Hi sophie, yes, couldnt believe it after the wle and snb when i went back for results and they told me i needed a full mastectomy and ac. Was completely knocked off my feet. Its 4 weeks now since the mx and i’m doing ok…arm /armpit is very numb, swollen and nerve pain, but not as bad as it was. Cant bear doing the regular exercises as dont like the twinges, pulling sensations etc, but am using my arm for everything,so am kind stretching it!! I’m making progress! My sentinal lymph node was positive to cx but the rest were clear. Will need radiotherapy and tamoxifen after chemo.
Am going in tomorrow, and sounds like it could b a long day! Kathy x
Good luck tomorrow Kathy, I’ll be thinking of you! I know what you mean about the exercises - the one where you put the ‘bad’ arm against the wall and hold it is agony… my six year old is my personal trainer though and nags me until I do them… so needless to say, I only do them when she’s at home from school!! I’m using my arm as much as poss though - not heavy lifting, but making myself stretch to reach things… oooh! I’m sure I can feel tiny ‘strings’ in my armpit, but they don’t extend down my arm. The worst for me has been the burning/tingling in the back of my arm, but I don’t think it is as bad this week, and when it does get back, a tubigrip along my arm brings some relief.
I just want to be able to sleep on my left side again!! Esp. with the PICC going in the right, how am I going to curl up?!!
Sophie xx
Shirley - I have a long list if you’re off christmas shopping, lol…
Sophie xx
hey triph,
i had them same pains, they were horrible, but one day they just went, i developed cording also as i hadn’t kept up with the excercses, so carried on with nufofeon. and both went, it did at times feel it would always be there.
the shooting nerve pain when i moved my shoulders in the warm up!! and the feeling of someone splashing water on down my arm.
good luck kathy, hope you get on ok xxxx im on fec, rads and then tamox x
Yes, the splashing water thing is SO strange! I didn’t know how to describe it before! I get that occasionally when I’m not even doing anything - sometimes it almost feels like a sweat trickle down the inside (yuk!), but I don’t think I’m actually sweating from under that pit at all!! (Or should I say perspiring…lol). I wonder if that will come back? Be quite happy if it doesn’t!!
Glad to know your pains just went one day - I’d hate to be stuck with this feeling, and all the info I’ve been given by hospital is so vague - strange sensations that you will become accustomed to over time - NO!!! I don’t want to become accustomed to this!
Sophie x
honest sophie, it was so odd, at times i would be woke up in night with pain and tears. but i stuck with the exercises and honestly ne day i thought, oooo its gone.
BUT i was told to still do the excersices to prevent lymph fluid build up and to always be careful with affected arm. don’t rub hard with towel , if you put cream on rub upwards. xx
Dear all,
Just an update for you all, I’m currently sat in hospital wired up to an ECG as I phoned and asked the Onc nurse if a racing heart was normal so she asked me to pop in to get everything checked… Everything ok but they’ve wired me up for an hour or so to see if they come back.
Also bad upset tummy so have been pescribed imodium so here’s hoping I feel better soon!
Hope everyone is having a good day!
Sarah xx
Oh Sarah - you know how to live it up, don’t you??! You poor thing, hope everything stays ok with your heart and the immodium works fast. You’re missing house gift on telly… Hmm. Maybe hospital more exciting after all!
Sophie xx
Hi Sophie,
Back from hospital now they couldn’t find anything wrong just feel very tired now…
But just got in in time to watch Dickinsons real deal, gosh that man gets more orange every time I see him! Hehe…,
Sarah xx
Good luck girls
Don’t want to interfere but I’m over two years out from chemo and it’s a bit like labour - you soon forget the detail.
It’s not pleasant but you will get over it and you’ll be back on here giving advice to the newcomers.
Good luck and hope that 2011 will bring ‘new beginnings’.
Mal
Hello everyone! I’m new to the forums - will be saying hello on pink road thread too. I’m 37 and was diagnosed on 13 October this year - two lumps in breast, one in lymph, plus pre-c in ducts, all on right side. Having chemo first and surgery after.
Second chemo today - am on new drug trial at the Royal Surrey in Guildford so having carboplatin plus doxetaxol combined with herceptin and its new sister drug pertuzemab x6. It’s a long day every 3 weeks - 11 hours for the first one but no reactions so they will speed everything up slightly today. Couldn’t sleep so have been up since 4.30am! My two little ones (4 and 2) are still sleeping and it’s 6.30.
Spent most of last week in hospital after white cell count dropped really low and I got quite ill so from now on I’ll be having mid-cycle injections to stop that happening again, phew!
