. When my clippers came the instructions were in Chinese so I had to you tube how to clip 😊

Lots of love and big hugs 🤗❤️

Tricia X 

P.S. Ruby thinks food is more important than my smell now 😊. However she doesn’t bounce on me like she use to . Almost as if she has grown up overnight . I hope when this is over , she goes back to being a pain in the neck .🤣

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Re: May 2020 Chemo Starters

Morning all!

Sorry to hear about the rash, Tricia - I hope the home pharmacy is dealing with it well. I saw your earlier comments about your dog, too. My cat has also been uncharacteristically keeping her distance and, when she does come close, sniffing my hand a lot. If it is possible for a cat to have a confused expression, I'd say that she does. 

Yesterday, at day 14 of cycle 1, my hair started coming out so I decided the time had come to cut it off. I would have done this much earlier, but I don't have anyone to help me cut it and I'm scared of clippers. Anyway, needs must and I thought I'd cut it shorter with scissors first. I set to in a frenzy of random chopping with an enormous pair of kitchen scissors. I was amazed at the artfully choppy pixie cut that emerged and decided to stay with that for a couple of days before having to get to grips with the clipper machine.  But then I was woken in the night with, would you believe, PAINFUL HAIR!! Yes, those poor little follicles are so sensitive now that I just couldn't get comfortable on the pillow. Also when I got up, what had seemed like a stylishly untidy crop now looks exactly like, well, something self-administered by an amateur on lockdown with kitchen scissors. So after breakfast I will need to start squinting at the clipper instruction booklet.

Love to you all

Trish xx

 

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Re: May 2020 Chemo Starters

Hope you are all well ( as can be expected )

 

Its my fifth day since first chemo. Monday I started to get a burning rash on my tummy and under the breast. Very painful . Felt like bee stings. Then on my face . I was suffering pain through the injections. So bad I could not sleep. 

Spoke to my team and now have a rather large home pharmacy going on. It’s as soon as the steroids stop , the horrible side effects turn up. 

Difflam for the sore mouth and throat is a must . I can see how easy to dismiss it but you really do need to get the help before it becomes a bigger problem . 

Im very tired but hoping that I will pick up by the weekend . I’m a bit paranoid about washing fruit and veg . I think my husband is sick of hearing me shout “ Have you washed your hands?” . 

Hope you are all doing ok . 

Love Tricia 

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Re: May 2020 Chemo Starters

That’s good news Maisy . ❤️

Now steroids finished ( last night ), I feel so drained . Hopefully I’ll get some decent sleep tonight . 

Injections giving me on and off aches and pains . I guess that’s the flu like symptoms. ( never had flu )

 

My eyes ache and water. 

Hope you all are having a pleasant weekend ❤️

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Re: May 2020 Chemo Starters

Hi Tricia,

I found the sickness wore off within the first week and I haven't had it for 2 weeks now. I am due my second chemo tomorrow.

I too didn't suffer with constipation, quite the opposite, having to rush to get to the toilet and it is still like that on and off now.

Let's see what the next cycle holds,  all the best everyone ❤

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Re: May 2020 Chemo Starters

Good morning everyone,


I have finished my steroids now and just taking the anti sickness ( Ondansetron) . One of the nurses told me to only take it three days and not 5 as prescribed as it causes constipation. I haven’t had any constipation but my bowels are fighting . One minute it’s like quick get to the toilet then suddenly disappears 🤷‍♀️

I seem to be going normally but boy the smell and it burns. Blooming toxic .🤣

I have been given another anti sickness Med which the nurse suggested I moved onto after the three days. My question is ..

How long does nausea last after the treatment ? Does it go after a few days or last the whole time? I don’t want to mess around with tablets and find myself being sick . I’d rather prevent it. I’m thinking of finishing the five days on these tablets then moving onto the others. 

Tricia X