cancel
Showing results for 
Search instead for 
Did you mean: 

Triple negative secondaries/ recurrences

Member

Re: Triple negative secondaries/ recurrences

Tina congrats on results (saw other thread)!

Thanks for all your comments everyone, I am still in hospital, still a mess, remember that episode of SATC where Samantha gets a chemical peel? That's me, only more bloated and with knees, chest and elbows to match.

Oncologist just popped in though to tell me abraxane has been approved as an alternative - it's the same active drug apparently just not dissolved in the solvent which causes most peoples allergic reactions. Scheduled to start this plus avastin on Tuesday, itch/allergy permitting.

I haven't been test for brca1 ever so not eligible for parp trials...

Thinking of u all...

Itchyfox

Member

Re: Triple negative secondaries/ recurrences

Right part 2...!
Sandra how are u doing? Thanks for your congrats Smiley Happy I am delghted with my scan results I did mention it on my post last night that vanished! Any plans for the weekend? Thanks for all your support on here x
debs sorry to hear about your new worries. Really hope the liver function is down to something innocent + they don't leave you fretting for weeks? Any sign of an ultrasound/ scan appointment? Push your bcn if not. Best of luck x
Sarah how are you? When are u due to start rads? Have you had your ct results yet? I had another scan this week + thankfully it was clear- no changes since Augusts scan Smiley Happy Im starting rads next week hopefully. Hope your well x
Dianne- thanks for all your supportive posts. You are lovely Smiley Happy. Hope you are feeling well + have a great weekend x
hello to anyone I've missed too!
I'm feeling a bit better following my ct scan on Monday. It's only short term reassurance but that'll do for me at tge mo- gota grab what we can haven't we!! I've been in + out all week with scans, results, various rads planning sessions etc but I'm glad I'm nearer to treatment. Hoping to start at the end of next week- it's my bday Friday so getting started with rads will be a good birthday pressie. God I'm wasily pleased these days Smiley Wink !
Right I'm submitting this now before I lose it. Love to you all
tina xx

Member

Re: Triple negative secondaries/ recurrences

Hi ladies
sorry I haven't been around much this week it's been very hectic. I did post last night on this thread along with a few others but I lost it in cyberspace + I was too tired to retype as it was a long one! Hate it when that happens!!
Scaryfox I can't believe how your suffering at the mo it's just not fair. I really hope you feel better soon. Are u still in hospital? If u have reacted to taxol does that mean ur likely to be allergic to all taxane chemos? Hope there is another chemo option that suits you + works wonders. Have u discussed parp inhibitors? U take care x
margaret I am very interested in this new drug?? Is it parp inhibitors or something else? Please do keep us posted . Good luck with the capcetabine x
Kelly how are things with you? Have you had your scans to see if the carbo is working? Hope it has + ur not being kept waiting for results. Lets no how you are x
I am posting this half of my message now before it disappears + I'll carry on on a new post!
X

saj
Member

Re: Triple negative secondaries/ recurrences

Tina, I've just read your post on other thread re your scan......great news!!! So pleased you have a positive to focus on.

Sandra x

saj
Member

Re: Triple negative secondaries/ recurrences

Hi Scarefox,
We were posting at the same time! Are you still in hospital?

Sandra x

saj
Member

Re: Triple negative secondaries/ recurrences

Hi everyone,
Scareyfox, I'm so sorry to hear about your allergic reactions, they sound awful,I hope they've managed to make you more comfortable...do let us know how you are when you can.Sending all best wishes to you.

Kelly, Scans done? Now it's the worst part,waiting for results. Funny you talking about friends, I haven't seen mine since my latest recurrence and I couldn't be bothered, but this week I invited them round for a coffee.....and I really enjoyed it. I found that being in my own home was better than a coffee shop and not as tiring.

Margaret, I think we'll all be very interested in what you mange to find out from your relative. Sorry, don't know about Capecitabine, but pleased you are ok so far, long may it continue!

Debs, Sorry to read your post re liver function, have you got your ultasound app yet? I really don't have any advice to offer, sorry! I do know, from some of the other threads, that drinking lots and lots before & after chemo helps the liver flush the drugs out and that the liver can be greatly affected by chemo. Please, please let that be the case for you.Did you actually have your chemo?

