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

Hi Ladies,

Mich, Taxol is much kinder to your hair, mine even started growing back slowly whilst on it.

I am thrilled to be finished chemo but have other worries now. I was told the safe limit for surgery after chemo is 4 - 6 weks but I am only having an ultrasound and mamagram on the 17th Jan which is 3 weeks after my last chemo. No surgeon's appointment yet or surgery date so I doubt it will be done in the time guide. 

The wait for the BRCA is never nice but hopefully you will be negative. 

Good luck today Davia. I hope it goes OK.

How are you getting on Claire?

Happy New year to you all.

Love all round,

Sue xx

Thanks Mich. I think you will notice the hair growth, it is slow but I haven't lost any like the EC, my leg hair is growing back to lol

Hope you've had a lovely walk, sun is shining and it doesn't feel to cold. 

My taste buds are very hit and miss, some days OK others salty others no taste at all, but apatite is still OK.

Sue, is safe period to get you over chemo, get your bloods back to some normal,?( Normal what is that lol)

Stay well ladies, xxx

Hi Ladies, thought I'd come in and wish you all a very happy HEALTHY new year, it's an emotional day for me, I normally feel funny on NYE but this year I'm just reflecting on what we've been through, but 2020 is going to be a great year for us all, Worrier club here we come. 

Love and hugs to you all xxxxx

Thanks Davia! Happy New year ladies 2020 is going to be a great year for us warriors! Gonna kick butt! 

At the moment I'm being lazy in bed already, no celebrating for me lol! Yeah mixed emotions too, esp when I see all these post of friends on FB professing how wonderful their lives are. I know cynical much!

Hope u ladies are doing ok today. Don't have any plans for tomorrow so maybe lunch and a walk. I did want to go to London to see last of the Xmas lights but hubby not too keen, he does worry a lot about things. So lazy day in Kent tomorrow. 

Hugs all around xx

To all the ladies in this group and especially Mich and Sue who I was originally chatting to, a very happy new year. May you all have swift and easy roads to recovery. 
 

Mich, hope taxol is being kind and the BRCA comes in soon.

Sue I'm delighted to hear you are through the chemo and only the lumpectomy left to go. I would not worry about the lack of appointments, I have faith your medical team will look after you. 
 

I look forward to us all being in the warrior club very soon and out the other side onto better things. Roz xx

Hi Roz, it's great to hear from you. I take it you are now fully recovered? It's so wonderful to know that you are out the othe side and hopefully enjoying life to the full. 

Have a wonderful new year, you have a lot of catching up to do. I'm having my first glass of wine as I write this, the first alcoholic drink since July!!  

I'm now just playing the waiting game which isn't much fun.

Keep well my lovely,

Sue xxx

Hi Ladies

Happy New Year to you all.

Cant believe i'm having my 2nd Fec tomorrow, doesn't seem 3 weeks since I had my 1st hope the other 4 fly past as quickly, my consultant felt my lump on Monday and said it feels smaller after 1 round so I came out feeling positive. 

Downside is my hair has started to come out so Friday my girls are going to shave it off for me so the new hats I had for xmas will come in handy lol.Oh and Genetics team have agreed to test me for BRCA as mum had triple negative in Feb 19 so its all going on atm!

Linda xx

Hi Linda,

Happy new year to you. Great news about your lump feeling smaller, it makes it all worth while. How did you get on with your second FEC yesterday? Hopefully you are able to tollerate it. Hair loss is never nice but it is only temporary. My hair looks terrible, short, lank and thin. I used to have really thick hair past my sholders. I need to stop looking at old photos as it's not helpful.

Take care of yourself,

Sue xx

Hi Sue

Hope you're well :)

It went ok thanks apart from the bossy little nurse who wanted to know why i didnt have a picc line and when I said well I didnt wish to have 1 preceded to try and bully me into having 1 telling me chemo is bad for veins, she soon stopped when i asked her if she had heard of patient choice, then sat the whole time having it saying to myself veins dont you dare let me down with her today but i actually have a very small bruise this time up to the last time haha

Pleased to say I have no nausea again and havent taken any cyclizine at all but i do have the dex fuzzy head and the aches from the lovely filrastim injections but i'm not complaining cos i know it could be a lot worse!

I'm just getting anxious now that when i start the Docetaxel that I will be hit by every side effect going but i will have to deal with that as n when.

My hair came off thursday eve as it was just faling out on its own accord and blimey i can feel every draft going so am glad i had chemo hats ready to use lol. 1st time in my 48 years i've not had hair, i was born with a mop of black hair which i never lost mum said.

Take care

Linda xx

Hi Linda,

I'm glad you are tollarating the chemo well. I have what the hospital call superficial veins. They think they can see them but I always get butchered as I think they see me as a challenge so I sympathise with you.

Well done for shaving your hair off, I wasn't brave enough to do that and used the cold cap until the very end. I'm not sure if it was really worth it as I lost loads of hair but was never bald. 

I hope the rest of you Ladies are doing well, let me know how you are getting on. I am just playing the waiting game now, next hospital appointment on 17th and nothing else booked in. I am still stressing that I dont have an appointment with the Surgeon yet.

Love to you all,

Sue xx

Hi Linda,

I'm glad you are tollarating the chemo well. I have what the hospital call superficial veins. They think they can see them but I always get butchered as I think they see me as a challenge so I sympathise with you.

Well done for shaving your hair off, I wasn't brave enough to do that and used the cold cap until the very end. I'm not sure if it was really worth it as I lost loads of hair but was never bald. 

I hope the rest of you Ladies are doing well, let me know how you are getting on. I am just playing the waiting game now, next hospital appointment on 17th and nothing else booked in. I am still stressing that I dont have an appointment with the Surgeon yet.

Love to you all,

Sue xx

Hey Ladies,

Glad to hear you are coping well after your dose.  Urgh yeah the injections.  I got used to injecting myself just struggled with the bone ache.  Taking Paracetomol and antihistamine half an hour before injecting did help.  Ah what a lovely nurse you had, not! I was given the choice on what i wanted to do an opted for a port.  if your veins are fine then continue and see how you do. 

Aww I shaved my head Friday night! I ddn't wear the cold cap when i had my first taxol / carbo as was feeling rough that morning and now i guess its caught up with me.  The past couple of days its fallen out in huge clumps so i succumbed on Friday.  its rather airy now haha!  I tried my wig on and fits ok, the fringe is too long though so have to take it back to have trimmed tomorrow and then lovely woolly hats i guess. 

I do have rash on both my hands and see rashes are a side effect of Taxol.  Do you ladies have any rashes?  I also have nose bleeds which i see is also on the list but luckily no nausea either.

 I have my look good feel better workshop on the 28th Jan, so looking forward to that esp as i have no hair and hardly any eyebrows.  Have you ladies lost your eyelashes too?  Mine are really sparse, i can barely put masraca on and end up painting my eyelids, doh!

Hugs all around

xx

Hi Mich

Sorry to hear your hair has started to fall out, what a rotter, mine fell out loads on EC but on paxol combo it seems to be growing back very slowly, but it's nice and easy to manage, that's the posative lol I tend to wear scarf and crochet hats more than wig, there more comfy, but wig is nice for special occasions. 

I have a few eyebrow hairs left and like you my eyelashes are very sparse, I use eyeliner more than mascara, I haven't booked to go on a look good feel good course, I must do it soon. 

I get spots on my face, but no rash on hands, the spots are always red and blotchy, very attractive lol

As for the picc line, I can't wait to have mine out, its been great in that bloods and chemo are administered in it, and no needles but its restricting my hobby, I have had to give it up since having it inserted, but like you say it's upto the patient what they have, I was never really given any info on what was best, I was in picc lined up on Friday, chemo on Monday, I do see a lot a people who have cannula each time so not unusual. 

Have any of you ladies had a cold while on chemo? Everyone seems to be getting this cold that's going round and I wonder what we do if we catch one? 

Well keep well ladies, xxx

Hey Davia,

Ah thanks m'dear, as I'm towards the end of my treatment hopefullly It will start to grow again soon. Yeah i have quite a few wooly hats.  Do you have special scarves? I have loads of scarves that i can try and tie, been looking at some u tube videos. 

Yeah, my hands are itchy in the evening.  i put on e45 cream and take the antihistamine. I'll as about it in my preassesment tomorrow 

Ah yes your bell ringing, bet you cant wait to get back to that :)  Have you ladies put on weight?  I have a bit after xmas and feel rather bloated and puffy cheeks!  I feel like my pre-assessment is a weigh in lol!

Luckily no cold for me, my husband has the sniffles but has managed to keep it at bay. I guess we dose up on paracetomol and drink honey & lemon? 

Hi Ladies.

Yes i think I was an inconvience to the nurse as i didnt have a picc but my veins have been ok so far on the 2 i have had so i will carry on this way unless that changes. 

I am booked onto a look good feel better workshop in Feb,im quite looking forward to it. I have wunderbrow on standby for my brows but am hoping i dont lose those or lashes  (I can wish).

Sending best wishes to all

Linda

xx

I used you tube to get some ideas 9n scarves, mine are just plain scarves, there made from Jersey material, I found them on ebay, I fold lengthwise and pur first quarter on head then cross over at back of neck, long piece I twist to go over top of head, then I use elastic scrunchy to tie together, you may find how on you tube, I much prefer the scarves than wig to be honest, far more comfy. 

