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May chemo starters 2018

Janie L
Member

Re: May chemo starters 2018

Thanks everyone for your advice. Sorry I haven’t been following for a few days. Things got much worse so I ended up spending Bank Holiday Monday at the hospital having tests. Much better now though and yes I will make sure I say how sick I was when I see the oncologist before cycle 2. Hugs xxx
Linda Corinne
Member

Re: May chemo starters 2018

Hi,

I got my thermometer from supercritical and it's fine.

I also have a white lump in my mouth which hurts. I am using mouth wash from the hospital and have just put some thing for ulcers on it I had which has helped the pain. I think I need some bonnets tomorrow. I have been gargling with warm salt water. I think I knocked my gum with all the brushing I do after every meal. I have a number to call 24 7 so can get advice if needed.

L

Tracey Mac
Member

Re: May chemo starters 2018

Hi Melsy,

Regarding the wig, I think this depends where you live. I had a voucher worth £100 towards mine from the hospital and paid the difference on the wig i chose
mustardandgrey
Member

Re: May chemo starters 2018

Hi, Melsy!

 

 I bought the Braun Thermoscan 7.

Pricey, at around £37 on Amazon, but worth it in the long term.

It was recommended to me by quite a few people as being reliable, easy to read/use and used in hospitals.

I found it really easy to set up and it gives peace of mind.

 

Sarah x

 

 

OllieRev
Member

Re: May chemo starters 2018

Thank you x
melsy68
Member

Re: May chemo starters 2018

Hi everyone, had my pre-assement on Wednesday (chemo this Monday) and enquired about cold capping, but my hospital doesn't offer it so I'm off to the wig shop tomorrow! I suppose it helped me make the decision whether to or not!!

 

Am  I right in thinking we have to pay the first £64 towards the wig of our choice?

 

I put in the request of Emend anti-sickness, they said I could have it so keeping fingers crossed on that (thanks for the recommendation)

 

Also they mentioned buying a thermometer...can anyone recommend a trustworthy brand/model please? 

 

Hope those that have started are feeling better by the day, Lets keep strong and positive  xxx

Tracey Mac
Member

Re: May chemo starters 2018

Welcome @Ollie_BCC , sounds like you have been through so much already, you know you can do this, one day at a time. We are all here for each other.

@Spange I went into work for 5 hours today for a catch up and hate not being in the loop of the day to day things I have missed. I thoroughly enjoyed it and felt deflated coming home to the reality of treatment next week but I, like you need to embrace this and we will get through it one day at a time x
Shocked
Member

Re: May chemo starters 2018

H just to echo Shi’s Advice don’t take any chances and keep a close eye on your temp don’t want to scare you but I ended up one round with a mouth infection and was sent straight to A&E - can you speak to a chemo nurse today before the weekend - they should also be able to get you a prescription for what you need it’s best to be armed and ready. Take care lovely xx

OllieRev
Member

Re: May chemo starters 2018

Hi everyone 😊 I’m having my first chemotherapy session on 18th. I’m 46 and had a double mastectomy on 10th April. I’m triple-negative and BRAC1 - I had breast cancer 10 years ago, and feeling very anxious about facing chemotherapy again. I don’t feel as invincible as I did then - was on the neo-tango trial and had 8 cycles. This time I’ll be on paclitaxel & carboplatin, every Friday for 12 weeks. I’m really squeamish, feel faint at the thought of anything related to veins, blood, needles etc so am psyching myself up for a portacath insertion on Monday. I just phoned the hospital and ended up in tears talking to the radiograoher about how anxious I am. Feel better now of course after her reassurance.

I‘m thinking of everyone who’s about to start or has already started their treatment. Thank you Shi for your post on 3 May, and Mai7 for your Life After Lola - I can’t tell you how helpful that has all been and I’ve made a shopping list 😊. I loved your quotes too - am going to print those out. Take care xx 💃

Spange
Member

Re: May chemo starters 2018

@Tracey - first cycle starts 15th and 16th, so I’ll be a day ahead of you. Getting bit anxious but know I need to learn to take one day at a time and that it’s temporary...am a bit of a control freak, so have a few life lessons to learn lol. Trying to do some WFH today, but not focussing terribly well - mind is tired and I keep getting distracted. 

