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Triple negative secondaries/ recurrences

sarah68
Member

Re: Triple negative secondaries/ recurrences

Hi all!

I know what you mean, Sadie, about the hand holding and 12 year old boys! Mine does it very occasionally now, but mostly pushes me away! He did give me a lovely hug in M&S yesterday, though. It really wasn't grand being a student in Paris! I was staying at a Uni. just outside the city which charged rent of only £50 a month and had 1 set of electric rings,of which often only 1 worked, for 25 people! I sound like the 4 Yorkshiremen from Monty Python, now! Glad you had a lovely time with your son. You are a real tonic on this site.

Pleased for you, Tina, with your payout! Good wishes for scan results. Love to everyone else - sorry about your liver pain, Jo. The electrochemo. you mentioned sounds very promising - thanks for mentioning that. So sorry about your chemo. probs - Lulu and Sandra.

Thanks for asking after me, Tina. My arm/chest are finally better.

Sarah x

hope15
Member

Re: Triple negative secondaries/ recurrences

Hi all
Thanks to you all for support. Climbing out of down week or two slowly but having MRI of back tomorrow as in pain. Only had CT 2 weeks ago but don't go down as low. I pray is nothing as meant to be in centre parks mon. Today not got liver pain again so assume another bleed which I get from time to time and v
Sinful so back on high dose painkillers. Not ideal prep for holiday but hoping calmed down by mon.

Sounds as if you are on same regime sookie to me as I had first one today. Gemcarb was 30 mins and carboplatin an hour. Had trouble cannulating for an hour but got there. Actual treatment easier than taxol as I used to react badly to piriton but will see how I feel in next few days. I am having 21 day cycle too but missing 2 one as Onc wants me to go away.

I am fortunate at our hospital when. Read about Worcester and the time you both have to wait.

Chemo nurse told me carbon/gem 21 day cycle easier than taxol so hope so !

Have you read of electrochemotherapy ESP good for local recurrent disease Tina and any others who have. I get in a muddle who has. I do and a dr told me an article in mail on Tuesday that royal free doing where under GA they insert electrodes then chemo and is very effective.

Thought I'd mention.

Love and prayers to all
Jo x

Lulu34
Member

Re: Triple negative secondaries/ recurrences

Only 2 hours sleep last night but was fine. Plenty time to catch up on sleep the next few weeks. Chemo we well was in unit for over 7 hours. Had bit of a debate about my rubbish veins and they said the would try but to get the specialist nurse to come and review me and thinks veins look too crap for picc but should be ok with a Hickman and being referred to discuss this soon.

I took a reaction to tax and had to be stopped when. Was having hallucinations about falling glitter and got very hot and dizzy and very sleepy with beetroot face almost matched my chemoshoes lol. Had to have infusions of piriton and corticosteroids and then tax was restarted slowly and was fine although cheeks still pretty red. Carbo didn't seem to cause any problems though just very tired now so vegging out in my jimjams and my minging DG on the sofa.

Love to all xxx x x

Sunnyty
Member

Re: Triple negative secondaries/ recurrences

Hi All
Just a short note, for a update.
Went to see onc on weds, she thinks I will prob have 6 nails falling off, no ABs this week
Seeing as I only finished last course last Friday, been soaking fingers in warm salted water, advised to try tea tree oil too.
Didn't want me to continue with taxol, but I said I would like to try maybe reduced amount for maybe 2/3 more sessions. Although if my nails are worse by next tues, I've got to let them know, and canc taxol.
I have been back to hospital today for avastin only. So may have avastin only every 2 wks.
Another lady from my chemo unit,has been having the same as me and she too has been suffering from hand and foot nail infections too. And she's just on avastin now too.
Luv n hugs to you all
Sandra xx

SadieL
Member

Re: Triple negative secondaries/ recurrences

Hi - A quick shout out for Tina - hope the scan was OK and your arm does not get infected. Hope they do not keep you waiting too long and the results are GOOD!! You deserve this!!

Lulu - hope chemo today was OK nd you got some sleeeeeeeeep last night! Hugs.

Oh Sookie - SPLAT!! What a shame. Glad chemo was quick - sounds like they need to teach Worcester a thing or two - I just have Carbo and ZA nd took 6 hrs last time!!

