Hilary - why is Tax so awful…? when did you have yours? im day 9 now and only considering going out for lunch tomorrow? Great news that your son has got engaged… not great that you dont feel well enough to go out… but we have to look after ourselves and listen to our bodies…
and Cybele - went to put jeans on today but guess what? they didnt fit… my bottom half has morphed into somthing resembling my leggings! Like you I’m hugely frustrated… I didnt swim, but i used to cycle 60 miles a week and was really fit and active…i hate feeling fat, ill and ugly… but then we must try and focus on the positives… how about us all making a list of those…
I’ll start…
Mandy - I’m on day 9 as well. I think part of the problem is that I’ve had 3 FEC & was lucky enough to only have a few side effects. Since TAX I generally feel unwell and I’ve had weak and aching joints and muscles. nose bleeds. sore eyes. diarrhoea, numbness round my mouth.numbness and tingling in my hands and feet, sore mouth and swollen tongue. everything tastes like a sewer. rash on my hands and neck, tiredness but unable to sleep as welll as the sore throat infection and cough and shortness of breath with the chest infection. The weirdest thing though is intense itching down below and in my rectum - particularly annoying when I’m trying to sleep! I have yet another blood test on Monday and am due another chest xray the end of next week. Sorry I’m just feeling sorry for myself today. Got to look ahead at the good things to come - son has now set the date for the wedding in October 2014 so plenty of time for my hair to grow back! And spring is coming - got to get the energy back to get out there and enjoy it! But the main positive - it does seem to be shrinking the b*****!
Hilary x
Hi, I’m getting treatment at St John’s Hospital in West Lothian Scotland i don’t know where all the rest of you are from sorry.
Mandy i too feel fat and ugly but only since i started on the Tax. My face seems to have swollen and went all red patches and my middle is expanding at an alarming rate.
Does anyone else have the horrible taste in the mouth!!! It drives me mad the only thing that take it away is boiled mint sweets and at this rate i’ll have no teeth left. False teeth to add to the wig and false boob what a though!!!
I also find myself getting very short tempered snd moody since the tax don’t know if anyone else feels the same.
I can’t wait till summer, long sunny days relaxing in the garden with all this poison out my system.
xx
Hillary - yes I have the itching bum too! I thought it was because of the new hollywood hair cut!!! ha ha ha. I do also have really itchy hands and in particular in between my fingers red and sore…but cant quite compete with your list Hilary! I felt like I was getting a cold yesterday but think i have managed to fight it off.
Another benefit; no underarm hair and would look great in a triangle bikini (no unsightly pubic hair!) although i might look like the girl in shallow hal.
My taste buds are starting to come back, but still not great…
Off to watch Mrs Brown’s Boys…
lots of love to all…WE CAN DO THIS!!!
xx
Right ladies, a couple of you mentioned sore, itchy bum. Everyone else can now thank their lucky stars and look away. This is a sfx of Taxotere. Not a common one and not even in the Macmillan info sheet (boo). Common enough for at least 2 of you (and me). I thought it was due to pooing bricks, but the tax will fry your entire digestive systen from mouth to bum. So, I will share my anti sore bum plan. It took me 3 cycles to get this right.
Keep your bum clean. Sounds obvious. Wash with umperfumed soap or use moist unfragranced tiolet wipes. A well known puppy based manufacturer makes flushable ones called washlets
Get it dry. Lock yourself in a room where no-one you care about (or you hope will find you sexually atractive in the future) will find you, and air dry your bum by pretending to be a dead frog.
If you currently have any itchy bits (or experience tells you you are about to get them) apply a tiny bit of Metanium nappy rash cream. Let it dry. Then apply Cavilon cream all about. Let it dry.
if you have no itchy bits, apply Cavilon cream and let it dry
There really is no end to the indignity. But this worked for me, especially when I did not wait for symptoms to start before doing it. I had terrible probs cycles 1 & 2 but started straight away on 3 and it was OK. I just got the hang of it when they stopped my Tax cos it was not working. How we laughed.
Well Cressida - I’m on FEC, not TAX thankfully, and was feeling mentally a bit down due to the fact that I’m to be poisoned for the 5th time on Tuesday, just when I am beginning to feel a bit more human. However, your post has really cheered me up and given me cause to chuckle at the mental image of you prostrate on the bathroom floor trying your hardest to do a dead frog impersonation. The mind absolutely boggles. I get piles occasionally and have been known to use my hairdryer ON COLD setting to achieve the same end. It’s a bit difficult though as you have to use an extention lead and then force the hairdryer lead under the bathroom door. Next time I’ll definitely try the dead frog method. Seriously though you do sound as if you are really going through it at the moment with s/e’s. Hope things ease off for you soon.
Hi QD, I mentioned this to my surgeon when I told her that I’d already had a total hysterectomy so no probs with ovaries and oestrogen. Her reply was that oestrogen isn’t just produced in the ovaries and that a vast amount is produced from body fat. She said that in the profession body fat is known as the 3rd ovary! I was a bit p"“”"d at this as I only weigh 7st. 8lbs.
Hello guys. Had an amazing week. The onc said enough with the chemo . Still on 3 weekly herceptin and radiation treatment to start, followed by the dreaded tomoxifen for 5 years.
Being at work has been amazing and made the weeks fly by. Exhausting but better than thinking about cancer all the time. I work for a blind and disabled charity so it also keeps me in a reality check and makes me appreciate that its tough doing this but worse for others,
Good luck to you all and thinking of you.
Hi
Cressida - many many thanks for how to deal with the itchy bum. It was good to know I’m not the only person to get this & I certainly will give your 3 steps a try - will send OH off to get the cream & I can’t wait to try air drying!!