Tracey Mac
Member

Re: May chemo starters 2018

Hope you ladies who have started treatment are feeling better this morning and if not.......seek advice.

I had my Muga heart scan yesterday In preparation for my first chemo on the 17th

@Spange when do you start yours next week?
Spange
Member

Re: May chemo starters 2018

Morning ladies. Just catching up on the threads (been off for a couple of days to do SNB and dentist and other prep bits). Wishing you all a good day today, and H and mustard&grey, sending you warm and gentle hugs. Sounds like yesterday was a toughie for you both. Hoping that today is better. And H, if you’re still feeling awfulthis morn. I echo the others and suggest you call your chemo nurses. There will hopefully be something they can give that will help xx

 

And keep in mind that this is just how it is in this moment, and that it will pass, and that you will better. You got this. Remember that you are amazing, and that this is temporary....sending love xx

Shi
Community Champion
Community Champion

Re: May chemo starters 2018

h please don’t take any chances my darling, days 7-14 after chemo is when you are nadir and you immune system is at its very lowest and infection risk higher, you can’t think of anything like before because you’ve no immune system to fight anything off, phone 999 and keep safe, chemo is all about keeping safe and getting through it my lovely ladies and you will get through it, just do it as safely as possible ❤️❤️❤️💕💕Shi xx
Tracey Mac
Member

Re: May chemo starters 2018

H - so sorry to hear you are suffering with mouth ulcers/lumps. It is advisable to avoid mouthwash with alcohol and you have said you are diluting it. Also maybe avoid spicy food, citrus fruits.
Have you tried rinsing with salt or baking soda? Using a baby toothbrush as it is softer?
Just some things I have read that may be helpful. Hipento feels better soon,
Tracey.
H.
Member

Re: May chemo starters 2018

Thank you Annie j,  and  shocked for your advise,  I will ask for prescription mouth wash and ulcer treatment  do you think the hospital will prescribe or should I go through the GP surgery, so far they have been less than helpful. Lumps do not feel as enormous this evening  just very sore.  I did wonder if the corsydol was a little too much; it does tend to tingle the tongue, toothpaste seems OK, may water down  mouth wash for the time being as bought a large bottle in anticipation, and usual mouth wash has alcohol in  it sow would probable sting like hell.

 

Shi thank you for advise we do not have rapid response here,  999  111  long trip to A and E  or nothing,  have taken note of medication you recommend Thank you. 

Linda Corinne
Member

Re: May chemo starters 2018

Thanks. You can take the anti nausea that you take in the evening on the first night as that is what I will do early evening next time. Also you can take the tablets that you take as and when needed on day 1 too. I took the tablet they told me to take last thing as advised but felt sick so they said take it sooner next tie. I think it causes constipation so they said take last thing but could be talking rubbish.
Linda Corinne
Member

Re: May chemo starters 2018

Thanks for your reply. Went to work today and apart from a sore mouth I was fine. Yes I def need radiotherapy.
Shi
Community Champion
Community Champion

Re: May chemo starters 2018

h havevyou rang rapid response to check it’s not thrush mouth? If it it get fluconzole tablets keep safe 😘😘😘💕💕Shi xx
Shocked
Member

Re: May chemo starters 2018

Hi again H 

 

I have had horrendous mouth issues throughout - corsodyl was too harsh for me in the end  If that happens to you so ask your GP for some Difflam and if it gets really sore Gelclair (so good for a sore mouth) every cycle has produced blisters and ulcers all over my mouth it’s been the worst side effect for me.  Take care xx

Anniej
Community Champion

Re: May chemo starters 2018

Hi H, totally remember gsf injections. Best advice my district nurse gave me was to walk! Injection at lunchtime, soup, then walkies! I felt like a puppy on a training exercise, but....it so helped! I found a teaspoon of Manukah honey 15+ prevented ulcers and thrush. I was very fortunate and had neither. My hygienist recommended a non foaming toothpaste ( Holland & Barratt) baby toothbrushes , renewing toothbrushes every cycle,and the honey. Excellent advice for me. Be careful re mouthwash as some are too much with the chemo. I took the one provided by the hospital. I was on FEC- t this time last year. Still taking the honey, and still using the toothpastes! X

H.
Member

Re: May chemo starters 2018

Thank you shocked for your advise will invest in some anti histamines, I will try anything that may improve this terrible leg and jaw pain, the injections are evil. 