Sandra - Did you get the chemo or are nails still bad? How do you feel about stopping the paxi? Hugs

Sarah - Paris as a student - sounds very grand!!

Ive just had a lovely day out at the Safari Park with my son - laughs and giggles and lots of holding hands - he is 12 and so this is really not cool!! But when you are very scared (him , not me!!!)with bats flying round you it is OK to hold your Mummys hand still! Loved it!! It is what life is all about!

Hi to everyone else and esp hugs to all those with scanxiety!!

Sadie Xx Xx

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Thanks for the good luck wishes- I'm wheezing away as I type so my nerves are shot 😞
good luck rhian for tday with the ct x
lulu hope u got some sleep + ur chemo goes well tday x
I had a bit of a trauma yesterday- took mums cat to the vets with her + he scratched my hand on my 'bad' side. Called my gp + he's put me on anti b's just in case. On a positive note, our private health insurance have offered me a £3k payout for the carboplatin I had on the nhs earlier this year. Were pushing for further payouts on the fec-tax and rads course too. I've no critical illness/ life insurance so this is cash is very welcomeThanks to linda again for makingme aware these claims were possible. Hope u are ok linda- haven't seen u post for a little while... X
love to everyone on here xx

Lulu34
Member

Re: Triple negative secondaries/ recurrences

Sadie im really pleased your getting to go to paris i hope you all have a wonderful time.

Sookie hope your bum is better after your fall and that the SEs arent too awful for you.... i have my first chemo at 9am in the morning.... started the St-Eroids today and along with my insomnia and overthinking everything i think i prob wont get much sleep tominght but off to bed now to see if i can get a wee snoozette.

Sandra how did you get on with your onc today? did you get more ABs? and is she stopping your taxol?

Tina hope your scan goes well tomorrow you much love and that your not kept waiting toooooo long for your results.... it must be such a worrying time when you can feel lumps popping up right in front of you.... but your in the best hands hunny... sending you much love xxx

Rhian what else are they planning for you hunny? let me know how your doing... dont like to post too much on FB.

Love and hugs to all Lulu xxx

Sookie
Member

Re: Triple negative secondaries/ recurrences

Hi all

Thanks again for your welcome.

Have had first Gem/Carb today, managed to arrive at the hospital literally all shook up as managed to fall flat on my backside on wet leaves on the way -should be a good bruise there tomorrow.
Jo - my Chemo over in a relatively short time today - about half hour for each infusion - chemo nurse warned that gemcitabine can really make your arm ache when it is being given - but luckily I was ok. I didn't realise that the regime means that next week I will only get the gemcitabane part of the regime.

Gingerbud - thanks for the welcome - I see my surgeon on Friday 4th Nov. so hope results from scans are available then.
I certainly can't believe that this is all happening - but feel I am just on automatic going from one hospital dept/appt to another at the moment.

Well probably a late night ahead because of the steroids buzzing, but wish all of you a good night.

xx

Sunnyty
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies
Hope your all doing ok today
Rhian and Sookie. Welcome to our page, sorry you have to join us, good luck with your scans, results and treatment.
Tina. Belated happy birthday, hope you had a great weekend. Good luck on thurs with scan.
Sadie. Enjoy Paris, have a Fab time with your family, pace yourself on the Disneyland rides!!
Jo hope. Chemo is so tough, n you've had so much ova the months, hope you can have some help with your 4 children over half term. Xx
Hi to Sarah, Laura,Joey,Wendy,Lulu,Rachel hope your all doing 'ok',
Hi to everyone else I've forgotten to
I've got app tomorrow with onc, she's checking my fingers/nails - think may need another week of antibiotics, before I can have chemo on Thursday. She did say 2weeks ago, that she may stop paxitaxol, and just have avastin! So will let you know , have had 12/18 of paxi.
Hugs to you all
Sandra xx

