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Triple negative secondaries/ recurrences

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hi ladies
I posted on here Monday night from my phone but no sign of it- must be yet another lost in cyber space!?! Anyway just checking in to see how sarahs onc appt went today. Hope the scan results were good + you are ok x
rikva great news about your scan results. Onwards + upwards now x
margaret- really sorry to hear you are still poorly and chemo is delayed. You sound really fed up + I hope thongs start to improve 4u soon x
claire I have pm'ed you. Hope you're feeling better by the day+ are nott too anxious about the iminent hair loss x
scaryfox- how are things with you? Hope you are ok x
Kelly, debs+ anyone else I've missed, hope you are feeling well + happy as can be 🙂 x
I'm ok half way through rads now + the skin mets are responding well. Massive improvement in the look + feel of the rash thank god. Onc was delighted on Monday which was very reassuring. Skin getting a bit sore as such a high dose on a large area but who cares if it's working 😉 ! Felt less sick this week too- think I wasn't drinking enough last wk.
Love to you all
tina x

margit
Member

Re: Triple negative secondaries/ recurrences

Hi all

Hope all is going well for you all.

Went to see my Onc yesterday and as expected he has delayed my second cycle to next week provided the infection in my throat clears up. At the moment there is no sign of it waning. Chemo sister told me this morning if I am still feeling unwell on Monday to call her and she would speak to Onc about delaying yet another week. Apart from the fact that I hope the infection does go I really want to get on with the chemo as I am beginning to feel there is a very dark cloud over my head. I am sure you have all been there!! Anyway I intend to become an expert on all television programmes for the next few days! Sorry don't mean to moan but I am feeling a bit low today.

Had my first Counselling session today - I think long term this will be good for me but at the moment I have a lot of issues that I need to get out. The Counseller did say my feelings are quite natural which I am sure they are.

Anyway off to watch Desperate Housewives. Someone elses problems.

Love Margaret

poppet75
Member

Re: Triple negative secondaries/ recurrences

How's everyone doing? My chemo is every 3 weeks, next step is shaving my head next week, enjoying my last few days of hair!!! The SE's on Abraxane are very different to those of FEC, had hardly any nausea but the bone aches are something else, my hot water bottle has been my constant companion for the last week!!

On a positive note I part arranged a Pink Halloween Party in Manchester on Sunday with proceeds going to BCC and I'm pleased to announce we raised #2,500 AMAZING, everyone was so generous on the evening it exceeded our wildest expectations, I felt a little spaced out but managed to go for a couple of hours and I'm so glad I did.

Just signed up for LOVE FILM for the next couple of months, keep me entertained over the forthcoming winter months.

Sending hugs to all

Claire x

sarah68
Member

Re: Triple negative secondaries/ recurrences

Hi Sandra, Tina, Kelly and all!

Not much news "my end". Had CT scan on Mon.My onc.is away today, so seeing him tomorrow with the results. My mind is running riot, of course, you've all been there, imagining the worst! It was good, Rikva, that you had your results straight away and at least you didn't have any horrendous news. Hope you're OK Claire - are you having weekly chemo? Scaryfox, Margaret and Debs - how are you all?

All the best,

Sarahx

saj
Member

Re: Triple negative secondaries/ recurrences

Hi ladies,
Rivka, well done on being "complex & difficult!", no point in the oncs becoming bored, is there?! I'm pleased you were pleased with your results, we have to grab any bit of good news that's on offer.
Margaret,how did your onc app go yesterday? Hoping your chest infection is better.
Sarah, what news after your app yesterday?
I've nothing, news wise to add, hoping to get GP app today, will let you know.
To everyone else on this thread, hope you are as well as is possible, have a good day and I'll speak to you soon,
Sandra x

Rivka
Member

Re: Triple negative secondaries/ recurrences

Went to the clinic today and for once the news was reasonable - not good but better than usual. Although I have raised tumour markers and liver enzymes that indicate something sinister, I don't have any large metastastes in liver or lungs. They now think it's something to do with my gall bladder as well. Felt perversely proud when they said I was a "complex and difficult" case. Isn't that sad but anything that makes you feel better..Yet more tests booked and chemo to start after that as well as having bisphonates. With such a full diary I don't know how I will cope! I realise that although I'm still a passenger on the cancer Titanic the iceberg seems to have receded just a little bit on the horizon. Thanks for all your messages of support. I read them in the waiting room and they gave me strength.

