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August 2016 Starters

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Re: August 2016 Starters

Hope so Benno, good luck with your chemo on Wednesday and if you are unlucky enough to suffer side effects just concentrate on what the chemo is doing to your tumour. I had my lumpectomy before chemo and no spread to lymph nodes so it was kinda hard sometimes going through chemo when they told me they had removed all the cancer but thought I would share for those who are having chemo before surgery. Also, if it can do that to a tumour then it must destroy any possible stray cells that may still be lurking after surgery.

Hazel.x
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Re: August 2016 Starters

Hi
Now that's great news to hear. Just what I needed tonight. Funny how the fear just catches up sometimes.
Thanks for sharing xx
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Re: August 2016 Starters

Hi hazel

I'm due my 2nd bout of fec Wednesday had bloods today and oncologist tomorrow ,my oncologist said to me when explaining my chemo before first bout that they were hoping the tumour will shrink to nothing as cases have happened they placed a clip inside the tumour of my breast ,I asked why and that's when he told me that should the chemo strink it to nothing and when they operate they hoping just the clip to be there , love hearing stories like thisxx
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Re: August 2016 Starters

Hi everyone,

 

Just wanted to share this with you.

 

I was at the Look Good Feel Better course today at my local Maggie's centre, which was fab by the way, loads of great stuff including lancome, chanel, YSL, to name but a few. Still need to practice putting the make up on being a non-girly type though.

 

Anyway, got chatting to the girl I had been sitting next to after the class and she is having chemo before mastecomy. She has had 3 FEC and 1 T and her tumour has gone! Not shrunk, disappeared! She, like me, is also on herceptin. So for all you ladies who are suffering bad side effects from chemo at the moment, hang on in there as horrible as it is, think of the good it is doing.

 

Best wishes

 

Hazel.x

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Re: August 2016 Starters

Hello Ladies,
Just a small question.
I have now had 2 doses of fec and I have noticed that on each of the cycles my MX scar has flattened alot around day 7 then then went back to being quite puffy again by end of cycle.
Anyone else noticed this?
Vx
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Re: August 2016 Starters

Thank you Bluash, advice is much appreciated... I thought my hand and arm were going to be ok as I have looked after them as advised in the thread vein care posted however the chemo is harsh so I guess its inevitable that this will happen to many... I remember now yes the centre I attend has an open door policy where I can drop in..I forgot about that..thanks for prompting me.. 🙂 xx

 

Hugs to everyone...xx

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Re: August 2016 Starters

My unit has an "open door policy" in that in your situation Julie I could just go in anytime between 8.30 and 4.30 and see someone. I would echo Sue's advice and ask for a PICC line. It is just a semi-permanent tube that stays in until you have finished your chemo. All chemo and blood tests are done via the PICC and it does not hurt having it put in. They numb your arm and insert it a couple of inches above your elbow.

 

If they cannot use either arm I have seem them use a leg but if you are not due until Thursday I would be on the phone and asking about the PICC.

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Re: August 2016 Starters

Hi Sue

 

Thank you for your help and the thread link. I will deffinately call the nurse tomorrow and let them know what is going on with my hand and arm and see what they suggest. Will let you know..

 

Thank you again... xx

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Re: August 2016 Starters

Hi Julieg2016,

The reason for this is, that the E in the FEC has damaged your vein/s. You might wish to call them tomorrow and see whether they can fit you in to have a PICC line installed - as this is unlikely to get better in the short term.

Also - this thread migh be of great help - https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Vein-Care/m-p/1036347#U10363...

it might be an idea to scroll  so you get to the begining of the thread.

I hope you can get it sorted.

Hugs

Sue xxx

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Re: August 2016 Starters

Hi everyone 

 

I hope you all are doing well and SE are as minimal as possible for you all.. 

