Newbie - my story, your experiences/thoughts appreciated!

Sorry what's fec?

Hi,
I don't know a huge amount about it, just seems to be fairly standard chemotherapy regime offered in UK...
fluorouracil, epirubicin, cyclophosphamide.
More info here:
http://www.macmillan.org.uk/Cancerinfor ... n/FEC.aspx

Hi Better soon

Welcome to our little gang of warriors and I am so sorry that you have had to join us but nonetheless I am sure you will find great support here. I am one of those mid career with no childen people who got bitten in the ass by cancer in Jan 11. Alas I was not offered any fertility help in the public system and because the cancer was so agressive there was no time for freezing of eggs so here I am in 2103, cancer clear but no hope of having children of my own. Large price to pay but am still very happy to be alive and getting on with my life.
Fair play to you for having your chemo over here, having had your surgery in the UK. With regard to chemo , most oncologists over here are offering a more tailored chemo so you will find that there is a variety of combinations being offered. When I started my research into chemo I looked to the Macmillan site to get the info I needed and I do remember noting that FEC was a common treatment in the UK. I have not met any women over here who were on FEC but thats not to say that it is not commonly offered. Can I ask where you are having your treatment? The only bit of advice I would give to you is to get yourself set up for chemo. If you have time to go to the Dentist and get your teeth cleaned do it. Also make sure to get yourself a good mouthwash, not Corsidyl as it has been known to turn your teeth black. Any other non alcoholic one is good. I found my skin got very dry so I started to use the Aveeno range and it was fantastic, I got the body and hand cream. I am not sure if FEC causes hair loss but if it does you may find that your scalp gets very dry and sore, I got a bottle of olive oil from the chemist and used to rub it in. Also if you can get a silk pillow case this will help as believe it or not, it actually hurts when you are losing your hair and the silk pillow case stops any rubbing at night. Your little head can get very cold so i got a little hat to wear in bed - uber sexy! One of the chemo drugs I was on also caused nail damage so I used to put lashings of Sally Hansen Miracle Cure on my nails and it really helped.
With regard to radiotherapy, they normally make the decision based on your lymph involvement and stage of cancer so it is not always recommended over here.
Thankfully there a few details I have forgotten about but if you have more questions, thoughts or want to talk, just shout

Love and light
Sinéad x

Hi there!

I remember when researching chemo FEC or FECT seem to be standard proceedure in England. Over here they tend to treat using TC/ TAC / or TCH depending on the cancer.

I am 37 and was told that they treat aggressively over here to ensure it never comes back and that we can take it. If you have lymph involvement I was told that chemo and rads are more than likely on the cards.

Where are you having your treatment?

I hope that is of some help. Chemo is not pleasant but I'm 2/3 of the way through and am managing a smile- most days!!!!!!

If you need to know anything else please don't hesitate to contact us or the cancer society helpline - I found them great!!

Good luck

Xx

Thank you so much ladies, your feedback is really lovely to read. I've tended to keep to myself so far and this is the first time I've reached out in any way. The first interaction I had with anyone else going through same thing was waiting in theatre admissions for 6 hrs on morning of surgery with an 81 year old woman... And I just felt so far removed from her situation, felt desperately sorry for myself with all the 'why me' questions, I figured I didn't have anything in common with anyone at that time!!

Thankfully, I'm largely over those feelings, and focussing on the blessings of a wonderful partner and family, and I still have my life

Chemo will happen in Beaumont and ill know more tomorrow, expecting another call about which oncologist, appointments etc. Any thoughts on care there?

Thanks a mill,
xx

Hi bettersoon

I have only posted on here once maybe twice before so I'm kinda new here too. But ive been reading and all the support seems to be fantastic.

I am attending Beaumont. I started Chemo Oct '12 which was Ac 4 sessions every 3 weeks. Then weekly Taxol x12. I due to finish chemo next Thurs . Then it'll be Radiotherapy 30 sessions I think. Unfortunately I cant give any information on FEC. Everyone in the hosp has been fantastic.
Ive just had chemo today, so excuse the short reply as i am knackered and just heading to bed . But if you have any questions at all, dont hesitate to ask.
Good luck with your appt tomorrow.

Another Beaumont girl. I am under Dr B (the old Irish sounding name). Found him very good. There is a new fella ther called Dr H (brandy brand) who I heard talk at an Irish Cancer Soc seminar. He is recently back from USA major cancer centre and seemed to be ultra knowledgable.

Most hospitals here seem to over treat us young gals tho i know since I had chemo 3 years ago there is a move to more tailored treatments and tumour analysis to see if chemo benefit outweighs the risks.

As a young woman diagnosed, keep an eye on a US web site called young survival coalition. It was brilliantly active when I was diagnosed but they changed the platform hosting the discussion boards and it went right down. Thanks to a software upgrade 2 months ago it seems to have been taken off again. I found the site excellent when trying to understand treatment options, plans and side effects! The girls here are great too by the way.

Post more questions as you need to.

