Sissy, I have much more in the way of hot flushes for the first week to ten days after every chemo, including T, it was probably worse in fact, more frequent and intense. I haven’t sweated too much but the duvet is off and on all night! I have put a desk fan on the bedside table and that helps a lot. I haven’t got one but some ladies find a ‘chillow’ useful. You can get them online and I pretty sure I saw them for sale in the oncology department at K & C.
Nadz, sorry about the toenail… were you expecting it for go? How are the rest of your toenails and your finger nails? have you done two T’s now?
Red-robin (is it Vicky?) you are obviously very upset! I’m a bit confused, are you saying you didn’t get much benefit from chemo? And don’t they think you really need radiotherapy? You need your onc to give you some figures…mine does. I can’t be exact about the figures as they are filed somewhere but it’s basically like if I had just had surgery, I would have an 85% chance of still being alive in ten years, the combination of chemo and hormone therapy take it up to a 90% chance. I don’t know if you’ve tried Predict
( predict.nhs.uk/predict.html ) this an give you some basic figures but doesn’t include radiotherapy for some reason. Personally, I am prepared to throw everything the medical team have in their armoury at it, I want the beast possible chance!
Well calmer but I have decided to make a formal complaint about not being told earlier despite the fact they knew and I kept asking. I have no confidence in the oncology team at my hospital. Seem like a total bunch of incompetents. Couldn’t fault the care of the surgeon and the info given there but the chemo and radio doctors. Always had to prise information from them. This just takes the biscuit though. You can’t allow someone to think its chemo and done, then when almost to the finishing line spring radio on them. I haven’t had any more tests or anything. They have always known just didn’t tell me.
I think I will be asking for a second opinion too considering I don’t feel I can trust them anymore.
Sorry to hear about your toenail nadz xx
Oh Vicky. I’m sorry to hear you have been messed around like that! Surely they would have needed some form of consent?
My toes have been feeling tender since my last fec. Since the first T they got loose, now with this weekly one it got all pus and squishy, so removed part of it.
Getting my head shaved next week, as I’m now just walking around with tufts sticking out of my head. Look like a tubby old lady or something.
Well they do need me to say yes or no. He has started the proceedings for it but I can still say no. He didn’t give me a choice about that even though I said I didn’t want them. I can still tell them no apparently.
BUT the thing is they knew ages ago and I kept asking to be told and I quote “I’m the chemo doctor not the radio doctor I don’t know”.
They have multi disciplinary meetings so everyone is there discussing the case. They discuss everything together and then there are your notes. But apparently noone knew. Well it’s ball that’s what it is.
To be told only a few weeks from end of what you thought was the finish line to be told er no we highly recommend radio isn’t good enough.
Thats why I am going to make a formal complaint and get a second opinion.
Hi Red Robin, just dropping in form the Jan thread.
I completely agree with you - if he had your notes then he would know! What surprises me is that you didn’t have a treatment plan written for you before chemotherapy started after your operation when they knew all the full facts? I was given a written plan with my diagnosis and further treatment clearly written: chemotherapy, radiotherapy, hormones e treatment (7 years) 6 monthly check up with surgeon and yearly mammograms for 5 years.
Is your chemo doctor not your oncologist? As far as I was concerned the oncologist is in charge of all your treatment following surgery - chemotherapy, radiotherapy and hormones.
While I’m happy I’m having everything thrown at me, it must be awful to think you’re at the end of treatment only to be told that’s not the case!
Really hope you come to terms with it all soon xxx
Thanks Kim. Yes the “chemo doctor” is the oncologist. He also told a friend I made in hospital who had her op the day after mine, (she got ahead of me because I had an infection after op) that she was due radio after. I have not been given any kind of treatment plan with oncology. I did with the surgeon to how my op would go. Can’t fault him at all. Best surgeon ever. But oncology. I just feel like they don’t know what they are doing and are guessing. Hoping to go see my gp today.
Xx
Yes please Gillian. I haven’t been given any information on rads. All I know is what I have read myself and the limited 2 things that the radiologist said. That it causes skin irritation like mild sunburn and long run the tissues will get tight and ruin my reconstruction. Well if thats the case what was the point of having a full masectomy and reconstruction?
I have very fair skin being a red head, that has always been sensitive but after all this now is super sensitive. My skin is shot already with driness from the t and blistering from the picc line dressings. I can’t be more than 10 minutes in the sun before this all kicked off without sun cream in the summer or I burn. Also I know in rare cases the radio can actually cause cancer. What with my genetic results I am worried it puts me at risk of being that rare person. Or I will have bad burning from it or both. Not to mention the only hospitals that do it are 23 or 24 miles either direction.
I just don’t trust them up there at all anymore. My entire treatment since the operation seems to be pure guesswork on their part. I have no trust in them.