Sarah, hope you continue to feel well.

Thinking of you all, try and have a decent weekend....I know, easier said than done!

Sandra x

Member

Re: Triple negative secondaries/ recurrences

Thanks Margaret!

Definitely let us know what you find out re the new drug. About capecitabine, I did 4 cycles of it, the main side effect was sore hands - very dry palms, and to a lesser degree feet. It was cumulative, but cleared up a couple of weeks after stopping the pills. It kept my tumours stable but no significant shrinkage so I switched chemo, but there are people on this site who've been on it for years without too many problems. Some people get tummy trouble but mine was ok.

Taxol on the other hand... I never ever want to touch the stuff again! As well as all the skin allergy, flaking, bleeding and itching, it feels as if someone is trying to yank out my hair by the roots! Obviously it's all going to fall out soon, I am praying that when it does the pain will stop. I am so desperate to neck a handful of those morphine pills... But can't as it'll just be short term relief and make my skin even worse.... Grrrr!

X

Member

Re: Triple negative secondaries/ recurrences

Hi everyone

Hope you are feeling a bit better today scaryfox. What you are going through sounds awful. My thoughts are with you. I am making enquiries with a relative in the pharmacutical business about the new triple negative drug in trial at the present time and I will post what I find out. I agree completely that if there is a drug out there which will help money is no option. I was just a little concerned because of these new cuts that we keep hearing about!!. I am now on the fifth day of my first cycle of Capecitabine. So far not too bad but would I be right in saying that the effects are a build up and that I should not be too complacent. Love Margaret

Member

Re: Triple negative secondaries/ recurrences

Hi all

Not sure why the posts I send keep going missing into cyberspace, its just done it again so here I go again!

Went for chemo yesterday and blood levels were 0.75 so had another test to see if they had come up, they had to 1,3 so all ok to go ahead. Wasnt feeling great as had a chat with Onc about the number of CT scans Im having and am a bit worried I might be making things worse. She agreed I have had a lot lately with blood clots and fluid on lungs etc but we should still push ahead with one planned for next month. I asked if there were alternatives but she said with lungs CTs are the best for getting the minute detail. She said I would only really realise the effects of so many Cts in 10-20 years and I wont be here then anyway. I was a bit taken aback even though I know its serious stuff now its in lungs and floating around god knows where else, but Im ever hopeful that with all the reserach and funding a treatment is just around the corner. Anyway she has just rung to day one of the blood tests came back late which showed liver function is high and she wants to get an ultrasound done quickly. This could be due to chemo, the fact im on antibiotics for a heavy chest infection or cancer. Needless to say Im worried to death now. Has anyone any advice or been in a similar situation?

Debs

Member

Re: Triple negative secondaries/ recurrences

Hi Everyone, Scaryfox, so sorry to hear you are having such a bad time. This is just to let you know that I am thinking of you and sending you lots of love and hugs and all good wishes for a speedy recovery.

I hope everyone else is feeling well and that you all have a happy, peaceful and painfree weekend.

Loads of love to you all. Dianne xxxxxxxxxxxx

Member

Re: Triple negative secondaries/ recurrences

Oh Scaryfox, I'm so sorry you are having such a bad time. The reaction sounds dreadful, hopefully they have got you more comfortable today. I didnt have any such reaction when I first had chemo and had a tax along with FEC so I cant offer any constructive help unfortunately. I kind of got the impression when I saw my onc yesterday and we spoke about very expensive drugs that it doesnt matter, the cancer drug fund is set up and there is money to spend before March, so whip your blazing guns out and stick to them if you can. I guess each area is different in the amounts they have to spend, but ours covers a huge area and she still said to me dont worry about cost. I dont need anything yet, I was asking about a new drug which I had read about on the site for triple negative secondaries which it said is as yet unlicensed and is likely to be very expensive. I dont know which trust you fall under but if you need a certain drug then you need it and if its the best option for you then there isnt any choice, expensive or not. Thinking of you and sending big hugs for you to feel better soon.

