Hello to all
Glad your friend is doing so well Kim on taxol. Is so variable.
I hope sadie your bloods up. Am worried as going straight to carboplatin and gemcitabine next week if insurance approval comes with no break since taxol ! I’m told well tolerated and we r off on hol next sun and will have first tment next week? I’m having 2 of 3 weeks. Is it same as u sadie ?
Hope rachel results ok. Love to Sandra, Jo. Sarah and Tina
Jo x
Hi Jo and all!
Hope you enjoy your hols, Jo! Where are you off to? What a pain starting chemo. with no break. I really hope it works for you. Sadie - hope your bloods recover for next chemo and you can go to Paris - can I come too?!!! Love Paris!
Tina - I’m sure you are worried about your neck nodes. Hugs to you and hope you can find plenty of things to take your mind of it all. Difficult, I know! Rachel - good luck for scan results. Hope everyone who has kids enjoys their half-term.
Love to everyone else on here,
Sarah xxxx
Hi Laura, Jo Jo Sadie Tina etc
Just got back after 8 hours again of chemo so last friday just 5 hours and the Friday before that over 8 hours average of 7 hour every Friday thank goodness I have Friday off next week.
I found out today that I’m not on avastin, ZA, Docetaxel I am on avastin, ZA & Paclitaxel (taxol). Feel really stupid, they wrote down I was on the first three & gave me the leaflets for the first three, I have had 5 of the second lot not had Docetaxel and although had 5 are discounting the first two! Have asked for the chemo regime un writing from onc,.
Comments welcome!
Hello ladies
I hope you don’t mind me jumping on to your site - I have TNBC and had a mastectomy May 2011, followed by 3 FEC and 2 Docetaxel - unfortunately before my last chemo session was due last week a recurrence has appeared at the original site plus a mass on the chest wall - its a massive shock to me and I am finding it hard to get my head round it when I thought I was finishing chemo and moving on to rads. Instead today I have found out that I have to start Carboplatin and Gemcitabine - two weeks on and one week off, followed by surgery and then rads,I know side effects vary for us all - but would really value any information anyone could give me re. this chemo.
Also have bone scan Monday and CAT scan next Saturday. This recurrence has knocked me back more than when I was first diagnosed.
Thanks for listening girls.
Hi sookie
This is where you belong! I had massive shock to learn reoccurred after 7 years triple neg on chest wall too large to op so having weekly avastin, taxol and ZA. Had bone and ct scan luckily bone scan clear, look out for sadiel she I’m sure is having carbo and is a very positive lady with lots of good advise
Sort out your benefits immediately anything you need to know pm me
Where in the country do you live cos cif hospitals dif procedures etc
People will help you through it
Hugs jo
Hi Jane,
So sorry to hear of your recurrence. Our June thread went quiet and just hoped people were getting on with their lives and not needing the forum so much - so awful to hear you’ve obviously been having a terribly worrying time for the past few weeks.
I hope the new treatments work out for you.
X
hello
i am jumping on this after finding out last week i have a reoccurance in my shoulder, (myoriginal dx on my profile)i have started rads and have a ct scan next week to check for further spread. i am still a bit in ‘shock’ with it all,i have lost the use of my right arm and apparently won’t get it back! i was told about the reoccurance on the eve of my 3rd year anniversary of my first surgery.
sorry we have to be here, i hope to find my humour and ‘bring it on’ attitude over the weekend
love rhi x
Hi Rhian!
Welcome to the thread. So sorry about your recurrance and loss of use of your arm. It must be very hard to come to terms with it. I have limited movement in mine following lymphoedema and rads damage and I know what a pain even that can be. Hugs to you - the ladies on this thread are ace. We are all here for support and to moan to!
Love, Sarah x
Hello to everyone
Just thought I’d pop up to say something about gem carbo, for Sookie and those who are due to start, as I’ve had 3 treatments of this chemo now.
My regime seems to be slightly different in that I have one treatment every 2 weeks. My Onc seems to think a reduced dose more frequently can help reduce side effects.
My first treatment knocked me flat out and I slept solidly for 2 days, although I think that may be to do with my body not being used to the impact of chemo, having been off treatment for a little while. The next 2 have been much less dramatic, tiredness yes, but nothing too debilitating. A little bit of sickness, sorted out very quickly with the usual meds.
Other than that I can honestly say it has been fine. It’s been better than fine actually. Like Rhian I have a recurrance on my chest wall and armpit and lost the use of my arm. I’ve found that my movement has improved a lot since the chemo started. I even managed to take my bra off the proper way!
