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
Hope to chat to others in a similar situation very soon
tina x
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
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
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?
Hi sandra the iscador treatment sounds worth a shot doesn’t it! Any benefits would be welcome 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 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 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
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
Bloody hell scaryfox 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
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?
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
Thank you Tina, Sandra, Kelly, Dianne, Debs, Lulu and all…
It’s such a horrible time but it’s nice to feel less alone… At least as you say I didn’t have to wait for results, my onc has been a star actually, calling me same day and he even popped in to see me on Sunday when I was stuck in hospital with the allergy. Little things like this really help.
Dianne, glad you have had such positive results with liver mets, interesting what you said about no hair loss, mine is to be taxol not taxotere but I thought you were pretty much guaranteed to lose your hair with both, weekly or otherwise!
Anyway I am going to try and convince myself the taxol will work. I’m really tempted to ask to see my scans… I sort of feel like I need to know exactly what’s going on in there/ what I’m dealing with. Has anyone else seen their scan pictures?
Hi Scareyfox,
What can I say,…nothing, other than I’m sending you my love and best wishes and hoping the new treatment will get a grip on this wretched thing. As you say your onc seems really good, which is such a bonus…makes you feel he’s fighting just as hard as you are, instead of just “doing his job”.
Tina, No help re pet scan, sorry! Thanks for info on Iscador. Does the Marsden advice overrule your oncs thoughts re treatment? God it’s all such a nightmare isn’t it? Organising the christening sounds like a great idea, it’ll be nice to get together with family & friends and to relax as much as poss.My primary dx was Feb 1996 and I was more shocked with secondary dx as I never thought it would come back! (Dianne was longer between dx’s than I was, think it was 18 yrs.)
Kelly, when’s your CT due?
I have felt awful for the past couple of days, so sick and breathless. Sickness seems slightly better today & I’ve managed a shower, a bit of make-up, but still not dressed! I do not envy you ladies with children to look after!
Hi Scaryfox, hope you are feeling a bit better in yourself today.
I’m not sure about the taxol and hair loss, but the onc said right at the beginning that the chances of losing my hair if having the taxotere weekly were minimal. It has thinned a bit, but otherwise ok, so you never know, your might be the same with the taxol.
I always see my scans when I have them done. The onc always shows them to me automatically and points to the tumours and so on. Just ask to see them, I’m sure it won’t be a problem.
Tina and Kelly, hope you are both ok today. Sandra, I’ve written on the other thread to you and once again, I hope you are feeling a better and the sickness has eased.
Thinking of you all and sending loads of love and hugs, Dianne x x x
I saw your post the other day and I wish you well in an upsetting situation. I had weekly taxol from feb. to july this year for regional lymph recurrances and found it not too bad- certainly much less harsh than FEC which I had 2 years ago. It is reckoned to be pretty strong stuff and my onc. told me it has good results. I had some shrinkage to lymph mets with the chemo. and have recently finished rads to the area. I started to lose my hair after about 3 doses (1 cycle) but was not totally bald. You also get a week off every 3, which makes it more bearable. Good luck for tomorrow,
Just a quickie to wish scaryfox all the best for your tax tomorrow Hope it goes well, causes minimal SE’s but maximum damage to the cancer. Let usknow how it goes x
I have my appointment through for my repeat scan - its next Monday and my bcn has promised to stalk the radiologist until he gets the scan reported on so Im hoping the wait will only be a few days. I have the valium at the ready (literally).My skin mets have become much more active again andI want to start rads NOW. This waiting around and doing nothing is causing me so much anxiety its unreal. Apparently the rads is getting planned next wk with a view to starting treatment the following week. god knows how bad the rash could be again by then…
Speak soon ladies hope everyone is as well as can be today
Tina xx
Hi Tina,
Good that you have your scan appointment, shame you’ve got the horrible waiting for a week though.
Have you tried calling scan dept to ask for ANY cancellations re scan? (not sure if you can drop everything & get to hosp at short notice?). I always ring for results sooner than I’m told they will be ready!! I think making a bit of a nuisance of yourself works, sometimes. I managed to get chemo started in half the time I was told by doing this. (1.5 wks instead of 3).
