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Triple negative secondaries/ recurrences

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Re: Triple negative secondaries/ recurrences

just a very quickie before i go to sleep....

sorry iv not been around iv been mega tired think all the treatment has been catching up with me.....

anyway found this news about avastin getting funded for TNBC mets with paclixael in london not sure what that means for those outside london but its def a step in the right direction......
http://www.pharmiweb.com/pressreleases/pressrel.asp?ROW_ID=57034

Tina neither myself or lou went to her funeral but louise went to her remembrance service. i was thinking about rhian and just hoped all went well.... there are some lovely family tributes and photos on her fb page.

hopefully will be back on at a sensible time and read all the posts nd catch up.

lxxx

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Re: Triple negative secondaries/ recurrences

Hi all
a quickie from me as I've been sick as a dog pressumably from the bone meds I started this wk 😞 Just read all the good news on here + had to post coz it's such a refreshing change :)))))
Sadie- so so happy 4u! I'd looked into this trial but being just 34 I am exempt. Hope all goes to plan + it works wonders 4a long time x
Sandra- wow! Fantastic news that the avastin alone is still doing the trick. When I read of ur success on it, it makes me want to give it a shot despite all my team discouraging me. So pleased 4u x
zile- great to hear ur home + more importantly, you're well 🙂 Thanks 4the pm's, just read them + will be in touch over w/e when feeling a bit better x
lulu and lou, did you hear how rhians funeral went on thurs? Was thinking of her. Lou- hope ur on the mend x
Jo, laura, lavender, wellmeant (+ ur wife) + any1 else, hope u all ok x
speak later xx

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Re: Triple negative secondaries/ recurrences

Hi lovely ladies,

I posted on this thread several weeks ago when my brain mets were discovered and then after I disappeared for a few weeks. Tina, thanks for your message. The only reason why I haven't been posting is because I went to Croatia for a couple of weeks (I am from Croatia and have got loads of friends and family there but haven't been there for a year, since my diagnosis) and decided not to read anything BC related. Hope you understand. When we got back we went away to New Forest for the Easter weekend... and the time just flies... too many things to do, especially with two small children, and too many people to catch up with.

Tonight I decided to catch up on this thread and was shocked to read so many bad news. Even though I personally don't know any of you I symphatise with every one of you. Sorry for not naming you individually, but I do send you all my love.

A quick update from me - after I finished the wbrt I started on Capecitabine the week after and then three days later I flew to Croatia. I was a bit scared of the SEs especially as I was going away, but I thought I would risk it after my onc said it is better to plan the trip around Easter than leave it for the summer! I have to say, I really needed a break and I needed to go - just seeing all my family and friends I grew up with gave me so much hope and strength that I haven't felt better since my original diagnosis nearly a year ago. I feel so well, no pain, full of energy and the symptoms that I had from the brain mets are all easing off. I guess the Cap is doing its job too, well I hope. I do feel positive and I am already planning my next visit to Crioatia in June, this time with my husband. Well, I have to say that in the last week I had a bit less energy and have been more tired.

WBRT was OK and I think I didn't feel any SEs until now - as I am starting to feel more tired. I started Cap and Lapatinib so soon after wbrt (am about to finish 2nd cycle) so it is difficult to know what is really causing it. I also feel nausea sometimes, but I find that it goes away if a snack regularly. I am not taking anything for it. My hands are very dry but feet are ok for now. I got a really bad diarrhea during my first cycle in the "pill free week" which lasted for the whole week despite the medication. I hope it won't happen again.
Someone mentioned ulcers - I had one and it was horrible, but now I brush my teeth after every meal and use mouthwash (with no alcohol) and things seems to be better.

My hair is falling out (well, almost all of it is already gone), but I shaved my head as soon as it started and felt so good afterwards. I even like myself with no hair (well, as long as my eyebrows stay!). The only problem I have is itchy head and the skin on my forehead and back of the neck feel burnt. I am guessing that is due to the radiotherapy.

Saw onc last week, but not my usual one. Will have scans after the 3rd cycle, so some time in May. Waiting for the appt. I really do hope they bring some good news and that this chemo is working. Despite feeling ok, no treatment has really worked for me since this whole cancer thing started last year. As you all know, and I do agree, this disease is so unpredictable and sneaky! And horrible!

Anyway, enough from me. Hope things are getting better for all of you...

Love to you all,

Zeljka x

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Re: Triple negative secondaries/ recurrences

Hiya ladies

Sadie. That's bril news, so pleased for you, any SE s with that. Would like to know more about it, tell us more. When do you start. X
Tina. Glad your doing ok after chemo this wk. have a grt time in Disneyland , sounds bril.x
Jo Laura Tara. Hope yr doing ok today, and not in too much pain. Enjoy yr w/e. x
Had my scan results on weds and all good, WhayHay, avastin seems to be keeping everything at bay. Had chemo again then thurs.
Hi to lulu, lav lass, Sarah , well meant

Hugs to all
Sandra xx

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Re: Triple negative secondaries/ recurrences

Hi - me again!!!

