August 2016 Starters

Thanks all for the heartburn advise i will ask on thursday for something stronger , i too am feeling normal this week all ready for round 2 lol xx keep well

Hello all,

 

I had my first FEC yesterday and opted for the cold cap as I’ve recently grown my hair and it’s really thick so a bit of thinning will help my confidence rather than losing it all. Everyone has told me how good it looks.

 

Yesterday I was really scared of the drugs and the whole process really and cried intermittently for the first half hour but things got better and there were people around to chat to.

 

I’m feeling ok today if a little tired. I have Crohn’s disease so the limited diarrhoea is quite a bonus though it does cause more stomach pain. 

 

Injections start tomorrow but the sleeplessness is already upon me.

 

I’m hoping that after my mastectomy and reconstruction followed by two further hospital admissions for an infection which included further surgery on both scars, that my bad luck is over, but reading the thread suggests that I may start feeling rough In the next few days. 

Hi See See
Welcome,
I hope you are feeling ok so far. I know what you mean re bad luck with infections as I was the same after my MX. So fingers crossed.

Big Hello! to all August starters. ? There seems to be quite a few of us now started. So great we can support and advise each other through these unknowen coming months.
Lots of hugs and hoping round 2 will be kind on us.
Vx

Hi everyone

 

It was two weeks as yesterday when I had my first chemotherapy session and over the last few days I have noticed my hair falling out however today it’s coming out in clumps and I mean clumps…actually had little melt down this morning and my head is actually tender to the touch as though I have had my hair tied up tightly in a ponytail. I am quite bald in the front of my head and where my parting is so today I decided to use my little hat and brightened it up with a scarf around it. It felt very strange at first but to be honest it wasn’t as bad as I thought it would be for me. I over the last two weeks like many ladies here i decided to take control and had it cut into a bob from very long thick hair and then Tuesday I had a little pixie cut and I am so glad I did as if it had been my long hair I think It would have been so much worse for me. My other half is shaving it for me later as it looks like I have a mullet… not a good look for me. ?

 

Hugs to you all…xx

 

 

 

 

 

I’m on day 4 of my first cycle. Apart from a headache (which I’m prone to anyway), and a kind of fuzzy feeling occasionally, a metal taste in the mouth and some tiny red spots, I seem to be suffering few ill effects. The constipation is a bonus as it just cuts down on my diarrhoea as a result of previous surgery and Crohn’s disease. 

 

I post this to give hope for anyone about to start that it can be OK, at least initially.

I’m on day 4 of my first cycle. Apart from a headache, which I’m prone to anyway, and a kind of fuzzy feeling occasionally, a metal taste in the mouth and some tiny red spots, I seem to be suffering few ill effects. The constipation is a bonus as it just cuts down on my diarrhoea as a result of previous surgery and Crohn’s disease. 

 

I post this to give hope for anyone about to start that it can be OK, at least initially.

Well Day 14,  and that was a bit of a hairy week,   I caught a cough last weekend, no idea where from, hadnt left the house, , had high temperature, went into hospital, all the usual tests done, but luckily didnt need to stay was put on antibiotics, can only take paracetamol, and throat lozengers which is good, but the cold errupted, felt like death, me and my bed became joined at the hip,  but over the past two days I am starting to feel human again, then wham dam itchy head and hair failing out like a moulting dog,  I have my fingers crossed it doesnt all come out, (does it with everyone) ???   I have it cut short and spikey so hopefully it will go gracefully.     Other than that I feel OK,  bit knackered, sleep pattern all over the shop but out of the past 7 days slept for 5 hours solid on one of them !  so all is not lost.    Deb x

Hi Scarletbea
I was very sick on my first Fec and admitted to hospital for a few days to get it under control.
So will be having a meeting before the second round as to what meds to try next time. What did you feel helped you the most with nausea this time?
I also have a very painfull mouth at the moment. Skin has came off upper gums and my tongue feels like it’s burnt.
Washed my hair today and it’s still staying put for now.

Vx

Hi Deb
Oh no … rubbish you also had to deal with a cold on top of everything else. Glad to hear you are starting to feel a bit better x

Hi Blueash,
Thankyou for the link. ? I will seriously have a look into these. I am going to ask nurse on Monday if they can supply them.
My mouth was fine until day 9 and has got worse since.
V xx

Hi,

 

Has as anyone got any tips for dry / sore mouth except brushing teeth after each meal and corsodyl four times a day?

 

thanks 

Hi See See, just to mention that recently, I had a sore mouth on my current chemo, and instead of brushing four times a day, I rinsed my mouth after every food/drink intake, with common cooking,  bicarbonate of soda, 1 teasp to a large mugful you can gargle with it, but best not to swallow. I of course still brush my teeth morning and evening with a soft brush.

 

Anyway, it really worked for me…quite quickly. DIluted corsodyl was what my onc advised but it stains the teeth! I do dab it on to cold sores if i get them tho  and that works for me.

 

Huggy thoughts

 Moijanxxx

Thanks for the tips everyone. I’ve got corsodyl without alcohol and will try some of the other ideas. I don’t think it’s bad enough to trouble the team yet, just irritating.

You might find that just dabbing the corsodyl on the sore area with a clean finger or cotton bud is helpful if you are concerned about staining your teeth.

just a thought, Moijanxx

 

ps. Im sure the team wont mind you contacting them  if you later feel you need help with this.xx

Hi Scarletbea and Love wine,

Thankyou for your replies. It’s alway useful to know what others are being given for the symptoms.
Unfortunately I was prescribed Emend Dexamethasone, ondansetron ,Metoclopramide for first Fec and still admitted for a few days for iv ondansetron and fluids. This did settle it and get it under control and I am glad they acted quickly.
My oncologist suspected I would be quite nauseated (hence Emend for first fec) because I had hyperemisis (very bad morning sickness) on both my pregnancies and admitted for iv ondansetron and fluids back then. So not sure what they will try for 2nd fec next Monday.
My tongue burning and sore gums has settled a good bit today. Hurrah! ! Made it. I found a glass of wine with lots of ice in it quite soothing for the mouth!!! Along with salt and bicarbonate soda mouth washes lol.
Bloods and chat on Thursday.
Dreading 2nd fec and more se .

Vxx

Hi everyone

 

Hope you guys are doing OK. …

 

Well my hair has finally secumbed to the chemo, hubby shaved it on Friday night as my scalp was so sore and hair coming out in clumps, I have bald patches all over and the small hairs coming out everywhere. I am wearing hats and scarfs and really enjoying trying new styles which I have found on youtube. I actually feel quite liberated which I never thought I would feel being hairless.

 

2nd FECT tomorrow so hope SE are minimal will deffinately talk to them tomorrow about constipation which I have to say was horrific but eating lots of bran, prunes and having laxado and drinking plenty of water as advised here.

 

Hugs and love to you all. Xx

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

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

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

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