September 2018 Chemo Starters.

Hi all,

Day 12 now after first of my FEC-T* 6 chemo rounds. Feeling good, just a bit paranoid about going over the door when I am in my ‘middle week’ and my immunity is low. Still doing the school run but apart from that and a bit of food shopping not venturing out much more.

Keeping buying stuff online!!! Need to stop that as off work and not earning £££’s
(I’m a foster mum and had to let my wee boy go?)

Anyway, really scared today as have appt at 4pm to get result of liver ultrasound. A couple of shadows were found following my CT scan. Just seems to have been bad news for the past while so expecting the worst and praying for the best ??

This is such a challenging journey, getting the chemo and dealing with the side effects has been straight forward for me so far. IT IS THE WAITING FOR RESULTS THAT IS EMOTIONAL TORTURE ? Anyway roll on 4pm so that I know ??

Sorry for the moan I am normally a positive person but this ride tests the best of us!

Love that I can post here and people in the same boat can really appreciate the feelings.

Love to you all?

Hey MamaTony - I’ll be thinking of you at 4pm. I’m praying it’s good news and nothing to worry about. We have enough going on!
Well done to all the ladies that gave had their hair cut short in preparation. Mentally, it does help.
I had my first FEC yesterday. Felt horrifically sick last night and my head and stomach hurt but this morning it’s more manageable. They gave me an arsenal of anti sickness drugs to take home. I’m dreading the injections for 7 days. Needs must eh? Just pottering today and watching Netflix!
I’m considering a picc line for my next load as it was very painful in my hand. Anyone have one and what do you think?! Any drawbacks to having one?
Sending lots of love to everyone as always, Dawn x

Good luck Mamatony!   Dont worry about online shopping we class it as a side effsct of chemo!!  Just blame chemo brain!!:smileyvery-happy.  As for venturkng out during middle week my onc said to avoid public places like cinema, theatre, schools etc but to still go out, if i needed the sioermarket try to go off peak and take hand gel and use regularly!  Avoid anyone with colds etc but dont loxk yourself away, i still try to get out in fresh air for a walk.  

You are all doing well big hugs

Kip

Hi all!

Thought i better check in as been awhile, im currently day 13 after 1st ec, shaved head day 5, admitted to hospital day 6 (high temp) only stayed one night looks like start of infection so antibiotics given. Constipation gradually subsided only had to take one lot of senna which was good. Feeling really good actually. New thing that is happening, hairloss but NOT on my head!! Yes lady fuzz ?

Love & Hugs Bee ? x

Hi all,

Update on my liver ultrasound results…

Went ok, the ultrasound didn’t determine what the lesions are, apparently they are very small. If they are cancerous the chemo might sort them. To get another ultrasound after third chemo. Also, might have always been there.
Main thing is it’s NOT a big mass of cancer so I’m happy to take that at this stage.

It’s amazing how happy I am that I may JUST have breast cancer…unbelievable…what is happening???..a month ago being told I had breast cancer rocked my world ?

Anyways will get a good sleep tonight.

Love to all ?

Thats good MamaTony, like you say its weird how your priorites change.  I went from total shock at being diagnosed to being glad it was only in 1 breast to happy that only 3 nodes had cancer!

Hope you got a good nights rest.

Kip

x

Hello lovely ladies, please excuse me for jumping in without having read all of the earlier posts and getting to know you. I promise I will diligently read them all tonight! I hope that you are all feeling alright and that the side effects have been kind to you!

I’m joining this thread as I was informed today that I will be starting chemo next week ?. There have been several unusual twists and turns thus far that I won’t bore you with. To cut to the bare essentials: informed on Tuesday of this week (18th) that I will definitely need chemo. Saw oncologist yesterday (19th) and told chemo will start 5th Oct (in two weeks). Had a call this afternoon: chemo now starting next week (28th Sept)! I only had surgery 4 weeks ago (mastectomy with some lymph nodes removed) and thought that I would be given more time to physically recover and mentally prepare myself for this stage!