BaxterandNemo
Member

Re: Triple negative secondaries/ recurrences

Hi Everyone.

Isn't it brilliant how everyone supports each other. I get so excited and reassured when I know people have read my notes and replied - lovely.

Sandra - hope you are feeling better. have you got your happy pills yet??? It is very difficult when you can't sleep - sometimes I wait until my head is nodding before I go to bed hoping to get to sleep, but all of a sudden you wake up!!!

Rivka - hope today went well. I am on a triple negative trial TNT.

Claire - glad you are doing OK and hope the prunes work fast - so uncomfortable when you can't go!

Sarah - sorry to hear that the rads is still causing so much discomfort - let me know how you get on the the scan. I have been told that the lymph node lumps may not totally disappear due to scar tissue etc.

Margit - I am only on my fourth chemo and desperate to finish. I hope your cold gets better soon and you start your second cycle soon.

Love to you all.
Kelly

margit
Member

Re: Triple negative secondaries/ recurrences

Hi All

Rivka will be thinking of you today and wish you all the best for your treatment.

When I read what you are going through I feel like a hypochondriac as I am in early stages of my secondaries.

Hope Scary, Tina and Kelly are feeling a little better now.

I have had a bad chest infection and have only today finished my antibiotics. Unfortunately winter time usually means three or four antibiotics for me as my infections are real little b... and take ages to go. Anyway seeing Onc tomorrow - don't know whether he will want me to have another week off or what as I still have the hacking cough. It will only be cycle two and I am anxious to get all this treatment behind me.

Love to Sarah, Debs, Sandra and Lyn (should have put you in alphabetical order!!!) and anyone else I have missed.

Margaret PS I have not forgot about new treatment. Unfortunately relative is in USA at present time with a family illness.

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Best of luck tomorrow Sarah will be thinking of you. Hope you don't have to wait too long for results x

sarah68
Member

Re: Triple negative secondaries/ recurrences

Just a short note to say "Hi" to everyone on this thread,

Hope you are feeling better, Sandra - it sounds like an awful situation with your chest - I really hope they can do something about it soon. You should not be left in such discomfort. Thinking of you.
Rivka - I'm in a similar situation to you as I've got a scan tomorrow too. Had rads 6 weeks ago from in my armpit up to my neck - still quite uncomfortable and heavy and my lymphodema's playing up again too.Need scan to check state of lymph mets - idealy disappeared - please God! The letter from the hospital made me laugh because it says don't eat for 4 hours before scan and drink 1 pint of fluid 1 hour before - alcohol is not suitable! And there was me getting the vodka bottle out ready! Your post was funny too. I like your black humour. You will be on our minds tomorrow too.

Love too to Claire and Kelly with your chemos. Good idea, Kelly, to have a hols. to look forward to. Best wishes to Tina, Scaryfox, Debs and Margaret.Hope I've not missed anyone.

Love Sarahxx

sarah68
Member

Re: Triple negative secondaries/ recurrences

Just a short note to say "Hi" to everyone on this thread,

sarah68
Member

Re: Triple negative secondaries/ recurrences

Just a short note to say "Hi" to everyone on this thread,

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hi Girls
Rivka- I am sorry to hear what you are going through. I will be thinking abiout you and keeping everything cossed that your scan results are clear. Do let us know tomorrow how you are x
Claire glad to ear you are (sort of) back in the land of the living!! Hope your recovery progresses quickly and you are feeling better soon x
Sandra- sorry to hear you are having such a tough time at the moment 😞 The chest fluid sounds a complete nightmare and you sound really uncomfortable and fed up, which is sad. Really hope they can get you sorted and more comfy soon- there must be something they can do for you x
Kelly good to hear you are feeling a little better after a tough chemo. the Xmas holiday sounds like just what the dr ordered. x
Hi to everyone else- sarah, debs, scaryfox hope you are all feeling ok 🙂
Love Tina x

poppet75
Member

Re: Triple negative secondaries/ recurrences

Hello All,

Rivka I'll be most definitely thinking of you at your appointment.

I'm doing ok after my 1st Chemo,(errghh feel like I've been pulled back into a timewarp last Sept when I started my original chemo) slight nausea but mostly bone and stomach aches, pins and needles and constipation...crack open the prunes!! My central line is ok although the insertion sight on my neck does pull a little, but I'm hoping once the stitches are out it will settle down a little, got no choice really its in for 3 months!! I must say it took all the hassle out of having my bloods taken and I was in and out of the chemo chair in 40 mins so its worth it just for that.