Lindylu

Hopefully I'll know more before the day is out and will chat then! Take care of yourselves girlies, thank you for input. Ooh, and have booked a appointment to have teeth cleaned thanks to recommendation received here!
Happy Friday Ladies x

Appointment with oncologist in Beaumont Wednesday afternoon - will post again afterwards! Thanks all.

Hope you're all having a good weekend!

Update on the latest from me... Chemo set to start this coming Friday. Slightly different regime to UK, but I'm happy that I was given enough info about the differences etc. in fact I was honestly pleasantly surprised about my treatment at my appointments in Beaumont last week. The nurses were great, and consultant too. I was honestly very nervous about dealing with a new team for my treatment when I'd been treated so well in the UK to date, but I was delighted with how open and honest they were with me. I know I've got to have chemo, I know it's going to be rough etc, but they've referred me to physio & radiotherapy too, without question. Mind you, there wasn't a seat in any waiting room or corridor in Beaumont, myself and partner resorted to sitting on the floor in a corridor at one point, it's no problem since we're fit for it, but many people are not... And Beaumont could certainly do with a lick of paint amongst other things.... I suppose it's an eye opener compared to how tax pays for the NHS.... Not perfect either, don't get me wrong, and you can see limited resources there too, but our taxes here don't go very far with medical care here. The care is what matters, that's the bottom line!

Oh, anyway!! 4 rounds of AC chemo every 3 weeks, then 12 weeks of weekly Taxol...and fingers crossed no Rads still. Oncologist was happy with all that have had teeth cleaned as per recommendations offered here, haircut booked for 7 days after 1st chemo, will channel my inner Sinéad O'Connor and have kitted myself out with some nice headscarves. I've done all I can, now chemo can do its thing Audi just have to get to the other side of it. Fingers crossed!!

x

Hi bettersoon, I am kinda on the same path as you u going about it in a different order. I am also pre kids, mid career etc. made the big move to aus, and was working there for a few months. Diagnosis confirmed in aus and the system over there was amazing efficient!!! Compared to here!! But with no support network I had to come home. Chemo is not something u can do on ur own! I started with chemo, then surgery, now rads, with final reconstruction scheduled for sept/oct. what type of reconstruction did u have?

Hi Bettersoon,

sorry to welcome you but you're in a good place here. I too had all of my treatments in Beaumont. Mr G was my oncologist, now Prof G I believe, and well deserved too I must add. They are nothing but professional on 2nd floor oncology and do their best to ease your journey with them. I can honestly say that I got "world class" treatment from start to finish in Beaumont. I was very impressed with them as I'd never been in contact with the HSE or it's services before this & had only ever seen the bad publicity in the media, funny they never headline the good stuff that the HSE does. Yes the place could do with a lick of paint & the clinics, especially oncology, are bursting at the seams but hats of to all of the staff who give such a high standard of service in these conditions.

If you've any more questions don't hesitate to ask. Take care & HAPPY EASTER to all.

I'm also a Beaumont girl... Finished my Chemo mid Jan and then onto RT so a different path to yours. But I wanted to assure you that the team in 2nd floor oncology are beyond compare - they work in conditions which are far from ideal and yet manage to give everyone the care they need and a smile which is needed more sometimes! Seriously they are unbelievably supportive - the only thing I had to remember was to tell them what was going on with me and when I needed help. They are brillient but not mind readers too! Anyway be assured that you are in great hands. I found aswell just talking sometimes to other people waiting there helped too as we're all in the same boat to an extent... Remember that even if you are having a bad day, the sun still rises the next day and hopefully it is a better one.... Good Luck with your treatment and hopefully side effects will be at a minimum for you...

First chemo this morning... Here goes nothing

Bettersoon, was in same position as you yesterday morning and now one down ! So far so good, nothing major and feeling pretty good, just a bit tired. Its probably too soon to know what, if any side effects will kick in, but I am drinking gallons of water to try and clear everything out and hoping that the wonderful Emend keeps working !!
Just waiting now for nurse to come with nuelasta injection.
Hope it all went went well for you.
LL

Oh ladies I'm getting a flashback. I finished chemo New Year's Eve and am now 13rads into 33. We all get through the chemo but it gets a bit harder as you get near the need, but the fact the end is near makes it more bearable. I had the neulasta injection too my hubbie gave it to me, no bother. Can give you pain in your bones but nothing too bad. I'm here girls if you need to ask anything best of luck. Xxxx

Aw girls, my first AC yesterday and tummy boy liking it at all... No temp but sweats & puking since about 6hrs afterwards.... Phones Hosp and advised to take the 'just-in-case' Valoid they gave me. No change, just keeping up fluids. Barely able to chat! Was very pukey after surgery too and did tell docs... Not sure what to do! But glad to hear LL doing good, keep it up girlie! Xx

Hi bettersoon. I was given valoid after my first chemo and was so so I'll after it. The anti sickness drugs are not strong enough for you. I rang the hospital and they faxed down a prescription for zofran which worked a lot better! Don't suffer in silence. They will be able to sort out better drugs for you.