Yes I have put weight on, I think the steroids are to blame, I have such a big appetite, I can eat for England lol 

I finish my chemo in three weeks, its weired but I'm nervous, I think it's having more scans thats making me nervous, how silly

Linda I would do whatever makes you feel good, keep having cannula if you find later you need picc then it only takes, an hour to fit but you maybe OK, 

Keep well ladies xxx

Thats great you booked in for next month Linda. I really cant wait for mine.  I did a list of things for me to look forward to yesterday so I can keep positive.  of course no 1 is chemo finishing!

Yeah, i wouldn't worry about the nurse, at my clinic loads have cannulas.  they have those funny hair dryer things to warm your arm up and are always being used.  My veins didn't like chemo and had quite a bit of pain in my arm after 2 rounds.  I had already decided on the port so was just waiting on the procedure date which happened to be delayed.

Thanks Davia, makes sense I'll give it a go with one of my scarves.  Hubby will be impressed as he moans about my scarf collection lol!  Now for you to find your Lood good course.  Did you say you are in Kent too?

Ha ha, me too especially over Christmas.  Im trying to be good now and no snacking!

Ah i get that, every time you have a scan its the fear of what they might find. I think its natural with what we are going through.

I had better heard off I have to be up for my assessment and weigh in which is booked for 8am!

Night ladies

xx

Hi Mich / Davia

Im going to continue with my cannula for the time being, i've worked in Palliative care for 15 years and I know many patients who never opt for a picc, tbh i think the nurse was busy sorting the chaps next to me blood tx and then my nurse wasn't confident in cannulating so i think she was stressed and thats how it came out lol

Talking about scarfs i really need to buy a couple more and learn to tie them, i've managed to get a leopard print looking good on me but it seems to have a long bit hanging if that makes sense. #

I also cant stop eating ladies, i did thinkk maybe this would be y time to shrink down to a size 14, who was i kidding haha my sweet tooth has changed to savoury, didnt realise crisps were so moreish!! 

Linda x

Hi Linda

Look on Muslim scarves on Instagram or you tube, I found loads on there, and they look stunning.I bought a few from an Asian site on ebay really cheap and loads of colours, can match to outfits I love them more than the wig, and I have a lovely crochet beanie hat I got from the hospital, ladies crochet them for us, it's my all time grab and go, so comfy, 

Yes I to have an appetite, I seem to have a savoury tooth to, sweets don't do it for me lol I must have put half a stone on if not more, but they keep saying, don't loose Wight, so I'm being good and doing as I'm told, keeping the weight on LOL  some perks need to be embraced while enduring this chemo

I don't blame you sticking yo the cannula, save you a trip each week getting picc flushed, you can always opt for port or picc later if need be, but I've seen people having cannula right through, my veins are to shy and I end up having veins nutted together, that's the only reason I opted for picc, but I can't wait to get it out  

Hi Mich 

Yes I'm in Kent, just outside Sittingbourne, village called Borden. I do envy you your sea air walks, must feel so good, really bracing. We go to Whitstable now and again, but the walk along the coast path in Broadstairs is great. 

I'm going to find and book on my look good feel good course tomorrow, something to look forward to, great idea to list good stuff to look forward to Mich, you've inspired me

Off to sleep now as had my pax today, night ladies, keep well xxx

Hi Davia,hope you're feeling ok.

Thanks I'll take a look at them Instagram as i am finding I prefer to wear a scarf or cap instead of my wig, I went to the mall earlier with my daughter with my wig on, I thought i'll take a hat just in case and by the time i got there the wig was off lol just didnt feel like me,

As for an appetite i;ve been good all day am now sat with my hand dipping into the heroes tub!

Hope you're well Mich :)

Linda 

Hi Linda, 

I'm not feeling to bad at all thanks, the weekly Taxol isn't so bad, it's the combo that hits me at about day 3, I get very emotional on it for some reason, oh and yesterday my eyebrows decided to shed a load of hair, how strange, my hair on body and head is growing back slowly but now my eyebrows decide to do one, joy, just when I thought I'd hung on to a few strand, hahaha good old wonder brow does the trick though oh I booked on the feel good look good course today, February 17 is the only one I can get on as there monthly and on Mondays, my chemo is Monday, but something to look forward to unless I'm having surgery by then

Yes I get that with the wig, I feel more self conscious with a wig on than my scarves or hat, funny that but I'm always worried the wig had moved or become lop sided lol 

How are you feeling, good to get out shopping or just out isn't it? Hope your feeling as well as can be, keep well xxxx