How long with these side effects??

Hi all
Not sure if this is the right section but here goes anyway.
Im due to start rads this week and finished chemo 3 weeks ago - 3 FEC and 3 Tax.
I still have numb finger and toe tips but the worse is the aching pains in my lower legs along with them feeling twitchy. These pains make me feel so tired and worn out and I have to take co codamol to ease them and help me sleep. Im also pretty breathless when climbing stairs or even just walking ad seem to suffer from a constant blocked nose and head, always sniffing!
How long do these side effects last? I just want to feel the same I used to!!
My hair has started to grow back - got about half an inch but only on my head. When can I have my eyelashes back, Im sick of looking all piggy eyed and fighting with my false lashes lol
Anyone help with this query??

Thanks…Mega

Hi Megalady,

I have had 5th rads today 10 to go. Like you I felt as though I still had SE from chemo. I had TAX/CYCLO.

I can only say that I have had good/bad days since starting rads. The fatigue is still very much there,however the aches and pains aren’t as bad as they were 2weeks ago. I still get breathless but again not as bad as when I first finished chemo.I know you will have heard it before but’everyone is different’

I too have cried to my husband and friends that I just want to feel like I used to and when everyone tells me how well I look I dread to think how I must have looked before!!

My hair is just coming back,about 1 inch in places and white! I have a blonde wig and a brunette wig, I hate wearing them but you can imagine the looks my husband gets when I wear the dark one as I am blonde.(natural of course!!) I was lucky and kept some eyelashes and eyebrows but very sparse still waiting for them to start growing.

Look back and see how far you have come and be proud once your rads start the weeks will fly by and I’m sure the aches and pains will subside. I must be about 2 weeks behind you and am finding the fatigue/tiredness the hardest to cope with but going for rads every day doesn’t help.

We are nearly there!!
Take care

Love
Brenda x

Thanks Brenda and yes I should be glad Im where I am now! Prob just a shit, down day of which we all have many Im sure!!
Spoke to Onc yesterday and he said side effects ie aching, numbness could be with me for up to 3 to 6 months but will gradually subside…then told me of side effects of rads and hormone tablets!! Seems that you replace one lot of SE with another lol lol
Im sure it will all ease off and I will begin to ignore them soon

thanks again…Mega xxxxxxxxxx

Hi Mega,

Take heart - if you are like me then yes, it feels as though the dreaded side effects are there for ever, but then quite suddenly they DO go. I finished Tax mid December, and was still walking very slowly and painfully a month later, but then within the next 2 weeks or so (including the time whilst I was having my mastectomy) they improved immeasurably, and I now stride out with the best of them. I do still get sore feet sometimes, but hopefully that will fade with time too.

The runny nose went a bit earlier I think - sounds daft that I don’t even remember exactly when because it was such an unpleasant side effect at the time (especially when people in the street think you are crying), but I know that one day I realised I hadn’t had a runny nose or watery eyes, and that was it, gone.

Brows and lashes are coming back now too - not complete, but on their way.

Nails are still not right, but I guess it just takes a little more time.

I’m nearing completion of my radiotherapy now, and have found it so much easier than surgery or chemo. I am a little more tired (but not drastically so), and a little pink, but not itchy or sore.

I hope my experience gives you encouragement,

Good luck!

Julie
x

Hi Mega,

I so remember going for my rads planning about a month after finishing 4FEC and 4Tax - and having to travel up to London on the train and walk from the station to St. Thomas’s Hospital. When I arrived I was in tears as I could barely put one foot in front of the other or climb stairs and felt so exhausted! It did improve over the next few weeks (although over a year down the line I still get tired easily…but then I’ve only just finished Herceptin)!

The good news is it does pass, and you will feel better soon. I still have the periperal neuropathy in my toes, and I think this may be permanent, but like everything, I’ve got used to it.