Debs xx

Member

Re: Triple negative secondaries/ recurrences

Just checking in to wish Kelly good luck for tomorrows scan!

I am stuck in hospital again, I not only had an allergic reaction to morphine but now also to my first taxol. My skin is burning and falling off and I look and feel disgusting, eyes all swelled up, so painful. I am hoping they can switch me to abraxane but may be too expensive.... Don't know what else I can do.

Hope everyone else ok x

Member

Re: Triple negative secondaries/ recurrences

Hi all,
I have just started my first cycle of Capcitabine (second day completed). I think my first reaction when I was told that this was happening to someone else and not me. Anyway it is me and I suppose I must just get on with it. It is certainly good to know that I am not alone although I am obviously sorry that anyone has to go through this dreadful disease. My thoughts are with you all and I wish you all the best. My Onc has said that my prognosis is years rather than months although not very many years. He is obviously talking about what is available at the present time. He did however say that there is new drug in trial yet to be licensed which will be offered to Triple Negative Secondaries. Has anyone heard about this. Of course with the cutbacks even when it is licensed it is likely that it will not be available on the NHS. Love to all, Margaret

Member

Re: Triple negative secondaries/ recurrences

Thanks Sandra and Sarah
Great to get replies - makes me feel better and not alone. I will get the results on Tuesday when I am due for my next appt with onc re: chemo next Thursday.

I am finding being at home and not working difficult. I don't think I would be much use at work, but at least you are occupied. I am not a housework person and usually after walking the dogs I am tired anyway. Like you say, need to find something to distract - not sure what yet. Looking at meditation and head massage but I keep missing them - something gets in the way. Need to get into gear and do something.

Have great friends wanting to meet for coffee, but even that is emotionally exhausting - they have a 'normal' life, but mine is not. Even haven't replied to one lady who wants to meet up because I can't bear the thought of having nothing to talk about or interesting to talk about other than 'my cancer'.

Anyway, enough moaning - time for bed I think. Speak to you all again soon.

Scareyfox - hope you are OK.

Love Kelly x

Member

Re: Triple negative secondaries/ recurrences

Hi Sandra, Kelly and everyone,

In response to your question, Sandra, yes I'm fine thanks. Not having any treatment at the moment, thank goodness. Waiting for the results for rads from CT Scan happening in a few weeks. I'm trying hard to lose some weight after putting on 1 1/2 stone after 6 months of chemo. followed by generally stuffing my face! I found I'd reached the ridiculous weight of 15 stone 10 last week and thought it was time for action since I may be on more chemo (oral) come end of Nov. if scans aren't positive. Sorry Kelly you are feeling so anxious - it's hellish waiting for scans - I hope it goes OK on the 15th. I know it sounds silly and obvious but sometimes something like a good film can help you take your mind off things. At the time of my primary dx late 07, I spent about 2 weeks not eating or sleeping properly and watched the DVD of Love Actually day before going for op. I felt so much better after it. Daft advice, sorry. Beautiful Autumn weather here in Neath. Love and best wishes to you all,

Sarah x

saj
Member

Re: Triple negative secondaries/ recurrences

Hi all,
Kelly, so sorry you are feeling miserable.I have everything crossed for you that your results are going to be positive news. How long will you have to wait for results?
How are you feeling today? It's a nightmare trying to keep control of emotions, when deep down we are just scared,scared,scared.I got a relaxation dvd and have found it helps. The hardest part is making myself put it on, sit down & listen to it.
I asked chemo nurse if it's possible to repeat chemos. He said there are some that have a maximum dose because of the effects on the rest of the body, but other than that info I don't know how things are decided. Will you ask at your next appointment?
I hope you can find something to take your mind off things, I know, easier said than done!
Hi everyone else, how are you all?

Sandra x

Sandra x

Member

Re: Triple negative secondaries/ recurrences

Hi everyone
Due for a scan on Friday 15th. Getting rather anxious about it. Don't think I can cope at the moment with it not working - it has to be working.

There are so many different chemo out there - I don't understand how they choose rather than you can't have that because you've had it already. In someways I have already shot myself in the foot as I had the NeoTango trial which consisted of four different drugs. The EC didn't work and only had two cycles; the gemicidibine and paclitaxol I had for four cycles. Because I had taxol it limits the other taxol based ones - but then the onc said I would have docletaxol (?) so very confused as to future options - if it comes back!!!!

