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Posts: 588
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

Hi Scaryfox, just come onto this thread for the first time and seen your news. I'm so sorry to hear that the results were so crappy. As you probably already know I have liver and spine mets and was on weekly taxotere. I'm now on Arimidex and Bondronat and so far I'm doing ok. The liver mets have shrunk dramatically and my liver function has improved greatly. I just want to say that although I really do understand how ghastly you must be feeling at the moment, it will get better I promise. I hardly think about it now, I just assume I'm going to live for years! Good that they got the chemo started so quickly. The se's were minimal as well, no hair loss when you have it weekly, mostly just indigestion which they can help with.
Sending you lots of love and hugs.

Tina, I haven't had a pet scan (in fact, I haven't had many scans at all really) but I'll be thinking of you and holding your hand.

Hope everyone else is well today. Take care of yourselves, lotsa love, Dianne x x x

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Posts: 37
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

I am so sorry scareyfox, just seen the new thread and heard your news. Great that they are starting you so quickly on Tax.
Why do some onc think carboplatin works better in combination and only offered on its own by others. God we rely so heavily on professionals' knowledge it is scarey. Our lives our in their hands - what else can we do?

quite keen to get by CT scan done now!!

Thinking of you.
Kelly xx

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Posts: 890
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

Bloody hell scaryfox Smiley Sad really sorry to hear the news wasn't good today. Pretty impressed by the speed of the results tho! Hope the painful chest lump is less painful today? Glad u can start a new chemo regime so soon+ hopefully the side effects will be less due to it being weekly. I am in the same situation re genetic tests. Seems like entry onto parp trials restricted to brca ladies so I'm considering paying for the test privately. Think you might also be exempt from the trials if had lots of chemos- I need to look into things further. Shame carboplatin never proved more effective- the professor I saw yesterday at the marsden suggested carbo in combination with a few others. Can't remember as he was rushin through all the info but I'll get a written report soon.
When was ur primary + secondary diagnoses? This tnbc is a bloody nightmare.
There is defo more signs of skin mets on my side- need to let the rads specialist know tomorrow so he can rake this into account with his planning. I honestly feel like a ticking timebomb after last weeeks appts. Dreading my scans later this month. Any of you ladies ever had a pet scan ?
Thinking of you
tina xx

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Posts: 136
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

Hi all, thanks for your wishes re the scan today...

Unfortunately not good news, my onc just called, though some of my lymph tumours have shrunk, others have grown and it has also spread to my liver, which might explain why i have been feeling more ill :-(

This makes him even more keen to start me on weekly taxol from Friday, giving up on the carboplatin as obviously not strong enough, he is also writing to my insurance company to try and get avastin, says it's difficult to get funded though. I did ask about parp inhibitors but he didn't seem to think it was an option, can't remember why now my brain is so fuzzy... Maybe cos they don't know if I've got the brca gene or something? Think you might need this for the trial...

Sorry my brain is all confused... Very upset and scared re Friday. Hope u r all ok x

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Posts: 890
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

Hi sandra the iscador treatment sounds worth a shot doesn't it! Any benefits would be welcome Smiley Happy my mum picked up a leaflet for me whilst at homeopath clinic for allergy treatment. I contacted them + they said Liverpool pct will cover cost so just waiting to hear from them now coz gp has sent the referral. Might be worth enqiring about with your gp? When was ur primary dx btw? Or did u have primary+ secondary dx together? Hope the carbo is effective for you + the chest drain isn't as bad as it sounds Smiley Happy x
scaryfox hope your scan went well today + u don't have to wait too long for results x
I feel like a ticking time bomb at the mo after the last week of onc appointments Smiley Sad Absolutely dreading the scans this month think I will need heavy sedation during the wait for results. I am keeping busy trying to arrange my little boys christening for later this month. It was planned for April but we cancelled due to chemo. Want to enjoy tge day as much as poss so the sooner I do it the better.
Hope everyone is as well as can be today
love tina x

saj
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Posts: 139
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

HI ladies,
Tina this thread is a great idea, as you say our experience is a bit different.
About me, dx March this year neck lymphs and lung pleural. Had chest drain & 6 x Taxotere, last one on 30th June.Neck lymphs have gone, but chest plueral back, plus skin lessions under right breast and lumps / hardening in same breast. Started Carboplatin on Fri (1st Oct) and need chest drain....which I've chickened out of at the mo!!

Tina I've seen your other threads and I'm rooting for you at Marsden today...........let us know how you get on.Have also seen the Iscador thread, how did you find out about this, as obviously I'm interested!!

Scareyfox, Good luck with your CT on Tues, we sound as though we have a few similarities with our secondaries! Have there been any improvements in your symptoms after treatments?

Sandra x

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Posts: 890
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

Best of luck for your scan on Tuesday- I know how anxious it gets waiting for results. Maybe ask your consultant about parp inhibitors if your options are limited with chemos? Lets know how you get on x

Member
Posts: 136
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

Thanks Gingerbud, hi everyone, I'll be keeping an eye on this thread too! I have triple neg secondaries in neck and chest lymph nodes, and recently local recurrence in breast ( to be confirmed with CT scan Tuesday). Have had capecitabine and carboplatin but onc thinks they're not doing enough so wants me to start weekly taxol on Friday. Scared! X

Member
Posts: 890
Registered: ‎01-05-2012

Triple negative secondaries/ recurrences

Hi ladies
just thought it might be useful for us to have a specific thread for tnbc secondaries as our experiences tend to be quite different to ladies with hormone positive bc (eg treatment issues).
My current situation is skin mets (local recurrence apparently) but my chest wall was also affected. Dx just last January + cancer recurred within weeks of last chemo. Therewas obviously mcroscopic activity at back of breast which was left behind after the Mx and the chemo only suppressed it Smiley Sad

Hope to chat to others in a similar situation very soon Smiley Happy
tina x