Just woken with large lumps on my tongue, posted to ask nurses advise but I think if you have experienced the problem you may have some good advise. Using Corsydol tooth paste and mouth wash as advised by dentist,  no temperature thankfully, -  only started FEC-T on 2 nd May

Jk71
Member

Re: May chemo starters 2018

So my first session went well, not as bad as I expected it to be. Thanks @tracymac. The nausea has now hit me but I’ve been given meds so hope they begin working soon. @mustardandgrey hope you’re feeling better soon. @lindacorinne I had the diep reconstruction and was told that radiotherapy will shrink my breast a little so my surgeon made mine a bit bigger on purpose xx
Mai7
Community Champion

Re: May chemo starters 2018

Mustardandgrey, sorry to see you've been sick and tired.  Can you call your oncology dept and let them know? It's important that you have effective anti sickness meds for your general wellbeing.  I've been told Emend is the best anti sickness but it's more expensive so your have to ask for it.  Have you tried sipping some herbal tea, peppermint or camomile? I added slices of fresh lemon to my water when I struggled with the taste of plain water and sometimes warm drinks are easier in the tummy than cold.  Try and find a way to keep your fluids up.  Here's my blog again which has some chemo tips in case there is anything useful on there for you:  http://lifeafterlola.blogspot.co.uk

You are doing really well. Just rest when you need to but definitely don't tolerate being sick. Give your oncology dept a call.   Sending hugs. Xx

melsy68
Member

Re: May chemo starters 2018

Hi Linda, glad you're feeling better a week down the line, let's hope next week is even better 😁

 

I cant say for sure but I was under the impression (told at my DIEP reconstruction meeting) that radiation on a DIEP is absolutely fine providing no implants used. But radiation can distort and shrink implants , so any reconstructions using implants  would not be recommended if it is likely that you'll need radiation Afterwards. Hope this helps x

Tracey Mac
Member

Re: May chemo starters 2018

Thanks for the update Sarah.

Glad you haven't vomited although nausea is such an unpleasant feeling. The fatigue is one of those things previous threads have advised to take each day and be kind to yourself, if you need to sleep then sleep. Glad you are listening to what your body needs.

Hope tomorrow is a better day for you 😊
Linda Corinne
Member

Re: May chemo starters 2018

Hi,

Just read your story which made me laugh a lot. How true it is. Did you have a reconstruction and if so when?

Linda Corinne
Member

Re: May chemo starters 2018

Thanks. Yes I feel better now a week has passed. Just not hungry and sore mouth. I have some mouthwash which has antiseptic and toothpaste for dry mouths. I have finished the injections today and they didn't seem to have any effect to be honest. Just not sleeping very well either as the op is my main concern. Does anyone know the effect of radiotherapy on a DIEP or similar reconstruction? 

mustardandgrey
Member

Re: May chemo starters 2018

@Melsy68 @TraceyMac - constant nausea was my worse fear really.  

 

The hospital gave me two days of Ondansetron - now finished - and Domperidone to take as and when required, up to three times a day.

 

I haven't thrown up since the first evening, and yesterday, aside from the on and off wooziness and slight nausea feeling, was okay.

The self injecting wasn't as bad as I feared.

 

But today, the fatigue just hit me like a truck, I seem to have slept on and off for most of the day.

My appetite isn't great and I've completely gone off tea, coffee and pineapple juice, so struggling to drink enough, even though I'm thirsty.

 

Sarah x

 

 

 

Shocked
Member

Re: May chemo starters 2018

Hi H. I’m from the January thread if you are struggling with the effects of the jabs may be worth trying some antihistamine tablets (weird I know) they seem to do the trick for me and lots of other ladies also timing seems to help I do mine at 8pm.
Tracey Mac
Member

Re: May chemo starters 2018

Hope you are feeling good today Sarah. How is the nausea?

