Triple negative secondaries/ recurrences

Living with secondary breast cancer Supporting each other and sharing experiences
981

Hi everyone

This is my first post in Triple negatives. Hoping somebody can help with this new worry I have - I had my first FEC last Friday (18 Nov) I had a mild steroid, I am diabetic and have psoriasis.

Problem is my breast has been very pink and feels full and swollen. I called in to see my Oncologist and he said it may be the sterioid reacting with my skin and diabetes, and the may have to change the dosage next time. He also said it may be that the FEC isn’t working, that scared the hell out of me because FEC-T is the only chemo I can have because I am Triple Negative. He said the cancer maybe more aggresive than they first thought, he told me to keep an eye on it and let him know how things progress this week because time is of the essence.

Very worried, can anybody advise on this please? I am so worried he is going to say that FEC-T was my only chemo option, which is what he implied when I got my treatment plan!

Also worried because it is aggresive they won’t treat it if FEC-T doesn’t work!

Stressed out to high heaven!!!

Any experiences shared would be soooo helpful.

Many thanks

Paula x

982

Hi all!

Really, really pleased for you, Wendy!

Hello to Daysie - so sorry you’re upset. I’m almost 100% sure that FEC - T- is that for taxotere?- isn’t your only chemo. option, but maybe someone on here will be able to give you some better answers.

Sarah x

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Wendy how fab! Hope the clot isn’t causing too many problems… Are they reinserting your line or you having a bit of time without it.

Sadie good luck with scan results

Sandra hope you have recovered from your infection now

Paula I replied to you post in nov Chemo thread… But there’s lots of chemos for TNBC… Think mayb you need o speak to your onc or Bcn though as that’s a pretty concerning statement that he has made… Fingers crossed when you have your scans it will be well shrunk!

I turn a bit pink and flushed from the steroids too… But all over me!

Tina hope your ok… I’m just feeling a bit rubbish now this I the start of my naff week… So go sore mouth and feeling wabbit should be getting better by th weekend though.

Love and hugs to all the TN ladies xxxxx

984

Morning ladies,
daysie I’ve replied on the other thread. Try not to worry too much, I’m sure the chemo is doing it’s stuff x
lulu- sorry ur feelin a bit crap. I hated tax but was pretty lucky with tge sore mouth thing. Just awful aches for me. Hope the se’s pass soon x
sadie, iv got everything crossed for ur results :slight_smile: x
Rachel hope your managing ok after the chemo last week. Hoping the carbo works mracles 4u x
sandra, sorry to hear about ur infection. Hope ur feeling much better soon x
hope everyone else is doing ok today? Anyone heard from rhian? Hope ur ok if ur Reading Hun x
I had a good nite last nite at the concert :slight_smile: Took it easy as it was really hot + she was still singing at 11.15 wen we left! It was a great show. Gona try + get out + about a bit tday as it can get a bit cabin fever-ish staying home. I’m feelin ok but I think the tiredness will kick in later after my late night + no meds today.
Love tinaxx

985

Hi ladies
all very quiet on here, hope everyone is doing ok?
I’ve been feeling a bit wobbly the last few days. Quite weak + shaky on and off. Just taking things very easy + hopng I bounce back by the weekend! We are taking dan to the winter wonderland @ Thomas Land (Drayton manor) so I’m resting up today + tomorrow before we head to Birmingham Saturday.
My anxiety levels feel pretty high, think I will ask my onc for a scan after cycle 2 not 3 if I can’t feel any improvement in nodes+ wheeziness by then…
Love to everyone,
tina xx

986

Tina sending big hugs and hoping you start tonfeel some improvement soon.

Still got sore mouth and a bit tired and moany but not too bad really. Xxx

Hope everybody else is well.

987

Hello All…

Tina - Sounds like you are sufferning a bit after the Carbo! I asked for an early sacn too - but was told there was no point as it takes three cycles to show if it working. If they scan too early and there is no responce they may stop and it would be too soon as may still work. So, they told me to hold on for 3 cycles. Stressfull, I know, but I can see their point. I would hate to stop too early! Glad you are fitting in some cool trips with your little man! I hope they are really enjoyable!! What are you up to in Birmingham??

LuLu - Thx for your good luck! Hope all is well with you. Sore mouth. OWWWWW!! Hugs

Paula - I hope you have had some reassurance. Have you got secondary bc or primary bc? Hope you are through the worst of the SE now.

Ive heard from Jo (Joey) via email. She is OK. Carrying on with weekly Taxol / Avastin which (as I know) is really hard work!! Anyway, basically, she is OK!!

Sandra - Hope your infection has cleared up? What number taxol / Avastin are you up to now?? Hugs.