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hey ladies 🙂
Hope things are well as can be with you all? Been trying to catch up with everyones news there are so many of us now!!
Sookie- a very belated but warm welcome to you. Sorry you have had to join us but we will support you through your treatments and offer a listening ear whenever you need one. Best of luck with the chemo and the scans. When do you get results? x
Sadie- so glad you are feeling a bit better after chemo #2 and a big YIPPEE that you can go to france. Have a fantastic time you really deserve it x
Rachel- thinking of you and hoping the christie suggest an effective treatment regime for you. Lots of love x
Sarah- hows your arm? The pain any easier? Hope so. Thanks for your continued support you really are lovely 🙂 x
Rhian hope you are coping ok with the shock of your new dx and best of luck with the ct scan on thursday. Hope they dont make you wait too long for results x
Jo (Hope)- things are tough Im not surprised you are low and shatered. 4 kids are hard work at the best of times I really dont know how you do it. Got everything crossed for the gem-carbo. Im sure you will find it easier than the last weekly regime. I hope so anyway. Big (((hugs))) x
Lulu- so pleased you had a great trip. Sounds brilliant! Good luck for your 1st chemo this week hun x
Joey- hope you are bearing up ok and the se's arent too bad on the weekly chemo x
Wendy hope the effects of the chemo are still bearable and its having maximum results! Have you got a progress scan coming up? x
Sandra- how are things with you? Hope you are ok x
Hello to everyone else too- Laura, Jo (Tara- how are you doing btw?), and anyone Ive missed xx

Cant believe Im back to scan stress on thursday. As Ive changed oncs and hospitals, I wont be able to chase results in the usual way because all my bcn 'allies' work in another hospital! But my new onc said results should be back next week. This wheeze on my chest is my biggest concern, not to mention the numerous nodes that seem to appear from nowhere! This is such a ightmare that sometimes, I can hardly believe its actually happening to me. Im sure you ladies feel the same. Its just so unfair isn't it...

Love to you all, stay strong ladies xxx

sarah68
Member

Re: Triple negative secondaries/ recurrences

Hi all!

Hi to Sookie! Sorry you are so down, Jo. I would feel the same way. Hope your SEs on the new chemo. are few and you start to feel brighter soon. Really pleased you've got the OK for Paris, Sadie. I was there for a year as a student - good memories! Haven't been to Disney there, though. May make it sometime, money allowing! Good luck to Tina and Rhian for your scans on Thursday.

Love, Sarah x

Sookie
Member

Re: Triple negative secondaries/ recurrences

Hi Sadie - good to hear you are off to Paris - I hope you have a fantastic time - will certainly follow your advice regarding planning good things every day (big or small) - today was a big fat cream cake!

Jo - hope you are feeling a little better - I have nothing but admiration for all you girls with young families (hope that doesn't sound patronising) but I only have to sort myself, OH and cat out as kids are all grown up and away from home, all the very best for Thursday - I will let you know how tomorrow goes for me.

Seem to have taken temporary residence at hospital this week - bone scan yesterday and bloods, chemo tomorrow and CAT scan Saturday - not the best of weeks.

Am off for my second treat of the day for an evening meal out before chemo tomorrow robs me of sense of taste, appetite or who knows what!

Thanks to all for the big welcome xx

SadieL
Member

Re: Triple negative secondaries/ recurrences

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

hope15
Member

Re: Triple negative secondaries/ recurrences

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

Rhian
Member

Re: Triple negative secondaries/ recurrences

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

SadieL
Member

Re: Triple negative secondaries/ recurrences

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

Lulu34
Member

Re: Triple negative secondaries/ recurrences

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.

Sookie
Member

Re: Triple negative secondaries/ recurrences

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

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

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

Rhian
Member

Re: Triple negative secondaries/ recurrences

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

hope15
Member

Re: Triple negative secondaries/ recurrences

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

sarah68
Member

Re: Triple negative secondaries/ recurrences

Pleased for you, Wendy!

Sarah x

fairyqueen
Member

Re: Triple negative secondaries/ recurrences

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

wubbly
Member

Re: Triple negative secondaries/ recurrences

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

sarah68
Member

Re: Triple negative secondaries/ recurrences

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

Rhian
Member

Re: Triple negative secondaries/ recurrences

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

Sandytoes
Member

Re: Triple negative secondaries/ recurrences

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

Joey144
Member

Re: Triple negative secondaries/ recurrences

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

Sookie
Member

Re: Triple negative secondaries/ recurrences

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.