Anyhow, the reason that I am posting is that I have gone into a mild panic about what I need to do to prepare for the first chemo session. I have been given the standard information booklets and know that I will be having FEC-T, but I know nothing else. No logistics, no idea of what I should be bringing with me, what to expect when there, what I need at home, what I should/shouldn’t do day of chemo, what to eat/avoid. I know you are all going through this, and probably remember what it felt like before you started. I need to have a plan and to get organised now so that I can feel more in control of the situation. Please help me! What do I need to do? Thank you! Xox

Hello ladies I am just dropping in from May 2017 to send you all love and strength over the coming months. I am so glad you have found each other. The May starters have supported each other every step of the way and are still in contact on a fb group. It’s difficult to know what’s ahead and the road is often bumpy but we are still plodding and embracing the new normal. Including uncontrollable new wavy hair. It sounds like you have many tips and tricks already but if ever you need anything please pop along and say hi. Someone will respond.
You are not alone.
X x

Thank you so much, GabyF and Rally15. Your experiences and advice are so helpful! You have made me feel a bit better already.

I’ve had a read through the previous posts. You seem like a fabulous and very supportive bunch! I hope those who have had adverse side effects find some medication that helps. I, for one, cannot handle feeling nauseous… so hopefully they dose me up with lots of anti-nausea drugs!!! ?

A little more about me: I’m 33, I have a (usually) delightful one year old and a slightly overwhelmed husband. HER2+, so I’ll be having herceptin as well.

Love to all! ?

Hi ElliesMum,

Looks like you have had lots of tips so far.  I am from June Chemos and have had 3 x FEC and 2 x T so far.   Make sure you drink lots the day before chemo, its helps to get the veins nice and plump and easier to use.  I kept a stash of ginger biscuits, mints and sweets with me and beside the bed incase of nausea.   Keep a bottle of water with you at all times and drink lots especially the couple of days after chemo.  It helps to flush it all through.   Eat what you like when you like, little and often helps with nausea.  Take all the meds they give you, and don’t be afraid to call the hotline if you have any worries, they are great and answer anything!   Do you have a good thermometre (ear one is good), you need to keep an eye on your temperature.  First cycle I was paranoid and kept taking it every hour but you get used to that and by 2 or 3rd you don’t need to take it so often but do keep an eye.  If you take paracetomal for headaches or aches and pains remember to take your temp before hand as it can lower your temperature.   I think you said you are having FEC?  One part of the FEC is red and as soon as its finished your wee will be bright red… don’t panic thats normal and it soon fades!

On the day, as the others have said, comfy clothing, a friend to chat to, a book to read, nibbles and drinks.  For FEC the nurse will sit with you and feed the chemo into your cannula so you’ll have her to chat to as well.   The thought is definately worse than the deed, I cried throughout my first one but it was over within about hour and half and I was off home.  The side effects (mostly a bit of nausea… like morning sickness I found) lasted a few days and then I bounced back.  You get more tired as things go on, but rest up when you need and most importantly of all… keep coming on here, we are all going through it and will help in any way and its nice when you have things to pass on to others too.

Oh and I keep a diary, I write down everyday when I have taken pills (theres usually a lot to remember) and also any side effects, you will get to see a pattern as each month usually follows the same pattern. 

Hair - sorry to mention it, not sure if you are cold capping?  I didn’t and my hair started to come out by day 12 of first FEC, I then had to have it shaved on day 15 as falling out really quickly.  Others have hung on a bit later than that. I had my hair cut short beforehand as my hair was quite long.   Its distressing, I won’t lie, but you soon get used to it, there are lots of lovely hats/scarfs and very cheap on ebay/Amazon.  I also have a lovely wig, the NHS should provide you with a voucher to help with payment, I had to pay the first £70.   Ask if they haven’t already told you about it, as its good to have one ready if you choose that route. If you go onto June Chemo starters there are lots of photos of us rocking our baldies!   Its very liberating and by First cycle of T my hair was starting to grow back, I have about 1cm now!

Oh and book onto a Looking Good Feeling Better course if you can, lovely morning where they show you how to apply makeup, draw on eyebrows etc and you get loads of freebies - about £250 of makeup!  Well worth it and a nice pamper when you need it!

Take care,

Kip

xx

Thanks for the tips, Kip! It is so helpful to learn from you wonderful ladies who are a little ahead of me on this crappy journey.

