Hello ladies, hope you don't mind me gatecrashing your thread, but I've just read through it all and it's made me feel so much better, your all so nice and posative

I was diagnosed with triple negative BC in June, I am on my 5 of 8 cycles of chemo, these last four being Carpoplatin and paxataxil, there breaking down the paxataxil to every week, i have my last chemo on 6th January and although we shouldn't wish our lives away, I can't wait, after that it will be surgery and radiotherapy, I have three lymph nodes under my arm and two lymphs under breast, but on last scan the two under breast have cleared, I'd like to ask if any of you on paxataxil oy carboplatin have had fuzzy head, I can't explain it but fuzzy slight dizzy head, I'm at day 10, my other cycle I felt so much better by day 10, it's not really bad but just annoying as I can't drive while feeling like this. Again lovely to read all your posts and really hoping your all feeling well, xxx

Hey Davia

Of course not, welcome to our group that no ones want to join haha!  I was diagnosed in August so just had my 3rd course on Tuesday.  Not feeling too bad at the moment, fingers crossed it stays that way.  I have 1 more of EC then i go onto the carbo / paxo and paxo weekly.  Hope there are no major side affects of these.  How you doing on these drugs, just the dizzyness.  

I have in my lymph nodes too so will have to have all of them out, little worried about the opp but one day at a time eh.  I'm also waiting on my brca test, guess they will send a letter confirming yay or nay.

Yeah i could drive for a few days after my second one, felt like i was on drugs all week!

I managed the cold cap on Tuesday, but hair is thinning quite a bit so not sure if I'll carry on .

Hugs

xx

Thanks Sue, Im hoping my hair is just normal hair drop, my eyelashes are near enough gone, they were the last things to fall out after the eyebrows lol but I'm getting good at pencilling them in. 

I do forget that the combo hits me harder than the weekly paxol, takes longer to recover.

Mich I hope your enjoying this lovely weather by the harbour, I've just got back from having a small walk, sunshine is so lovely.

Claire great news about your scans showing tumour has gone x

Keep well ladies xxx

Hi sue, I had doctetaxol and carboplatin last year when I was having treatment for tnbc, the first chemo session I had made me really ill and inflamed my bowel. I had a bad reaction to docetaxol, so they took me off that then done surgery, and found out that my Cancer had shrunk by 90%. it was 3 cm to begin with. I then went on to continue chemotherapy weekly paclitaxel and carboplatin every 3 weeks. I was a lot better. I would definitely ask for carboplatin as it is known to work in shrinking tnbc. Xx

Sue, my surgery is 7 Feb.

Ladies that are going out without headscarf or wig, definitely brave :) I've been out a couple of times by mistake, fortunately only to places that were within 5 mins of the flat, but I felt so self conscious. Someone mentioned height, I'm also tall, 5 ft 11. And slightly overweight so I feel like a man when I don't have my headscarf on!

Davia, I can't believe they lost your samples, how annoying!

Ellie, thanks for sharing, are you clear now?

x

I finished my treatment in October, suffering from neuropathy (numbness in hands, feet, and pains in legs) from the chemo, and extreme fatigue. but other than that I got the all clear from mammogram last month. I am having a ct scan Friday though, as been getting bad bone pain and side pain, so the oncologist is looking into it just incase it's back and metastasised. Fingers crossed it's not And it's just side effects still from the chemo Xx

Hi Ellie,

Thanks for replying to my post. I'm so pleased you got the all clear, when were you diagnosed? Hopefully your pains are just a side effect from chemo, it's one powerful drug!! I will definitely talk to my oncologist about the other chemo as most ladies with TNBC seem to be on it. 

Xxx

I got diagnosed 2nd January 2019

it is definitely a hard long journey, but we can all do it! let's not let this horrific disease beat us. 

sending big hugs xx

Hi Ellie,

You've given us all hope

XXX

Hi ladies, 

Been feeing a bit bleugh this weekend so no seaside walks for me, just stayed indoors. I did walk quite a bit on Friday and as u said Davia these must be my down days. I woke up early this morn with a migraine so slept again for a while and then woke up again all teary! I feel OK now just a bit zonked. 

How was your catch up with your friend Sue, hope a lovely day out

Yeah no eyelashes for me now, had a lookntbhsi morn if worth putting mascara on and err no. Think my hair has grown though, seems fluffy and spiker lol! 

That's annoying Davia about your tests, hope they can get it sorted tomorrow morn. I'll be up early for my pre assessment at 0820 zzzzz

Hey Ellie, thanks for the update and glad to hear you have the all clear. Sorry to hear about the pain. I had it a lot when on AC and only get it a little when on the carbo. Have you had it throughout or did it start when u finished?

Ah thanks Claire, another tall gal! I said to my husband the other day, don't I look like a man now? His response was, don't be daft! But as I look like my dad I do feel like a bloke. Now i  make sure I wear earrings now every time I go out and try to wear a pretty scarf around my neck My husband has long hair too, which doesn't help!

Hope u ladies are having a good eve xx

Hi Mich,

I hope your pre-assesment goes well today.

You made me laugh, I bet you don't look like a bloke. When you wear make-up, earings and a pretty scarf, I reckon you look pretty as a picture. We all feel self conscious when going through chemo but what I have learnt is that it is noticeable to us and not other people. I haven't had any strange looks even though I look weird.

love to everyone,

Sue xx

Ha ha thanks Sue, yeah I was in an over analysing phase!

pre assessment all OK, so set for 9am on Wednesday. I don't have my next schedules yet, theyll have it on Wednesday. Hope don't get afternoon slots I always pass out!

How did it go today Davia? 

Xx

Ha ha thanks Sue, yeah I was in an over analysing phase!

pre assessment all OK, so set for 9am on Wednesday. I don't have my next schedules yet, theyll have it on Wednesday. Hope don't get afternoon slots I always pass out!

How did it go today Davia? 

Xx

Hi Mich, 

Sorry you had a blurg weekend, not nice when your brain goes into overdrive, hope your feeling better now, and glad pree, assessment went well  

My hubby advised we leave at 8am to get to hospital in time for 9am, (think I said they lost bloods on Friday so had to go in early to have them done again,) but sods law the traffic was good so arrived at 8:35 but was a, result as oncologist was there so spoke to her to ask about pet scan and surgeon app, she sorted straight away, pet scan booked for 7th Feb agggg,.

We went for breakfast in cafe and I got in chair for chemo at 11:40 so not to bad, home at 2:30, but wide awake now on stetoids lol

You did make me smile, looking like your Dad, I see my brother when I look in mirror, my hair style is the same near enough lol so yes the make up is well and truly put on and pretty scarves and hats, I do see people looking at me but it doesn't bother me at all, I think they just look in a caring way, I have had so much kindness I'm really blown away with how kind people I hardly know,l are. 

Next week is my last chemo, it's the paxol, it feels exciting but weired as well, what a strange emotion to have A!

Mitch you must be close behind, hang in there, we've come this far, xxx

Keep well ladies xxxxx

Hey ladies, 

Ah thanks Davia, feeling better well mentally at least! I woke up with a cold today, I know on chemo day! My hubby has been nursing one for 2 weeks so knew I was bound to get it. So all dozed up on paracetamol and drinking honey and lemon now. Hmm how many guess I'll be wide awake at 3am!

Chemo went well was quite quick actually and was back home by 1200! I fell asleep again even drank offee to stay awake a bit! It's the combo next week.... I have 6 more, 2 combos and then the 2 in between so will take me to the end of Feb.

That's great Davia you have a scan booked. Is that a standard scan after chemo to check everything. I still haven't heard from my oncologist on the appointment I missed nor the times of my treatment next week, I should get a call this week. I'll follow up tomorrow afternoon, can't take that long to book a time slot for my chair!

Ah and I've noticed my hair has grown in 2 and half weeks of shaving. It looks a bit messy as fluffy and spacey so might go over again tomorrow. 

How's everyone doing today? 

Xxx

Hi Ladies,

Wish you better Mich, a cold is the last thing you need!! I haven't had any scans apart from 2 mamagrams and 2 ultrasounds which I find really odd. I have my surgeon's appointment tomorrow to find out what surgery I'm having.

I'm having my hair trimmed by my neigbour today, there is hardly any to cut but it is so messy and all over the place that she is going to tidy it up (well try anyway)

I hope everyone is well, I look forward to your up-dates.

Love as always,

Sue xx

Hi Mich

You really don't need a cold on top of chemo, poor thing, hope you get rid of it soon and it doesn't delay combo next week, drink loads try flush it out. 

My oncologist said the scan is for two things, looking to see how cancer has reacted to chemo and also for the radiotherapy team, I have a lymph in my chest that is effected, on last CT scan it was undetectable, I think pet scan is to see if any avtivaty is there, I'm not looking forward to it, blooming scary, but I know it needs doing. Talking to other ladies it's normal to have a CT or Pet scan at end of chemo. You have to wait two weeks after your last chemo before having a pet scan. 

My hair is growing, it looks a mess, I get bed head now and it's a bit curly and spiky, I said to my hubby, I look like the joker from batman I really hate the way I look now, no eyelashes and no eyebrows make me look so pasty. 

After my paxol on Monday I have felt really yuk. I think it's the top up effect as I had combo week before, Tuesday I did to much and ended up an emotional mess so stayed in bed and solobed  yesterday, feeling brighter today so may venture out. 

Hope your not feeling to crapy, sending hugs xxx

Hi Sue

Maybe ask your oncologist if you will have a scan, they may bring it up at surgery appointment. 

Hope the hair looks better after your trim, I've been contemplating having my sides and back zibbed of just to give my half inch of hair some sort of style, it's looking so messy and sticking up rather than laying down.

I'm still waiting for my surgeon appointment to come through, they say I should have surgery around 21st February onwards, hope they don't leave it to long, just want to get it over with. 

Good luck with your appointment, keep well 

Love and hugs xx

Hi Davia,

When I look at my hair in the mirror, I don't know whether to laugh or cry.. I often do both!

it's four weeks tomorrow since my last chemo so I hope to get a date for surgery soon. The waiting game never gets any easier.

The hospital seem to be taking good care of you, it's hard our fate being in someone elses hands but I have to keep reminding myself that they are the experts. I hope your scan goes well.

take good care of yourself,

love Sue xxx

Hi Sue, 

Thanks Sue x

Hope you get surgery appointment soon, yes waiting game is hard. X

I do the same, some days it doesn't bother me, others I feel so gross, I say to my hubby, "I just want to be me again" I know we will get there but u till you have walked this road, you really don't know how hard it is emotionally and physically, we will start that warrior group up after all our treatments and we've kicked this C to kingdom come x

Let us know how appointment goes, sending love and hugs xx

Hey Ladies,

Ah thanks not doing too bad, just have that silly tickly cough.  So out comes the Corvonia!  I was wide awake at 5am so up having porridge and doing washing.  I only went to bed at 1am! So maybe having a cold so close to treament not too bad timing with the steriods getting me through.  Just gotta get rid of it by the weekend when i crash.  Funny thing i realised is that i have lost my nose hairs so you dont get th tickly feeling any more when you are going to sneeze and no pre warning when your nose is going to start dripping like a tap when you bend down, no hairs to bufffer haha!

I'm staying indoors today and keeping warm.  I might ice my christmas cake,ive got the fondant and marzipan out.  Although cant really call it christmas cake any more.  Just didn't get around to doing it!  Hmm maybe celebrate my boobs cake.

Good luck for your appointment tomorrow Sue :)  Ooh and fingers crossed Davia your opp will be around 21st Feb.

I'm going to trim my hair too today.  Going to pop to my friend around the corner and use their clippers. Hubby says it looks less scruffy when shorter, hmm thanks!

Hugs xxx

Mich I just looked up my nose, no hair, I never noticed lol

Maybe mould the cake into boobs before icing with pink icing, ha ha ha, we will all meet up for a boob party :D

Xxx

Hi ladies,

Just a little tip for you re: the lack of nose Hair. Put a dab of vaseline inside your nostrill, it stops the dripping.

I've had my hair cut and I can't say I feel any better for it. I used to have shoulder length hair and I can't get used to seeing myself looking like WorzelGummidge.

Onward and upwards Ladies, we will beat this. 

Stay warm

xxxxx