JK71 good luck with this afternoon's session

H - sorry to hear you are having a rough time with side effects. Those of us yet to start our first session are grateful for your shared experiences as it gives us some idea of how we may possibly feel. Hope you start to feel better soon.
H.
Member

Re: May chemo starters 2018

Hello all,

Thank you for good wishes. 1st session OK but very hot and sweaty then so tired.  Slept much last seven days, head itches trying to resist as do not want to help hair shedding, have appointment with wig people tomorrow,  Worst side effects other than nausea and a feeling of imminent diarrhoea which thank fully did not occur and facial flushing so you feel as if your skin is burning, is from the injections to help boost growth of white cells; legs and jaw so so painful I have not know what to do for the best, did not take injection yesterday in hope legs will be manageable for wig appointment probably not supposed to skip a day but cannot see me getting to appointment and consultation which they say will be betwix 1 -1 1/2 hours, certainly could not have gone previous days.  Will be glad when injections finish as I think / hope I will feel more like H.

Jk71
Member

Re: May chemo starters 2018

@mustardandgrey my session got postponed, I’m having my first this afternoon now. I was feeling very apprehensive when I got up this morning but after reading how you’ve got on I don’t feel as bad. @shi thanks for all the great tips. I will post again when I’m feeling up to it. Welcome all the new ladies xx
melsy68
Member

Re: May chemo starters 2018

@mustardandgrey 

i have to say despite the sickness you seem to be coping extremely well...well done you and long may it continue! 

im off for my pre-chemo assessment tomorrow, going on my own, hopefully it won't be too daunting! I've got a list of questions! 

 

 My first FEC starts on Monday.  Out of interest Sarah which anti sickness have they given you?... 

 

take care everyone, we CAN do this

 

melissa xxx

Tracey Mac
Member

Re: May chemo starters 2018

Well done Sarah,
I agree with Spange, take control of what we can. The 'unknown' seems to be a recurring word on this journey so far. It is so great that we can support each other.
Hope you have a better evening Sarah 🤗
Spange
Member

Re: May chemo starters 2018

Sounds like you’re doing brilliantly Sarah. From what I’ve been told so far (chemo starts next week for me), I think the first cycle is poss the hardest as it’s all unknown territory and so much of what happens is outside of our control. Good to focus on what IS in our control, and getting up, eating, and post officing all comes under that 🙂 Sending you good vibes for this evening - that’ll get easier too, once you’ve got the first one under your belt, so to speak xx

mustardandgrey
Member

Re: May chemo starters 2018

Well, after first FEC session yesterday and feeling fine, it was the lull before the storm.

A few hours later the wooziness and nausea kicked in, and after vomitting twice I was in bed by 8.30pm.

I put off getting up as long as I could as the nausea was so much more manaegable when lying down.

 

BUT...so far so good...I've managed a post office run to send four orders - I'm self employed and working from home so seeing how that goes.

(although I admit I've never taken a sick bowl to the post office before!)

 

And now I've managed to eat and feeling much better.

Although tonight brings the first of the self injections with the ominously large looking syringe, dreading that xx

 

H and JK71, I hope your first treatments went well,

 

Sarah x

 

Tracey Mac
Member

Re: May chemo starters 2018

Welcome H,

 

How are you feeling since your first treatment?

 

 

I start mine on May 17th

H.
Member

Re: May chemo starters 2018

Hello all,

Had 1 st of 6 FEC-T cycles on 2 nd May, posted on chemotherapy treatment for advise at least one said to join this forum, so here I am. 

Tracey Mac
Member

Re: May chemo starters 2018

Sorry Sarah just seen your new post. Well done, first one done x
Tracey Mac
Member

Re: May chemo starters 2018

I am in Cardiff.