Hope you're feeling better soon x

Better soon, I second Neadi's advice, get on to the hospital. You are in baeumont so call St Claire's ward (oncology) and ask for the onc reg on call. They should be able to fax a script to your pharmacy (have fax no of pharmacy to hand).

I was in bed for three days post first AC. Did not actually puke but spent a lot of the time just retching (not nice). When I went back in for my day 10 bloods they gave me a script for Zofran. It made SO MUCH difference. I still had some nausea but not the stay in the bed and walk around with a bucket kind.

Call the hospital please!

Lindylu

Hi all, did call hosp, but just advised to keep trying valoid, drink isotonic sports drink for added fluids and call doc n call if injection needed as onco on call wasn't in the building... I'm being patient, no voms today! Will call my own nurses tomorrow and fight my case to be better prepared for next time!
Another question... They mentioned on Friday that day 7-10 of chemo would feel worst... why so? More nausea? I know ive got the hair loss coming up, but i've booked my hairdresser to chop it all off this saturday... The unknown would drive you up the walls, eh!
Thanks again, and my thoughts with anyone in same position, past or present xxx

I felt the first chemo was hard as it starts to follow a pattern and you know what's coming on the second one. I had chemo on a mon and my worst day was the following Sunday but everyone isn't the same. You will get used to and know what's going to happen. You'll be an expert by the last one lol

Bettersoon, day 7-10 is when your blood counts (you bodys ability to fight infection) to be at their lowest. You might find you are more tired then too. Hopefully the nausea will pass soon enough. I felt crappy for 3-4 days post chemo mostly cos of nausea. After that I just felt tired. medics may recommend you stay out of public places during this time. For me I tried not to go to supermarket or places where there were lots of people mid chemo.

If you can take a nap during the day, this might help with the tiredness. I had two babies while going thru treatment so lie on's were not an option, instead I napped when they took an afternoon nap.

Please DEMAND zofran for the next session. Plenty of us gals on here that had awful nausea took zofran and it made a signifiant difference. There are lots of drugs out there to help us. If you are feeling crap the medics are not doing their job properly - it is their job to find something that works for you. Unfortunately you do have to be an advocate for yourself and not let them fob you off.

Hope you are feeling better.

Lindylu

Here's a good news update folks

Firstly, thank you to you all, it was a great support to feel that I wasn't over-reacting, and that gave me the confidence to speak frankly with my nurses etc. They sorted out a second prescription - for zofran - and also additional stuff for the crippling hartburn that was waking me up at night. I've had my 'day 10' checkup, everything checked out fine, and they listened to my queries and made sure I was ok with what meds to take in what order etc. The good news is I've been able to stop taking all of them from yesterday! So, I feel great, and getting plenty of rest, ready for round 2 in two weeks.

In other news, I also had all my hair cut yesterday morning. I didn't want to face watching it fall out, so I decided to have my hairdresser shave it. I was worried that I'd hate my new look, but I could either choose to do it myself, or wait in dread for chemo to do it for me. In the end, I can honestly say it was a fantastic feeling! I chopped lots of it off myself, under her watchful eye And when would a person ordinarily get to do that? Chop random chunks off one's own beautiful tresses?! And my wonderful partner came with me for moral support. He loves my new look, as do I. I'm sure things won't always feel this good, and as you all know more than most, losing control of your body in varying ways at different points during the chemo cycles, well, it's pretty scary. But right now, I feel beautiful, and I had expected to feel ugly and to hate myself till my hair grew back. I'm genuinely overwhelmed that it hasn't been that way.

So, one week of horrible nausea, they're going to re-jig my meds and fluids quite a bit the next time, I'm channelling my inner Sinead O'Connor, I've got my feet up, and the sun is shining. There's a lot more good in this world than bad.

I hope you're all having a fantastic weekend xxx

Good for you bettersoon you are a ray of sunshine and so positive. Of course there will be days which are not so good but I found those to be few and at between. Like you I embraced my baldness and was happy with this new era in my life. I now sit here with 'pixie' style hair and I love that too. It's all a learning curve.

Glad you got sorted with the meds! Believe me- they make the difference! Listen to your body and rest up in advance of number 2!!

Mary! Was wondering how the hair was coming along!! I'm beginning to get a bit of fuzz I know I've one more chemo to go, but it's hair and it's there!!! Yay!!! Hope rads are going ok

Xx

Glad to hear you got a script for zofran bettersoon, I hope it makes lots of difference!

Well done on the hair thing too. I had mine cut about 1cm long before the fall out but it was too long as once it started falling out it went everywhere I was sorry I did not go for a complete shave look.

Onwards and upwards from here and take Neadi's advice and rest up!

Hi Bettersoon,

So glad to hear that things are going well for you and that you are pleased with how you look. Good for you, beautiful lady!

Keeping my fingers crossed that your next chemos won't be so hard for you. Zofran is wonderful, though I did find it made me pretty constipated .

Thinking back, I used to find sparkling water refreshing to the taste buds and when I had a foul metallic taste in my mouth to eat rice biscuits (something to eat but few calories ) .

All the best

Kath