Hope everyone is feeling as well as can be expected.

Claire x

lynvee
Member

Re: Triple negative secondaries/ recurrences

Hi Rivka,

Your last post had a big impact on me - you articulated your feelings so well. I for sure will be one of the faceless people thinking of you tomorrow. Sending you a big cuddle.

Lynn
x.

saj
Member

Re: Triple negative secondaries/ recurrences

Rivka, I will def be thinking of you on Monday, let us know how you get on?
Sandra x

LooLoo
Member

Re: Triple negative secondaries/ recurrences

All the best for tomorrow Rivka
LooLoo

Rivka
Member

Re: Triple negative secondaries/ recurrences

I was happy (in a sad way) to find this triple negative thread. I was fx in June 09 and told that it had spread to my spine in September after an MRI scan. This Monday I'm going to find out whether it has as the docs think spread to my lungs and liver. Being TN is odd I'm very impatient with older Bc cancer sufferers who talk about one lympth node being "involved" (always thought that's a strange euphamism as it makes it sound that a romantic entanglement!) and being hormone receptive as well. I want stand up and shout that I am the Manchester united to their sad tranmere rovers that I have 26 involved lympth nodes and a cancer as energetic as any 15 year old boy in search of vodka and girls. Despite this perverse pride I'm so frightened of the future and if I felt less I'll and grotty I would spend the whole day wailing and gnashing my teeth. Has anyone joined the tn trial for chemo options? Please keep on with your posts. The description of looking like an egg during chemo made me laugh out loud when I realised that was exactly how I looked after mine and it was great to discover other women had put on weight during chemo as I thought it was only me. Please think of me on Monday afternoon. I don't know any of you but I know that only you faceless people know what it's like to sit in the waiting room waiting for your scan results. Best wishes.

saj
Member

Re: Triple negative secondaries/ recurrences

Hi everyone,
Remember me?!!!!!
Warning......this is going to be a moaning post, sorry!!

I haven't posted much recently, not been feeling too good. Chest drain wasn't a success, apparently the fluid has thickened & is in pockets, a bit like a honeycomb. They drained 700cl, but then draining stopped,despite xray showing loads of fluid (& collapsed lung.)
My onc isn't keen on doing anything further at the mo, just wants to get on with chemo, with the hope this will improve the fluid situation.It's very uncomfortable, I can't lay down as I feel as though I can't breathe & the pressure around my chest is almost unbearable.Hence the reason I'm up at this time!
I don't think the chemo is doing anything so far,I had second one last Fri and am just recovering.I feel really fed up with it all, one long grind of feeling ill, uncomfortable, no sleep, etc. etc.
I'm going to see my gp next week to have a chat & ask for sleeping & happy pills!!

Kelly, so sorry you too have had it rough, try & keep positive (pot calling kettle?!!) and focus on that holiday.

Sarah, Fingers crossed for good news for you next week, please let us know how you get on.

S/fox, how did your onc app go? Glad to hear se's not too bad with abraxane & fingers crossed for avistan once you get started.

Tina, belated birthday wishes. How are you feeling ?

Claire, how are you feeling? I'm hoping se's are minimal and your line has settled.

Debs,Margaret,& anyone I've missed, hope you are all ok.

Sandra x

BaxterandNemo
Member

Re: Triple negative secondaries/ recurrences

Hi everyone
Had chemo last Thursday and have had it rough - starting to feel human again.

Spoke to my trial nurse - well cried to her - and she has suggested I get counselling. In Leicester there is Helen Webb House for such things. She also said she would get a Macmillan nurse to contact me.

Hope you are all OK - radiotherapy regimes seem very bad. When I had rads it was a piece of cake but I am suffering now with pain in the ribs - can't remember them telling me about damage 3 years down the line. Quite worried about rads on the neck though - what damage is that going to cause.

I have booked a holiday for just before Xmas - really really looking forward to it. I just hope I have enough strength to dodge the paint balls!!!! I am exhausted just walking up the stairs.

Thanks for the info Scareyfox - good luck for Tuesday.

Thinking of you all - as you say = lets have a good day today.
Love
Kelly x

sarah68
Member

Re: Triple negative secondaries/ recurrences

Hi everyone!