Well, well a truly miserable - I think I need to go eat or shop.
Regards
Kelly x

Member

Re: Triple negative secondaries/ recurrences

Hi Scaryfox

Re the Avastin side effects, when I went through all the possible se's with my onc prior to staring Avastin, she made the point that most of the worst se's were seen in people with bowel cancer, and she had seen only very minimal se's in breast cancer patients so far, and only one patient of hers has had to stop taking it (a kidney problem).

I have also been told that Avastin is just starting to be used much earlier on - this is the case with me as my secondaries are very minimal so far, so I think you have to look at success rates in the light of that as well.

finty xx

Member

Re: Triple negative secondaries/ recurrences

Hi Everyone, just to say I hope you are all feeling a bit better today and that the se's wear off soon Scaryfox. I found that the first one was the worst and after that things improved greatly, so fingers crossed.

Tina, thinking of you today and hoping all will be well.

Take care everyone, have a great day. Lots of love, Dianne x x x

saj
Member

Re: Triple negative secondaries/ recurrences

Morning ladies,

Tina, I've sent you a reply on the other thread you started. Good luck for today, let us know how things go.

Scarefox, I'm so sorry you're having such a s**t time. Have you spoken to chemo unit re your symptoms? (sorry if that's a "sucking eggs) idea!). My hair started to come out after about 3 weeks from first chemo. It didn't all fall out, but big patches did and I shaved it off in the end cos it was driving me mad! I don't have any words of wisdom re Avistan, but hope you can discuss it with your onc asap.

Sarah, hope you are ok?

The weather in Essex was lovely yesterday, I didn't really make the most of it though! It was just lovely seeing it through the window.

Thinking of you all and sending hugs for all appointments etc.,speak soon,
Sandra x

Member

Re: Triple negative secondaries/ recurrences

Thanks again guys for your wishes, and hair advice! I will look into scarves as already my scalp is tingling which I think means it's ready to drop?

I've had a rough weekend, very sore all over though I think a lot of it from skin damage from the allergy. I've cut down on the morphine and upped the steroids so am slightly less itchy, tough though as the chemo/ avastin will stop me healing as well as I would.

Re avastin, Tina I am a little undecided whether I want to continue after what you said on the other thread! It wasn't covered by my insurance limit, but they said they are making an exception - and granting me it for at least a year. God knows what my onc must have said to them! He seemed pretty keen coming in and discussing it with me on a sunday like that. Bit worried, maybe like you said, it is a last resort and my only hope? I am going to have to discuss the side effects more though, I'm worried about the possible stomach bleeding etc etc... Already a risk when on all the steroids I take for my autoimmune condition.

Hope you all had a better weekend!

X

Member

Re: Triple negative secondaries/ recurrences

Hi ladies Smiley Happy
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 Smiley Sad 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

Member

Re: Triple negative secondaries/ recurrences

Hi Sandra, Scaryfox and everyone!

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,

Sarah

saj
Member

Re: Triple negative secondaries/ recurrences

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.

Love Sandra xx

Member

Re: Triple negative secondaries/ recurrences

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!

X

saj
Member

Re: Triple negative secondaries/ recurrences

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?

Sandra x

saj
Member

Re: Triple negative secondaries/ recurrences

Hi Scareyfox,
Best of luck for today, .........let us know?

Sandra x

Member

Re: Triple negative secondaries/ recurrences

Just a quickie to wish scaryfox all the best for your tax tomorrow Smiley Happy 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 Smiley Happy
Tina xx

Member

Re: Triple negative secondaries/ recurrences

Hi Scaryfox,

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,

Sarah x

Member

Re: Triple negative secondaries/ recurrences

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

saj
Member

Re: Triple negative secondaries/ recurrences

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!

Thinking of you all, Sandra x

Member

Re: Triple negative secondaries/ recurrences

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?

Love and thanks again for all your support x

Member

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

Member

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

Member

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

Member

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

Member

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
Member

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

Member

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

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

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