September 2019 Chemo Starters

[Nettyj]

Hi 👋

Im starting chemo on Friday 6th September. I’m having Carboplatin. It’s my second regimen of chemo. I finished FEC at the end of May. 

Ive decided to have a picc line as my veins went south after my last lot of chemo. I’m having it fitted before my treatment Friday. 

I have metastatic TNBC. 

I’m positive and know the treatment will help maintain my quality of life. 

I will get my stash of meds from my oncologist at my pre chemo appointment  on Wednesday get everything you can people. 

😊

[sugarpuff1972]

Hello everyone

I am starting my chemo on Wednesday, a bit apprehensive, but also looking forward to getting on with it.  I am having 6 rounds in total, 3 FEC and 3T.  TBH I don't know much about what it all means!  I am going to try the cold cap.  Reading some of your comments, I am happy to report that apparently I have good viens!  I have been quite positive this last week, but on a bit of a downer today!  It's good to come on here and be able to see other women going through the same, but with humour and grace. I have got my pre chemo appointment tomorrow, so hoping they will give me any advice I need to get started.  Also having my hair cut shorter tomorrow, hopefully reducing hair loss, but if it goes, it goes.  The important thing is to know we've done the treatment!

Quick question, this last week I have felt queasy a few times, watery gills and all that.  Usually better if I eat weirdly.  Do you think its stress?

Good luck to all you fellow September Starters!

Emma xxx

[Susie B]

Hi everyone 

I'm from the Feb group and am TN the same as mini mad and have had a PICC line since Feb, so a very long time. I'm on a trial, (ROSCO) 4 rounds of FEC, followed by lumpectomy and full ANC back in June, followed by 4 rounds of TC, the 3rd one on the 30th Aug and 4th due on 20th Sept, followed by radiotherapy. I was randomised to receive FEC prior to surgery which shrunk my tumour but wasn't so successful at destroying the cells in my lymph nodes hence different chemo after surgery. The PICC line has been a great success the same as mini mad. 

OK the positives:-

Fitted under local anaesthetic and completely painless.

Bloods can be taken from the line

Chemo goes straight in.

It can be used for IV antibiotics should you unfortunately need them

If there is any scaring at the point of entry you'll hardly know it's there.     

OK the negatives:-

Weekly hospital visits for PICC care when you are not having treatment during that week.

No swimming🏊‍♀️🏊‍♀️☹.

When showering you will need to wear a waterproof plastercaste cover, available on prescription, to keep the PICC line dry.

During the warmer weather the line is on show but you can by pretty covers. Long sleeved tops in the cooler months won't be a problem.

One of the girls in our group had a portacath so feel free to pop in and have a chat and she can tell you about her experience.

Susie B xx

PS. It's sunny down in here in Somerset too☀️☀️☀️☀️    

[pinkflamingo]

Thanks, mini mad - it was suggested that I consider having a PICC line when I went for my new patient assessment yesterday. Left undecided so really timely to hear your positive comments. Did it require additional appointments for flushing it through or anything? And on a day-to-day basis, did it get in the way? Sorry for all the questions!

x

[mini mad]

 Hi lovely ladies.  From a sunny Norfolk.. ☀️☀️

just popped on here from the June chemo monthly .  Re PICC lines..

i also have trouble with my veins and was dreading the cannula so after my first treatment i had kinda decided i would like a Portacath for my future sessions.  

I had 12 weekly Paclitaxel and 4 lots of Carboplatin every 3 weeks for 4 cycles.  I am Triple Negative.

discovered at my hospital they dont do portacaths so went for a PICC line.

well best thing i ever did.... the local jabs were a bit painful but didnt feel anything putting the line in.

have had NO problems all the time it was in and felt nothing when the chemo nurse removed it last wednesday.   No swelling. No infections, no blockages... nothing....was  all good and i revommended the PICC to a few other ladies in my unit who both went on to having them in  👍

wishing you all the very best with your chemo.

i had my FINAL one on friday 23rd august..... so relieved and kinda proud of myself ...

mini mad xx 💖💖

[yorkshire_defector]

TOP TIP FOR NEW CHEMO'ERS
There is a link to a (VERY!!) extensive list on the Macmillan/breast cancer "September chemotherapy chat 2019" discussion thread which covers everything you could want plus about 1000% more...may be of help if you want a vv full checklist of things that you may need for your chemo day or thereafter.