Hello December ladies, thanks for all your help and advice so far, I have another question! I’ve had a bit of a bumpy feeling rash appear on the hand of my non chemo arm and it’s a bit itchy at times, is this another T se? Has anyone else experienced this? The bumps seem to be under the skin xx
I had something similar but on both hands. Quite small, slightly red and firm little spots and under the skin, that were quite warm and itchy. It was more three or four spots on each hand than a rash. They started after the first week or so, lasted a few days then disappeared. I didn’t phone anyone as it wasn’t severe and they didn’t break the skin so I wasn’t concerned.
Just seems to be another strange side effect…you certainly know you’re having chemo with T!
I don’t know what it is but I have been itchy all over the place. Especially my hands arms and face. My skin everywhere is shot to pieces and dry. My hands look like my nans did in her 80’s.
Fed up of all this.
Thank you Tina and Amanda, I called chemo unit, they said go to GP. Went to gp and had a chat about various bits and pieces, he himself has had cancer twice over the years and had some of the same chemo we’re having so we stopped a few SE stories. He says the under skin bumps are hair follicles reacting to the T, also have s rash under armpit as well. He had a look at my other arm which the chemo unit are treating as a thrombophlebitis (even though no clot has ever been seen on the ultrasound) and straight away said it was phlebitis/cellulitis and my veins reacting to the drugs. He’s given me some steroid cream to use on the rash and to rub on my phlebitis xx
Yes thanks Fred. Roast turkey dinner, 38 mini rabbits and eggs hidden around the downstairs of my house kept the kids busybfor half an hour. I hid them really well ? Then another egg hunt at the pub down the road. Left a bit quick though, full of undesirables.
Lots of chocolate too!
Did you have a good day? Xx
hi all . well i rang breast nurse line today and got put threw to chemo pager. after some talking it seems that i started chemo at 12 /stone someting. i have not been weight every during treament. i am now 9.11 stones .she thinks that i have been od’ed on chemo hench sleeping around 22 hours a day .so next time to menchion this at bloods to get it sortted .
Hi Fred x im weighed every 3 weeks at the start of each cycle and im asked in between if I think I have lost/gained any weight your dose is calculated on weight partly so they should ask x tell them you havr lost a significant amount of weight
Hi Fredflowerpot, yes like Jen weighed every three weeks at ‘bloods and assessment’ up until now, my weight has stayed the same but this time I think I will have gained quite a few pounds!
It’s not surprising that you will have lost such a lot I’d you have been sleeping so much! Hopefully they will weight you at your next assessment and make sure your oncologist is tools so they can calculate a lower dose suitable for you lower weight.
I had a good Easter with family here including my two year old grandson but it has been quite tiring and busy and I’m not sleeping well for some reason.
Sorry to hear that Fred.
I haven’t been weighed since 2nd fec. Before that it was after my op. Sounds like another thing they are bad at here.
I lost weight a bit during fec I think. Jeans definitely felt looser. Think since t with steroid change it has all gone back on and more. I have what I call steroid face, all fat and sort of puffy looking. Definitely fatter all over. No wonder I don’t feel like me.
Feel fat, have hair I don’t know what to do with as can no longer comb over to hide patches so wearing bandanas, very muted taste, definitely not as fit, and chemo makes my reconstruction feel like a rock strapped to my chest.
God do I have a lot to sort before I can feel beautiful for my wedding in 2017.
Amanda I am also not sleeping well. I think for me it’s knowing the poison is coming again kn Friday and spoiling 2nd half of the easter break for the kids. I won’t be up to much. Also all this messing with my mind that my onc team seem to have been up to. Can’t wait to get a letter from the Royal Marsden to get my 3nd opinion.
I think once this last chemo is over I will go and join a gym or something. Can’t wait for the picc to come out so I can go swimming too. Not sure if it is possible with rads so will make sure I sneak in a session before if the Marsden say they recommend to have them.
Don’t know how much I weigh right now but feel like I am at my heaviest ever without being pregnant.
Oh thats another thing. I hope this zoladex has worked to protect my fertility. Got an injection today and then I believe one more in 4 weeks time then it stops and I guess I will find out if my periods return and it worked. Feels like a lot of people I know are having babies at the minute.
Sorry for the ramble. Guess I needed to get all that off my chest so I can carry on with the day. Xx
Hi all, hope you had a good easter? I sadly was too unwell to enjoy it and partner is away,but feeling better now, just in time for the next weekly dose.
Talking about weight, I’ve gained nearly a stone so far. which means nothing fits me, can’t afford new clothes, and my mood is getting less sunnier, but I think that’s due to being by myself.
I’m shaving my head tomorrow as the hair I have left isn’t doing anything but being a mess.
Hope the fertility works for you Vicky, sadly I won’t be having any of our planned children due to this but I’m happy that it will work out for someone else xx
Good to hear Tina that you have been having a good week! And the last cycle?! That’s great xx