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 ladies. I didn't realise Paxil contained alcohol either :)

I never read up on side effects as I'm too suggestible but have now read the leaflet in the box. Blimey! 
 

Davia I'm so sorry your date keeps being pushed back. I would cry if I went in and they told me that. So close to the end too! Got everything crossed for your next set of bloods.

xx

Hi Davia,

My chemo is fortnightly so I'm hoping my last one is on 27th if it doesn't get put back due to my liver function. My hair is growing back very slowly, it looks terrible but that really is the least of my worries!!! Good luck with your bloods, fingers crossed all goes to plan.

I look forward to us all starting a new thread, it will be the triple negative survivors club and we will get loads of new members I'm sure.

love Sue xxx

Thank you Claire, xx

Really hope your well enough for your last chemo Sue. 

Thanks 

Xxx

Sue I like the sound of the new thread :)

I met a lady today who is about a year clear from tnbc and another lady I'm in touch wihh thy is now 5 years clear. All positive stuff.

x

Claire, that's what I'm holding on to. The survivors stories. There are plenty out there xxx

Hi Ladies.

I hope this finds you all well and nearly ready for crimbo.

I'm glad to say I have survived 5 days since having my 1st Fec. I had 1 wave of nausea come over me 11 hours after I had it and i thought oh here we go then but it came to nothing, I took myself off to bed with an Ondansetron and slept well.

I had a horrid muzzy headache for 3 days but I stopped taking the Cyclizine and that seems to have cleared my head, the only side effect I seem to have is fatigue and aching bones but i figure thats from my lovely daily jabs that I am having. I am managing to eat and drink well, its like I am waiting for side effects to hit me out of the blue.

Are all Fec the same or could I have them worse next time? Sorry for all the Q's.

Linda x

Hey ladies, 

Deffo set up a Warriors group when we all out the other side

I met a lady at a local group that had TN 15 years ago when she was 34. She had a few issues since then with calcification (which I'm not 100‰ sure is) but had double mastectomy few years ago and is doing well!

Welcome out or zombie land Linda! Glad to hear you are managing OK yeah I had the achey body heavy head and fatigue. I noticed the side affects of anti sickness is also fatigue and headaches lol!

I'm not sure about other side effects of Fec as I was on EC. But saying that they do sound familiar and as you've prob read you can have a different effect the next time. A whole muced bag eh. 

I was wide awake again the morning! Grr thought the steroids would ware off maybe tomorrow. I did go to a sound meditation class last night with a friend which was good. First time and all you had to do was lie and relax and listen to the sounds and rest. Apparently sounds waves pass through our body easily as we have full of fluid! Didn't fall asleep and not zonked out yet so will probably hit me later! 

Has anyone else tried anything different? Always fancied yoga. 

Happy Friday ladies! Off to get another hour sleep, hopefully the zoladex injection this morning! 

Xx

Hi ladies,

Linda, the effects of chemo is cumulatve, but not everyone gets side effects so you might be one of the lucky ones. The aching bones and dizzyness are pretty standard but unpleasant. I'm the same as Mich, we were both on EC which is the same as FEC but without the F. 

Mich, I haven't slept since starting chemo unless I take a knock out pill.

I am serious about starting a TN survivors thread. People mainly post when they are going through treatment and forget to post once they get the all clear. I think we will all stay in touch for many years with positive, upbeat stories. 

I have my last chemo on 27th and am actually looking forward to it for once!! 

Have a wonderful weekend Ladies, stay dry!!!

Love all round,

Sue xxx

Sue it's a great idea. I know it's not the same thing but I was on a lot of infertility groups particularly for my ivf clinic and now there are groups for those women who have been successful and everyone is so supportive of one bother. There is something special about people that have been through the same thing you have even if you haven't met them.

Less than a week til your last chemo, that is fantastic!

Mich I'm having trouble with sleeping too despite being exhausted :( I have been given some mild sleeping pills but I'm reluctant to take them as I want to hear my son when he wakes.

Lindy, really glad you're not feeling too bad.

x

Sue it's a great idea. I know it's not the same thing but I was on a lot of infertility groups particularly for my ivf clinic and now there are groups for those women who have been successful and everyone is so supportive of one bother. There is something special about people that have been through the same thing you have even if you haven't met them.

Less than a week til your last chemo, that is fantastic!

Mich I'm having trouble with sleeping too despite being exhausted :( I have been given some mild sleeping pills but I'm reluctant to take them as I want to hear my son when he wakes.

Lindy, really glad you're not feeling too bad.

x

Merry Christmas my fellow Warriors! hope you are all well and enjoying the festivities!  

I'm not too bad after taxol yesterday. Woke up with a nose bleed and a bit tired but otherwise all ok. Even went for a nice long walk in the afternoon sun. 

