Hi everyone,
It’s hard to keep track of messages on here as there’s no link or save button to it but here goes…
As i’m about to start my treatment with chemo it’s all new to me as yet. This is a list of the drugs which i will be given and wondered if anyone will be having the same as myself?
Adriamycin,Cyclohosphamide and 5-Flurouracil (which are all greek to me, but will look them up.)
I have seen women mention cold cap, Can someone explain what this is for? or have i picked it up wrong?
If there is anyone who is about to start treatment like me and would like to get in touch please do.Dee
AH… think i have just found the link button lol…
Hi,
You could try hitting ‘bookmark this discussion’ at the top of the list of threads to help you remember where you have posted previously. It is a special button for those of us whose memories are caput at present!! Most of the drugs are described by their initial so AC would mean cyclophosphamide and adriamycin for example. A lot of people have FEC which is epirubicin instead of your A.
The cold cap is a cap/helmet kept at minus 3 which you wear if you want to try to save your hair, while in the chemo unit. Some drugs always make you lose all of your hair but others just thin it. Well thats the idea but it works differently for different people too. This is quite a personal decision and also depends on which drugs you have. The bonus is some hair, the downside is having to be in there longer as you have to have it on for about 45 mins before you start and 2 hours after. There is also a debate about the fact that it stops the chemo reaching your hair follicles, it is not going everywhere in your body. I wore it and have not worn a wig or scarf once yet and my hair is coming back fast now I am on CMF and hase had 5 out of 6 doses so far. Mind you it has looked terrible!! REally terrible.
Lots of luck with your treatment and shout and someone or many people will be happy to help. My next dose is 16 Sep and then 23 Sep and I go through till November on the TACT2 trial
Love
Lily x
Hi dee
I start my treatment on wednesday 10th… 3 fec 3 tox then radiotherapy…
I will try the cold cap … I do suffer with headaches a lot and I heard that you get brain freeze.
I will try, If I cant take it it will come off. Good luck with your treatment when do you start.
Love jill xx
hi
Theres a great site that tells you what the side effects that each chemo gives you and a load of other things you might like to knpow it explains things so that they arent to scary and easy to understand. you will find that Adriamycin is DOXORUBICIN. so look that up and it will tell you the side effects acording to the site you will lose hair on this chemo but using the cold cap can reduce the effect but there are down side to this too the site will explain
it.About Cancer | Cancer Research UK
Good Luck
Joanne
hi Dee, i’m having my first chemo tomorrow the 8th September.
I’m having FEC and am terrified. I really dont want to have it and i’m still feeling slightly surreal about the whole situation.
I cant actually see myself sitting there and offering up my arm to pump that awful stuff through,but i’m also too much of a coward to refuse. At the moment i’m feeling like a lamb to the slaughter.
I think it’s been said on earlier thread that when you have chemo for rather small benefits it makes the decision harder,i think the only reason i’ve been recommended to have it is because my tumour was 2.5cm and i’m 45yrs old.
I’m sorry i’ve intruded onto your thread as i’m not being very positive,it’s just i’m counting down the hours now and i feel i want to share my fears with someone.
I’ll let you know tomorrow how it goes.
Lily: I didnt quite understand the bookmarking,i dont mean to sound thick but i cant see any button saying bookmark.
Take care everyone Traceyxx
Hi,
when you come on the site, you hit discussions, then this is on the undergoing treatment chemo part. At the top above 'categories there is a word ‘bookmark this discussion’.If you click on this now while on Cbr55’s thread it will appear blue so you can see where you have chatted to people before. Give me a shout if you still haven’t spotted it.
Jill the cold cap can be uncomortable for the first 10 to 20 minutes and then you don’t feel much at all. I just had 2 spots on my forhead that ached for that period of time then ok for all the rest of the time. You do have to be prepared for it and get whoever goes with you to distract you. Also you must go in layers to keep warm. In particular even on hot days I went in jeans and short boots and 3 layers. We have air con in our unit and when the staff all got hot I had to go under a blanket and add layers. A scarf for your neck is a must as occasionally a bit of ice pops off and shoots down your neck! I used it 4 times when I was on epi.
