Well what a day it has been for me today. Saw the Oncologist at 10.00am and she said she hadn’t got the go ahead licence to use the new drugs for my chemo today… Gutted…When she found out i had been having frequent headaches “ALARM BELLS”…She was not prepared to let me have ant type of chemo till i had had a CT brain scan
She pulled all the stops out to get me a CT scan at the hospital today… At 10.15am i had my CT scan… I thought the cancer might of spread to my brain. I went back to see the oncologist after the scan and to be honest i was a bit numb,i didn’t know what to think…
I walked into her office and she said “I cant believe your scan is clear, i was certain you had got secondaries in your brain. I am so glad i was wrong”…I was glad tooooo. What a relief !!!
Now we even have the go ahead to use the new drugs… YAHOOOOO…( the combination i am having is licenced for lung, liver & ovarian cancers) now it is licenced to treat my BC…
After yet another blood test and a long wait at 3pm i was given my chemo (carboplatin & vinorelbine) Got home at 6pm…
No side effects as yet, got my anti-sickness pills at the ready, but am hoping not to use them.
Caron i know what you mean when you just want everything to start, the waiting is terrible you just feel like “give me the treatment now…what are we waiting for???” AARRGGHH…
I have another one on 12th Dec and then start all over again on boxing day…Great…
AndieT…i hope your dentist visit goes smoothly.
I took my wig to the hairdressers and had layers put in it and it looks great…
Good luck girls… BRING IT ON…Shell.xxxxxx
I have to have Herceptin every three weeks for a year. At the moment I tend to only ask the questions that I need to know the answers to if you know what I mean.If my understanding is right the three week gaps between the Herceptin is quite crucial. The first dose is a larger dose than normal and called a loading dose. If in the course of the next year you miss one then you have to go back to the beginning and have another loading dose. If I have got that right we will be living the next year organised in three week slots. We have already got a temporary holiday booking in for next September I just hope it falls within the free period between hospital visits. We had to cancel this years holiday because of chemo, so I am already looking forward to next year
Shell you seem to have an awful day although it must be a relief that the chemo has finally been sorted out. If this is relatively new for BC have they told you what the SEs are likely to be? I think it is amazing that they managed to fit you in for a CT scan on the same day it was requested. I’m not sure my hospital could be that on the ball. They are very very good , the only problem seems to be the appointment booking system. The computer seems to go down very frequently.
OH has gone out for the evening with his Poker mates so I am taking the opportunity of having a girly pamper night. I am about to paint my nails, find some chocolate and wine and then use all the hot water in a deep soaky bath.
I had a girl’s night last night my friends painted my nails black, they look lovely and shiny, we also had face masks. They always come around to my house the night before i have my chemo to try help mr relax, its great.
Enjoy yourself…
The side effects are similar to the AC chemo i had, sickness tiredness ect…
I only had 2 x A out of 4 as my tumour doubled its size, they switched me to Taxotere, i have had 2 X Taxotere and my tumour is getting thicker. (it is mow 10cm +)…
I am triple negative so my cancer should react to chemo, as yet it has not so now i am on a new drug…
I just hope this one starts to work as this is my last chemo drug to try.
I will end up having a mastectomy but cancer will moat certainly be left behind.
My onc told me today that because of my tumours size i am highly likely to get secondary cancer at some point.
Why is there so little research (treatment) for triple negative cancers???
Hi All !,
one of the breast care doctor told me when they first diagnosed me that ALL Breast cancer is 100% treatable so don’t dispair Shell .
I don’t know what triple negative means? as nobody has told me about the difference in BC , I don’t even know what mine is ???
Shell when I went yesterday the nurse examined me and said that’s wide isn’t it ! ( TELL ME SUMMAT I DON’T KNOW ! ).
I hope your chemo starts working I really really do.
I am glad your scan was clear , I am worried about my scan which I still havn’t got a date for.
The chemo I amhaving for deffo is epirubicin & cyclophosphamide then next one taxotere.
This bit is for Andie have you had your tooth sorted yet? I am having a bit of trouble with my wisdom tooth ( I hate teeth ! ) my wisdom tooth is very loose cos I bit a bone in a rustlers ! anyway I couldn’t eat on it for days then it went loose then when I went to the dentist he said " that will fall out on it’s own " PHEW !!!
Now cos I had a filling in it the filling has come off now so I keep putting some temp filling stuff on it, I know I should go but my reasoning is if he said it will come out on it’s own then that’s what I am waiting for ! it’s not toothache as such it is more sensitive when the filling is not in place,
I might have to go in the end ! ( knowing my luck ).