 

I was hoping someone could help.... I am due my 3rd FECT on Thursday however over the last week my hand and arm where the chemotherapy has been administered is quite painful to the touch.. I am a little worried as I cannot use my other arm due to lymph node surgery... I will inform the nurse when I go on Thursday or should I inform them beforehand or is there anything I should be doing in the mean time? Xx

 

Hugs to us all..... xx

 

 

 

 

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Re: August 2016 Starters

Vintage, glad it's been a bit more manageable this time. Hopefully you're over the worst of your sickness symptoms for this cycle. Maybe it they commence SD even earlier next time, it will help even further.
I have a PICC line installed. Have had no problems with it whatsoever. Nurse comes once a week to dress and flush it and also takes bloods from it the day before chemo. When I had to get IV antibiotics for ulcerated mouth, this was able to be used also.
Take care x
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Re: August 2016 Starters



Hi Alex 2016,
Thanks for your reply. Just surfacing 4 days on from my bed at last 😆🤗
I have found it more manageable this time round with the driver in tow, great not having to be admitted or have iv fluids.
I think I will ask if they can start the driver earlier next time round, as it was very late (10pm) when the nurses came to set it up at first. The sickness/ nausea usually hits me a few hours after chemo.
Hope you are bearing up the SE.
Hugs
Vxx
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Re: Cold cap tip

Hello See See,

 

I have a PICC line so do not have a canula but they put my cap on ages before they start my treatment. Worth knowing though so thanks for the tip.

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Re: Cold cap tip

Had my 2nd FEC today. They put the cold cap on before they put the cannula in. DON'T LET THEM DO THIS.  It subsequently took 7 attempts to get the cannula in and then the drugs really hurt going in be a use my veins were closing down because of the cold. Now have a very bruised and sore hand / arm.

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Re: August 2016 Starters

Thanks Sue. That's such a positive way to look at it.! I've got head covers at the ready and a wig, may be needing it sooner rather than later.

Kath x xx
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Re: August 2016 Starters

Hi Kath64,
Unfortunately - it is the first sign. Many say they have the tinging, others have soreness of the scalp and headaches.
Just think about it this way - every hair that drops means also that in is one or many rouge cells dead, too.
Hugs
Sue xxx
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Re: August 2016 Starters

Hi there
Have popped over from September thread. I had first dose of TCH yesterday and my scalp already feels tingly. I'm sure I 've read somewhere that this can be the start of the shedding. It is what I am dreading but perhaps it's better if it happens sooner. Anybody else have this?
Thanks

Kath x xx
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Re: August 2016 Starters

Hazel and Blueash, I'll definitely get to Pharmacy and get some Claritin this week. I'll start taking them before next chemo and cross my fingers lol. I do have Citirizine but haven't actually taken them for a while, as got them for an unexplained rash that isn't there any more. In fact that's how I first found my breast lump. I developed this strange rash/red mark type thing which came and went daily all over my body. It appeared on my chest area one night and because I put my hand on it, that is when I found my lump! Otherwise I don't think I would have discovered it. Doesn't bear thinking about. Especially as it was grade 3 and had spread to lymph node when SNB carried out.
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Re: August 2016 Starters

I did wonder if ceterizine woud be just as good but changed because claritin was the one everyone said helped so I thought might as well go with that. I buy them anyway - not on prescription so just swapped over.

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Re: August 2016 Starters

Hi Alex,

 

Hope T is kinder to you than the FEC has been. I know you've had a rough time with that.

 

I've been on T from the start, TC regime and have not suffered joint pain. I'm also on daily cetirizine for allergies, have been for years and wondered if that might have helped? Actually spoke to my GP about this last and she said cetirizine and loratidine are from the same family.

 

Hazel.x

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Re: August 2016 Starters

Blueash, thanks for reply. Well maybe it is the fasting that is helping you, I suppose you don't know if that would be the case anyway, but go you for doing it! And as you have fasted before, you know what you're doing.
I did get the mouth lozenges you recommend on another thread, but unfortunately have had mouth issues on all 3 cycles, although probably not as bad this time, so will continue with these.
I actually take Citirizine tablets already, so will contact my GP to see about changing to Claritin before I start Tax
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Re: August 2016 Starters

Hi Alex, my worst side effect has been the tiredness/fatigue. I have not had any issues with my mouth or stomach and no sickness either. I do fast before chemo so I am not sure that it is that which helps, but it is supposed to - that's why I do it!

 

Also you have to take claritin the hayfever tablets when you are on Tax and I have done that from the beginning too. See here for info:

http://myangrycancer.blogspot.co.uk/2013/02/claritin-is-worth-its-weight-in-gold.html

 

I take it every day not just on the days I give myself the injections - but I have hayfever anyway and used to take Zyrtec (cetirizine) every day from April til October so just switched brands.

