Sandra,
One step at a time, although I know the waiting game is difficult, I’m still waiting for the results and to know what treatment I will need. And your treatment has begun properly, after all they have cut out the cancer, the chemo is to kill off any little bu…ers that escaped.
Hi Patricia
I’ve just been reading your thread and remember your name from a thread I’d posted a few weeks ago so just wanted to say hi and share my chemo experience with you.
I had my MX and node clearance on 8th March. 10.5cm tumour, grade 3, 12/25 nodes effected, ER/PR- and HER2+. I had a CT scan for secondary cancer and after the worse week’s wait in my life the results came back clear. I started my chemo on Monday. I’m having 3 x FEC and 3 X Taxotere followed by 20 rads and then Herceptin for a year.
The chemo experience itself wasn’t too bad. There is a really good thread about stuff to buy in preparation for chemo - I’d strongly recommend you have a look and stock up beforehand! Other good time is to drink as much water as you can (at least 2 -3 litres) the day before, the day of and the day after the chemo.
The chemo injections don’t hurt - although its a bit strange seeing the bright red epirubicin going in you. And you will be warned about some strange sensations as the chemo goes in. One makes your mouth taste strange (take sweets - my OH and I demolished a whole pack of Haribos), another one makes your bottom itchy (!).
I felt fine afterwards. Came home, had soup, watched a film, had a cuddle with my 3 year old. Then about 6pm I felt like I had really bad food poising and crawled into bed for the next 14 hours with a sick bowl! However, I wasn’t sick and by the next day it just felt like I had a very bad hangover (a familiar feeling). Yesterday and today I’ve been up and about as normal, working from home on my laptop, running the kids around etc. I can’t say I feel top dollar, but its all doable.
I know everyone experiences these things differently, but I hope in 8 or 9 days time you’ll be back on your feet with one chemo behind you.
Best of luck
Emma x
Emma
Hi and thanks for the post - My gawd your tumour was bigger than mine! (mine was 9cm) and we have similar high node involvement. I am ER+ though so will be have hormone treatment after my Radiotheropy. Like you I had a clear CT scan (again a huge relief) but I want any lurking blasting away as soon as possible as I know how devious and clever those nasty cells are, I am really hoping that the treatment just does that!!
Its really reassuring to hear your experience of Chemo - i will be about a week behind you. Did you bother with the cold cap? Are you having the injectins to boost your white blood cells in between treatments? I have been looking on here for tips of what to eat/drink etc and will make sure I drink loads of water. Did you take your own water to the unit or do they supply it for you? - I will stock up on sweets etc too.
Glad to hear the side effects were not too bad for you. It does seem to differ significantly I am just keeping my fingers crossed that I don’t have too bad a time. I am not at work at the moment so I can just crawl into bed if I feel unwell and will do just that! Like you say I will soon be in a postion as where its one down two to go (FEC that is) I will worry about TAX nearer the time! I have a date for my 2nd FEC (11 May) but nothing else as yet… I think the Onc wants to see how it goes before booking too many dates in advance.
Patricia
x
Hi Pat (and any other ladies about to start chemo)
Your medical team will take blood samples before each session, usually the day before or in the morning that your treatment is due. They check to make sure your white and red blood count have come back up enough to allow your treatment to go ahead. If not, they’ll delay the treatment and repeat the blood tests until they do. Just something to bear in mind if you are planning things around your treatment dates. When booking hotels and things I always asked their policy if I had to change dates at short notice.
I forgot to say in my message yesterday that I found the side effects from the blood boosting injections were worse than the chemo. I had pain in my bones just like you get with flu. The upside was they didn’t last long and I could predict exactly when they came and went.
best wishes for a smooth ride. Jan xxx
Hi Patricia
Not sure why, but l have been on quite a high today, probably the thought of another bit closer to chemo! who would have ever thought l was looking forward to having chemo! my world has gone mad.
Yes l agree, what you say about the cold cap, seems our onc does not like it, for the very reasons you have said! do you know him??
Hope you have ‘fun’ with your friend finding a nice wig! are you going for the same colour and style or something completely different, or is it a wait and see?
I am sure many people cry when they first go the chemo unit! and why not, let it all out and then get on with it! disagree! everyone loves a cry baby, when there is a good reason, and that first visit is a good reason.
Emma/Patricia, none of this…mine is bigger than yours…otherwise we will all want a ‘big’ one!!
Love
Sandra xxx
Hi Sandra,
Sandra Glad to hear you are feeling a bit more upbeat - I seem to have wobbly days and then I am fine - I am sure there are more wobbles to come! I think I will get a ‘boring’ wig that is very like my current hair - I don’t think I am brave enough to get anything else at the moment. Will let you know what I decide!
Thanks for the advice Jan its nice to get it! not nice to hear about the side effects of the blood boosting injections though (they haven’t mentioned that to me - only that I will have to give them to myself!
Pat x
Hello ladies
I was feeling a bit blue today but your posts have made me smile. Can I ‘win’ at cancer by having a bigger tumour than the rest of you? lol.
Patricia, I decided not to go for the cold cap. I’ve heard mixed reports about its success and also that it can be uncomfortable and extend the time the treatment takes. I’m pretty resigned to losing my hair and the children wouldn’t forgive me if I denied them the pleasure of helping daddy to shave it all off!
I’ve not received any info from the onc team on injections to boost my white cell count so far.