Happy to provide better directions if needed...

[yorkshire_defector]

Nicky
Really just knowing what was actually going to happen the day of getting the chemo as it wasn't at all what I expected.
I'd also have a think about whether you want to stick with the cannula (assuming that's what they offer), I have crappy veins so am going to a port (seems far better than a PICC) - I asked someone on the chemo ward (where they took my bloods) who had experienced both and there's too much blummin faffing with the PICC though port is an operation with local (I think?) anaesthetic.
Also, may be worth checking whether they have blankets (you may want to bring your own?) Not sure if you're doing cold cap but if so check they know and may hasten need for blanket too.

Have fun! And make sure, unlike me in lots of cases, that you can actually read what you've written in those precious notebooks.

Sam X

[yorkshire_defector]

Berylperil
Nice name, like it. Have decided you're my chemo twin as we both had our 1st sessions on the same day.

I too found the staff on the unit, as well as all those I've come across in tests and cancer team (asking 50+ questions to) all really caring, supportive & actually interested in you, the patient, the NHS really does have its moments and triumphs over private organisations who believe that they offer great customer service (but generally don't!).

You only had 2 anti sickness drugs eh? Am on different chemo drugs but have 3 lots and some steroids but only for first 3 days (one lot can carry on taking as & when needed) but am now wondering what's so special about the 1st 3 days?? I do however feel like I rattle when I walk.

Good you've only been ill once, obviously be better of it was not at all but still...I've been lucky so far (touch wood and all that) that have felt at times a bit odd but that's it.

I think given you've been sick once so far I'll liken your journey so far more to the waltzers which since I went on once and bought back up my fair treats (hot dog, candy floss) never went on again funnily enough.

Sam x

[pinkflamingo]

Morning!

ooh - I love a plan!! I too have my trusty notebook. I have my new patient assessment this morning (saw oncologist last Weds) - any questions you wished you had asked with hindsight?

Really hoping everything ok in checks as really want to get on with treating (getting rid of) the lodger now. 

Take care, speak soon!!

Nicky x

[yorkshire_defector]

Hi Pardeep
Like me you're having chemo then surgery - v similar but your chemo drugs are the other way around, so you can let me know all about the joys of taxol that I will be starting mid November, following EC.

I think its a really positive thing to join these forums and share experience and get support, all be it from afar so good on you!

Let us know how you get on.

Sam X

[Susie B]

Hi berylperil

Just popped in from the February 19 group and saw your post. Like you I am also TNBC. The chemo beginning with D is Docetaxol. I must admit I was a little confused when D was referred to as T but you'll get used to it.. As for starting treatment that's when I finally felt a sense of calm knowing that my body was finally getting the extra help it needed. As for the sickness, if you haven't been prescribed it see if you can be given the anti-sickness drug Emend  as it's the gold star treatment but expensive. I think there's a couple of you in this group with triple negative but if you want to drop into our group and talk there's a couple of us too who'll be more than willing to talk about our journeys so far.

All the Best, Susie B xx. 

[yorkshire_defector]

Pinkflamingo,
Phew, thought there was just going to be newbie me chatting to myself for a while there so good (in a way!) to see you onboard.
Like you too I am being very positive, luckily am an eternal optimistic as well as being a daft northerner...it all helps.
I have also found the "being/feeling in control" aspect works well and have several notebooks on the go (one entitled "my ailments" - been quite a dull plot so far) to refer back to (as my memory was already shocking) for future cycles, check if anything am eating needs changing etc. And I love to plan, that said however despite setting alarms for the pills sent home with was vvv disappointed that didn't manage the 100% success rate re timings yesterday - most upset my "clever" system failed, have now reverted to a hand written one on the inside of an old cereal box, far more reliable...