Keep well everyone ( specially you Shell ) love Caron x
Yes Caron I braved the dentist yesterday and my tooth is sorted out temporarily. Where I have a temporary crown where the treatment is still a work in progress it has left a gap between it and the next tooth. Unfortunately a small amount of decay has started there and that is what is causing the pain. The dentist was very good. Instead of a proper filling involving lots of drilling and maybe making the gum bleed (not a good idea at the moment) she has put in place a childs filling which should hold until chemo is over.
You may find that the type of bc that you have is what they call inflammatory bc. Its what they have called mine and our histories seem very similar. My first chemo was AC your’e more on the ball than me - the a and c are two drugs I just trust them and have no idea of their actual names. I started taxotere last time, with 3 more to go. On the taxotere I also have to give myself injections for 6 days which came as a bit of a surprise. They are to boost production of white cells I think. I just do as I am told.
Off now to put up the christmas tree and lights. Roll on christmas
I don’t know they havn’t said what cancer it is ? Isn’t inflammatory BC one of the rare ones? god I wish I knew now !
I have had a massive row with my hub cos I sais I am getting this bag ready 4 ypstairs ( if im ill with chemo ) and he said " DO U WANT THE HEATING ON ?"
HELLO I AM ILL YOU KNOW !!
He said " you’ll be ok " so I said " oh dr now are we ?" so then he says I am only saying what other ppl will say " ! very nice so I am now ignoring him ( which he hates ! ) SERVES HIM RIGHT.
I will stay in bed now till tomoz I can’t be bothered now .
My sister in law came today with a massive bunch of flowers for me ( which has never happend before ! ).
My mam has told all the neighbours so they are all asking about me ( apart from to ME ! )
I feel really angry today i feel that he ( huuby ) doesn’t understand at all he seems to think it’s gonna be a walk in the park !
I’m sorry for moaning your all ill as well i am just so cheesed off atm !!!
might feel better later or tomoz ? love Caron x
Andie - yes i do have inflammatory breast cancer, it was only picked up once the tumour had doubled its size and the AC & Taxotere failed to work. I was originally diagnosed with Invasive Ductal Carcinoma… Aggressive, grade 3…
I am now on 2 chemo drugs that are given together. Carboplatin & Vinorelbine. They are widely used for lung, liver & cervical cancers not really for BC. I had to wait for a “go ahead” licence for my hospital to administer the drugs for my BC… What a wait that was…I had the chemo on Friday i go back next Friday for another one then start all over again on boxing day…NICE…
How far are you in your treatment? Glad you managed to sort the tooth out…
Caron - Same here… Neighbours ask my hubby how i am, not ME… How infuriating…
Your hubby is probably as scared as you are but trying to act strong & normal, they don’t know what to say and they too are scared of the unknown…My hubby was the same until i had chemo & he could the physical changes in me.
He now does everything when i cant… he leaves work to fetch/take the boys to school, he puts the washer on… i do the ironing…he cleans the house and cooks.When i cant get out of bed he waits on me hand & foot whilst looking after 3 boys and working… Hes one in a million and i am so lucky to have him…
I get so frustrated with myself though as im so independent and full of life, once the chemo side effects kick in i feel like a frail old lady… I hate it…
Andie & Caron i hope your both feeling well today. I am still in bed, hubby is at work til 2pm, the boys have had their breakfast and i will get up now…
Hi All,
Yesterday was such a downer !
My hubby made me sausages in gravy ( yum ) this morning which we actually have every christmas day morning for breakfast ( it’s our tradition ) I think he was trying to cheer me up, then my sis came with her bloke Gino ( he’s Italian ) and Gino gave me a lovely wig and a bottle of Ameretto ! ( yum ) I will not open it it is for xmas.
I must admit Shell I do as little ironing as possible ! got to go visiting now Sunday visiting GREAT ! , see ya all later Love Caron x
Monday morning, another week begins and hopefully my next chemo will be on friday depending on bloods on wednesday. That will be chemo no. 6 out of 8. Chemo had to come before surgery because of the nature of the BC. I hope to be having surgery february/march time.
My husband has been an absolute star. He was not with me when I was diagnosed but that was my fault not his. He had driven me to the hospital but because I was convinced I only had mastitis following 15 years of other bc scares I told him to go on to work and I would ring him later. As soon as I saw the consultant the bc nurse rang him and he arrived back very very quickly and he has been with me every step of the way since. He comes with me to the treatment room and stays until I am hooked up to the pump (He then disappears and leaves me to my book), and he comes to all the hospital appointments - as you all know there have been quite a few what with consultants, oncologist, scans and X-rays. He will do absolutely anything I ask and lots of thing that I don’t. We have been married for over 40 years and in the past he has had a couple of major health problems. He just shrugs and says this time its his turn to look after me.