Ive just had two days in Bath with my Mum. it was a lovely mini break and did some Christmas shopping! Also ate far too many cakes!! My MRI / CT department phoned my mobile when I was there to say they have sent the MRI / CT reports to my Onc - odd to phone and tell me, so trying not to panic!! You all know how easy it is to read things into situations! So calm…calm…calm!! Im sure they were just being super efficient (…but still odd to phone me and tell me reports have been sent the day after i had the scans - all seemed a bit urgent for my liking!!)

Anyway - im still waiting to hear if I can see my Onc on Monday for results. I have planned a busy weekend so I do not sit and stew too much!

Hugs and smiles to all - and special extra one to Rachel / FairyQueen - thinking about you lots and hope you are with your precious people!!

Sadie Xx Xx

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Good luck for Monday sadie- keep yourself busy that’s a good idea! We are going to Birmingham sat to Drayton manor (it’s by the end of the m6 toll road). Dan loves Thomas + the Christmas stuff starts this w/e so we are staying over on sat night + going the theme park Sunday. Feeling a bit better today, lots of rest so I should be ok 4a bit of activity by Saturday! Xx
lulu- glad ur coping ok on the tax. Are u having tax then carbo or both together? I found tax hardgoing but felt more sick on fec. At least our December treatments work well with Xmas, couldve been much worse. Rest up xx
can’t believe it’s Friday tomorrow- where are the weeks going?!
Love Tina xx

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I’ll be thinking of you on Monday sadie xxx

Tina I’m have tax and carbo together for 6 cycles… Sounds like you got a busy but fun weekend planned… Have lots of fun.

Lxx

990

Hi all
Good luck sadie for Monday. The waiting is awful isn’t it but keep busy all weekend.
Well done Wendy that treatment working which is good.
Hope Sandra, Sarah, Laura and Tina okay.
I hope you are feeling a bit better Rachel if reading - you are in my prayers.

I have had 2 carbo/gem but no day 8s as bloods not good. I’m having blood test next week to see effect of transfusion. Dr talking about reducing dose 20 pc but I’m worried to reduce as working v well and skin and nodes responding after just 1 cycle. Seems this tment harder than tax weekly as feel rough 1st week and no energy. I was told a walk in the park to tax but I think harder. Do u all feel a bit crappy for a week after gem/carbo ?

Weve booked winterwonderland and can’t wait as boys will love it. Santa has already written to them. Not sure at
17 months and 3 they understand but my older little one asking if we pull Santa down the fireplace !
Think chemo works providing no delays that I’m on week 3 so can enjoy Xmas :slight_smile:

Love to all
Jo x

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Hi all hope y doing ok sadie gd luck for mon Tina hope y not to bad on chemo I went to dentist y day I’ve got to have loads work done not to pleased sd was prob my rhumatoid and chemo that causing it was well happy as we don’t have enough to deal with hi hope15 hope y ok hope everyone else is ok big hugs enjoy wk end Laura x

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How on earth do all you ladies remember names and what is going on? I try so hard but as soon as I’ve read it, it seems it’s wiped from my mind!

I’ve read a link about chemo brain, although it’s just a small study, I think it’s got a lot to answer for. Does anyone else find themselves just forgetting to finish a sentence, or is that just me? I’ll happily post the link if anyone is interested.

What started as a wondeful week, with good scan results has just gone rapidly down hill. A lovely lady I met through my BCN died leaving bheind her husband and 2 little boys. We were so similar in our diagnosis and staging then suddenly she’s gone. It’s so hard, she’s the first friend I’ve lost to this awful disease and it’s really shaken me. Her poor family.

Slightly more trivial in comparison of course, but when I went for chemo on Weds they told me my calcium levels were right up and the Onc had prescribed Zometa. I don’t have bone mets as far as I know, but went along with it. Since then I’ve felt just awful, raging temps, flu like pains. It could be side effects but they’ve put me on antibiotics for 2 weeks just in case. Still, at least I’m not in hospital like last week, hooked up to a drip.

Isn’t cancer the absolute pits?

Sadie, I’m keeping everything crossed for Monday for you. I hope it’s the season of good scan results xxx

Laura, sorry to hear about the dental work, as if you didn’t have enough on your plate xxx

Jo, I have a lower dose of gem/carbo but have it every 2 weeks instead of every 3. I do feel wiped out most of the time I’m afraid, but it’s bearable, there are no other side effects and, touch wood, no transfusions, my bloods have always been okay. My Onc prefers this regime as she thinks it’s kinder on the body but just as effective, perhaps you could mention it? I hope you’re feeling better soon.

Tina, hope you have a wondeful weekend with the family, that’s what it’s all about isn’t it?

Love to everyone

Wendy
xxx

993

Hi ladies
hope ur all doing ok. Wer just enroute to brmingham. Nearly there so might do a bit of shopping this aft + off to see Thomas tomorrow. Looking forward to xfactor later! Feeling lots better but still chesty- hoping it’s the remnants of the virus I had pre-chemo, rather than anything more sinister…
Wendy I’m really sorry about your friend :frowning: I have been there + it really is difficult to deal with on several levels. It’s obviously a loss of a dear friend but it’s also a terrifying reminder of how fragile our lives are. So sad to hear a young family has been left behind- this disease is just evil. Big hugs to you xx
sadie hope ur ok + keeping busy. Good luck for Monday xx
Rachel- thinking of you lots + hoping things are improving for u xx
jo (hope) sorry ur finding this regime so tough. Hoping the se’s ease for you + start to feel better xx
love to lulu, sandra, Sarah, laura+ anyone else reading. I hope everyone is coping ok + is able to enjoy the weekend
tina xx

994

Hi everyone, not sure if I am allowed on this thread, I am tripple negative and worried about it returning, if in same area is this secondary or a recurrance? I have lots of pain in my hands and feet plus arm where it bends at the elbow. I had blood test and xray and waiting for results, but have to go next Thurs for a full body scan… onc thinks is all ok but surely she must be suspicious to send me for a scan, im so scared. plus the breast where i had my lumpectomy is now “fuller” thank my other breast and tender in places and the tender places of which there are 2, well they itch! is this a sign? any advice very welcome and thank you for listening (reading xxx)Silvershar xx

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Hope everyone is ok. Just a very quik post to wish sadie lots of luck for tomorrow- hope scan results show a brilliant response to the carbo :slight_smile: xx
I’m shattered after a brillant (+very cold!) day at Thomas land. Too tired even for xtra factor so will catch up with everyone properly tomorrow. Time for sleep now…
Love tina xx

996

Hi All -

Silvershar - I’m sorry I cant help as not had any of the things on your list! However, Taxol made my hands and feet very sore (peripheral neuropathy). Have you had Taxol / Tax receintly? Glad its being followed up - calm deep breaths!!!

Tina - Hope you enjoyed X factor!! Who is your fav?? I love watching Marcus!! Makes me smile. Hope you enjoyed your shopping / Thomas!! Thx for your good wishes for tomorrow. In will let you know…

Wendy - forget to finish your…um…well…what was I saying! On a serious note, I am very sorry to hear your news about your friend. Just makes all this cr*p real for us. I hope is was peaceful and her children have some good memories. My calcium was also up for a while (I do have bone mets) and they are ‘monitoring it’ - I am on Bisphosphonates already. I hope yours turns out to be nothing but a blood blip!! YES - Cancer is the worst PITS!!! Thx for your good wishes!

Laura - Oh dentist on top of everything else! What a shame. Hugs Xx Xx

Hope / Jo - I have reduced my carbo by 20%. I think after our bodies have been through the weekly chemo it is just a lot to ask it to do the full dose. My Onc said it was better to reduce the dose and keep to the right dates than to miss weeks cos bloods low. My platelet levels are the worrying ones. I was also told carbo (and im not even having the gem!!) was ‘easy’ in comparison - and I do not agree at all! The first week I feel very very ill. Can hardly sit and just feel horrid!! However, weeks two and three I do feel better than I did on the weekly Taxol - so get more quality time! I hope you have a wonderful winter wonderland trip - when do you go? Hope you have no chemo delays and the dates work! Hugs - we seem to be following a simmilar path.

LuLu - Thx for your good wishes too! Hope you are OK this week?

Hugs to all other wonderful cyber friends!

Scan results tomorrow - calm calm calm!! (well - sort of!!) My Mum and OH coming. I just hope all is OK - Ive got too much to live for - we all have! Chemo I LOVE YOU - pls be working!!

Sadie Xx Xx

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Fingers crossed for you, Sadie.

Love, Sarah xxx

998

Will be thinking of you Sadie and wishing you a positive response…

Welsh girl xx

999

You ladies are wonderful!!

I love chemo!!! Fantastic response. All tumours shrunk to tiny pin pricks. Onc can’t believe such a positive effect. Best Christmas present ever ever ever. I’m soooooo pleased. In having chemo again now!!

Hugs nd smiles to all,

Sadie Xx Xx

1000

Woop woop woop!!! Fanastic news sadie :))) I’m thrilled 4u!! Long may the carbo continue 2wrk 4u!
Tina xxx