Tara, i just asked my onc for a referal to the Marsden and mentioned Androgen Receptors, at the time i knew nothing more!! May be worth asking!

Jo / hope - thats exciting the results are so positive. Im sorry you were negative for the receptor though. Xx Xx

Laura - IF i get on it (see below) nd scans show its working i can stay on it as long as its needed.

However............ the trial Dr. phoned and the criteria is 'over 45' - im 45 in 3 1/2 months so the Dr has asked Cancer Research for me to be a special case. Will hear next week but i get the feeling this is not going to be as straight forward as i would like. About 25-33% of tnbc have this receptor, so if you are over 45 and post menopausal, may be worth getting tested (or even if you dont exactly fit the criteria, like me, still may be worth it!!)

Hugs to all nd without this site i would never have heard of Androgen Receptors, so a massive thx to BCC nd whoever mentioned it!!

Sadie Xx Xx

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Re: Triple negative secondaries/ recurrences

Sadie - That's brilliant!!! Let us know more. So pleased for you. I guess I should ask my onc about it, but don't know enough to ask! Good for you! After all the pain issues recently it is great that you have this new path opened up.
Tina - Glad the liver enzyme thing hasn't held up your treatment. And great that the trip to Disney is going ahead. What fun for you all. Keep as well as possible and mind the horses!
Laura, Jo, Lulu, Sandra, Wellmeant and anyone else I've forgotten or is lurking - Hope you are all keeping ok and have a lovely weekend.

Love and hugs to all.

Tara xxxx

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Re: Triple negative secondaries/ recurrences

Sadie that's gd most of us tn girls don't have it so you must be very luck glad no chemo for u is it a trial how long you on it for

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Re: Triple negative secondaries/ recurrences

Dear sadie
I'm so pleased for you as they were telling me how promising their results were when I was there.
I had a feeling you would be positive as figured one of us had to be and so far nobody has been.
Sounds much better than capecitabine for side effects.
Hope you can start soon
Love Jo x

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Re: Triple negative secondaries/ recurrences

Hi- just heard from the Prof at the Marsden that ive GOT the Androgen Receptor!!!!!! So, if my hormone levels show Im post menopausal i can start the Abiaterone (??spelling) trial rather than the chemo! Im very very excited. Hes had some really good results! Minimal SE!! Fingers v v v crossed that i can get on the trial - the co ordinator is phoning me to discuss further tests!! Woop woop!! So, pleased.

Hugs to all,

Sadie Xx Xx

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Re: Triple negative secondaries/ recurrences

Hello lovely ladies
hope everyone is doing ok. Just a quick post to check in + say hi as I've had a busy week. Hav been lurking as ever, just haven't posted.
Saw onc Tuesday she was really pleased to see how much I'd improved especially in terms of s.o.b. + pain issues. I was given more xeloda to start weds morn + had my 1st iv bone infusion. Thankfully I seem to have escaped the nasty fluey s.e's (yay) but have felt pretty tired. My sleep is so up+ down, been awake since b4 3am so will be wiped later. My bloods were ok except for one liver enzyme which had virtually doubled. Worrying thing is the nurses hadn't even noticed- it was only picked up on coz I asked specifically about my liver function compared to last bloods as I like to keep an eye on it. I also wanted to be fully in the know before booking our trip to eurodisney. Thankfully, onc was called + she's happy to monitor it without reducing my dose. Nurses reassured me it's likely to be an affect of the cape rather than indicating things are going crazy in my liver. Fingers crossed...
So onc happy for me to travel so we have booked our no expenses spared trip to Disneyland 🙂 we go thurs lunchtime til Sunday night+ were all really excited. I will have to take it easy but as we are staying on the parks, I canscedule regular rests etc. We also have 4days of park tickets so plenty of time + so can take it easy (crammed it into 2days last time). I'm just praying I stay well in the meantime + my feet don't flare up. My hands are pretty dry + getting a bit sore but so far so good with the feet.
Off the caravan this aft. It is total bedlam by ours as I live backing onto aintree racecourse. Today + tmoro are the big days so I'm getting out the way with my mum + dan. Hubby has been torn over whetger to go to wembly or tge races (had tickets through work for both) but he's decided to go the national tomorrow + he'll go bak2 wembly for the final if Liverpool win tomorrow.
Will catch up with everyone over the w/e
lots of love xxx

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Re: Triple negative secondaries/ recurrences

laura64 says on 12 Apr 2012 21:29
Hi all Tara I'm ok a few belly cramps tonight but still doing ok kp up with the water I'm sure it helps me I'm surprised the onc sd that as mine told me most of us get on ok weird how they all dif sadie hope u get on ok u never know we cld be the lucky ones se wise not that I want my other ladies to suffer jo hope y feeling ok Tina hope y ok how did eyebrows go did you get anywhere mine have grown but can't shape them now weird for sum reason hi to eveyone else off to bed with hot water bottle hopefully ease my belly love hugs to u all Laura xx

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Re: Triple negative secondaries/ recurrences

Hi Everyone - A quiet thread! I hope it is cos everyone is still eating Easter chocolate!!??

