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

Hey ladies,

Sorry to hear you feeling rough Davia, good you went out for a walk.  I haven't been walking much either with this yuckie weather.  Was going to head out today but now i have cystitis so rather painful.  I did manage to go to a meditation session tonight which i really enjoyed.  It was the sound bath meditation.  Now to listen to the videos.  the steroids are making me buss though! Glad to hear you have prov date for your opp.

Funny you should say that Sue, i freak myself out every time i wake up and look in the mirror!  I look like my dad! He passed away 10 years ago, but having no hair or eybrows makes me realise how much i resemble him! I've always been self conscious, being taller than the average woman at 5"10 i've always just wanted to blend in.  But now i've actually got the courage not to give a damn.  Well this week at least, ask me again next week lol! 

Before i forget, good luck for tomorrow, thinking of you :)

Well done Linda in your walks, i do enjoy mine,  Hopefully cysitis will all be gone tomorrow and I'll take doggies for a walk. I wore my wig for a couple of hours today to show my friend and in the end i was like wanna see my bald head instead!  I had red marks all over my head and forehead lol!  Hmm might have to see if i can adjust the straps!  So yeah I'll be wearing a lot more scarves.

Ah all the best for work next week.  Is this the first time back after treatment or have you been working.  Sorry cant remember.

Hugs xx

I've been back one day on nye, i'm only working 4 hour shifts mon - thurs as its chemo day friday, I want to try and work on my good week and that way my full pay sickness will stretch that little bit further as i'll be on half pay end Feb. Cancer really is the pits isnt it, not noly doesit hit us health / emotional wise but also hits us financially.

I deffo prefer being bald around the house I just have to remember to put a cap on if the door goes lol.

Lx

Good for you Linda I thought I would work but the chemo brain took over. I struggled on EC but don't seem too bad in the weekly. I hope to do a few hours a week too after chemo and waiting for opp. Work have been great and very flexible so fortunate. 

Ha ha funny you should say that, the day after I shaved my head the builder from next door, rang the door bell. I had just got dressed wearing leggings and vest top, no hair, no eyebrows, no make up and answered the door! Must of got the shock of his life as he had seen me around looking 'normal' ha ha! Well I did when caught a glimpse of myself in the mirror! 

The sun is out today so now after the doctor I'm having hot chocolate at the harbour testing driving my bolero hat. 

Hope you having a good one xx

Happy Friday ladies! Thinking of you Sue

Hi Ladies,

Thanks Mich. I had my ultrasound and mamagram this morning and the tumor has hardly shrunk, not even by a centimeter. I feel totally gutted as I might need a masectomy instead of a lumpectomy.

I actually opened the door to the postman without any head covering. He didn't seem to notice, just passed me the post and went. 

I hope everyone is doing well. Have a great weekend Ladies

love Sue xxx

Oh Sue that's rubbish, I'm sorry. Did you have carboplatin as part of your chemo?

Claire x

Hey Sue, 

Ah sorry to hear it's not the result you wanted boo. Think it will be like mine still there after the treatment so mascetomy on the cards. Although personally I'm feeling I would prefer mascetomy as I feel it would reduce the risk of more lumps, I know it can't totally but just how I feel about it now. 

Try not to worry too much about it, this is just the first stage of our treatment run, as you lovely ladies have reminded me, one step at a time

Ha ha well done in opening to the postman. Ours has mostly seen me in my dressing gown, esp over Xmas! 

Do you have anything fun planned for the weekend? 

Xx

Hi ladies,

Claire, I only had EC And Taxol. I don't know if that makes any difference to the tumor not shrinking. How far along your treatment plan are you?

Mich, haha it took me a lot of courage to open the door head naked. I think we all have our wobbles and this one setback won't win.

I'm off to Sudbury in Suffolk today to see my best friend, we've been friends since we were 4 years old. It takes about 1 1/4 hours to get there from where I am in Essex. 

I hope you all have a wonderful weekend

Love to you all,

Sue xx

Hi Sue, really sorry to hear the tumor hasn't shrunk, but they will do what's best for you x have aovely day visiting your best friend, hope the sun is shining there like it is here xx

I went in for my line flush and bloods yesterday only for them to ring to say the lab has lost my sample so I have to go in at 9am Monday and wait for results before they make up the chemo,  think we'll be in the cafe lol 

I'm going to venture out today, I ended up in bed yesterday feeling fatigued, all I did was walk half a mile from unit to car park and I was pooped, but I keep saying, last one of combo woop. I have noticed my hair is shedding, I don't know if it's natural she'd or its started coming out again, I keep eye on it.

Hope you ladies enjoy the weekend and some lovely sunshine, keep well xxxx

Hi Sue, the reason I ask is I've seen some info online saying that there are a studies showing that carboplatin is very successful in treating tnbc. Alongside all the other types of chemo.

I've finished the chemo, my scans show the tumour has gone which is amazing although of course they'll still need to test tissue taken during surgery to see if any microscopic bits are lingering.

At least you know surgery will get rid of it, I'm due a lumpectomy but part of me still feels a mastectomy would be "safer".

x

Hi ladies,

Caire, I will ask the Oncologist about Carboplatin. It was never suggested and that may well be why the tumor hasn't shrunk by much. Any idea when your surgery will be?

Davia, good luck with your chemo tomorrow, I hope it goes smoothly. I hope your hair shedding isn't too drastic, it really is an unwanted side effect.

Enjoy the rest of the weekend Ladies,

Love to you all,

Sue xx

Hi ladies,

Caire, I will ask the Oncologist about Carboplatin. It was never suggested and that may well be why the tumor hasn't shrunk by much. Any idea when your surgery will be?

Davia, good luck with your chemo tomorrow, I hope it goes smoothly. I hope your hair shedding isn't too drastic, it really is an unwanted side effect.

Enjoy the rest of the weekend Ladies,

Love to you all,

Sue 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