I was also having trouble breathing before chemo started and again there is a massive improvement. I can run up the stairs again without fighting for breath.
I don’t know if this helps anyone, but I’m happy to answer any other questions if I can.
Love to everyone. I’m afraid I’m still just learning everyone’s names and histories but I’m so grateful to have found this thread and you ladies.
Wendy
hi sookie i too recurred whilt on fec/d chemo its such a blow isnt it i hope your new treatment plan will do wonders take care hugs xxx
Pleased for you, Wendy!
Sarah x
Hi Sookie
It sounds as if we are on the same regime as I am to start 2 weeks on one week of carboplatin and gencitabine too I think next week but waiting for approval from insurance company. i know how you feel as have just finished 18 weekly paclitaxol and before that 6 x EC so not had a break really.
I am too looking for advice as told well tolerated and meant to be having next week and then going to centerparcs next monday so hope is going to be ok.
Is a thread saying adding inaparib more effective but think is a parp and was told that effective for BRCA pos ladies by my Onc
Does anyone know any different as keen to add if suitable.
Thanks wendy for your experience of carbo/gem. Hoping that not too wiped out by it all.
thanks
jo Hope 15
just jumping on to share my ‘bring it on’ i fell into a deep pit last week, the new diagnosis completeyly floored me, scared me, made me angry…luckily the weekend brought about a forced break and i have spent time with family and found the strength to face up to what is ahead. i spent the morning reading back through this thread, and girls!! you are amazing and i thank you. it will take me a little while i am sure to get accross everything but truly i feel i have found the fight to kick its arse, and it’s thanks to you too
love and hugs
rhi xxx
Hi ladies
just a quick post to check in + say hello. Couldn’t access the site on my phone 4a few days at the end of the week just kept getting an error page. Same on pc when tried to log in. Been ok last day or so but I’ve been hectic. It was my birthday yesterday so had friends round early doors then went the races. Lots of champers consumed so fuzzy heads all round today lol!
Got my scan appt through for this Thursday!! Earlier than expected but prob 4the best. Nerves will no doubt kick in once the booze wears off…
Welcome to rhian 
Glad uv joined us (iykwim!!) and good 2hear ur ready to kick ass!! X
Rachel any news on ur scans yet? X
jo I’m glad ur having carbo as opposed to capecitabine. Got everythin crossed 4u x
promise to catch up properly with everyone tomorrow- off out with my little man + hubby now.
Take care
tina xx
Hello girls
Thanks for all your replies.
Wendy: your advice is a great help - my ONC said the worst side effect was tiredness and it is so good to hear that you are feeling the benefit from the treatment.
Jo: I start this coming Wednesday so we should be able to hold each others hands virtually through our treatment - will you let me know when you have your start date.
Fairyqueen: you are right it is a real blow and thanks for your best wishes.
Rhian - I share your feelings re. new diagnosos but am glad to hear of your “bring it on attitude”,we have to throw all we can at these b*****s!!
xxx
Rhian Iv been away my holidays and only just back this is so shit I’m really sorry to hear your news. Cant believe so much has changed since tamworth. It was only 16months ago. Sending lots of love and hugs your way xxx
Sookie sorry to hear of your recurrence too xx
Tina good luck with your scan. Xx
Will catch up properly later. But had a fab time in holland and Germany we visited 14 different towns in 5 days and I’m knackered now but it was just great and lovely weather too.
Hi All - After 6 days couch bound - im back!! I thought 20% less chemo would be 20% easier - but it did not seem like that! 7 days couch bound last cycle - so one day better this cycle!!
Tina - A very very very Happy Birthday. So glad you had a good day nd sound like you are still having a ‘party’ weekend!! Leave scanxiety till next week if you can!! More champers may help!!
Hope15/Jo - Im on a three week cycle. I have chemo on week one and then three weeks till the next. So, a bit different to your plans, i think. Im just on Carbo as my Onc said i would struggle with Gem-Carb as just had 7 months of weekly Taxol/Avastin. She is right - just the Carbo is hard enough. I just hope it works as well! I do hope you get your break at Centre Parcs - you deserve a break and fab family time!! Are you still looking at trials at the Marsden? Keep us informed - it is really interesting to hear others options!
Hugs xx ps I dont have Tumour Markers done - Onc said they are too unreliable.
Kim / Bestfriend - WOW what fantastic news. I remember how very unwell your friend was and am delighted NED!! There is hope for us all.