I took a huge 2L bottle of water with me on Monday. I’m sure you can get water there but those paper cups are tiny. Also I think it helps to be able to see how much you’ve drunk over the day.
I have to admit I’ve started to feel quite run down over the last couple of days. I was planning to go swimming with the family this morning but slept until midday instead. I’ve dragged myself out of bed now but feel a bit crappy. Hey-ho, at least the sun is shining.
Hi Sandra, our oncologist doesn’t recommend cold caps. Having said that I didn’t like the sound of them either, anything that stops the chemo from circulating everywhere was a no no to me. I don’t mind the baldy look too much, it isn’t for ever. There are some lovely headwear and wigs available. I got my wig via Toni and Guy in Lakeside. They will go with you to the wig shop and help you to pick out a wig that they can cut to suit you, they will advise you on colour, style and type of wig. It is not cheap but is well worth the money compared to the hair cuts i have saved on since October. The hairdressers there have been trained via the charity My New Hair, which is run by the hairdressing industry. It has a website and is to help us and women with alopecia to get a good wig. My wig had been a good investment.I don’t wear it all the time sometimes i wear hats etc, it depends on the weather, i am not keen on my wig if it is very hot like today. Also when it was raining, i was not sure about the wig getting soaked. If it is very windy it gets very draughty under the wig. So i have some headwear as well.
Hi all,
I’ve just read this thread and thought I’d add in my experiences, after diagnosis in early December. Tumour 1.5 cm, eventually garded as 1 after a review as consultant said it was not behaving as a 1! From sample I had 3/7 nodes affcted. First op. was postponed due to the snow leading to extra 2 weeks wait till mid January! Then I got an infection and had a lot of pain and bother for further 5 weeks.
So didn’t start chemo till 2 March - this wait for 3 months after Dx was awful. Have now had 2 chemos (Epirubicin only so far then CMF). Doable though pain does vary between individuals on the hand as my veins are rather shot due to the earlier infection and antibiotics. Once cannula is in its ok though. Haven’t been sick, just feel nauseous and v tired for a while but I’ve walked a lot, gardened a bit, cooked, pottered etc so not bad.
Had axillary clearance on Tuesday and was dreading it after last experience, but so far, much better and I’m amazed at no pain as I was on loads of painkillers for 6 weeks before!!
Daunting bit now is to pick up on chemo No 3 on Friday. And also I’ll hear about how many nodes affected on Wed. This cancer journey has a lot of twists and turns IME, and certainly ups and downs. I have found its better just not to panic, get out in the fresh air, see as many supportive friends as poss and take one step at a time. And I agree about drinking all that water for chemo- seems to help me anyway and flush it all through quickly. I also find each time you have to confront it again eg an appointment or starting chemo can be upsetting though. I think we all need to cry now and again.
Good luck.
Hi Patricia and Sandra
Well I have had a few bad days, feeling good today as my daughters birthday and we went out for a meal, my results were not quite what I wanted to hear as more nodes were infected so I now have to have chemo and then radiation. It was such a relief to have the drain removed just need to get my arm moving. I now have to see the Onc next Friday which I am dreading but I want to thank you all for your messages concerning chemo and the Cold Cap as I had mixed feelings about it.
Will be thinking of you Patricia on Wednesday when you have your first chemo. Glad your op went ok Sandra, its so unfair we have to wait so long for the results.
Take Care
Emily xx
Hi Emily,
Sorry your news wasn’t as good as you were hoping for, why does it never go OUR way!!!for goodness sake give us a break!
April, is always a busy month for our family and friends, we have loads of birthdays, mine was the 17th, we went for a meal, although must admit, l have a real problem eating!! but we try and put that brave face on in front of everyone!
We had the family for dinner today (11 of us) and while it was lovely, the shear horror keeps coming up and getting me! one minute l think ‘this can’t be happening to me!’ the next l want to run away and escape from this nightmare, but sadly no where to run!
And thinking about it, why would l want to run away from my lovely family.
I have to go for a check up on the 20th, but they said l probably wouldn’t have the results from the margin they took, as it was too soon, so should be the following week! waiting waiting waiting!!!
will my chemo ever come?
Hi sandripples
Yes again the waiting game, i was diagnosed on the 9th Feb, and still not ready for chemo, just cannot get my head round the waiting, it seems and endless nightmare, far, far too long to wait for treatment. Good to hear you are managing the chemo, and still pottering around, it does help when you can keep yourself busy.
Hi Bboonie,
will pm you!
Hi Emmass,
You are at it again…wanting injections to boost your white cell count!
Just because Pat is having them…does it mean you have to???
Yes you are right about taking your own water, otherwise with our ‘brains’ we would never remember what we have drunk!
Sorry you were feeing run down, just go with your body! if it says sleep then sleep, and if it says run a marathon then do so! Hey just thought my son is doing the London Marathon this weekend, so if you feel up to a little run with him, l am sure he will pace you! he expects to do in in about 3hrs 20 could you manage that? Lol
Hi Pat,
My upbeat day didn’t last long, had a couple of wobbly ones since then! but what can we expect!
Yes, l am with you, with regards to the wig, mine will be as near as dam it to what l have! l feel odd enough, without a different style and colour! want to just be ME again!
WOW giving yourself your own injections! whatever next! better than going to the hospital every day for them!
Love to you all
Sandra xxx