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hello! I have my 1st EC chemo on wednesday. I am at the day unit today @ 2pm to chat about it all! this is my 2nd post regarding this and im anxious to hear about how others coped!
I would just like to hear about others experiences with their 1st session and advice on what questions i should prob ask the nurses today. my tumour was removed and nodes clear. this is just a clean up for me.
my main concerns are hair loss and sickness. i know everyone reacts different but i am a little frightened of losing control of my poor body! do all hospitals offer cold cap and wigs??? whats the best advice to take??
im constantly confused!!! haha!!!
I hope all goes well for you today with your appointment. I finished 6 (FEC) chemo treatments in January of this year and I am now having herceptin as my cancer was HER 2 pos.
I was bothered by the two things you mentioned and that was losing my hair and sickness. My first treatment went fine but I did feel nauseous the next morning and I found myself laying around on the sofa as I wasn't interested in doing anything. This lasted for 3 days and then I was fine. I was not sick. On my next appt with the oncologist and before my second treatment I told her that I had felt this way and she gave me an extra tablet which I was to only take half of each morning and evening for 3 days after the treatment. This worked as I never felt as bad again.
I tried the cold cap to keep my hair which is (or was) very thick and shoulder length. I managed two goes with the cap but I hated it and decided on the third treatment not to have it.
A wig lady was always present at the hospital on treatment days and I purchased one from her on my first session with chemo. I now have two the same as the first is starting to get tatty. My hair came out finally just before my fourth treatment but it is now growing back. I have to say the wigs are fab and I am always being complimented on mine. I was lucky as it only took a few goes before I found one I felt comfortable in. Make sure you are really happy with yours if you decide to buy one. Mine was £60 which was a little bit of a shock but I don't think I had much choice!!
Honestly none of it is as bad as you think it will be...
and it goes fast!!
Hi Clair, I had my first FEC treatment last Thurs (3rd March) and the administration of the drugs went well. I opted not to have the cold cap as I don't have thick hair...so I have had a number 2 all over to prepare and I love it!! Today I have got hubby to take me down to a number 1 and again I like it.
Side effects for me have been headaches from hell and feeling very sick...even the anti-sickness meds mae me feel sick but I am persevering with it. I am also sleeping for England....very tired all the time...can't wait for the ulcers and cold sores to erupt lol.
I am 1/6th through (20% done) so I try to hang on to that...but I must admit I am dreading the next few months if I am to feel like this or possibly worse.
Good luck for wednesday, and if it's any consolation, just reading on these forums you'll see that most people sail through the treatment (I'm just a wuss!!!) Take care hun x x x
Hi, you're in a similar position to me this time last year almost exactly! I was on the EC chemo - the oncologist described it to me as his routine cocktail, which didn't really make it any more appealing :-) We discussed the side effects and it was agreed everyone is different. I took the steroids and anti sickness that they told me to at the right times, and to be honest I got through the six sessions fairly well. My hair did fall out because I did not opt for the cold cap (we shaved it, and I got a wig which to be honest was too hot - I stuck to the headscarves for the month or so when it was really bald), but sickness was not an issue for me. The worst was an acidy reflux type thing -but my friend who had the same as me didn't get that - we're all made up differently. Just see how it goes and don't forget to ring the breast care nurse or the hospital with any concerns - they won't mind at all!
The chemo did make me slightly more tired especially as time went on (couldn't stay up partying till the early hours!), but I carried on working at my desk job and just kept an eye on myself. Allowed myself the luxury of going early if I felt bad, that kind of thing.
I got my wig free by the way - I live in Birmingham. Think it depends on the hospital. And don't forget your free prescriptions and free car parking!!
I'm having my 5th (out of 6) chemo on Wednesday and I cannot believe how quickly it has gone by. I remember dreading it and i really did not know what to expect when I began and was preparing myself for being laid up in bed/in front of the tv being tired all the time and generally looking really rough!!
However, for me this has not been the case, thank god! I have had virtually no side effects apart from horrible constipation really and that horrid taste in my mouth but it does not last very long.
I think like everyone, I was most frightened about losing my hair - however I have been having the cold cap every time and I still have my hair (it is going a bit thin now though!! I did lose a lot at the beginning and have gone from having really long hair, to having a cropped cut, which I am used to now (I started my chemo 113th dec, so that is a good while to keep it). For me, getting a wig was not an option as I looked like a drag queen!! haha and they really did not feel comfortable. I have seen some brilliant wigs though!