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Re: August 2016 Starters

Thanks Blueash. I'll just have to hope that Im not one of the unlucky ones lol. Haven't been too great with FEC due to sickness and mouth issues. So hard to eat and even worse to drink. Luckily I do get a good 3rd week before it starts all over again. Don't know whether changing to T will be easier in any way. I remember the Onc saying T is usually harder on you, so will just have to wait and see. Don't want to minimise what you are going through, but from your posts, you seem to have not had a completely horrendous time. I've been reading some of the June thread and there are a few girls on there struggling with horrible side effects of T. Aw well, what will be will be and another step closer to the end!
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Re: August 2016 Starters

Hi Alex,

 

Just wanted to say that not many of us have sickness on the Tax. I have been given loads of tablets just in case and not taken any yet. However it does make you tired/fatigued and you ache all over but you can take tablets to relieve it. I am getting Tax for all 6 sessions.

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Re: August 2016 Starters

Vintage, I had my 3rd FEC on Tuesday past. My chemo unit set me up with a syringe driver about 11am to start the anti-sickness drugs going through me. Chemo was then given around 4, which meant the drugs were well in my system. The DN was sent out to replenish drugs 24 hours later and then another 24 hours later, it was taken off me and I then commenced oral anti-sickness. I definitely had an easier time this cycle, but I did suffer from nausea and retching and was sick twice. However, this was after syringe driver was stopped and while I was in my oral medication. It is only today, that I feel the nausea has stopped and am still taking Cyclizine and Ondanestron.
I do think it was worthwhile me having syringe driver, as meant I had first 2 days more or less nausea free.
I think it is trial and error with all this, and they never know what will work best for each individual.
I'm just hoping when I change to T for next 3 cycles, I don't experience the sickness.
I'm hoping it works for you. It is soul destroying at times and sure isn't easy. Let me know how you get on. x
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Re: August 2016 Starters



Hi everyone,

I think most of us are having soon or will have had our second round of chemo.

I am having my 2nd Fec-TH tmorrow. I was so sick first time round and in hospital for 3 days on iv fluids and meds my oncologist has decided I have a nurse come to the house after my Chemo and for next few days to fit a syringe driver to my stomach area and top it up every 24hr.
Has anyone had experience of this, and was it efective in controlling symptoms?

Hope y-all are doing ok 🙋
Vx
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Re: August 2016 Starters

Well done on the shave. I did mine last Thursday as I couldn't deal with my hair falling out and felt so much better. I've gone down the head scarf route as I couldn't cope with a wig, we all deal with it differently don't we. Had my second chemo today so half way there for me xx
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Re: August 2016 Starters

Omg
I just shaved my head myself when no one in. To a mark 2. Could not take the handfuls of hair coming out any longer. With my jeans and dog tooth pattern jumper I just need the braces and I would be a cool skin head! ! Lol
I have had many tears thinking about doing this, but feel kind of ok with it at the moment. Hope I don't scare OH when he gets home later 😃
Thanks for your good advice Sue, I guessed you were right and just went for it. Better get the vacuum out and clear the mess.
Good luck tomorrow Benno449.

I am getting my pic line in tomorrow , oh the joys! 😩
Hugs to all Vx
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Re: August 2016 Starters

So the hair has started falling out , tears this morning ladies I'm so emotional 😢.  I'm having my head shaved tomorrow I hear that your head gets sore ....

 

on on a plus side I absolutley love my wig ..... Even got highlights in it x

 

 

💗💗💗💗

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Re: August 2016 Starters

Hi Vintage,

you could cut your hair shorter still, it will not make it worse, quite the opposite. However be very careful that your scalp does not get 'nicked' and your immune system is now not what it was. As I had my hair shaved very short beforehand, I was fortunate not to suffer the way you are. My hair left me in two bouts - after FEC no 1 and FEC no two 2 and I was left with some 'bumb fluff', lol - so it never went all together and I found some soft fuzz better, than being completely 'naked' - even if it looks the same, lol. So how long does it last - unfortunately cannot say, but it should certainly be gone, when most of the hair has gone.