Actually managed to sleep quite well last night & I feel a totally different person today - almostr human! Most of the side effects are today manageable with the help of all the tablets & creams! Long may it continue!
QD- If oestrogen is produced from body fat I could have quite a problem there! I won’t even put in print my weight! Only good thing about this really horrible taste in my mouth is it’s stopping me eating quite so much - unfortunately not stopping me completely as I’m still hungry so often! Looks like I will be having tamoxifen for 5 years.
Hilary x
I’ve just been to get my bloods done for FEC 4 tomorrow. It took the nurse 4 stabs (!), a second nurse and 45 mins. My OH has chewed his lip sore waiting for me to come out. My arm is sore and bruised and I really didn’t need that, but I’ll be two thirds of the way there after tomorrow. I’ve never wished my life away so willfully. Boo hoo.
Love to all and hugs to all having treatment this week. I’m thinking of hibernating for the foreseeable future.
Border Collies - the idea of body fat as the third ovary is very striking - I’ve been thinking about it ever since I saw your post yesterday. It makes a great deal of sense, given all the stuff about how being overweight is one of the key factors in cancer recurring. My cancer is 7/8 for oestrogen sensitivity, and it seems to me that the one of best things I can do to stop it coming back will be to get my body fat percentage down as much as possible - I dread what to think it is at the moment, with the lack of exercise and the steroid fuelled appetite. i must have put on half a stone since I started chemo.
That image of body fat as the third ovary, churning out all that oestrogen, might just be enough to stop me eating…
Hamley - ouch! that sounded nasty, I’m off for my blood test this afternoon, with FEC 4 now scheduled for Thursday, if my neutrophils are back up to scratch.
In other news, I’m a bit worried I might be developing toothache - as far as I know, my teeth are fine, and they were looked at just before I started chemo, but there seems to be some twingeing going on, and I’ve been trying to ignore it, but I’m starting to think I’m going to have to go in and get it looked at.
Chemo and dentistry really don’t mix, do they? Chemo and tooth infections even less so…Oh God.
I just can’t believe anything else horrible is going to happen, but that is very silly of me, as all of us on here know that more and more horrible things just keep happening all the time, don’t we?
Sorry, I logged on here just now meaning to be cheerful…
I was diagnosed in Nov treatment in Paisley, and have since had 2xFEC wasn’t keen on with the sickness etc then due to low blood count and MRI showing little reduction in tumour I have started taxotere OMG got first treatment 10days ago have had tonsillitis for 8days diarrheoa, massive weight gain sore mouth skin rash bone pain headaches all food tastes awful and the last of my hair has fallen out, does anyone know when the bad side effects kick in? please tell me this doesn’t last the full 3wks each time?
Natalie x
Hi Crackers,
I’m going to be sickeningly cheery today.
On my post Tax high. I am sure some happy hormone (oestregen/seratonin?) is released when blood counts start to rise after Tax. This is the third time I’ve experienced this euphoria. My taste buds are happy again and I have just enjoyed a lovely cup of tea-such simple joys.
The sun is shining too for the third day in a row and this has added to my mood, to such an extent that I had to head into Glasgow for a wee jaunt. Happy hormones coupled with lovely shops found me on a spending frenzy. I just wish I was rich and I would’ve gone absolutely mad. All sorts of odd things were calling to me. Even those ridiculously expensive room fragrancey stick things (can’t work out what you do with them. Do you buy sticks and liquid? Why are they both scented? etc). There were some seriously lovely jammies in John Lewis-resisted though, jammy days are over! I left town with some lovely purchases FOR MYSELF! Unheard of since having kids really.
I’m not even going to think of what I’ve spent, or how one top was a bit snug and I have to start those blinkin’ Tamoxifen tablets (still unopened) at some point.
Hope this isn’t adding insult to injury for all of you struggling with horrible side effects. I’m just posting to let you know it is such a buzz to be leaving chemo behind (please God!) and that this day is on its way for all of you. It’s amazing how one day can make such a difference when the bloods start to recover (Did have to leave town because throat was starting to hurt and at 12 days post Tax, I suppose I could still keel over from sepsis but hey ho)
Mz- Great news on your chemo-I highly recommend retail therapy to reward yourself.
Cybele-Good luck with your bloods today…and your teeth. I have experienced swollen gums on the last 2 cycles with some bleeding gums, but luckily gums have settled down after a few days. Been rinsing with salt water pretty obsessively (Corsodyl was a bit too brutal for me).
Apologies for nauseating Pollyanna gaiety!
Natalie-you’re just down the road from me. I grew up in the Paisley area and my sister was treated for Breast Cancer at the RAH.
For me the Tax side effects were worst on days 4 and 5. Slow recovery thereafter with horrible mouth lasting till day 10 after which it resolved very quickly (used cosodyl sparingly-quite harsh, and salt wate rinses to keep mouth ulcers at bay). Also felt quite weepy but that I am sure is due to suppresion of happy hormones.
I put on 4lbs both times overnight. This was def fluid retention which seemd to be all round my face and neck-it was actually sore to touch! My 2nd Tax was much better than no.s 1 and 3. No 1 was the worse. I could literally not sit down. Had to pace about or lie down flat. Felt really rattled. For me it did get more managable. I noted down all my side effects each day and this helped me on my subsequent cycles because I could see when they started to resolve.
Good luck with it. I’ts nasty stuff. Make sure you let your chemo nurse know what you’re experiencing because they have all sorts of solutions up their sleeves.
please tell me this doesn’t last the full 3wks each time?