September 2016 starters

Hi all

As no one has started a September thread yet and there are some of you likely to start chemo in this month, it seemed appropriate to start this thread off. Hopefully it will become a lively and supportive thread for all of you having to go through your various regimes of chemo. Please do not be too worried - you will all get through this. For some it may be harder than others, as side effects tend to differ from person to person, even if on the same regime. Sharing your experiences will help others, even if you never see them posting. It is also a great place to share your frustrations, ask questions, laugh, cry, rant and rave.

Any side effects you do get please note them down for your treatment team. If they become too challenging and you advise them accordingly, they usually tend to adjust the accomanying medication to make your journey easier. Most side effects experienced in the first cycle with stay the same, as long as you are on the same regime.

Here are some helpful links for you to prepare and support you.

Chemo preparation - 

forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Preparation-for-Chemo/m-p/1036340#U1036340

If you do not have a PICC or similar port installed and you are on FEC throughout - you may wish to ask for one to be installed. FEC is quite tough on your veins. This thread may be of help though for all of you - 

forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Vein-Care/m-p/1036347#U1036347

And this one covers everything from food to make up and wigs - you may have to explore in more depth to find something specific you are looking for - 

forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Chemotherapy-Tips-and-Tricks/m-p/1017289#U1017289

 

Thank you for these leads. I am due to start FEC in the next couple of weeks. Not very good on computers though so not even sure if I have replied to this properly or if I should have started a new thread

I should be starting in two weeks. I have my appt with the nurse next wed to check bloods etc and then scheduled for the week after. For 6 cycles FEC only. Don’t know if that’s good /bad. Am a little apprehensive to say the least
Ali xx

Hi again,
It is as good or as bad as any chemo. I am on 6x FEC, too. But started in May and my last one is Sept 1. If they have not installed a PICC line I would seriously suggest for you to have one. It will make it much easier.
I have been fortunate with relatively little side effects. Chemo sounds much scarier than it is for mist of us. The worst for me is the cumulative fatigue. Others seem not to get hit so badly though. It may depend on varying circumstances.
Sue xx

Hi there. I’ve also been reading all the posts for a while now as had operation at end of June and am seeing oncologist next week so will be a September starter. Am very apprehensive about chemotherapy and feel I’ve had ages to wait!
We’re probably going to be going through this at about the same time so can compare notes. X

Hi Anne. It sounds as if we will be starting treatment at similar times. As the days go by since I was told I am coming round to the idea and less panicky than I wAs initially. Good luck for the 31st - Ali xx

Hi Kath64 and Madmac22

Welcome to the September chemo thread!

It is very understandable being apprehensive about chemotherapy and at a guess you may feel quite nervous on the day you start. When you have your pre chemo meeting, please ask the nurse as many questions as you can. Even if it seems trivial - having your questions answered is very important.

You may read about the many side effects and find it rather scary. We are all very different - and although possibly having the same treatment - the effects are likely different for each and every one of us. Some hardly have any, others may struggle a little more. Thankfully your treatment team, once knowing you are struggling with something specific can adjust your accompanying medication - to make things easier for you.

For those of you, who are not considering the cold cap, my tip is to have your hair cut as short as you are able to cope with. Many women seem to have unpleasant headaches and a very itchy scalp about 10 days after their first treatment, if the treatment side effect is hair loss. It seems that when the hair follicles shut down - the longer the hair - the more the stress to the scalp. Hence the headaches. 

Please feel free to ask any questions you may have - I shall do my best to answer them.

Hugs

Sue xx

Hello ladies - I too start chemo soon - on 31 August to be precise just like Madmac22 so it will be very interesting to see and share experiences with you. I am having a Portocath fitted tomorrow and will start the first of 6 cycles of FEC-T followed by radiotherapy. This is all very scary but at least we are now approaching the stage when we kick this BC out of our systems - go us!

 

Hi Anne
I am on the August starters but I do read most threads , I have found the forum very helpfull . I had my first Fec th last monday. I was very nervous but the unknown is much worse than reality.
I had my surgery in Wishaw in June and was re admitted there later when I developed an infection. I also many years ago had my daughter there. I found the nursing staff exellent and caring.
I have found myself having different scans and treatments since bc diagnosis in wishaw monklands Hairmyres and the Royal so far. They are all conected with the same doctors. My GP has also been great, letting me have Perscriptions that day straight to the Chemist and happy to have phone consultations with me when I need advice.
So far I still have my long hair. But I have booked for a short crop next week at the place where I got my wig in Glasgow. It’s another big step to get used to.
Wishing you all the best on 31st . My son is sitting his driving test that day too.
V x

Hi Anne

I am from Northants and my treatment commences at 3pm on 31st so I will def be thinking of you at 10.30.

I have had a sentinel node biopsy and my consultant advised that it would be useful to have a portocath fitted in case the chemo nurses cannot get veins for my treatment.

Basically the portocath is a thin, soft tube that is about 1-1.5ins in diameter that is inserted just under the skin on your chest. In effect it is like a tiny canula under the skin. This will stay in place the whole time that you have chemotherapy and the nurses will use this to take blood tests and administer the chemo treatment. It saves them having to stick needles into you anytime you need tests or for the chemo. So in that respect you are definately missing out and should be jealous lol! Ask your consultant about one.