Yes, I’m having 3 rounds of FEC then 3 rounds of T. Luckily I have a good thermometer already, but thanks for the heads up. Not cold capping as I get migraines (and partly because I can’t be bothered with it either ?). I have shoulder-length hair but I’m planning to shave my head the weekend after I start. I haven’t had time to do anything about a wig yet - I’m at work today trying to get that side of things sorted before I start chemo - but I do have a voucher. I may have also purchased several (one may say too many!) scarves on a mad shopping trip yesterday after being given the chemo appointment! Oh well ? I feel better when I’m prepared and would prefer to have too many rather than too few. Kudos to those of you who are brave enough to go bald! I fear I probably won’t be - at least not initially.

Another question I have for you all: have you been able to work during treatment? I can go on sick leave on full pay for 6 months (super lucky I know), but I love my job and want to do whatever work I can do alongside treatment. I can do a fair amount of work from home. Am I being crazily optimistic? Or might it be manageable to work say 1.5 weeks every cycle?

I now have a shopping list for the weekend and feel more mentally prepared and in control. Thank you all again! ?

Hi Elliesmum, the other thing to bare in mind about work is what you do. I am a teacher and was told I could not go near school at all during chemo because of the risk of infection. In fact I have been off pretty much since diagnosis as I found I just couldn’t stand in front of my lovely students and pretend all was well. I did go in for a couple of weeks between surgery and chemo on a negotiated timetable. And I did go to my Year 11 Prom (that I had organised!) the day after I lost all my hair!! Kxx

Thanks for sharing your experiences, Kip and ktk! I might try to do some work throughout and see how I get on. Xox

I started tcph neo adjuvant 8 days ago. First 3 days I had constipation and bad reflux, which I think we’re down to the steroids, as once I stopped (and took senna for 2 evenings) it changed to stomach cramps and diaorreah for 3 days. I took the pills and it held it back for a few hours. But now I feel I’m starting the cycle again, awful cramps and back pain that just won’t move. Now I could take a laxative again but I’m afraid of starting with the “runs” again… sudocrem can only help so much !! I’m trying to drink lots of water but feel very full, eating is a challenge as it starts the cramps as soon as it hits my stomach, so 5kg loss in 5 days. So, I am starting to feel a bit pathetic in myself and stuck as to what to do. Anyone have this and have any ideas? 5 more cycles of this seems very daunting right now xx

Scatterbrain you must ring your chemo unit. I was ‘told off’ for not ringing when I had diarrhoea as it could be a sign of infection xx

Hi Jacqs and welcome. It sounds like you have had a rough ride, I am so sorry. I am really from the June thread but it is all a bit mix and match! I am also TN and had bilateral therapeutic mammoplasty in June. Nearly finished chemo, one more T to go then rads. Good luck with your treatment Kxx

We’re all going thru so much at the moment. I’m on day 6 of my 1st fec. What a week it’s been. Will these side effects not bugger off yet?! I have stomach issues and M.E. too so it really has floored me. I keep reading all your posts and helpful tips. Still struggling with nausea if I don’t nibble often. Trying to stay upbeat, but it’s hard. Glad I have your company. Lots of love xxx

Why no chemo? I have my planning meeting on Friday and I was thinking of asking if I really need it.

Hello ladies, I’ve just been catching up on the thread. Hope you are all managing ok today and remember to ask the professionals if you are feeling rough.

I had my first FEC on Thursday and have generally been ok - a bit tired, lightheaded, queasy, but all manageable. I’ve been eating dried prunes, drinking orange juice etc and that helped with my constipation.

I had a PICC line fitted and am so glad I did. The procedure was fine (the thought of it is much worse that having it done!).

I wasn’t that impressed that the district nurse never showed up on Friday to change my PICC dressing so I need to contact the hospital tomorrow as they said to go back there and they’ll do it.

I am a bit concerned that I just had one dose of steroids an hour before treatment but nothing since, as some of you FEC ladies mention more steroids? My consultant also mentioned the injections I’d need to do to raise white blood cell count, but I wasn’t given any meds so maybe that was only if I needed them…all I got was some antisickness meds. Feel a bit medication light (but I probably shouldn’t complain)!

Has anyone else had an itchy scalp? Maybe I’m just paranoid but I feel quite itchy and bumpy - maybe it’s because I keep checking for hair loss…I’m not cold-capping and have bought lots of warm hats but now I’m also wondering about whether to get a wig too as my consultant said it can be 6 weeks post treatment before it starts growing back…

Hi I am going through exactly the same as my hair is falling out big time so I know how you are feeling I am dreading Friday my 2nd treatment not looking forward to that x