Good luck for Friday, presumably you're doing bloods & a once over by doc before hand?

Let us know how you get on, am sure you'll whizz through as most people I've been annoying on a few forums have.

Sam X

Sent from my iPad

[berylperil]

Hi 

First chemo was Thursday (29th August), so I have sneaked into the September group!

Was terrified, but session was nothing like I had feared. I am on carboplatin and the one beginning with D that is referred to as 'T'!   Unit I attended was lovely, tea and custard creams enjoyed! 

I didn't go for the cold cap, I had been told in clinic that if there was no machine available this may delay treatment start, I definitely didn't want to delay.  As it turned out, there was a machine for me, but at this point I felt I had made my decision and wanted to focus on the chemo, and not worry about the cap. Wig fitting is tomorrow!

 I actual feel better, I was   diagnosed August 1st, the waiting is a torture in itself, when you are simply reeling from shock and trying to process. Starting treatment feels like the first positive thing to happen to fight back at the cancer in my body. 

Came home with 2 sorts of anti- sickness, I was nauseated early hours on friday (yesterday), and was sick just once.  Feel ok, and by yesterday afternoon I was making soup! 

I have 6 cycles in my plan over 18 weeks. I have triple negative. 

Hoping as the September gang we will see each other through this roller coaster. X

[Pb]

Hi All.

I think I have been in denial till now but have my first chemotherapy session next Thursday.. 

12 weekly paclitaxel followed by 4 lots of three weekly EC.

Scared but glad treatment is starting soon.. 

I am having chemo first followed by surgery then radiotherapy.

It's great to have this thread to support each other.

Pardeep...x

[pinkflamingo]

Hi all,

Just got the date for my first cycle of FEC - Friday 6th. Got 3 cycles, followed by 4 of T plus Herceptin and pertumazub. 

Had SNB mid August which was clear so ‘pleased’ now to be actually starting on treatment. 

So useful to hear other people’s experience and to know we’re not alone. 

Good luck everyone 💕

[yorkshire_defector]

Just so you know what to expect on 1st lot of EC (no idea if its like this on other drugs), despite all my home work/forum lurking I was still surprised.

The actual chemo only took max. 30 mins
The time is taken by anti sickness meds that are given 1 hr before chemo starts (there was 2 tablets for me)
The next lengthy time was the hydrating saline solution given after chemo (c45 mins I think)
The E bit is red - and it comes out pretty much the same colour
Steroids given pre chemo made my nether regions tingly - quite normal, an odd sensation but nothing to worry about.

From start to finish it was 3.5 hrs, should have been less but I can't stop talking, expect 3 hrs unless you're a gobby northerner like me.

Cold cap was fine, not painful (though I do have quite a high pain threshold) more uncomfortable due to the fact it needs to be between -5 & -15 degrees to do its job but with distractions (mainly me & my gob) didn't notice it too much after the first 10-15 mins. I took a headband to protect my forehead.

Didn't need the sherbet lemons I'd spent 90p on - do you think Asda give refunds??
Also didn't need any of the blanket, hat, gloves, scarf or socks that I took, mind you I hate being warm and am in balmy surrey. They will however be back in my chemo kit later on in the year.

So all in all a long but good day, absolutely lovely nurses, pharmacist ( who has given me a billion tablets for anti sickness to take over the next 3 days or so) and other hospital staff so am very lucky. My breast cancer nurse also showed up for a chat which was lovely.

Hope everyone else is as lucky, still early days though so let's see what delights tomorrow holds...