Ive also been told that I will automatically receive medication to keep my white blood cell level up (as much as possible!) and that I will receive steroids at the same time as the anti-sickness treatment which will also help with any sickness. Again, if you havent been offered these perhaps ask?

I am also an out-of-the-bottle colour (sort of brunette) but maybe the new ‘bronde’ trend will suit us both. I have decided to give the cold capping a go. My decision was made mainly after meeting another lady who was on her 3rd round of treatment and still had 90% of her hair and was coping well. Who knows how I will get on but im going to try it anyway (wig just ordered as back up though :manwink:) . Im off nowto fill my body up with foot and water before the 11.30 cut off point when I will be ‘nil by mouth’ prior to my proceedure. Speak soon ladies xx

 

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Hi Anne
I’m from South Wales and will have my treatment at Llanelli. After reading all the posts I’m compiling a list of questions for the consultant when I see him next week on 31! I too now want to get this started.x

Hi ladies
I start chemo on 8th sept. 6 X EC. I intend to try the cold cap and hopefully will be able to stand it.
Is it recommended to get your hair cut whilst going through treatment or not if you’re cold capping?
Also from another vanity point of view, eyebrows this time! People have recommended the semi permanent tattoos, but do thes have to be done before chemo instead of during does anyone know?
Thank you in advance x

Hi Anne
I went to Parrucche on Virginia Street for mine. I did pop in to another place nearby but found I went back to parrucche as they were lovely and helpfull.
Happy shopping x

Thank you ladies. I’ve had it cut last week to a chin length Bob so hopefully that’ll be ok. I’ll let you know how I go. Please keep me updated with how you all get on xx

Hi Anne
Hope your shopping trip went well and the wig isn’t too Lily Savage! That’s something I’m going to be doing after my appointment on Tuesday. Although I’m aware all the other side effects sound horrendous, it’s the hair loss I fear most as it’s the visible thing and I feel it will label me.
We’re on a weekend away at the moment before the appointment and the weather is good so must enjoy!
See see_ thanks for reassurance about first treatment, I think we’re all the same and believe the waiting is the worst.
Will keep you posted about appointment Wednesday.
Joan, good luck for Wednesday.
Xx

Hello all you nice ladies. I had my Portocath fitted on Thursday and the procedure went easily enough and I didn’t even need any sedation - go me! The whole thing took 50 mins but that included going into the room, getting everything ready etc so I guess the actual ‘operating’ time was only about 20 minutes and a lovely nurse held my hand the whole time. The surgeon even had music playing in the background which - even though The Specials would not be my music of choice - was a nice touch. I felt a bit stiff afterwards and achy yesterday but the wound site is much easier today.

i understand your handbag envy Anne as mine is shoes but I have found myself trawling hat sites lol. One nice site for anyone looking is www.annabandana.co.uk. I am going wig shopping today in Leicester and am actually quite excited about it - I could go for a completely new look so that no-one recognises me and I can be my alter ego lol but am not that brave so will choose something in a style like I currently have but def not a lily savage look.

I hope that you are having a nice weekend away Kath64 - well deserved at the moment I feel.

haz25a - thanks for the advice about eyebrows. I might need to see if I can get an emergency appointment for semi permanent tattoos before Wednesday otherwise I will be sharpening up the eyebrow pencil.

Thanks also to blue ash and seesee for the information in cold capping and the details of the Paxman site. It was good to hear your experience on your first session wasn’t too bad seesee and encouraging for the rest of us.

I will be thinking of you Sarah04 on 8 September but I am sure that both Anne and I can let you know how we get on before then.

‘speak’ you ladies and wish you all a lovely long bank holiday weekend and that the sun shines for all of us xx

I’m on day 4 of my first cycle of FEC T. Apart from a headache, which I’m prone to anyway, and a kind of fuzzy feeling occasionally, a metal taste in the mouth and some tiny red spots, I seem to be suffering few ill effects. The constipation is a bonus as it just cuts down on my diarrhoea as a result of previous surgery and Crohn’s disease.

 

I post this to give hope for anyone about to start that it can be OK, at least initially.

Hi haz25a
Thanks for the info regarding eyebrows. Are you glad you had yours done? I’m a bit up in the air whether to bother or not? Xx

I am a September starter I have 4 cycles of D.C… This is the second time for me I had chemo 13 years ago for invasive ductal carcinoma on my right side. I have now been diagnosed with the same 30cm invasive ER+. I didn’t use the cold cap last time but am going to try it. I must admit I am scared. I also have to have a Hickman line fitted as I have had bilateral lymph node removal .

Hi See see, thanks for the update. It’s nice to know how people are reacting to their treatments and also to let us know what’s possibly in store for us.

Im too late to have my eyebrows done but I have bought a pencil and will be practising! Having a chilled weekend away on a narrowboat before Wednesday - it’s certainly the way to relax. 

Can I ask if anyone is taking ice lollies into hospital with them as suggested? Apart from putting them in a cool bag is there anything else that I can do to keep them frozen? I live 40 mins from the hospital and need to have bloods done first so there might be a delay before treatment actually starts. Does anyone have suggestions as to the best sort?

I hope everyone is enjoying the long weekend xx