Sandra - Hi! Hope you are as ‘OK’.
Joey144 - Hope you are coping ok! Worcester is so slllooooowwwww on treatment day! And telling you the wrong drug is stunning!! I did not even get to see a Dr at all last treatment. Ive emailed my Onc with some questions and no reply! She’s got till Tuesday…!! Hugs
Sarah68 - Sounds like youve been to Paris several times? It is our first time - so any tips? (if we get there!!!) Hope you are doing Ok!
FQ - Hope you are Ok. Im sorry, ive lost track with your scans / results. Whatever is happening, i hope the sun in shining on you.
Laura64 - Wow Paris aswell! Must have been a long day with your early start! I hope it was a good one.
Sookie - “Hello”, nice to meet you. You sound like you have a long road of treatment ahead. Im on chemo number 26 but did not know the road ahead when I started. I try to plan some good things every day / week to look forward to. At Primary diagnosis I remember looking forward to the end of treatment - but it is not possible now. So, need positive things every day / week! Sometimes they are big things (holidays!!) others are smaller (watching kids at a sports match), some days it is just - a nice cup of fresh juice! Hope you mamage to find your smile moments! Hugs and smiles Xx Xx
Rhi - “Hello”, nice to meet you too!! Oh it is PANTS when you find out it has come back. Im not sure you ever come to terms with that - but you find a way to live with it. I try and not let the P** that will happen spoil my today! Why should it rob me of TODAY when I know it is going to rob me of my old age. It is not always easy and please dont feel you have to put on a brave face when you post! We are here for each other through the ups and downs. Hugs and your profile picture is lovely!
Wendy - Im delighted the SE of Gem-Carbo are minimal for you. I hope mine will deminish over time! Fingers crossed!! Xx Xx
LuLu - So glad you had a fab holiday. Sounds wonderful! Xx Xx
Im just coming round after feeling rough after Carbo Number 2. My bloods were SOOOO low and I think they are now too!! So, Im not holding out much hope for Paris on Saturday - thank goodness for insurance. I am waiting to see if my Onc thinks I am ‘medically fit to travel’! So, hope she gets back to me soon as need to start planning what to do as i have not tempted fate and started reading travel guides yet!
Hugs and Smiles to all and a big welcome to newbies!!
Sadie Xx Xx
hi
me and you Tina scanning on thurs (mine full CT)
lulu, yes so much change, been seeing your news too, not sure where you get your energy you crazy woman. were you in your super woman costume knickers outside your tights ha ha x
yes sookie, we have too be ballsy, hard at times i know but i will not let this beat me.
rhixxx
Hi All
Welcome to Rhian and Sookie and sorry you have to join us at the same time. I was coping well I thought but this past week have seem to have just collapsed mentally. I think 4 kids at home half term and feeling lousy as have another tummy big doesn’t help. I am finding it really hard to accept straight onto another chemo cycle of 5 months when just finished a 7 month one with a 6 month one before that. I have to try to accept that there is no end of treatment and am likely to always be on chemo and if am guess a good thing!! Just doesnt feel like it right now. I have down days but havent felt this bad since diagnosis last June really.
I have first carboplatin and gemcitabine thursday so almost in line with you sookie. I am having same regime but they may add in avastin. I want inaparib added in but not sure if only a trial yet. I also still have the bone hardener xometa every 3 weeks too.
Hope everyone else if bearing up and sorry for being so down but in a bit of a hole at the moment.
Hope sadie last treatment was not so bad.
Hope scans are good for those this week.
Hope you are okay rachel as know expecting reasults too
love jo x
Hi -
Hope / Jo - I woke feeling very low too this morning. Chemo for ever is really really hard! Also, your kids are so young they much take a lot of physical looking after (as well as a lot of joy!!). But - we do it cos we want to see their smiles and have their cuddles! I hope the SE of gem carb are ok for you to LIVE as well as you can for as LONG as you can. Hugs and more hugs. Sadie Xx Xx
Ive just heard from my Onc that she is happy for me to go to Paris!!! She has kept me waiting for 8 days and so I feared the worst as boods were so low last week. I thought she would want me to have a blood test - but she just said ‘have a back up plan and enjoy your trip’!! So, Paris for 3 days and Disneyland (never get too old for this!!) for 2 days. Just told the kids and they are delighted. So - cheered me up no end after a rough start! I woke planning my funeral - a difficult start to the day, but these things just POP in my head sometimes! Anyway - better now!
Hugs and Smiles to all
Sadie Xx Xx