I know everyone is different, but if you can handle some brain freeze (which is really not that bad) then the cold cap is worth a go, even if you don't get on with it in the long run. I take some painkillers before having it and try to distract myself throughout.
Hopefully the cold cap will be ok this week, although I always go in worrying that the brain freeze will be too hideous - it's normally not and numb within a few mins so I cannot feel anything.
depending on how many chemo sessions you are having, you may want to consider having a PICC line as well, so you could ask about that too as it is a much better, hassle free way to get the drugs in!
Lots of luck with your treatment and stay strong xx
Sorry I couldn't reply before your appointment today. I lost my message twice. I hope it went well for you and that you have been reassured somewhat by the Oncologist, about the start of your treatment. It's good to hear surgery has gone well for you.
I was diagnosed in October with breast cancer and am having my treatment the other way around - 6 sessions of chemo then a full mastectomy and reconstruction in mid April. I've been having F.E.C. chemo on an I.V. drip every 3 weeks and have my last one this Thursday, prior to surgery.
It's understandable that you're feeling a bit nervous about the chemo, I know I was too. You have several questions and I'll do my best to answer them without this being too long a reply.
As you say, people experience chemotherpy in a very individual way. They say most people find a pattern after the first coupleof treatments and can predict roughly when they'll feel at their worst and best. It seems no two people are the same, although there are a lot of similarities between experiences. I have found each one slightly different to the last too. Just when I think I know how I'll feel, it changes!
For me the first was the worst. I didn't have side - effects whilst in hospital having the treatment. But it began about 1 - 11/2 hours later quite suddenly. I was sick on that occasion, but only because I thought I was well enough to eat a normal sized and normal type of tea that night - I learnt from that pretty quickly.
When you leave the chemo unit, you'll have a prescription to take to the hospital pharmacy, (It won't cost you anything because you're having cancer treatment. You'll have free prescriptions for 5 years at any chemist, if you apply for the excemption card through your GP). The medication will include anti - emetics (anti - sickness tablets).
When you visit your Oncologist, just before your chemo sessions, you'll be asked how the side - effects have been. If like me, the anti - emetics weren't strong enough they can change the dose or the type. I now take 3 sorts at one time over the day and these work much more effectively!! It's worth remembering that almost all the side - effects can be treated effectively, with a bit of tinkering. My Breast Care Nurse has been a great help regarding this. I've rung her lots of times to discuss how I'm feeling and to get advice.
Side - effects have been varied and unpleasant, but I don't feel dreadful all the way through. (Acid reflux, scalp sensitivity and hair loss, head aches and migraine, severe muscular ache from head to foot a bit like flu, very dry skin / excema, nausia and sickness a couple of times, hyper - sensitivity, fatigue and muscle weakness, ulcers in my mouth and a constantly sore throat, dry and stinging eyes, constipation, confusion and very poor short - term memory and shortness of breath are the main ones for me. But I don't get everything at once. One comes and when it goes, it's replaced by something different usually).
For me, the first 10 days are exhausting. I especially found this at the start. My husband needed to help me sit up in bed and to get down the stairs safely, but gradually the strength in my muscles improved over the days. Even though the side -effects generally become more intense as the chemicals increase in your body, I've found muscle weakness has improved and so has exhaustion. Nausia has improved due to changes in medication and other side - effects have stopped altogether either of their own accord or due to regular medication.
My hair started to thin after the 2nd treatment, but I wasn't convinced until I was approaching my 3rd chemo session. I tried the Cold Cap that you mentioned, in the hope I might be able to keep my hair. I understand these are available in many hospitals, but not everwhere. I have my chemo in a teaching hospital and it's offered as a matter of course. It worked a little, but the condition of my hair looked so poor after only a few weeks of chemo, that I decided to not continue. It was excrusiatingly painful using the Cold Cap too, so I was actually relieved when I finally knew there wasn't enough benefit to using it!! (It was -28 degrees and took enormous will power to keep it on my head for up to 3 1/2 hours. It was changed every 30 minutes to keep it chilled). I was told that the thicker and coarser your hair, the better it works. I had fine, smooth hair and it didn't do much to help.
Shaving my hair off took a long time come to terms with. My brother helped me finally do it on Christmas Day. It looked awful by then and I was surprisingly relieved to have a clear head - I was sick of seeing my hair everywhere and vacuming 3 times a day! It took some getting used to, seeing myself without hair, but it felt so much more comfortable and pain reduced a LOT! I've been having severe scalp pain since chemo started. Everytime my hair sheds, I get an intense burning sesation in the area it's coming out. Since shaving my hair off, this has reduced the pain significantly, although I still get it from time to time. Having been through it, the only advice I can offer on loosing your hair, is to take some control back. If / when it starts to look awful, be brave and shave it off. I really wish I'd had the courage to do it sooner. My wig and scarves fit better without it, I look better in the mirror, I get less pain as a result and I even feel confident enough to answer the door without anything covering my head, now I'm used to it.