Big festive hugs

Xx

Happy Christmas, I had my Taxol and Carbo on Monday so only just managed today, lots of visitors that was lovely but I'm so tired and no energy, glad you managed a nice walk, it was lovely to see the sun again after all that rain, 

Hope santa bought you lots of nice things, take it easy,  BIG festive hugs back

Merry Christmas Ladies, I hope you all had a fab day. 

Im having my last Taxol tomorrow if all goes to plan whoo hoo. I saw the oncologist on 24th and he said he wouldn't know if the cancer had responded to the chemo until after the op so I left feeling really deflated. He said he can still feel the lump as I can. Now I'm more worried than ever. 

I put on a good act yesterday though, I deserve an Oscar. No one would have guessed how worried I am.

Oh well, onwards and upwards. Positive thinking from now on. Next year we will all be out the other end, finished treatment and enjoying life.

️ ️ ️

Happy Christmas all!

Sue that's a real pain, why can't they just scan you to check the size of the tumour? I wouldn't worry too much about still being able to feel it, the chemo doesn't always get rid of it completely, mine is still there but smaller. I guess that's why we have surgery, to remove what's left. Remind me when your op is?

Davia, glad they managed to go ahead on Monday.

Mich, great that you were feeling ok after your taxol. Hope that has continued.

ik on my way for my penultimate ec now. It would have been due Christmas Day so a couple of days late, I felt almost completely normal yesterday which was nice! I'm so done with the chemo now...

Love to you all.

x

Hi Claire, I've no Idea why they don't just scan me. No date for my op yet, I'm waiting for a date to see the surgeon.

Not long till you finish your chemo now.

Stay well

Sue XXX

Hey ladies, 

Good luck Claire and Sue for chemo today strange to think my next one is only on the 08th Jan, feels far away!

Ah that is annoying about the scan but as Claire said the opp is the final way to get rid of all the cells. I've got 5 so doubt they would all disappear either. I've got a scan on the 3 Jan, so will see what they say. Last time they just said yeah they shrinking but not much else. 

How you doing today Davia? I'm OK still buzzing like the duracell bunny ha ha! I'll prob crash and burn this weekend. Still have the constipation grr so smoothie and laxido for breakfast foe me. 

What else are you ladies up to, hopefully some nice chilling. 

Hugs xx

Hi Ladies, 

Good luck to Claire and Sue for chemo today, hope it all goes well, I'm just back from having bloods and picc flushed fingers crossed those pesky white cells are behaving. 

Clair hope you get a date for opp, it's scary when they talk so genrally, but as the others have said, the opp will clear it all out then radio will make sure. 

I don't have a lump! Wierd but I have three lymphs and two very small lymphy that are non detectable on CT, apparently this can happen, your body clears the lump, it's a bit wierd for me though and I do worry, I have a PET scan after my chemo, they say that shows activity then I'm having all lymphs out under arm, I think the worst thing in all of this journey is the unknown, but we are all getting there, my last chemo is on the 27th Jan, would have been today but I had to have it postponed a few times.

Clair only one more to go, I get where your coming from on this chemo journey, I can't wait to be finished with it. 

Mich I'm feeling OK today, I over did it on Christmas day so yesterday was a bad day, down, low, tired, so I must remember to take it easy, the steroids don't help, they make me buzz. Have you got your bracca results back yet from guy yet? And when is your last chemo Mich?

Keep well all, hugs all round xxxx

Hey ladies, 

How u feeling Claire & Sue, hopefully not too groggy! Final one done Sue  

My last one should be the 20th Feb, fingers crossed. My steroids have now worn off and I feel like an old woman! I did manage a spot of shopping yesterday with some wee breaks. Today my body is so tired and shoulders so stiff prob from carrying bags, oops. 

Davia glad to hear all is on track, less than a month now for you. My BRCA hasn't come back yet as the didn't get my consent form for some reason. So have sent it off again, should get results in 5 weeks. I'm glad I chased it now with oncologist. 

Hugs xx

Hi Mich

Hopefully they will speed the result through once they have the concent.

I have my paxol tomorrow, do you find your still under the effects of the carbo paxol when you have your weekly one? I still feel run down from the combo,

I did my walk today, weather was nice, quite warm for season, I bet seaside is lovely and refreshing when you do your walks. 

Clair and Sue, hope your both feeling OK after chemo, how's the hair? Is it still growing back slowly?

Take care ladies, hugs to you all xxxx

Hey Davia

Thanks hope so too. I've been told ill have the results before my opp is due. 

Good luck for tomorrow. I seem to be ok on the taxol, no furniture walking. Just really tired when the steroids wear off. I didnt do much today, mostly chillin. Hope to get out tomorrow for me walk, better not be raining lol!

I've given up on the cold cap, hopefully carbo /taxol won't be as bad as ec. I haven't had a massive shed again, err yet. Wig is awaiting if it does happen. 

My taste buds still seem OK, although did notice the gammon it extremely salty err and celery. But sweet tooth is still there and I still have mince pies left oops! 

How your taste buds doing ladies? 

Xx