Anxious you dx sound very similar to mine and I have 7 months of chemo. In our area everyone under 50 is getting it. Try not to be too anxious, easier said than done I know. You do get a good feeling when the first one is under your belt and you know that at last something is actually zooming around searching out any microcells that they might not be able to spot. After that you just put up with the side effects mostly and if you are lucky there are none or just mild. Then you can moan a lot and let everyone fuss you. Then you get better and go out and have fun. Then you go round the circuit again. It is not fun but it really is not that bad going to get it done, if you can stay calm and not get too wound up before you get there. One the cannula is in place you just sit there and they push it into the tube. Good luck, will be thinking of you.
Cbr55 when do you have the first chemo? If this week, good luck and hope it goes well for you too
Lily x
Anxious.
Very best of luck for tomorrow - I start FEC on 17th Sept so would be interested to know how it went if you feel up to it afterwards.
Will be thinking of you and sending best wishes.
I have posted this for new user Fiona.
Jo, Facilitator
Hello everyone, I’ve dipped in and out of the forum since being diagnosed in July, but not posted before so hope you are okay with me coming in to this thread too. My hubby bought a new laptop for family and me primarily for when treatment started. So, I can now sit on sofa or veg in bed and get onto internet and I can now spend ages on the forum with other girls in same boat!
I had WLE July on 24th and SNB. Grade 3 and invasive. Hadn’t got to lymph nodes, thank goodness, but still waiting for HER2 results Praying so hard that it’s not. Tumour was 1.7cm and have been told it was excised successfully. I only found lump about 20th June. Hadn’t felt anything before, so it seems aggressive was an appropriate word!
Anxious - I too am about to start my first treatment tomorrow 8th too, AND I’m 45 too, AND been told I should have chemo - to ensure that any stray bugger of a cancer cell is in my system will be zapped. So, I think you and I are embarking on a similar journeyI I wonder if you are going to same hospital? I live in Stockport and chemo sessions are on mondays)
I agreed to go on the TEC2 trial so I have no idea which of the four strands of treatment I will get but have been looking at all the posts about the trial. I’ve been okay up to now - almost as if it is happening to someone else. Getting all the info, reading up on it (scaring hell out of me sometimes) and here I am now -with 12 hours to go and feeling shaky, have a tension headache too. But also have had sinusitus all week and been on antibiotics this week before D-Day (as we’ve called it here) so hoping that I’m not too ‘ill’ before I even start.
Reading about side effects that have affected girls on here has made it all ‘real’ rather than just the black and white leaflets that have been given to me. It’s really happening, but I think with all the help and guidance and support on here, I know I shall be able to get through this.
Stopping work last week, only 1 week into the new school term was really hard for me and I have felt pretty low as I won’t see the children for probably a year. I was told -no way to going to school (I am a Teaching Assistant at KS1 (5, 6 and 7 year olds) due to bugs galore. The Research Nurse and BCN joked and said I probably had more immunity than they did…and then I go and get Sinusitus!! Any way …I’m babbling.
My appt is 1pm and I imagine I will be there ALL afternoon. I will let you know how I get on and hope we both do okay. My thoughts are with you and anyone else who reads this post.
cbr55 . Dee I know my drug ‘cocktail’ is going to be a bit different to you but would love to keep in touch and we can commiserate, laugh, worry, giggle …you name it. That’s what women do best I believe - helping each other, especially through tough times.
will post tomorrow…Fiona
Hi,
just wanted to say good luck Fiona and hope it goes smoothly for you. Just shout with any side effects, but mostly drink tons on the day and afterwards to flush it out your system. Did you mean the TACT2 trial ? If so I am half way through and got arm one, the long country route, but is going well. You start with epi and you need to get your urine back to a normal colour asap by drinking, as it irritates the bladder. I also swear by eating lots to keep your stomach reasonably full before it heads that way. Constipation is an issue with epi so react quickly if it affects you that way. I got in big trouble and would not want anyone else to go through that.