Tara - So glad Cap is suiting you! And the SLT is a bit more pro active! Enjoy your poems and take care!

Laura - Sounds like another one that Cap is suiting!! I think your idea of lots of drinking (water!!!) to help the chemo in the system is a really good one - I will be doing the same! Thx for the tip! Hugs.

Hope / Jo - I soooooooo hope you are Ok for your break! You really deserve it and precious time with all the kids. And I hope they get the dose right for you very very soon! It is so unscientific all this 'try it and see!! Gentle hugs and lots of fingers crossed for you and Centre Parks.

Tina - Hows your hair? Is it falling out cos of the wbr or Cap? Or the previous chemo? I hope you look tremendous in your wig? Coming off the steroids will be a tough one! Hope you are through the worst? Only a week till Disney (hope you got my pm about the rooms and park early opening?) Hugs.

Sandra - Thx foir your hugs and hope you are Ok at the mo?

Wellmeant - I felt much better after a second oppinion and my Onc was more than happy with it. They also have acess to Trials that may be of interest at the Marsden. My GP referred me and they saw me very quickly. Hope you and your wife are OK. Xx

LuLu - Thx for your good wishes and support! Hope your cold is better?

Linda - Nice to hear form you and all sounds positive!!

Lav Lassie - Hi!! You Ok?? Hugs.

Hugs and thoughts to everyone else!

Im slowly getting my head (sort of!!) around starting chemo again on Monday. I will be joining the Capcitabane Crew! The dedicated thread has been of great help in knowing what to prepare for - but the se seem to vary so much from 'hell' to 'not much at all'!! I hope I join the latter ladies! Im also waiting fro my Androgen Receptor tests from the Marsden - they have rushed them through as IF i am positive it may give me an option to chemo.......we will just have to see! Thankfully the Hospice have come to my rescue about pain management and im on some magic Gabipanten!!! My back is now a strong ache rather than a pain and I can do things - like sit and walk!! Woop woop. I am seeing my spinal team next Friday. My Onc seems to think it is a tumour that the scans have not detected (MRI and CT clear on my spine!) and will need radiotherapy. But, we are still not clear what is causing the pain!
So....we are heading to Dartmouth for a few days early tomorrow morning to see an old school friend (Monty Halls - presents ocean wildlife progs on BBC2). Will be fun! Then back and on with chemo number 31!!

Hugs and friendship to you all,

Sadie Xx Xx

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Re: Triple negative secondaries/ recurrences

Hey everyone
How are you today?

Tina - Sorry you had to leave early from your Easter break but at least you got away from those noisy neighbours. How is round 2 going?
Jo - You sound to be having a rough time with the Cap. Are the ulcers settling down now? I hope you have Nystatin and so on to help with this.
Sadie - How did your appointment go yesterday? Are you starting Cap too?
Laura - How are you now? Hope you are coping with side effects.
Everyone else - how's tricks? Been quiet on here for a couple of days.

I wanted to tell you that I had a positive appointment with my onc. My spine and bone scans are pretty stable and she is happy with how things are so far on the Cap. Only the first round so we shall see. She said some people do have a terrible time on it, but that so far I seem to be lucky.
I also got my SLT to be a bit more responsive this time and I now have thickener for drinks. I had a couple of
rather frightening choking episodes and as I can't now cough properly I really needed to get some.

I just realised that at 56 I must be the "granny" on this thread... As I write I'm still in bed, as usual at this time. My better half is singing away in the sitting room "Simple Twist of Fate". I've been enjoying my new copy of a great modern poetry anthology Staying Alive. Some real bitter sweet poems.

Thinking of you all often. Take good care.