Joey144
Member

Re: Triple negative secondaries/ recurrences

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!

sarah68
Member

Re: Triple negative secondaries/ recurrences

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

hope15
Member

Re: Triple negative secondaries/ recurrences

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

bestfriend
Member

Re: Triple negative secondaries/ recurrences

Jo, yes Heather has been tired, and some loss of feeling in her fingers, and has a 'down' day a couple of days after chemo, but is working 3 days a week, and has kept her hair with use of cold cap, no nose bleeds with the avastin and amazingly generally very well. she came back to work against docs orders as we work in a special ed school, a lot of opportunities for infection!! She started with a couple of mornings and built it up. So yes she has had side effects but mercifully few. again wishing everyone well, Kim

fairyqueen
Member

Re: Triple negative secondaries/ recurrences

hi bestfriend ...thats fantastic am so pleased for heather hugs xxx

Sunnyty
Member

Re: Triple negative secondaries/ recurrences

Hi best friend,
That's brilliant news, for Heather, thanks for sharing it with us, hope your going to have a big celebration nite out.

Hi to all ladies
Hope your all feeling "ok" today
Sandra xx

hope15
Member

Re: Triple negative secondaries/ recurrences

Hi
Thank Rachel and Tina and thank you to Belinda for the encouraging post. HAving got my head around more chemo as in tablets capecitabine all changed as on scan liver lesion near a vein so I am to go on carboplatin and gemcitabine and maybe avastin if funded too. I start next week 2 of 3 weeks. Is this the same as you sadie two weeks in row with week off ?
Im told se minimal and same as weekly taxol so will see.

AM glad Tina your aoot went well and hope rachel your results are not as bad as you fear.
love jo

sarah68
Member

Re: Triple negative secondaries/ recurrences

Brilliant news, Best friend! Hi to all on here!

Sarah xxx

Joey144
Member

Re: Triple negative secondaries/ recurrences

Hi best friend
Thanks for posting that good news re Heather - they have put me back to the beginning of the first cycle of avastin tax ZA ie 2 months written off so fingers crossed it works for me too, ineresting to hear she had min ses I'm constantly v v tired
Jo x

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hi Bestfriend 🙂
Thanks for coming on and sharing Heathers FANTASTIC news!! I remember she was having a terrible time and you were really worried about her- its great to hear the chemo has had such an amazing effect. Long may it continue to work for her. What a lovely friend you are 🙂
Tina x

bestfriend
Member

Re: Triple negative secondaries/ recurrences

Hello everyone, i post sometimes for advice for and about my friend Heather, who has had ist cancer and mx 3yrs ago, a year clear, then skin reccurence that spread to ibs in other breast, nodes in lung, chest, back and a mass on her ovary. all tnbc, she has had all nodes removed from under arms. She was in lots of pain, morphine based painkillers, and given a very poor prognosis, maybe only months. She started Taxol/avastin a little later than Sadie but is still able to take it having had minimum side effects AND her scan results on tues NO EVIDENCE OF DISEASE!! Onc says, yes it prob will come back , but then said who knows... Just wanted to share a good news story with everyone, and wish you all the very best in everything xxxxxxx

fairyqueen
Member

Re: Triple negative secondaries/ recurrences

hey tina,your onc seems not too worried so thats good but think you will feel better when youve had a scan so am hoping for you it will be good results take care love rachel xxx

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hey ladies 🙂
saw my onc yesterday she didn't seem concerned about new nodes in neck. She said they're tiny + we know there is a high possibility there is lots of small deposits of diease knocking round. She still suggested holding off chemo for now but we agreed on a compromise, which was to rescan in a few weeks. We decided against the petscan for now but I'll ne having a ct of neck down the 1st week of nov. I'm going to go with more chemo- will have another go at the carbo. She also offered me a trial of piclitaxol with avastin + a new agent but will save that option for later. Felt really emotional after my appt- but thankfully had a meet up planned so we ended up going 4tea + polishing off several bottles of vino!! Gona try + stop panicking now until my scan...

Jo I'm sorry to read ur scan results showed progression 😞 I understand u are anxious about ur babies I feel the same. I pray for his sake he has lots of quality time with his mummy. Best of luck with capecitabine- you have had a tough time + I hope the se's are mild but the results are brilliant for u! Sounds like ur veins need a break + ur hair will start to regrow on cap. Don't give up hope you have LOTS of options left xx
sadie- thanks for the pm 🙂 hope the se's this time are easier 4u + ur bloods get back to normal in time for your Paris trip xx
rachel- thinking of you+ keeping everything crossed for your scan results 🙂 xx
love to everyone, battery goin on phone so better submit post b4 I lose it!!
Tina xx

belinda
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies please excuse my gatecrashing..I'm stage 4 and I'm chemo only from now on but I'm not trip neg. I just wanted to let Jo know there are many stage 4 women who have been on Capecitabine for years..I've been on continuous cycles since April 2008 and a fellow forum user, stage 4, has had 8 + years with Cap. While we are not trip negs I thought, I hope, this post may be helpful in some small way.
I hope Capecitabine works really well for you..xx

fairyqueen
Member

Re: Triple negative secondaries/ recurrences

oh jo ,am so sorry you didnt get good results but good that your lungs and bones are clear, this disease is such a sneaky one tnbc certainly is a nasty buggar,heres hoping the cape works wonders for you ,i am dreading my results am sure its progressing but will keep you posted sending you massive hugs rachel xxxx

hope15
Member

Re: Triple negative secondaries/ recurrences

Hi All
I am so sorry sandra re nails - sounds horrid. I had 18 taxol but never lost nails. I have split fingers at ends on a few which are hard to unite again !!
Hope results Tina are not as you fear
Glad to hear laura off on holiday
I hope sadie ses this cycle much less and bloods pick up. I juice 2-3 x day and think helps on chemo but no evidence just works for me in past.
I hope rachel your scan results okay and if you need funding for more treatment you get it.
d
Sorry to anyone I missed.

I had horrid week as got scan results yesterday which shocked me and Oncologist as think was fairly confidant were good as response to taxol after cycle 2 so good. Seems not and is on the move again in liver but lungs and bones stable and nodes. Surprisingly new node on collarbone not on Ct but clearly visible. I kind of sensed taxol not working and had liver pain month ago so guess was starting up again.

Went to marsden today and they suggested same treatment so looks like capecitabine for me. Were discussing carboplatin but think tablet form as been on IV chemo for 12 of 16 months now. I am so dissappointed as think options after are carboplatin and eribulin and pray there are more but not sure want to know.

Am being tested for two trials one for androgen and one for some other factor and is 20-30 % chance TN disease has these but is not for now as think only phase 2 trial so capecitabine first. apparently some on for 1-2 years but I have not ever come across anyone on this long term.

Not sure if any of you have tumour markers but I dont and blood and liver function normal so scary that no way of telling except CTs.

Was desperate last night as so want to get boys to school but need 3.5 years for that. Praying for us all a new treatment comes out. He did say they are bringing new drugs out all the time so we have to all hope.
love jo ( hope 15 )

laura64
Member

Re: Triple negative secondaries/ recurrences

hi all hope your all ok sorry tina to hear your news ie lumps hope the scan goes ok and its not as bad as u exspect sadie i was always ok on carb never had any probs we are all of to paris tomorrow for the day be great we got to up at 3 ugh train goes 525 but it will be fun gd luck to all will await your results tc laura xx

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies
Rachel- thinking of you hun. Hope todays scan went ok and your results are ready soon. Hope your lovely grand daughter is distracting you as much as poss xx
Sandra- good to hear from you 🙂 The nail problem sounds nasty I hope it improves soon. I Had probs with my nails on taxotere but only had 3 cycles so it didnt have chance to get too bad. Lost a few toenails and finger nails were awful. Hopefully the chemo is being just as destructive with your mets!! Fingers crossed for you xx
Sadie- sorry to hear your bloods are low 😞 I had low platelets twice but felt ok. Was it your platelets that were low? Apparently carbo is renowned for it. I had lots of unexplained bruises lol! I sure you will be fine for your france trip. Sounds fab! I always felt ok and pretty much back to normal by day 10-12. I wouldnt worry too much about infection as apparently its less common with carbo than some other chemos (my onc said thats why they dont give out the neulasta jabs whilst on carbo coz its kinder on the blood counts). WE literally went to eurodisney so cant really advise you on places to go but Im sure you will have a great adventure 🙂 Fingers crossed the se's are kinder to you this cycle xx
Hello to all the other ladies reading too- please update us xx

Well its d-day tomorrow. Feeling really nervous about the new progression. Very nervous about the prospect of a pet scan too but it is what I want. Just terrified it'll show allsorts we didnt know about. Not sure if me or my family could take that sort of news to be honest. Its my birthday this weekend and a gang of us are going to the races so I will try to put this nightmare out of my mind as much as possible and enjoy myself. Ive decided to drink nothing but champagne on the day lol- since I really didnt expect to be here for this birthday! We were hoping to get away in early nov to tenerife but realistically I dont think that'll happen as Im bound to back on the chemo wagon once progression is confirmed. So glad I never booked it last week when I found a good deal! On a more positive note, got over £500 today off our simply health policy, thanks to Linda off our thread. I was unaware I could claim for day patient treatments (like chemo and rads) but she made me aware of this aspect of the policy. So Thanks Linda if you are reading this 🙂 !! Im awaiting a response off our private healthcare who are trying to get out of forking out. Funny how they never mentioned the fact I could claim for staying with the NHS isnt it?!?
Right better get my little man to bed. His dad is away on business this week in London so its just us two for a few days...
Love to everyone
Tina xxx

SadieL
Member

Re: Triple negative secondaries/ recurrences

Hi All -

Thought I would post before I start loosing the plot with chemo brain and hjiopjen ndkhiswo wjkcnhjkld nmks!!! (I think it may be toooo late!!)

Sandra - OH OOOW!!!! Sounds horrid! My nails lifted from the top down, but they are still attached! I do hope the antibiotics work soon! Sore hands really interfere with life! I am sorry you are suffering! Glad the nose bleeds are better though!

FQueen / Rachel - So much thinking of you and your results! Hugs (Xx Xx Xx)

LLassie - Glad you have some energy and a good holiday! Any Guiness drunk?? The suprise party was fab - she had no idea!! Her face was a picture - A wonderful memory to have.

Tina - OH PANTS!!! What a horrid situation - I dont need to tell you that though!! So, what can I say to help?? Feel a bit useless - but I hope hugs and smiles help a little bit. (Xx Xx Xx) 🙂 Keep us up to date!

A BIG hello to everyone else!

I feel good and was really shocked today when my bloods (neutrophils and platlets) were too low for Carboplatin number 2. They re did them and neutrophils went up to 1.1!! My registrar said she still would not treat me but my Onc said she would (all via nurses - did not actually SEE a Dr!!). So, if you dont like the answer - ask someone else!!! They have reduced chemo by 20% and given it to me today. I hope to go to France for 4 days in 13 days time (Any tips where to go Tina?) so i really really need bloods to be OK by then. Any tips??? My son suggested I eat healthy food and rest lots - bless him!! I think I will follow his advice though! I am worried about a 20% drop but understand this is better than delays in treatment.

Hugs to all you wonderful ladies! Thank you for being there!

Sadie Xx Xx

Sunnyty
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies
Hope your all doing ok today
I had 12th chemo on thurs avastin/taxol, but cos of infection under nails of few fingers I'm back on antibiotics this week again, so chemo has been canc for thurs. Got appt to see onc next week to see how they are before any more chemo. Looks like I may lose about 6 nails. Tips of fingers v sore n tender too.
On the plus side, my nose bleeds are easing.
Tina and Rachel been thinking of you both over the weekend, fingers crossed n sending you good wishes n hugs too.
Sadie hope chemo goes well today
Hi to both Jo's hope all ok

Big hello to all other ladies , hope your doing ok
Hugs
Sandra xx

fairyqueen
Member

Re: Triple negative secondaries/ recurrences

hi tina, dont know when i will get results so will just wait, am so sorry you are freaked out but maybe they are not sinister with being on good side but i know how you feel they just pop up from nowhere the little s**** am thinking of you loads and really pray you will have good results when you get scan hugs to you and everyone xxxxwill keep you posted x