Sam

[yorkshire_defector]

Phew, thanks and goodnight X

[Jencat]

Hi yorkshire_defector, don't worry you won't need to put pampers on your list! I used the cold cap when I had chemo and if I needed the loo I was briefly unplugged from the machine so I could go. I did have to take the chemo machine to the loo with me though! x

[yorkshire_defector]

Thanks for the suggestions re what to take on the day however have another question, having not had the joys of chemo before...

Can you move around whilst having the drain cleaner administered with paxman cold cap on?  Whilst my bladder capacity is bigger than average having to drink lots of water during may mean I can't last the distance...alternatively do I need to put pampers on my shopping list??

Again all replies gratefully received...am sure there'll be more random, yet highly practical, questions coming your way...lucky all eh?

Ta X

[Susie B]

Deffinitely take a blanket. My Macmillan run unit gave me a knitted patchwork blanket. I have a PICC line and even in hot weather I found I needed a warm pad to keep my arm warm as I can't wear anything long sleeved whilst having chemo. Possibly socks. Take 2 paracetamol an hour before cold capping.  Sweets such as mints, lemon sherbets to suck as sometimes you get get a strange taste in your mouth😝😝. Very thin armed glasses if you need them for reading as the cap is a very tight fit. If I think of anything else I'll let you know. Rest assured you won't need a shopping trolly 🛒 but be ready for the bag of goodies the hospital will send you home with💊💊💉💉💉💊💊💊.

Susie B xx

[Shi]

Your pre chemo meds, I had to take tablet 1 hour before chemo, if you have to. If you are cold capping, blanket is good idea. Sounds like you’ve packed your humour too 👍which will help too 😁 let us know how you get on 👍💕💕✨✨Shi xx

[yorkshire_defector]

Hi

Just making a list of what I should take with me for my first chemo, so far its

-paracetamol (I'll be cold capping)

-book

-some herbal tea bags

- water bottle

Debating blanket/hat/gloves but as I am melting currently (and hate the heat) am wondering if will be ok given warm weather?

I don't want to be weighed down by stuff as am travelling by train to get there (being picked up after) so what am I missing that I really should have & doesn't result in my needing to commandeer a shopping trolley at either end of rail journey??

Suggestions appreciated...

[Jencat]

I'm from the Oct'17 group and like Susie, TN. One of the things that I found useful when I was having chemo was wearing travel bands during the chemo infusion and for a few days afterwards. I don't know if it was just a coincidence, but I wasn't sick at all. They might be worth a try x

[Susie B]

Hi everyone 

I'm from the February group and thought I'd add an extra couple of tips which I found helpful. Firstly I packed an overnight bag so that if I had an unexpected hospital stay I had a bag ready to grab and go. It also meant everything was ready for my surgery after chemo. I also had a dedicated bag for routine hospital appointments, onco appt, chemo, bloods PICC care, etc. I kept things in there such as hospital appts book, hair band for cold cap, paracetomol incase I forgot to take them prior to cold capping, sweets,  hand cream, hand gel. All I needed to do was pop in my purse and phone prior to hospital appointments. There's quite a number of us in our group so if you want to ask questions or just pop in for a chat someone will always get back to you. I am on a trial and so have had chemo, surgery, chemo, to be followed by radiotherapy. I am due my final rounds of chemo on the 30th Aug and 20th  Sept. Also I am triple negative (There's 2 of us in our group).  I  am sorry you find yourselves here but you can and you will get through this. Take care and I'm sure others will join your group in time.❤❤❤

[murphsmum]

Hi, I start chemotherapy on Monday 2nd September, haven’t been thinking about it too much but am being quite practical. I ordered a ‘chemo kit’ off Cancer Support, I am going to go to the dentist this week and hopefully get an appointment, I’ve had about 6” cut off my hair, I’m going to sort a wig and headscarves this week, I’ve got hard boiled sweets and have ordered a thermometer and some soft toothbrush heads. I’m also having a ‘pre-chemo’ get together with a few friends and family tomorrow. Not sure if I’m in denial but I would imagine I won’t be feeling very ‘practical’ this time next week 🙁