Tara xxxxxx

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Re: Triple negative secondaries/ recurrences

Hi jo sorry you cldnt have cap but once they get dose right you been fine I hope you pick up sn and can have your break you need a rest tc Laura hi to all hope y ok x

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Re: Triple negative secondaries/ recurrences

Hi
Went for third cycle cap today but couldn't have. They looked at my ulcerated mouth and I've still got nasty cough from chest infection (2 weeks and 2 courses antibiotics later). I was relieved but scared to be off another two weeks too. I also couldn't have avastin with chest. We are hoping to go to center oaks next week so pray I have 5 days of feeling well and all 4 kids have a good time. Pain or sickness has spoiled last 2 family breaks.
Hope you get to euro disney Tina. Hope cap kinder to both sadie and you. Am told dose dependant so think they just need to get right dose for each of us. Hope scan positive Sandra.
Hope everyone else okay
Love jo x

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Re: Triple negative secondaries/ recurrences

Hi all
hope everyone has managed to enjoy some quality family time this Easter w/e, despite our struggles. I also hope you've all had plenty of chocs+ treats (for medicinal purposes naturally lol).
We went the caravan Thursday night after a hectic day. I felt great, better than I had in ages + so overdid it at home, then had wig fitting appt then went 2a nearby designer outlet + walked round there for an hour or so, then went to tgi Fridays for tea. Needless to say I was on my knees by bedtime + have felt lousy since 😞 had a bad night Saturday, upset tum + so exhausted. Legs like lead + back aching. Think my sciatica is playing up too- just in case the spine mets aren't giving me enough jib!! came home yesterday morn as I didn't have full range of meds with me. Anyway, seem to feel a bi. Better today despite waking shortly after 4 but I'm staying home + will just potter + do a few jobs round the house as I'm back in hosp tomorrow to see onc. She will prob start me on cycle 2 tomorrow which will be a day early (cycle 1 was delayed by overnight hosp stay). I'm assuming my bloods will be ok fingers x'd. Got 1st zolodronic acid infusion, dreading it coz already weaning off steroids + if onc agrees I can stop this week, I'm expecting a huuuuuge steroid crash. I used to near collapse after 4 days on steroids so god help me after 6 bloody weeks!
Been looking into eurodisney for dans bday + we are hoping to go a week Friday, all being well tomorrow. Will book later in week if so. As this will be such a special trip for us + as I'm struggling to get around a bit with the s.o.b prob, we've decided to go all out, no expenses spared and stay at the official Disneyland hotel which is actually situated on the theme parks. It's 5* and pricey but we can be back at the hotel within 5mins + so can schedule loads of rests through the day. I can also go back at any time if feeling rough + dan can quickly go back with his dad. The characters are around several times a day + the best bit is hotel guests get exclusive access to both parks for an extra 2hrs per day! So between 6am + 8am we can blitz the most popular shows+ rides whilst it's empty! I will also be asking my mac nurse for a letter re my condition to get fast track passes hopefully. Can you tell I'm excited?! Just praying all is well in the next week or so as we are desperate to go + have a wonderful time. God knows we deserve it after the last couple of hellish months...

Hope everyone is ok anyway, catch up later xxx

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Re: Triple negative secondaries/ recurrences

Hi ladies

Sadie, so sorry to hear yr news of scans, hope yr new chemo kicks in quickly, and yr out of pain. Hugs

Happy Easter to all, n enjoy yr choccy eggs

Hugs Sandra. Xxxx

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Re: Triple negative secondaries/ recurrences

Happy Easter everyone from the valleys. xxxx
Have a restful and enjoyable time. xxx

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Re: Triple negative secondaries/ recurrences

Yum Yum........i like chocolate!!!

Happy Easter to you all - special people!

Love and hugs

Sadie Xx Xx

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Re: Triple negative secondaries/ recurrences

Happy Easter everyone enjoy your choccy xx

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Re: Triple negative secondaries/ recurrences

Thanks Lulu34 Our Oncologist is very honest and direct, there are several respected oncologist at Castle hill all are part of a team and as i understand it every case is discussed with the whole team no matter who your Oncolgist is. Ours did get funding for us with the Avastin and my wife's treatment has always been on an open, honest and negotiated basis with her.

But a second opinion cannot do any harm as our backs are close to the wall.

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Aww Tina I know what u mean I've students next door to me who feel the need to smoke talk drink in the garden at 3 am what is wrong with these plp make sure you sort them out today come on dan where is your whistle lol grr glad y picking up a bit just try rest up for a few days my belly plays up on tabs to feel bit more tired this cycle to feet are a little redder ,lulu take it easy hun you been through so much your body needs to catch up a bit enjoy them eggs, sadie hope y feeling a bit more positive today enjoy the weekend hi to all other ladies hope y ok and a happy Easter to you all big hugs xx Laura

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Hi lulu
sorry you are feeling crap at the mo. You have been through the mill recently (and then some) so it will take some time to recover. I remember my rads to chest wall at end of 2010 my god I was wiped out for weeks and I hadn't done a intensive chemo regime right beforehand. Be kind to yourself, get plenty of r+r and free flowing chocolate is bound to help...medicinal purposes only tho lol 😉
you have also had yet another loss of a close friend- these things all take their toll. You rest up + take care xx

I've had a pants day, totally overdid it Thursday coz felt great but didn't sleep thurs night so spent most of yesterday in bed (awake but resting). