August 2016 Starters

Public Archive
81

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 - forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Vein-Care/m-p/1036347#U1036347

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

 

82

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

83

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. :smileysad:

 

Hazel.x

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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

85

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

86

See See
I found a wee glass of wine with lots of ice in it quite soothing too. Lol

87

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 ???

88

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

89

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

 

 

???

90

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

91

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

92

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

93

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

94

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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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

96

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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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.

98

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

99

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

100

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