See See - UTI - it is so very important to drink at least 2 litres of water a day. The E in FEC has a strong effect on our kidneys and urinary tract and the only thing we can do is flush it out of our body as soon as possible, by drinking a lot of water. It is not easy to drink so much all of the time, but trust me on this one - it really helps. And keep going with it - to look after your kidneys. I ended up in A&E with excrutiating kidney pains and would not wish that on anyone. Drinking lots and lots has kept that at bay during the rest of my FEC chemo.

Hugs

Sue xxx 

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Re: August 2016 Starters

Hello everyone.
3 weeks past 1st fec t h and my hair which I got cut short to a pixie style last week is falling in handfuls. My scalp and folicals are very painfull to touch. Wearing my wig out side but can't wait to take it off when l get in because of the pain. Does anyone know how long the sore folicals lasts for. Is it until every last hair has fell?
I have considered cutting to a mark 2 or 3 but not sure if it would make it worse with hair standing on end?

Sorry to hear you got a uti See See, that can knock you for 6 at the best of times. But good it's being delt with. Hope you feel better soon.

V x
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Re: August 2016 Starters

It's good to hear about the emotional side too. I had a melt down this week - tears, anger, strop. Cried away watching strictly last night for some unfathomable reason.

 

Today I spent 6 hours in casualty cos I had blood in my urine and was advised to go by the helpline. They think I have a uti and gave me antibiotics for a week. With a bit of luck it won't delay my next chemo. Today my mood was fine despite the frustrating experience when my plan had been to get back on my bike this morning. 

 

The he joys of chemo 😏😬🤔

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Re: August 2016 Starters

Hi julieg2106

so glad to hear you have your constipation sorted - yes it is a challenge and can happen easily. I always take action after day 2 - as I know it will happen.

And yes, once off steroids tiredness and emotions will set in. 

Some may experience sudden short lasting depression and break out in tears at a drop of a hat. As you move forward the smallest thing, however unimportant, may set you off.

Let it happen, it is good - whatever we may thing, however much we may wish to be strong and postive  - it is simply not always possible. Our bodies are being put through an enourmous strain and so is our mind. Let is all out - cry, as and when you need to.

If you become depressed for more than a week, please talk to your breast care nurse, so she/he can judge, whether you might need a referral. Most of the times all of these feelings happen, because of the treatment we go through, and it will pass.

If you should have underlying issues with depression or low mood - then chemo could make this worse - hence my advice.

And of course, we are all here to listen, read and virtually try to dry those tears and give many virtual hugs.

Huge Hugs

Sue xxx 

 

 

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Re: August 2016 Starters

Hi Scarletbea and everyone

 

I hope we lovelies are holding up.. I am 3 days post 2nd session and I have to say the sickness has taken over this time around and sleepless nights too but I have to say the most important thing for me is I seem to have the constipation sorted this time around so many many thanks to you lovelies for all your fabulous tips,  I even text hubby this morning while he at work saying "I've been 3 times woop woop" with a reply a min later saying awww well done darling so proud! ☺ who would have thought I would have been texting that news!

 

My first session didn't seem to bad compared to a lot of you although the constipation ( sorry to mention again but it was horrific ) took over for 5 days which may have helped with other SE I was experiencing but I did spend hours in the toilet and couldn't feel my legs in the end..

 

Last night i absolutely sobbed my heart out as my positive front came crashing down showing my vulnerability which hit me hard and I just sobbed and sobbed.. I think I really needed to do that for my own sanity...

 

Anyway I do hope everyone is holding up...  (((hugs))) to us all xxxx

 

 

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Re: August 2016 Starters

Sue ,

 

thankyou  so much for your advice , Im loads better after my first week of chemo , can actually start eating properly and not feeling like my throat being sliced by a razor blade.  Losing the taste of certain foods I like is disappointing but on the plus side I'm now eating spicy foods ...

 

all these little tips from you lovely ladies are a godsend , I'm ready for round 2  

 

Thankyou again 

 

hugs 

 

manda xx💗

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Re: August 2016 Starters

People keep telling me that the first chemo is supposed to be not so bad, then it gets gradually worse.

I had such a crap time the first time around that now everything that happened on cycle 2 seems ok by comparison - I think I prefer my way, hehe

 

New side effects this cycle: weepy eyes/focusing problems sometimes, feeling of a lump in my throat that I need to swallow, dry cough in the night (because of that?), runny nose, and way more tired, relatively

And of course the hair, although I'm still waiting for 'everywhere else' to go, specially legs and armpits hehe (still big strong heavy brows...)

