Well I phoned my Chemo unit today and after being passed about and speaking to four different people, I finally got my start date, Monday 4th July, so I will be a July starter rather than a late June starter. I’ve got to be there at 9.00am and will be there for 8 and a half hours! I’m having my first Herceptin injection alongside my first TC chemo so it’s the Herceptin for the first time that’s making it so long. Should only be half days after that all being well.
I also received an appointment for counselling on the 6th July which I really, really would like, I just hope I’m able to make it two days after my first chemo. (Got a bit of a reality check there writing that, “my first chemo”, it still all feels so surreal!).
At least all this politics has taken my mind off cancer, for a short while anyway.
Hi - well I have seen my Oncologist today and I am to have FEC-T treatment starting on 7 July. Very apprehensive about it but it has to be better than the alternative. Thankfully when I saw the Consultant last week he confirmed that my lymph nodes were clear and all the tumour had been removed. Very nervous about treatment and about loss of hair. Not sure yet whether to shave it off or cover with hat/wig. I am going to get hAir cut short before treatment, that may help! Can anyone let me have any tips in coping with the treatment ?
Hi Audrey, glad you’ve joined the thread. I don’t start until Tuesday so can’t be any help on how to deal with chemo. But the links Sue had you are great for tips. I think hair loss is a really individual decision. I’m not cold capping so have a wig and various hats/coverings ready. Have had a short cut and as planning to shave as soon as it starts falling out. Then at my pre-chemo assessment yesterday I decided I wasn’t going to let any fall out, so now I’m planning to shave as soon as the tingling starts so it doesn’t get chance to drop. Just me trying to cling on to some control with it all!!!xx
Thanks Sue. I’d really rather do it myself if I can. So maybe next weekend is a good plan. 4 days after chemo should be safe to get in before nature takes over?? Not sure I’m quite ready to do it before Tuesday. Although if the mood takes me I very well might!!!xx
Hi Sue, thanks so much. I’m having 3x FEC then 3xT. Have steroids for 3 days and an injection day after chemo to help increase wcc to try and minimise the time spent at risk of infection. Just feel like I need it to be Tuesday now so I can see how it goes for me, because until then there’s only so much guessing you can do! But first I’m going to enjoy my boys’ summer carnival today and make the most of feeling well! xx
Hi Taran I had my pre assessment yesterday and had my picc line fitted. I was told I would have to give myself an injection everyday from day 3 for 7 days for my wcc. Are you just having the one injection? Like you I’m debating when to shave my hair. I’m not too sure whether to leave it till when it starts or do it before. I’ve read some people’s scalp gets itchy/tingly and sometimes sore and not too sure whether it would be ok to shave it when it feels like that. Am off to do a chemo shop today and get all the bits and pieces I need before Monday. Had a look round the unit yesterday and can’t believe how busy it is but everyone was really friendly and quite upbeat considering why they are there. Can’t let the side down so will go in with a smile on my face. What I come out looking like I can’t quite say just yet ? X
The following is a list of tips & advice given to me by a friend who was treated for breast cancer (6xFEC-T) 3 years ago. I found it useful so am sharing it here as you all begin your treatment. These were the things she experienced and are by no means what everyone has but forewarned is forearmed and all that.
Hair loss - Day 14, preceded by days of prickling, tingling and itching. Began to come out in clumps so used clippers and shaved it off at this point.
Issues with hypersensitivities - eyes - became photophobic during chemo, worse as chemo wore on - took sunglasses into chemo unit and started wearing an eye mask for sleep. Taste and smell also affected.
Mouth - furry, tacky sensation - pineapple juice and chunks helpful. Rinsed with salty water after every meal. Found all hypersentivities settled 2-3 weeks following last chemo.
Tinitis - for one week with each cycle
Exhaustion - delayed with ‘T’
Dry skin - massive problem particularly on hands & feet so took to wearing cotton gloves and socks overnight to hold in generous applications of moisturiser.
Depression - would descend out of nowhere - drug induced - would lift equally randomly
Chemo brain - along with losing words (especially people’s names) had weird dreams and found brain buzzing a problem. Expect memory loss. Brain fog descended about 1 hour into treatment.
Top tips:
Check your take home drugs before leaving the hospital in case of missing items - if you struggle with brain fog at this point, have someone with you and get them to check the drugs for you.
If you have a PICC line ask for a piece of tubigrip to cover it and hold it in place
Also for a PICC line, this waterproof cover was brilliant and lasted for the whole of her treatment: limboproducts.co.uk
Hi all, had my pre-assessment this morning before starting FEC-T x6 on Wednesday. Was very apprehensive of even just going into the unit and finding my way to reception! I need not fear everything went well and all the nurses were so lovely. Apart from me asking where the toilets were then promptly went into the men’s!!! The nurse assigned to me Abi was really good at making me feel less jittery, showed me where everyone was having their chemo - not frightening at all (well I didn’t know what to expect and my mind was jumping to weird scenes!), everyone was chilled out and either reading, chatting or listening to music. I can honestly say that seeing the unit has really helped me. My next thing to get through is the actual chemo itself going in and then the hair loss but I’m sure it won’t be as bad as I imagine, my mind goes into overdrive when I havent experienced it before. Decided to get a silicone medic alert bracelet - “axillary lymph nodes - no bp or needles in this arm” and feel a lot happier. I can’t always remember about not using that arm, in fact I was so focuses on getting through my CT scan that I offered the poorly arm! Luckily a nurse checked my notes before putting the blue dye in! From reading these posts its seems chemo fog is another side effect, help! What a journey this is ?