I know what you mean by feeling like a frail old lady. The first week after the taxotere I had trouble wallking more than a few yards. My energy level dropped to just above zero. When I look in the mirror I see this person with no hair and really wrinkly skin. I think my skin has aged 10 years in 3 months. I hope it returns to what is normal to me once the chemo is done.I make the effort to put make up on every morning now which is really not my normal style. With no eyebrows to speak of and very few eyelashes I feel as if I have disappeared without help.
My family and friends all say on the good weeks I look really good, but they would say that just to make me feel OK. They just care and want to help in any way they can. This has really made me realise who my real friends are. One of our neighbours is a 75 year old lady with very bad knees. She phoned last week to say she was just about to do her own little bit of ironing but she was more than ready to add mine to her pile. Love Her!! Ironing is one of the household jobs I enjoy.
Shell will all your chemo’s be weekly?. Mine are 3 weekly. A friend of ours is receiving chemo following bowel cancer and he has chemo every monday.
Hi everyone,
Steve has gone away today to work ( he will be back midnight tomoz ) he didn’t want to go , but he has to we can’t live without money to pay the bills.
I have been having trouble with my very wobbly wisdom tooth ! so if it dosn’t stop the I will have to force myself to go to the dentist too , I am trying to ignore it but it’s getting harder, I wouldn’t mind but not long ago my dentist said it will come out on it’s own but now the filling has come out and i keep getting twinges now!
I am really scared of the dentist , well I don’t mind a filling so much but extraction makes me feel queasy just thinking about it, thats why I had it filled a few years ago cos it was starting to hurt so rather than have it pulled I asked him to fill it.
I have had a call off the chemo nurse today , I havn’t met her yet as she has been on holiday anyway she wants me to meet her on Wednesday at 11 am to talk more about the chemo and it’s effects , also to examine me so she can see if it is shrinking when I am having chemo.
I have been married to Steve for 15 years and we usually never argue but on Saturday I guess I was feeling sorry for myself so I took everything he said the wrong way,
I should realise it’s as hard for him as it is for me.
Shell are you feeling ok today ? I hope so.
Andie so you are near the end of your chemo then, has there been any times when they have had to delay your chemo cos of your bloods?
and is it as bad as I think what I mean is I think I am going to be really frail and weak , and I hope I am not sick and have the runs too?
I hope you are all ok today ? I think just about everyone knows now .
Take extra care LOVE CARON XXXXXXXXXXXX
Andie - I have my chemo day 1- day 8 then 2 weeks after start again, because I’m having 2 lots of chemo drugs i have to have a shot on day 8. Its still a 3 week cycle though. Has your tumour shrunk now ready for your op?
I am still in bed…Feeling sick and very tired, i slept like a log last night and have been snoozing all day, my hubby is at home with me,looking after me again. Work has been very good to him,he has been able to have time off when I’m ill and for all my appointments,scans,biopsy’s and oncologist meetings and he has been paid which has been a god send.
I have no family in Lincolnshire as i am originally from the west midlands (Shropshire). I have to rely on my hubby and his parents which have been a huge support. My mum, brother, sisters and 2 nieces are visiting us on Sunday so that will be nice.
Caron - Sorry you had a crappy day on Saturday…you will probably get more of those as time goes by.
You really ought to get that tooth looked at you don’t want it going septic…
Did you say you were starting on FEC? Have the hospital given you loads of literature to read, i remember coming out of the hospital with a huge pile of booklets & thinking “oh my god, whats happening to me”…Don’t read too deeply in to them as all cases are different. When you get your biopsy results back you should have a proper diagnoses and grading, do you know when those results are due?
Caron get that tooth sorted before you start your chemo if you can. Once you start chemo your immune system will be affected and as an extraction is classed as invasive if you get an infection you could be in trouble. Sorry to sound alarmist but you have the space to deal with it safely.
When my cancer was first diagnosed, by the time I started chemo my affected breast was hard, red, swollen and hot. By the time I got to chemo No. 3 there was an improvement and between 3 and 4 I had another MRI which proved it had started to shrink a bit. Now it is soft again, not hot and feels like the healthy one although there is still a very large mass which can be felt. This improvement does make it easier to cope with the chemo because I know it is working. That improvement was all while I was on the AC. I have now moved on to texotere so I hope the improvement continues. I am becoming more relaxed along the lines that the hospital staff know what they are doing and are woking for my best interest.