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Re: August 2016 Starters

See See
I found a wee glass of wine with lots of ice in it quite soothing too. Lol
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Re: August 2016 Starters

I have discovered that whisky is a great temporary cure to a sore mouth and the nasty taste 😜

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my second round oRe: August 2016 Starters

Just back from my second round of chemo. Feel OK now but expect a sleepless night due to the steroids. Then when they wear off the fatigue will be there if it is anything like last time. Still one third of the way through.

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Re: August 2016 Starters

Hi , hope everyone is coping reasonably well , i am on day 8 of cycle 2 this time around suffered badly with my mouth and throat as it appears a lot have , used difflam which is a godsend and today feel much better no cough this time round thank god . love this  link so helpful especially on down days xx

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Re: August 2016 Starters

Hi everyone,

 

Benno (Amanda), there are lots of things you can get for your sore mouth. I was told to avoid mouthwashes that have alcohol in them, that includes Difflam. I have been prescribed Gelclair for mouth ulcers and then Nystatin for oral thrush, give your helpline a phone and see what they suggest.

 

Vintage, please don't worry about your chemo being delayed by a week, it happens a lot and I have been assured by the Onc team that it doesn't make a difference to your treatment. Hopefully you might get your picc line installed before next chemo.

 

Blueash, I don't wear any kind of liner under my wig, wasn't told to, I find them hot enough on their own.

 

SeeSee, I completely sympathise with how you are feeling. I went into chemo feeling well and recovered from surgery. It's hard putting yourself through treatment which makes you feel unwell. I find it particularly hard as I was assured that the cancer hadn't spread and had all been removed during surgery and the chemo (and herceptin injections in my case) are to stop the cancer returning.

 

Hope everyone else is doing well. I've still got neuropathy in my fingers and feet which is getting me down. A perfect example of going into chemo healthy and now suffering side effects from chemo which could last a long time or be permanent. Smiley Sad

 

Hazel.x

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Re: August 2016 Starters

Thanks Vintage

Will be around this forum on the various threads for a long time to come - it has become a very welcome part of my life.

And if I can make it just a tiny little bit easier for people having to face this diagnosis and/or treatment, then that makes me happy. It is the way of how I can give back for the support I have received on this forum, from my Breast Care Nurse and the NHS. 

Hug

Sue xx

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Re: August 2016 Starters

Thanks Sue for the advice.
Happy to see you are on your final number 6! Wishing you well x
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Re: August 2016 Starters

Hi all,

hope you are doing as well as can be expected.

Amanda (Benno448) - although you may not be able to face eating - having little nibbles of ginger biscuits, toast, chesse crackers or fruit usually really helps with keeping nausea at bay - as weird as this may sound.

However if you feeling and being sick persists it may be ab idea to call your Bcreast Care nurse, so she can talk to your treatment team for adjusted medication to help you with this.

Vintage and Amanda

Sore mouth - is one of the ost common side effects on chemo. Very good ora care (brushing after every meal), using salt wash and Difflam often can to the trick.

Pine apple cubes are supposed to help, too!

However if it gets difficult to manage or much worse it may be either oral thrush or mucositis. Should you experience slightly larger white flecks on toncils, back of throat or tongue - than you would expect with oral thrush - it might be worth contacting your Gp and get him/her to have a look. If it is mucositis then antibiotics might be described. I have had this throughout my chemo - and it starts in the gullet with me - very unpleasant and painful.

Also- totally agree with blueash - The sooner you have a PICC line installed the better. The vein issue is likely to get worse, so better. There is this thread - which may be of some help - https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Vein-Care/m-p/1036347#U10363...

However, I would still suggest a PICC - I tried for 4 cycles with dissappearing veins and hardening veins. They 'burnt' out - and post no 4 had PICC. Fantastic - everything is so much easier now!

See See - Unfortunately fatigue is a side effect of chemo all of us have - and it does sapp energy. It is a side effect, which is cumulative, too. So very frustrating.

I am aware of some ladies running and I so hope they can keep it up. It is important to get out, and if it is only for a walk. Swimming is out - immune system challenge - as are most activities, which are team based. You are quite right - we do need to look after our immune system. It is being compromised and will become increasinly so as you go throught the cycles. Any infection, when on chemo can become life threatening - so it is really prudent to avoid anything, where we could pick one up.

So - time to let go - your body might just force you to - once past chemo your energy levels will rise again and will keep improving. It might likely take a few months, but at least it is a continuous upwards!

Hugs to all

Sue xxx

 

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Re: August 2016 Starters

Day 9 of cycle 1.

 

Despite not having severe side.efffects - Its making me feel vaguely unwell as well as my mouth bring sore and food tasting of nothing - I've had enough of this chemo lark now. It's upsetting me that I was recovering well after mastectomy and reconstruction, despite two further hospitalisations for infections. I was beginning to increase my activity and feel human again. Now I feel like I'm going backwards and having the motivation to do things is difficult.

 

What kind of activities are others doing when they feel well? I feel as though avoiding infection is the only aim in life 😟

 

To to add to my woes the hospital have messed up and changed my appointments and said I need another heart scan but not why and that my  biophosphate treatment should start next week requiring yet another blood test when I thought it was to start at the end of chemo.

 

Grump over. Thanks for allowing the space for this

 

Cathy

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Re: August 2016 Starters

Blueash thank you for putting my mind at rest for the pic line.
I was wondering how on earth they were going to fit it with all the bother l have had so far. Good to know!
Feel like I have a cold starting , hope it does not come to anything.

Hope everyone is doing ok . V x
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Re: August 2016 Starters

Vintage,

 

I have a Picc line and I love it. I have never known any different because at my chemo chat they suggested it because of only being able to use one hand. I thought they said that to everyone but not so because some people on here have had trouble with their veins.

 

You don't feel a thing because they numb your arm, well you feel the injection for that but that's all. It takes about 15 - 20 minutes then I had to have a chest xray to make sure it was where it should be and it was. Make sure you wear short sleeves for every appointment thereafter. No more needles for chemo or blood tests but you do have to go and get it flushed about every week/ten days.

 

Sorry your next one has been delayed. Keep us up to date xxx

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Re: August 2016 Starters

I have a wig courtesy of the NHS - I had a call from a shop in Ware (Herts) saying that they had be contacted by the hospital and when would I like to go. I thought I got a voucher to spend with any shop that takes NHS vouchers but no. This is a free fitting/cutting all bells and whistles appointment all on the NHS so I went along this morning.

 

I tried on several and ended up with one a similar colour and style to what i have when my hair is looking decent. It was a great service in a private room, you pick the one you want and then they adapt the size and cut it for you. I am really happy with it.

 

I would add that if you are getting one don't use the stocking wig cap, you have to have one for hygiene when you are trying lots one but if you have hair the cap rides up under the wig and the wig does not fit tight. It is ok without anything but I bought some liners called Headline It. It means you need not wash the wig as often and it will keep its shape better.

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Re: August 2016 Starters

Hi Ammanda,

I had a really sore mouth too. It lasted about a week. I felt the mouthwashes irritated it worse , so went back to using salt water. Hope it settles for you very soon. Ice cream is also sothing.

I went for my bloods today. What a nightmare that was. Could not find a vein had 3 nurses trying everything . Then they had to give up and send me to the chemo ward for them to try. After another 4 attempts there we hit gold and got just enough before that vein blew also.
I went home and got a call to say my white blood cells are too low still and my 2nd chemo due on Monday, will be put back another week. This is worring me.
I am also booked to get a pic line fitted in the next few weeks. So that's good news.

Vx

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Re: August 2016 Starters

Morning all , I'm now on my 7th day of my first cycle of fec . First night was spent around the toilet bowl this continued through most of the night so I rang rapid response , my temp was ok they advices me to take my anti sickness pill earlier than anticipated . 

 

Not feeling the the best at the mo , bones don't hurt so much but my mouth and how sore it is and lack of sleep is really getting me down . I'm drinking loads but this also builds up flem in the back of the my mouth which is making me feel sick (help)😔

 

I taken advice of the forum what to do and not . Which has helped . Is it normal to not eat so much I'm nibbling but the thought of eating makes me feel sick  ... 

 

 

Perhaps sounding mardy as I know we are all going through the same effects But I just want more advice and guidance so Im ready to deal with this on my second cycle . 

 

Will beat this hindrance one way or another 💗💗💗

 

hugs

 

amanda xx