Glad to see a few more people back on this thread - I was starting to get a bit concerned! So pleased that your chemo. is kinder than your last horrendous exp. with taxol, Scaryfox. My son, who's nearly 12 and has a mild form of autism has always been one for the unflattering comments about how fat, ugly and generally egg-like I have looked this year! I know he doesn't mean harm, though, and is always upset when it's pointed out to him. Mostly I just laugh!

I know what you mean about the rads, Tina. I was travelling to Cardiff everyday through late Aug. to mid Sept. which is quite a way from Neath, where I live. I was knackered from the outset and had to conk out in bed for naps most days. Still, hope it's done the trick and hoping the same for you. I have my CT scan on Monday - what joy! Hopefully seeing my Onc. on Weds.

Love and best wishes too to Sandra - any news? Also, Claire, hope you're OK after chemo. and not feeling too sick or tired. Love to Margaret and Debs too.

All the best,

Sarahxx

scaryfox
Member

Re: Triple negative secondaries/ recurrences

Hi Tina and all!

Tina, sorry to hear rads are wearing you out... I think there is a special supplement you can take for this but can't remember! Will have a look on the penny brohn website, think I saw it there. I found after rads my main prob was upset tummy, but probiotics fixed that.

I had my second abraxane on Tuesday, avastin postponed again as although my face has healed well my neck and chest are still scabby. Side effects from abraxane much less severe than the taxol - have sore tingly hands and slightly dodgy tum, but no more pain and itching easing off gradually. Just hoping it all doesn't flare up again when I restart avastin next Tuesday! I have onc appointment tonight.

Oh and my hair kept landing in my lunch, so my husband shaved it off. My little boy said "mummy, you look like a big BOY now." not feeling at my most attractive to say the least!

Wishing everyone a good day. Keep us posted!

Scary (and I really do look scary now) x

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies
Just a quick post to seehow everyone is? All been a bit quiet on this thread 😉

Claire- didnt realise you were having a central line! Thought a picc was planned. Hope chemo went ok today thinking of you x

Scaryfox- how you feeling after the abraxan? Hope the s/e's havent been too bad and you are doing ok and less scabby now x

Sandra- how are you since the chest drain? Hope you are as well as can be x

Sarah- any news on your ct scan? Do keep us posted. Fingers crossed that its all good news and you have a chemo fee christmas (Im also praying for that!) x

Kelly how are you doing. Hope you are not too down following your scan results. Seems carboplatin isnt the wonder drug we all hoped it was but at least there was no progression. Chin up x

Margaret and debs- how are you two lovely ladies feeling? Good I hope x

Hi to anyone else Ive missed 🙂

Im a week into rads. Its prety full on travelling to clatterbridge every day and im feeling pretty crap if Im honest. Feel really exhauted by mid afternoon and have been to bed every day this week. Had a hectic birthday weekend though so that has probably contributed to my tiredness. Feel quite fuzzy headed so Im worrying a little (comes with the territory I guess) but my bcn has assured me that the rads will wipe me out especially having such a large area treated. The skin mets are quite nasty so Im so glad to be underway with treatment. Still hopeful that we'll get to canada as planned at christmas but Im trying not to think too far ahead. We've justre-booked my little boys christening for 5th dec (we cancelled it back in april coz of chemo)and even thats making me anxious as its nearly 6wks away. Not surprising really after the nightmare appointment with my onc a few weeks back...

Look forward to hearing how you are all doing 🙂

Love Tina xx

sarah68
Member

Re: Triple negative secondaries/ recurrences

Hi Claire,

Just sent you 1 then another PM. No record of them on my sent messages, so not sure where they are! Hope chemo. went OK today. I had a PICC line not central, so can't really help with your question.
All the best,

Sarahx

poppet75
Member

Re: Triple negative secondaries/ recurrences

Hi Sarah, the nasal cream is to reduce infection apparently, had the central line fitted today so feeling a little sore to say the least, hoping in a few days I will get used to it. One other thing I've had a MX and wondered if anyone had any experience of wearing a prothesis with the line in...is it ok? 1st chemo tom so will check with the hospital.

Lots of love to anyone starting 'back' on treatment.

Claire x

sarah68
Member

Re: Triple negative secondaries/ recurrences

Sorry, buggered up my post!