Hi Nellie, good luck for Wednesday. I’m sure you will be fine now you’ve familiarised yourself with the unit. Not knowing what to expect us half the battle I think! I’m starting tomorrow. Had my pre chemo assessment Friday but not at the same place I’m having chemo. But luckily it’s run in the opd I’ve had all my other appointments so far, so I know where I’m going etc. Then like you say it’s the side effects and hair loss to deal with. Fingers crossed they are not too bad for either of us xx
Sue, thank you for the recommendations. Definitely something to consider!xx
Taran & Nellie - good luck for tomorrow and Wednesday and Bella Boo hope you got your first session over today ok. My first session is next Tuesday, so will be reading any threads you post to see how you get on. Sending love and good vibes to you X
Hi all just want to say it’s not that bad!!! Even managed a cup of coffee and some custard creams ? My nurse was lovely and reading this forum really gives you an idea of what to expect. Got the prickly sensation down below with the steroid and had the red wee. I have a picc line so was only there just over an hour. Have drunk at least 3 litres of water today so hope that helps. Have had my tea and just settling down for the football. Have a slight headache and my heads a bit woozy. It’s like being tipsy without the fun of the wine. No issues with my stomach but I suppose that’s the anti sickness meds. Must admit don’t know what to expect next. I’m just sat here waiting but not too sure what for!! Good luck Taran what time are you in? Nothing will stop the nervous feeling but do try and get some sleep. One down five to go xx
Well done Bella Boo! So glad it all went well and you are feeling fairly good so far. I hope you get a good sleep tonight and have a good start to tomorrow. Everything is easier if you’ve at least slept!
Alex, Sue, Nellie, thank you so much for the kind thoughts. I will update tomorrow with how it went. I’m in at 12.30 so plenty of time for the stress to return before leaving the house in the morning! I’ve been much calmer about it all today than yesterday and hoping the relative serenity lasts at least until I’m hooked up to the drugs and it’s too late to worry!! xx
Its not been as bad as I thought, so far. I’ve mostly felt almost normal!
Ok nights - slept light.
Been Duracell Bunny in the days. But last steroid gone now, so should pan out a bit.
Only a little nausea, headache and weird taste now and again.
I’m wee-ing for Wales at the moment as I am drinking SO much - lots of cold water, hot water, lemon squash and just 2 coffees in a day…
* Tip - I used my mobile phone to put in all the alarms for tablet taking, temperature and anti- biotic (boob improved over weekend) etc. It’s going all day at the moment!
So far, not too bad - let’s see how the rest of the week goes.
Good Luck Taran today and anyone else starting. Hope those who have started already are doing ok and feeling well. Its been a week today since my first fec and I feel well. I don’t like tempting fate, but so far, as it goes, nothing like i expected. Its the fear of the unknown really. Xx
Morning Taran hope your feeling ok this morning. Thank you to everyone else for your support. Managed to get some sleep though it feels like I have a bit of a hangover but nothing too bad. I have managed to have my weetabix this morning and taken all my meds. Only down side my coffee tasted a little odd but I can take that. Hats off to those with young children or who are still working, whilst I don’t feel as bad as expected having to run round after little ones or face the general public must take some doing. I’m fortunate with my work and can take the time I need so today I’m going to potter. Don’t appear to have the duracell bunny effect from the steroids though. Nellie what time are you in tomorrow how you feeling? Netti and Angenut it sounds very positive from your side, fingers crossed I’ll be likewise. Sue thanks for the advice it is strange sitting and waiting to see what happens, think I just need to get on with things rather than waiting and worrying and then take it from there. Xx
Hello everyone. I start chemotherapy on 5th July. So scared but resigned to it now. Having a port put in this week which I’m similarly anxious about! I’m having 3 x EC at fortnightly intervals and then 9 weekly T. Seems a slightly different regime to many. I’m hormone positive, grade 3, one affected lymph node and petrified as i lost my lovely Mum to BC. 4 children so really need to get on with this and do them proud. Anxious about posting as not usually my thing but reading all the info and all your stories has given me courage. Am thinking about cold cap but have bought a wig. Is the cold cap really worth the extended treatment time (and discomfort?) Having bloods done today and a chat with BC nurse about the port insertion. Wondering whether I should use my left arm for first couple of EC treatments (can’t use right as lymph clearance) or should I just get port insertion over and done with. ??? You all sound such upbeat ladies. How inspiring you all are x
Hi Bookworm and welcome there are some fabulous people on here that will help you through this journey. Like you I was grade 3 with one lymph node and triple positive but am having 3 fec and 3 t. Not too sure on why the regimes are different but it is very individual to each person. I had my picc line on Friday it hurt a little but so much easier yesterday for my first chemo. I was in and out very quickly and they did the chemo and bloods from it. Sue might update re trying first and then having a line in. My view would be get the port as its short term pain (and not that bad) for long term gain. I haven’t cold capped as my hair is short and my oncologist didn’t think it was worth it. This is a journey that we have had no choice about, we can’t change what’s going to happen but we can be in control of how we deal with it. Everyone has their ups and downs but usually when your down someone else is up and that is where the support comes in. Try and keep strong and there is one word that I keep on seeing on the threads and that is it is doable. Xx