Up until now my chemo’s have all gone according to schedule, my bloods have been OK although I can see from my alert card that the levels have dropped considerably. I have my fingers crossed for this one. I hope to get it out of the way and move on. Chemo is different for everyone. My first one was nowhere near as bad as I expected. I was given anti sickness drugs to take as a precaution and tablets for gastric problems and tablets for constipation, and a mouthwash… My hospital appears to be very much on the ball anticipating what may happen. Chemo No.2 made me feel really ill although its hard to say how or why. I just felt like rubbish for about 7 days. Things got gradually better just in time to start again. The taxotere has side effects all of its own. On this site there are many threads regarding possible side effects and as I have only had one to date I am waiting to see if the SE get worse the furthur down the line that you are.
Together with the chemo that I am having I have to have steroids. They cause me problems in that I get really bad night sweats which wake me up so lack of sleep becomes an issue. Once the steroids are finished they gradually tail off and sleep reverts to normal.
I try to hang on to the thought that hopefully this is only going to last for a relatively short period of time - months not years and I can get through with things to look forward to i.e. holidays, birthdays and other family celebrations - I have 3 daughters all married with 5 grandchildren between them so there are plenty of dates in the diary.
I know I’m gonna have to get the tooth pulled ! like you said I don’t want a infection Steve will ring them on Wednesday ( If I keep wobbling I might be able to get it out ! )
Well I have had a phone call from the chemo nurse and they want me to go on Wednesday to tell me more about whats involved and stuff.
I am abit confused as to the FEC cos they said thats wot I am having first but when I went they said it was just EC ? so I don’t know if it’s the same or what ? then I will be on Taxotere after that.
My BC nurse said that my results should have been ready last Friday , but I was that worried about meeting the Chemo docs I forhot to ask ! DURRR !!!
They did give me some leaflets to read and I was looking at the side effects and stuff.
I did the facebook ! Andie are you on facebook?
I havn’t got a clue what I am doing the kids for tea today ?
Hope you feel better soon Shell !!! Love Caronx
Andie has the steroids made you put weight on??? I have put on a stone since taking them… i cant stop eating some times, and its always the things i shouldn’t eat…Cakes, crisps, ice cream…Mmmm…
Caron your BC nurse can give you your results if you ask her, she told me mine over the phone. It might be worth a try…
Thanks Shell yes I will wait till Wednesday now till Steve is home I also am definetly ringing the dentist on Wednesday I have to think that I can not risk getting a abcess in it while having chemo ! so thats what I am trying to convince myself !.
My BC nurse told me I would put weight on too ( great ! ) while taking the steroids I bet it won’t fall off after ! then she said I will put weight on cos of the menapause as well EVEN BETTER ! (not ).
Steve got me a piece of skate for my tea I love skate , not that I have it often .
I hope I can put up with this tooth till Wednesday ? it keeps coming and going but I have convinced myself cos it’s so wobbly it won’t be much to pull it out ? ( i hope not ) . love caronx
Hi
Hope you are beginning to feel a bit better Shell. Do you get a really bad taste in your mouth and nothing tastes right. I have put on a few pounds and I think the main reason for me is because nothing tastes as it should I am constantly eating to try and find something that tastes right. I try to eat sensibly because I also have a cholesterol problem but sometimes I just think ‘What the hell’ and get really fed up with trying to do the right thing. Also my very generous caring friends and family keep buying me chocolates to cheer me up. Well if there is chocolate in the house you just have to eat it!! It would be silly not to. (As you may have guessed I am a choloholic)
Sorry Caron I am not on facebook. From what I have gathered I am a bit older than you and Shell. Some aspects of modern technology have passed me by.
I’m at the hospital early tomorrow morning to see the Oncologist to check how things are progressing, then on to have blood taken to see if chemo can go ahead on Friday. Results tomorrow pm. then steroids thursday if everything OK. I will let you know.
Hi AyoJoy,sorry to intrude lol,just to let you know that EC is the FEC but without the F.Its three different chemos.F is 5 flourourical.E is epirubicin.C is Cyclophosphamide.I think there are quiet a few women on here having the EC combination.
Hi mell thanks for clearing that up for me I wondered if they wasn’t going to gice me the F ( DURR me ).
Do you know what type of cancer the FEC /EC are used on? I don’t know if mine is oestrogen pos thats all I am guessing it is cos they want to put me into menopause ,then it would make sence wouldn’t it.
How far in your treatment are you ? take care Caronx
Hi Caron,I finished chemo in March.I had 3fec/3tax.There are many combinations of chemo and your oncologist works out the best one for you.I dont really know what type fec/ec is used for,only that some oncologists give the F part and some dont.I am now taking tamoxifen for 5 years because I was oestrogen pos.I expect you are to if they want to put you in menopause.I was told that I would have 3fec/3tax as this gives more of a chance that one or the other will work,and also that fec/ec and tax has good results on node positive cancer.