Hi to everyone,

Thanks to Debs for info.re:brca gene test - it's something I may need to look at in the future. However, reading post from Tina, I think, it seems to be limited to triple negs. and I'm actually weakly er+ and,I suppose,double neg the other ones, so I'm going down hormonal route still.
Saw my onc. yesterday and he says I will have have my ovaries closed down with rads soonish and then take another drug, Arimidex. Got my CT scan sooner than expected to check on effects of rads on lymph mets - next week or two - and then they'll take it from there. Obviously hoping there's not going to be chemo (capecitabine (?) before Christmas. Had max. dose of rads too Tina, so expect, if you are fair skinned, quite a lot of redness and pain. Still, it's worth it if it works!
Kelly, hope you are feeling more positive today - at least you didn't get any progression. Dianne, you seem like a wise and sensible woman! Also, Scary/Itchy/Scabbyfox, really hope the Abraxane does the trick this time. Best wishes to all,

Love Sarahxx
ps Claire, got your pm. I didn't have any prep. before my PICC was fitted- wonder what the nasal spray is for?

sarah68
Member

Re: Triple negative secondaries/ recurrences

Hi to everyone here,

margit
Member

Re: Triple negative secondaries/ recurrences

Hi all

Thanks for your continued support.

As to Counselling I suppose I am pretty lucky as in the grounds of the hospital i am being treated at (Mount Vernon Hospital - Northwood) is a unit called the Lynda Jackson Cancer Centre. They have so much info as well as services including complimentary therapies ie indian head massage, aromatherapy, reiki, and my favourite reflexology. In addition they have meditation sessions twice a week as well as counsellors. In addition being jewish I am fortunate to be able to use the facilities of Chai Lifeline. They have a number of branches around the country.

Debs I agree the hospice whilst being a wonderful facility is not somewhere I would wish to go at the present time (I may need it in the future - but not yet).

I believe there is another organisation called The Haven (they have two branches) which offer all the above services.

The two other places would be to speak to your GP - they could certainly organise a referral to a Counsellor or ask your Oncologist or Macmillan Nurse. I am sure somewhere you could get help.

Good luck and keep well to everyone.

Margaret xxx

Smiley275
Member

Re: Triple negative secondaries/ recurrences

Me again, Im so forgetful, I came on to leave a note for Sarah68 and forgot all about it! Sorry.

Sarah, I was going to have a private BRCA 1 and 2 test too, but when I went to Marsden last time the guy said he would try and get me onto a genetics research trial. Wasnt really sure what he meant even though I was nodding my head all the way through. Anyway I got sent the form re family history, we have a very small and unfortunately dysfunctional family where nobody tends to keep in touch so I had no idea whether anyone further afield has been affected, also we are very short on females. I filled in as much as I could but it wasnt much at all. Anyway yesterday a lady from the genetics research trial contacted me. The first thing they do is check BRCA status and then you remain on the genetics trial. She is sending me all the gunf so when I get it I will let you know as maybe thats an option you could look at to rule out BRCAs, might be barking up the wrong tree, but will see how it goes.

Debs x

Smiley275
Member

Re: Triple negative secondaries/ recurrences

Hi all

Havent been on for a little while so just wanted to say hello. No chemo today, everything too low and rather than defer they are going to omit this one. Strange really as was dreading going but then felt terribly disappointed when I couldnt have it, they cant win!

Welcome to the thread Scarylady, goes without saying wish you didnt have to join us.

Scaryfox, sounds like you're getting there, have been thinking of you and hope all continues to go well

Sandra, hope you;re feeling more comfortable and the chest drain went okay for you, again been thinking of you.

Good luck for today Tina and many, many happy return for tomorrow.

Margaret Im considering counselling too, havent had it before but as you said feel I need to vent somewhere exactly how Im feeling and try to get on top of my mounting fears, as Scaryfox says if you dont immedaitely click with them I guess you can always ask to switch. Where do you go to ask for support, ours is at the hospice which is taking some getting my head around as I always (wrongly) associate that with bad news.

Hello to Dianne, Claire and Kelly and anyone Ive missed, hope youa re all doing okay.

Debs xx

scaryfox
Member

Re: Triple negative secondaries/ recurrences

Hi everyone,

Still here and coping ok 2 days since my abraxane....

Kelly, abraxane is the chemo (alternative for those alergic to taxol) and avastin is a non- chemo drug, which works by starving tumours of a blood supply cos it stops new blood vessels forming. Problem with that is that it slows healing in the body in general, and can cause bleeding etc.

The pain in my chest is another tumour, which while it hasn't shrunk yet seems to have stopped causing pain... For the time being anyway. Lucky considering my allergy to morphine!