My hair is back as you can see from my photo - even the curls are gradually growing out…and it wasn’t long after chemo finished that my eyelashes and brows made an appearance. One day I looked in the mirror and could see what looked like a thin line of eyeliner on my upper eyelids and closer inspection showed it to be my eyelashes returning, and a day or two later I noticed slight shadows above my eyes…my eyebrows were coming back too.

It’s about 16 months now since I finished chemo, 14 since completing rads and a few weeks since my last Herceptin.

I hope this helps - and good luck with the rest of your treatment.

xxx

hello

its great being able to look back at all these comments i finished 4FEC and 4 Tax last week waiting to hear when i start rads so still feel i can’t see beyond the cancer just yet but all you ladies give me so much hope and looking at some comments make me laugh out loud which is the best feeling in the world

thank you

rhian xxx

Hi there and thanks for all your notes. Since I posted I had good days and bad days so yes i realise the side effects will pass. I have spotted a couple of lashes and eyebrows are making a slow come back too so i live in hope!!
Sorry for this but i only seem to whinge whilst on here!!..but since starting rads last thurs (12th March) I seem to get really down and depressed about it. I should feel good that Im nearly over it but cant!! I think this is due to the travel to rads every day, I have got a lift this week except tues so may be easier but also they all told me - it will be very quick you wont be here more than 20 mins - yeah right - up to now Ive spent an hour each time!! Im sick of being poked, proded and moved about and stared at my 4 or 5 people at a time, I feel like a piece of meat!! Other people ive told dont understand this so maybe a ‘me’ thing but I get very angry and grumpy whilst there. I also think that I get down due to the location - I am at Christies whereas I had my chemo at a local hospital. I know this is a wonderful hospital but all i seem to see are very sick people looking really bad and people weeping from their bad news or experience and it brings my diagnosis all flooding back or I think Jesus I could end up being that ill and looking that bad!! I come home so depressed!! I also think Im getting that lymphoedema thing as since rads started by arm is swollen and more numb and stiffer than it ever was before ( had lymph nodes removed in Sept last year) When i mentioned the stiffness they just said ‘oh its due to having your arm stretched upwards on the machine’ Sorry but this is not good enough - it is my right arm which I rely on and dont want to lose any use in it Thank you!! Im going to tell them again today and see what happens, you could see the difference in size by Friday night!
Sorry for all the whinging just wanted to know if anyone else felt like this or had these problems and everyone here is fed up of me moaning lol

Mega xxxxx

Hi Megalady, think you and I must be somewhere at the same stage. Was dx’d July, lumpectomy Aug, mx Sep 3 x FEC and 3 x tax started October finished Feb. Started Tamoxifen just before rads. Am 9 of 15 rads at the mo. Have told all my nurses, onc, etc I don’t want to hear about se’s as sure as heck the minute the say what to expect I feel it happening!! So take heart things do get better. Have had a stiff arm right from mx and I keep on doing my exercises as they tell you. The tingling in your feet can be treated with vit B tabs, got mine from the chemo ward and have finished my prescription now-don’t feel I need them now. Hair is growing back but white!! eyebrows taking an age and eyelashes - do they do eyelash extensions? Would seriously consider. Hair free legs brill, but for how much longer? My energy level is coming back slowly, you have to pace yourself, when you are tired just tell the kids to move and have some ME time!! My taste buds are not good, everything tastes salty-even chocolate…but no weight loss darn!
Keep you chin up nearly at the end or our “journey”
Take care
jj

megalady - after I was measured up for Rads I had numb tingling arm and hand for a couple of weeks and was worried I had lymphodemia coming. I asked twice if I could put my arm down because it had gone completely numb from being in the same position for so long, but the nurse said, no you can’t yet. So I stuck it out - not wanting them to have to start again. It was very painful and I reckoned the trauma might trigger it.

It’s OK now, but I am worried that having to put my arm in the same position day after day, when I start Rads, that lymphodemia could be triggered.

How is your arm now?