How did it go today Sarah?
mustardandgrey
Member

Re: May chemo starters 2018

Well, I've just finished my first FEC cycle and am back home waiting for thd side effects to kick in.
So far I just feel slightly light headed the feeling you get after one glass of wine drank too quickly in the sun.
I was very anxious getting up this morning, and when the canula was put in, that was quite emotional, as it was reality.
The biggest shock was the size...and array...of syringes...six in all...they filled a large tray!!!
But the treatment itself was painless.
I'd dilligently packed a large back with juice and a sandwich and ginger biscuits, alongside a book and goodness knows what else, but the only thing I actually used was the socks 🙂

Sarah x
mustardandgrey
Member

Re: May chemo starters 2018

@TraceyMac...small world!
I'm having treatment at Singleton, and the atmosphere at the chemo unit is wonderful.

Sue C
Community Champion

Re: May chemo starters 2018

Hi Ange

And welcome to the thread.

Please come and chat whenever you wish. We all try to support each other as much as possible.

You are in the same part of the country as myself. Where will you be having your treatment? Mine was in East Surrey hospital and the service was excellent.

Hugs

Sue xx

Shi
Community Champion
Community Champion

Re: May chemo starters 2018

Ange 😘😘😘 you are 💪💪💪and beautiful too lovely, keep focused and positive, there is a lot of love and support on here and also don’t forget the BCCF helpline too. Send your hair to little princess trust that’s what I did, you take back some control then and you turn it into a positive, and it helps a child 👍👍all the ladies having treatments this week, keep your fluids up 2-3l a day if your meds don’t work phone rapid response and for anything phone rapid response it’s about keeping safe through this and your team will ensure you do ❤️❤️❤️💕💕Shi xx
Spange
Member

Re: May chemo starters 2018

Just read through all the May starter threads and thinking how awesome you all are. 

 

I’m not quite sure how to introduce myself, or quite what to say so I guess I’ll just dive in and see what comes out! I’m 48, live in Brighton and been diagnosed with ER/PR/HER2+ level 1 - I think that’s the right terminology! Treatment is 6 cycles of chemo, and then mastectomy/reconstruction and then more Herceptin. I have a chemo info session today, echo tomoz, a sentinel node biopsy on weds, and then chemo starts on 15th and 16th May.

 

I’m coping ok so far I guess. Have discovered that I’m more stoical that I realised which is working for me...went to a Darren Brown talk last year all about stoicism and its really helping me now. I imagine myself as a rock in water - solid - but with holes in so the water can easily pass through. Actually if I’m honest, I’m actually stoically pee’d off, which I guess is an acceptable position to take! 

 

Handing over at work this week which is quite heavy on my mind, so I’ll be relieved when that’s done and I can just concentrate on me. Trying to get all my ducks in a row - and the messages on here about how to make things easier are hugely helpful - creams and lotions and potions...

 

I’m ordering some black nail varnish, and luckily have a friend whose business is wigs so meeting up with her at some point. I have v long hair - down to my waist, so bit nervous about that. But I’ve seen that there are charities that you can donate your hair to, so thinking about doing that. 

 

So so much to take in, isn’t there. 

 

Wishing all you amazing ladies strength and love...

 

Ange xx

 

Tracey Mac
Member

Re: May chemo starters 2018

I am in South Wales too. Good luck for today
mustardandgrey
Member

Re: May chemo starters 2018

I'm in South Wales.

 

My appointment was originally an afternoon one, but they've brought it forward to the morning, so I have to be there just after 9.

 

I'm pleased it was brought forward as the sooner it starts the sooner it's over and there's less time to worry beforehand 🙂

 

Tracey Mac
Member

Re: May chemo starters 2018

Can i ask where you are having your treatment? Mine doesn't start until May 17th but in am already not sleeping/worryimg/contemplating. If they have made those suggestions it's all for a reason, go with it. What time is your appointment?
mustardandgrey
Member

Re: May chemo starters 2018

Thnk you, Tracey xx

 

I'm putting off going to bed as I don't want to lie awake with an overactive mind.

I've been told to arrive 45 minutes before the appointment for sickness meds and ''vein preparation with a hot water bottle!

 

Sarah x

Tracey Mac
Member

Re: May chemo starters 2018

And jk71, sorry
Let us know how it goes