Margaret, no way are you a wimp having counselling, you are doing something brave and positive. I had counselling after both primary and secondary diagnosis, I thought it was offered to all cancer patients. Very useful provided you get a good counsellor, if you don't click with the one you get just ask to switch. Best of luck with everything...

Good luck Tina for today, hope everyone else is ok x

LizaRad
Member

Re: Triple negative secondaries/ recurrences

Hi,I just wanted to wish Tina all the best with her rads appointment today. xx

Jodie1
Member

Re: Triple negative secondaries/ recurrences

Hi Everybody, Scarylady, welcome to the forum, though sorry you've had to join us here. Don't worry about the abbreviations, half the time I don't know what they are either, but there is a place on this website where you can look at them, I can just never be bothered!!

Margaret, don't feel like a wimp because you're having counselling, whatever helps you - go for it. Hope you continue to feel well with no se's.

Kelly, hope you are feeling a bit better today, there will come a time for all of us when they give up because there's nothing left, but that could be years in the future, so try not to dwell on it and enjoy every day as if it's your last. That's what I try to do, I eat and drink whatever I want although I know there are lots of ladies who would probably give me a hard time over that. However, I truly believe that when your number's up there's nothing you can do about it so I intend to enjoy the rest of my life with whatever makes me happy. I totally refuse to let this horrible disease rule and ruin my life and when I get down, I think about something else!!!

Scaryfox, I hope you are still ok today and the se's haven't reared their ugly heads! Please let us know how you get on with it. Thinking of you.

Tina, hope the rads go well for you today and that you feel ok.

To everyone else, hope you are well and happy and have a pleasant and painfree day. Loads of love to you all, Dianne xxxxxxxxxxxxx

margit
Member

Re: Triple negative secondaries/ recurrences

Hi everyone

Scaryfox, I do hope you are able to cope with your new chemo without too many side effects. I am certainly thinking about you and everyone for that matter. For my part I feel a bit of a fraud. I am half way through second week (first cycle) of Capecitabine and so far so good - apart from a bit of nausea and tiredness I am coping well. I have decided to see a Counsellor as I feel I need to get my feelings out in the open - at the moment even though I am taking the chemo I feel this is happening to someone else. I really thought after four and half years this was all behind me. I don't want to burden my family and friends, my brother is a MS sufferer and his illness gets worse with stress. He has been so supportive by telephoning me every day - he lives 200 miles away so we don't get to see each other too often. My sister who does live near has been a real rock but her husband is in remission from Lymphoma so I really feel she has enough to contend with. This was my reason for the Counsellor. Has anyone else had counselling or am I the only wimp. If so, did it help.
Incidentally, I assume you all know that apart from October being Breast Awareness Month it has been decided to dedicate the 13th October to Secondary Breast Cancer Awareness Day. In fact watching Prime Minsters Questions today an MP asked the PM to have a meeting with the various charities with a view to making more people aware and also presumably to help with research.

Thinking of you all. Margaret xx

BaxterandNemo
Member

Re: Triple negative secondaries/ recurrences

Dear Scabyfox(!) and Diane - thanks for your thoughts. It is the unknown, the future that I am scared about. Just read a comment about a lady (2 ladies actually) where they've given up on them as there are no chemo options left for them.

Anyway, glad you are out of hospital and feeling a lot better, though scabby. Excuse my ignorance but was is Avastin if the Abraxane is the chemo. Is Avastin a pain killer, and did you find out what is causing the pain in your chest?

Hope everyone else OK. Speak soon.
Kellyx

poppet75
Member

Re: Triple negative secondaries/ recurrences

Hi Scardylady

FEC was the chemo regime I was on previously...pls dont ask me to spell it wouldn't know where to start. SE's are Side Effects. You'll pick up the lingo soon enough!!!!!

Scaryfox I'll be on 6 x 3 week cycles, hope it treats you kindly.

X

scardylady
Member

Re: Triple negative secondaries/ recurrences

Hi all of you, I'm early on so al of these abreviations are new to me! could you tell me what FEC's and SE's are please? avery new groupiex

scaryfox
Member

Re: Triple negative secondaries/ recurrences

Sure Claire, feeling OK at the mo, just tired (as usual!), but it's only been 24 hours. Next few days are most likely for SEs to hit I think. I'm having it weekly (for up to 12 weeks) but onc. suggested a CT scan around week 6 to see if it's actually doing anything!

poppet75
Member

Re: Triple negative secondaries/ recurrences

Hi Scaryfox

I'm starting on Abraxane next Wed 27th Oct, I'll be interested to read your experiences on it, I've had FEC last year/early this year but have heard the SE's are not as bad.