There is a wig shop in most cancer units, but I sorced mine through a shop in town specially catering to people with alopecia (hair loss), rather than fashion! I tried two shops, both were good. They were discreet, professional and helpful. They didn't mind me taking photos of the ones I tried on so I could get opinions from family etc.. and so I could remember what I'd looked at. I thought I'd use my wig loads, but actually I tend to favour wooly hats outside and scarves when meeting people indoors, but sometimes I just wear my baldy look. Cancer Backup have some great info booklets too on losing your hair.
Chemo sounds awful, but it's not actually as bad as it probably sounds. I found the restrictions in place to limit me catching an infection, much harder than the side - effects, during much of this time. The chemotherapy goes pretty quickly and you'll get used to the routine faster than you might expect.
I wish you all the best Clair.
I finished Fec Chemo last may ( 6 sessions) and then had 3 weeks of radiotherapy.
I felt reasonably ok.. I was never once sick..And drove there and back for chemo.. I felt pretty grotty the 1st week but improved a lot the 2nd and felt pretty well the 3rd.. I did feel very tired so did used to sleep a lot.. Its quite hard to get your head round at the end of the 3rd week if you are feeling pretty good you are going to feel rough again the following week.. Dont be scared regarding the side effects the Nurse will tell you today.. They just tell you every one you MAY get !!!
I did lose my hair, which is upsetting (I sobbed for a weekend !!) I had already decided not to have the Cold Cap - mainly because I wanted to be in and out of the hospital as quick as possible.. I bought a wig which was very good. I went to a local hairdresser to have it trimmed which made it more personal to me.. I have my own hair back now and although I am happy about that it was quite good just coming out of shower and putting the wig on !!! Now I have to get up 30 mins earlier to do my hair !!
Remember every side effect tell the Doctor as they may be able to give you something for it..
Prior to my first chemo (EC) I went and visited the chemo suite which was a really good thing to do as you know a bit more about what you're letting yourself in for.
If you can and, if it's appropriate for you, take someone with you...it really helps and the chemo staff are really accommodating and understand how important it is to have support.
I didn't feel nauseous at all and ended up handing in my anti-nausea tablets. However, if you do...let the staff know ASAP as there are lots of different ones that can be tried.
Re. the cool cap...not all hospitals have them...I don't think Christie's or Liverpool do. I did cool cap and, eventhough I lost a fair amount, I felt it was worth it. For me it was also psychological and I felt I was doing all I could to help things. Eventhough it does put an extra few hours on your treatment it can also help particularly if you get hot flushes from steroids. My hair started growing back half way through my chemo and with avengeance.
Hope all goes well for you on Wednesday...I'm sure you'll get wonderful medical care and the other patients you will be priveleged to meet are amazing and another important source of strength.
interesting you said your hair started to grow back after the third cycle? i have just noticed that my hair (underarm + below!) have started to grow back a tiny bit, really fluffy - I only have 2 more chemos to go and expect that i'll lose it again.....
did yours grow back and stay or did you lose it again? sorry to be asking this in the middle of this thread but this is really intriguing!!
OH MY GOODNESS! THANKS SOOOO MUCH FOR ALL YOUR REPLIES!!!!
im so overwhelmed at your responses!!! thank you all so much!!
I went to the chemo suite today and it was a huge relief to go and hav a mooch. it was very lovely. i live in hartlepool and our hospital has the elec refigerated cold cap. fairly new too so we are lucky to have that. we discussed the steroids and anti sickness meds. and a district nurse has me on record too incase im really too poorly to take a trip to the hosp.
i will certainly be referring back to all your much appreciated advice through out....again thanks a million xxx
best of luck, I really hope it goes well for you xx
You're welcome...take all the support you can get at this difficult time for you.
Really glad you saw the suite...it makes it so much easier knowing what you're walking in to and to see all the other real people receiving treatment. Try and remember this - you're a patient and not a victim and this is all part of you getting better. And whatever slightly unpleasant things happen...they're only temporary.
All the very best!
thanks tess.....prickly bits eh?! im pleased you warned me! id have been wondering what the hell was happening! haha! never heard that symptom before! i had been warned about the red wee tho....that will be an interesting sight!!!! x
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