Hope that did not scare you, just a few ‘been there’ tips and lots more on other threads for you to read. I work in a school too and have been off since end of March. You can do this. Lots of hugs for tomorrow. Tracey hope yours went as planned today and that you are feeling better that one is out of the way and on the countdown.Good luck CBr55 whenever you go in.
Lily x
Dear Lily thanks for that about the water as i was going to ask how long i have to keep the extra fluids up,i was dreading it being for 3 weeks!
Fiona i live in Devon so quite a way from you, how did you get on,honestly i was so so nervous.I dont get hysterical i just get very inward,i can hardly have a conversation and i went very cold. The chemo nurse was absoultly lovely from the Phillipines,she said she could feel how nervous i was.
Well my main problem was that i have “very delicate veins” their words not mine, and that in itself was a problem which was then compounded more by my sheer terror! The chemo nurse couldnt get the vein in as because i was scared this caused my small veins to contract further,and then being cold because of fear that exasperated it more. She got another member of staff to attempt it which worked for a short while,but then had to get someone else to sort it out again. So all in all it took about 45mins just to get going. I had to put my hand in warm water first to try and make the veins come up then later she got a hot pillow type thing and wrapped it round my arm to warm me up,and i had a blanket over my legs. The moral being i shall go to my next one wrapped up warmly!
If one more person said to me "you’ve got really small veins,or you really are tense arent you i will scream.
Anyway we’re going to see how it goes next time when i will hopefully be more relaxed,otherwise she did mention putting a pickman line in,i dont know if that would be for the best.
Right now to the crux of the matter,after getting myself all worked up it really wasnt that bad. I know i’m saying this only 2hrs after its finished and i may change my mind later,but i had in my imagination that i was going to be all lightheaded and even pass out,and every bone in my body was saying walk away,but i stepped up and i’ll tell you what… I FEEL BLOODY PROUD OF MYSELF. sorry i was brought up to be more modest than that but thats how i feel and i would say to anyone else who is feeling right now how i felt, you can do it to the fear is far worse than the infusion.
Well i’ll let you know how i feel in the next few days,this may be false bravado when any side effects kick in,and of course its a culmative treatment so i know it will get harder. But i’ve cleared my 1st hurdle and i’m going to try and enjoy this evening catching up on my backlog of Desperate Housewives.
Thanks Sunny1 for your kind wishes much appreciated and lily i’m going to try out that bookmark so that i can keep this thread which i hope becomes as sucessful as some of the others because it’s nice to keep in touch with people that are going through it at the same time as yourself.
Hi all, spent ages typing up response to first day of chemo etc and had error in posting msg. I just haven’t got back to it since…so
Had a 'melt down when got to the Chemo Ward. It all just became so ‘real’ and everything else up to then had been so similar to previous ops i had had earlier that year. (went info arthroscopy on knee and sinus op) Go in get it sorted and out recover and then back to normal. The chemo bit or the thought of it and the general knowledge that you are going to feel pretty yuk just hit me.
Anyway after big sob, probably a release of all the tension building up over the weeks, was ok.Wasn’t fussed on the cannula but, but you know in the scheme of things. ANXIOUS, I feel for you when you said about your veins…I promise I won’t call you delicate…just Gutsy instead.
actually will have to come back to this feeling exhausted. fiona
CBR55 where are you? have you had your 1st chemo yet,if so let us know,hope you are keeping well.
Fiona i really feel for you i can imagine how your feeling right now,exhausted,i,ve just come out of that after 3 days of feeling absolutely awful.
I was sick on Monday night which to be truthful was my own fault as i ate like i would have if i hadnt had chemo and i paid the price. Tues and weds my oh had special leave to look after the children and that was much appreciated as i was really struggling. Started to feel a bit better yesterday but today is the first day ive been able to eat properly,befor i,ve only managed potatoes,eggs and cereal.
The strange thing that ive found is that my chemo is adjuvant and therefore precautionary,and yet because it has made me feel ill this is the first time that ive actually thought i have cancer,when in reality i no longer have it as it was removed with the surgery. I have dark thought coming into my head about what if… and yet when i had the cancer i was able to go into a sort of denial,i suppose because there was no symptoms. I really worry that it will come back,i dont think i could go through all this again.
love Traceyxx