Claire x

scaryfox
Member

Re: Triple negative secondaries/ recurrences

Thanks Dianne! Yes I think Abraxane is quite new. My chemo nurse had never administered it before. My oncologist had to make a special request to my insurance company because I was allergic to Taxol, as it's a lot more expensive - luckily they agreed, though I'm sure it goes over my £ limit. It's supposedly the same/similar active drug as Taxol, but disolved in a human protein rather than a solvent so that it's easier tolerated. I'll keep you posted re side effects over next few days!

SFx

Jodie1
Member

Re: Triple negative secondaries/ recurrences

Hi Scaryfox, we must have been posting at the same time. Pleased you are out of hospital, sorry you're a bit scabby!!!! Hope the Abraxane is ok for you and you don't get any se's. I haven't heard of that one before, is it a new drug?

Take care of yourself and have a lovely day. Loads of love, Dianne x x x

scaryfox
Member

Re: Triple negative secondaries/ recurrences

Hi all, thanks for your supportive words again!

Sorry to hear that Kelly, it seems carboplatin is not very strong, I got taken off it cos it wasn't doing enough. I guess it was too much to hope for with such minimal side effects! Sorry about your mum too, sounds like you have lots on your plate.

Tina - pleased for you - hope rads do the trick!

I finally got out of hospital Sunday, itching calmed down a bit though I am still very sore and covered in scabby bits! They gave me my first Abraxane (as alternative to Taxol) yesterday but postponed the Avastin till next week to give my skin more time to heal. Abraxane was so quick, tiny little bag, only 30 mins, I think the 'flush' took longer! I am now nervously waiting for side-effects/praying I don't have an allergy to this as well...

Bestfriend, glad to be of help! Bet your friend really appreciates your support.

Hope everyone doing OK today...

Scary/scabby-fox

Jodie1
Member

Re: Triple negative secondaries/ recurrences

Hi Everyone, Kelly so sorry to hear your scan results aren't so good. That happened to me when I was on the taxotere, they didn't grow, but they didn't shrink much either so the onc stopped it and put me on Arimidex daily and they are much better, my liver function has improved enormously so don't be too down, there are lots of things they can do. Have a glass of vino with me instead.

Tina, thank goodness they're starting the rads tomorrow. Good luck, I'll be thinking of you. At least it's over quickly unlike the chemo. I'll be thinking of you.

Scaryfox, Sandra and Sarah, hope you are all well today. Hope I haven't missed anyone out. Take good care of yourselves everyone, loads of love, Dianne x x x

BaxterandNemo
Member

Re: Triple negative secondaries/ recurrences

Hi everyone. Hope you are all well. Glass of wine sounds good Diane - but have had speckled hen instead!!

Scareyfox - hope you are feeling better. Sarah how was the pizza. Hope the doo was good Sandra - not too exhausting. Good news on the rads and did you have a good birthday Tina?

Had my CT scan results today. A little upsetting. Maybe I am expecting too much. Onc is happy to continue with the chemo (carbo) as the lumph nodes are not growing, but they have not shrunk. However, you can feel that some have even though it doesn't show on the scan. The nodes seem to swell during the second week?? Don't know why.

I was hoping for shrinkage - can't bear the thought of doing chemo/this regime for the rest of my life. But, I need to wait and see what happens after a few more cycles. But, like the onc said, they do not know whether the cancer will start to grow as soon as the chemo finishes. I was hoping for a few years respite!!! I can't see a clear future at the moment - how it is going to affect everything. It is so hard not being able to talk to anyone without crying - so you don't talk. Pretty crap really.

Anyway - let's be positive - I am not going to give in - the little cancer cell b***ers can go to hell.

Let's go have another speckled hen and a packet of crisps.

Speak to you all soon - a little busy as well sorting out my mums house as she has just gone into a care home (Alzheimers).