[Shi]

Hi Anna gabanna, I’ve replied On your tn thread too 😘😘 💕💕✨✨Shi xx

[Shi]

Botty back up and I kept chart 🙄watch out for the text gremlins too 😂🤣😂🤣😂can turn normal post into something all together different 😂🤣😂🤣💕💕✨✨Shi xx

[Shi]

😘😘thermometer to take your temp regularly with, soft tooth brush, difflam mouthwash, get your teeth check up done before chemo, your dentists will fit you in when you tell them you are starting chemo. Silk pillowcase if not cold capping gentler on head. Think about donating your hair to little princes trust that make wigs for kids, turn it into a positive 👍👍👍ginger biscuits, ginger sweets, anosol, movicol/senokot or anything that makes you 💩 the steroids can give you bitty block on fec, if doing t, you might need Imodium 🤪sorry to be talking 💩 on our first thread chat but you need to know, also baby bum wipes are very useful too 👍👍 I keep chart each cycle to check my temp, amount of water I drank and meds timings, it did help because you can get chemo brain and think 🤪🤪🤪 now hang onto each other 👭👭and keep 😁😁😁and 😂🤣😂🤣through 💪💪💪and people who have previously done the journey will pop on and 👭👭advice if there is anything anyone could help with 💕💕✨✨Shi xx

[katttz]

Hi, 

I’m Kate and I live in Leeds. 

I was diagnosed with invasive DCIS stage 2 HER2+ at the beginning of August.

My plan is for 6/7 rounds of chemo followed by right sided mastectomy and axillary node clearance.

Ive had all the blood tests and scans apart from an MRI which is on Tuesday with my first chemo booked for 9th.

This all still feels quite surreal as I feel so well, I just want to get on with it now and get on with life! 

I haven't bought anything in preparation yet, have any of you? I have a few items in my amazon basket , just sitting there. 

Hoping we can help and support each other throughout our journey’s . 💗

[AnnaGabanna]

Hi All,

Fairly new to this thread, I am meant to start chemo on the week commencing the 2nd of September: Plec = weekly and Carboplatin every 3rd week. I have PICC line insertion procedure due on the 4th so they'll probably put a cannula on the first session. Not sure if I am going to give the cold cap a go. Also, I need to have a GFR test done on the 11th of September. I am really, really nervous and scared.

[yorkshire_defector]

Hi
Think I'm 2 days too early for the Sept issue but not letting that stop me...

I have my first EC on Thursday, I think I've bought everything (& more!) that I could possibly need to keep warm, look (more!) gorgeous and allow for the fact that at some point hair may go bye bye.
Not scared as such just interested to see how my body will react...its been an interesting journey so far which is moving up a gear.

Good luck to all

[Emzlew]

Thank you Mai7

Thank you for starting this thread.

I was diagnosed 4 days ago with stage 3 BC which is also in my lymph nodes (2 I believe) 

Feeling very lost and terrified but also feeling positive.  I have a CT scan on Tuesday which is also frightening.  I know it's routine but still scary! 

I have my Oncologist appointment on September 10th with a view to starting chemo not long after.  They have recommended I have a mastectomy after chemo followed by radiotherapy. 

This is all so overwhelming and I'm not really sure it's all sunk in yet but I'm keen to get started.. 

There are more results with regards to receptors which I understand has to do with what treatment they will give me?!  There is so much to take in and so much to learn but I guess that will all come. 

I don't even know which part of my breast it's in?  I didn't hear that part?! I guess I can just ring and ask? 

I'm sorry for all who are on this forum and to those who are about to join but together we will get through the grueling months ahead!! 

We've got this!!!! 

Sending love, luck and strength to all xx

[Mai7]

This thread is for anyone due to start chemotherapy in September 2019.  Others will be here soon but please come on here and introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.

Here is the BCC guide on chemo:

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

I finished my chemo over a year ago and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum: http://lifeafterlola.com/

Best wishes xx