I’ve had some great news this week - the lump in my lymph has disappeared after just one chemo and the feelable 4/4cm one in my breast has shrunk considerably! My consultant was amazed and said he’s never seen such a large, quick reaction. Whoo hoo!
I’ve been blogging about my experiences so far on pinchypants.wordpress.com and am finding it really therapeutic.Hope you like!
Good luck to you all and catch up soon x
Pinchy xx
Hi, have just about returned to the land of the living… had first dose of fec on thursday after having hickman line (yuck) and liver scan… been really rough with hot flushes, racing heart, nausea etc …feeling bit better today? am i normal, or just unlucky? kinda wishing i didnt hav this hickman line in. Feeling a bit sorry for myself. Had horrible dreams about my hair falling out too! Am going to have it chopped i think, if i can muster the energy to get to the h/dressers… xx
Hi Kathy
Glad you’ve got the first one done. I kept a chemo diary, just a spreadsheet on my laptop which I entered se’s, tabs taken, how I felt. It helped with each cycle if I felt poorly to look back and see that this se only lasted a day or two, or last time I what I tried and whether it helped or not.
Take care
Ali.
x
Kathy,
I’m a few days behind you - so how are you doing? I’ve just had all my hair cut v. short as I can’t bear the thought of plugholes full of hair!
Ali,
Did you feel worse around days 7 - 14, then better again? This is what I’ve been told to expect, but not heard from anyone about different ‘patterns’. I feel so spaced out (first FEC last Tuesday), but I think this may be 'cos I’m drinking 3 litres of water a day - which I hate - and I’ve heard you can get lightheaded from this!
Annie
Hi Kathy,
Im on 6 x C and Tax, was originally on 3xEC 3xTax, but i had a reaction to E on my heart so my onc had to change my regime. Im day 13 post my 1st tax and all your se’s sound similar to mine, racing heart being horrible i ended up in hospital on an EGC as i was told that wasn’t normal??
Not looking forward to my 2nd tax on Dec 21st as it will defo have a big impact my xmas 
Sarah X
Hi Annie
Just had a look at my diary and the se’s split into 2 sections for me, the nausea, constipation, inability to sleep or concentrate and feeling rough were days 4-7 (counting day of chemo as day one) after that there was a week of feeling off colour, headachy, tired, breathless if i tried to run up the stairs, sore mouth and taste changes which gradually got better over the week. Chemo day for me was a Tuesday so i counted that as week 1 (don’t plan anything and meals that can go fron freezer to oven which my 17yo daughter could do), next week was week 2 (starting to do things again and could plan things for that weeekend) week before next chemo week was week 3 (week I could go out, plan things and stock up ready for week 1).
I didn’t have all the se’s each time and found 2 & 3 the hardest for me, 5 & 6 were much easier. Nausea and constipation were bad for the early ones and the sore mouth for last 3. Got given corsodyl and difflam mouthwashes by hospital but did find that chilled white zinfandel swilled around the mouth had the same numbing effect on the ulcers and sore gums and tasted MUCH better!
Hope this helps and if you get the chance spoil yourself on your good days,
Ali.
x
Ali,
This is just what I was looking for. I know we all differ, but having some anchor helps.
Also helps me to set expectations for kids coming back from Uni for Christmas - in terms of how I may look/feel.
Thanks for your help
Annie
You’re welcome Annie.
I’ve just finished FECx6 and am about to start rads with a return to work sometime in Jan or Feb depending on how rads go and how I feel.
Am planning to keep my diary going re rads and hair growth so anytime you have a question just post or pm me and I’ll answer as best I can from how it went or me. Just remember this is a road that has an ending, it feels long at the beginning but now it seems for me to have gone very quick. I started chemo at the beginning of x factor and had worked out that chemo would be finished for me at the final, which in August seemed ages away and yet now I am watching and waiting to find out who is the winner!
Take care
Ali.
x
hi, had my hair massacered yesterday by hairdresser so now look like pat butcher…but such a relief to not hav to worry so much about it…when it starts to fall i can just stick hat on…and showering is sooooo much quicker!!!
Have very horrible taste in mouth last 48hrs…everything tastes yuck!
Hi Kketchup,
Yes I had a metallic taste in my mouth, but it seems to have past now, I’m day 14 post tax1.
Well done for having your hair cut short! I had long hair which I’ve had cut into a bob, but am just starting to malt everywhere so will have to take the plunge soon and shave it off, but can’t seem to muster up the courage to!
Sarah x