Love Kelly xxx

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hi ladies hope everyone is feeling ok?
Just letting you know that I am FINALLY starting rads on thursday. So relieved coz the skin mets have really flared up the last few days so my anxiety levels have been through the roof waiting to get started. Im doing 3 weeks then a week and a half of boosters. Im having the maximum dose apparently so Im keeping everything crossed it does the trick.
Speak soon
Tina xx

Jodie1
Member

Re: Triple negative secondaries/ recurrences

Hi Everyone, lovely to see all the posts, Tina, thanks for your kind words, I'm so sorry you're having such a hard time, I'm thinking of you. Scary/Itchyfox - take care of yourself hon, great that you can manage to laugh about it - god knows we need all the humour we can get.

Sandra and Sarah,thinking of you both and hoping all is well today.

Hope everyone has had a good weekend, mine was good (although dry because of the antibiotics)!! However, they've now finished, so roll on this evening when I can have a glass of wine with dinner.

Take good care of yourselves everyone, lotsa love to you all. Dianne x x x

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hi ladies
bestfriend- what a lovely friend you are 🙂 hope your friend is ok + the surgery is successful for her. I'm having a nightmare time with skin mets so know what she's going through. Let ius know how she gets on x
sandra hope you are having a fab time tonight + best of luck for the chest drain tomorrow. Hope it goes smoothly + doesn't hurt too much x
scaryfox hope you are on the mend + are home from hospital? X
Sarah sorry I misundestood your post about the rads + ct scan doesn't take much to confuse me these days lol! The parp inhibitors are being trialled on triple negs but only those with brca1or2 can access the trials currently. This is why I'm paying to be tested. Parps have been found to be very promising thus far in trials so I want to know now if I have the gene defect so I can access the trial if+ when I have further spread. Hope you've had a nice weekend x
dianne, deb + anyone else I've mssed- hope you are well + have enjoyed your weekends x
love tina x

bestfriend
Member

Re: Triple negative secondaries/ recurrences

Hello Gingerbud, Scaryfox,
My best friend of 30 years has been battling triple neg bc for nearly 3 years, mx right side then two years later skin mets on the scar. now chemo and waiting for a second op on the scar site as skin mets doesnt go.... she won't come online, too scared of what she might read. I just wanted to say how much your posts have helped me to support her, thank you for sharing your experiences with those who need, you guys are amazing xxxxxxxxxxxxxxxxxxx

sarah68
Member

Re: Triple negative secondaries/ recurrences

Hi Scary (currently Itchy!)Fox and Sandra,(and Tina!)

I'm so sorry you have found yourself in another unpleasant situation SF - don't give up! I've heard that Abraxane is very good, comparable if not better than Taxol, but without the SEs and a much shorter infusion time. Good luck with everything on Tuesday.

Sandra, I don't envy you having a chest drain, but maybe it won't be so bad. The oncs (usually) know what's what, so it's good news that she thinks your chemo. is working on your lumps. Hope you have a good time with your friends tomorrow. It's my Mum's birthday, so we're going out for a pizza (nice to break my diet!), but my son nearly 12) wants to go first to the Museum where Titan the BB robot is appearing(can't wait! ha ha!). Love to you all

Sarahxx

PS Tina genetic testing thing sounds interesting, though a bit expensive for me. I'm adopted and have no idea of my biological family. Is it just for triple negs? - I'm actually weakly er+ and neg. others, but I came on here because some of you seemed to have similar experiences to me. I have regional recurrances and neither primary nor truly secondary - not too many of us around! Had my rads already- finished a month ago- pretty painful after-effects but a lot better now. Having CT scan in a month.Pleased about your results, Tina.

saj
Member

Re: Triple negative secondaries/ recurrences

Morning!
Itchyfox, I like it, but hope Scareyfox is back soon! What a relief the abraxane has been approved....and fairly quickly too.Don't you think it's odd that the solvent is known to cause allergic reactions yet they continue to use it? I hope your symptoms are easing, thinking of you.

Tina, I'm not too bad thanks. I'm going in hospital Monday for chest drain, oh how I'm looking forward to it!!!!!!!! My next chemo is on Friday so should all be done in good time for that. Saw my onc yesterday and she seemed to think the hard lumps in my breast have softened, which is good news, although I'm not so sure they have, but hey I'll take any positive news that's on offer. She has also changed meds with chemo as I was sick and nauseous last time.I'll wish you a Happy Birthday for Fri in case I'm not home in time to do it.......also crossing fingers & toes re rads.

I'm going to a "do" on Sunday with OH & friends, looking forward to it. Should be interesting because there will be people there that haven't seen the new me.......with short grey hair instead of a chestnut bob!!! Perhaps I'll take my camera!

Wishing you all as good a weekend as is poss, Love Sandra x