As you say the doing nothing is awful. Thinking of you, hope your day is as good as it can be…how’s christening arrangements coming on?
Hi all, thank you again for all you advice and well wishes! I had my taxol and avastin today, despite platelets being quite low… I got the impression the nurse wasn’t keen but onc said go ahead. Bit worrying! Feeling ok now but exhausted. Not looking forward to this weekend and the constant demands of my 3 year old - at least there is nursery during the week!
Sandra, sorry to hear you are feeling rough, the breathlessness sounds awful. Thinking of you.
Tina sorry about all the waiting around, that is something we just don’t need do we. Good luck with that scan.
Sarah, I asked about the week off, they said I needed to see how it goes and discuss with onc… They are still insisting I will lose my hair though! Couldn’t be bothered with the cold cap though… I look so shitty anyway from all the steroids and skin allergy etc ive pretty much given up trying to look human!
Hi Scareyfox,
Hope you get through the weekend ok, hopefully the se’s will be minimal or at least not start till Monday when you’ll have nursery to help. Do you have anyone who can help you?
If you lose your hair will you go for a wig? I lost mine during Taxotere, but went the scarf route as I didn’t feel comfy in a wig. I was always worried it would be lopsided or be so obviously a wig that I was happier with scarves. I got quite inventive with tying them and using all sorts of accessories to match clothes etc.I know have 1.5 inch GREY growth…I used to be chestnut (with the help of a bottle!)
My hospital have a Headstrong advisor, does yours? We’ve also just got the Look Good Feel Good service and some of the comments I’ve read sound as though it’s well worth going to, plus you get a goody bag too!!
Keep strong, keep positive and look after yourself. This treatment WILL work!!!
Tina, Kelly, Sarah, hope you have a good weekend, weather is supposed to be good.
I went to chemo unit yesterday and had bloods & chest xray cos I was still feeling bad. Outcome is, bloods ok, note has been made to change meds at next treatment re sickness and chest drain booked for 18th Oct!!!
Must say they were really good and knowing they have taken control has made me feel better.
Just a couple of comments re hair etc - Bohemia fashions online are excellent for scarves and bandanas. I used a cap/bandana combo. that they sell - very comfy and stops and baldy bits showing if that’s what you want. I also used Bodyshop eyebrow powder for those non-existent brows (I sound like an advert here!)- very natural and easy to use with a little curved brush. Look Good/Feel better course is meant to be brilliant, especially the goody bag you get with ( I’ve heard from my chemo. nurse) about 200 quids worth of free stuff. So worth doing if you can. I didn’t bother as I had chemo. at home and it’s 40 miles to my hospital at Velindre in Cardiff - in fact going everyday for rads in Sept. mostly by train was particularly knackering! A lovely day here in S.Wales. Love to you all,
Hi ladies
just checking in to see how you are doing? Good I hope! Been a really nice wkend here can’t believe it’s October! Just got home from our caravan in Wales + had a lie down coz I’m feeling totally drained My skin mets are growing again + I feel desperate to start rads before they get really bad again. It’s been 6wks since my op + haven’t even had rads planning yet. I fear the rash will be as bad as it was before my op + it will gavexall been a waste of time. Can’t help feeling my oncs aren’t rushing anything as they have given up on me somewhat. Feel so down + dreading what lies ahead 4me. Going to speak to bcn 1st thing + get her on case to establish exactly when I’m starting rads. If longer than next week then I’m using our private health + contacting Christies to see if they could sort it faster.
Scaryfox how are you feeling after the tax? Hoping the SE’s are minimal + you’ve teen able to enjoy some of this wkends lovely weather. I see you got avastin- did your insurance cover it? My oncs dismissed it as a beneficial treatment so you must lets know how you find it. Hope you’re ok x
sandra so glad to hear you have a plan in place + your chest drain booked etc. Sounds awful but must be worth it in terms of offering pain relief etc. Have you done anything nice this wkend? X
hi to any1 I’ve missed. Posting off my phone so can’t read back + my heads up my a*se bigtime anyway
back on later
tina xx
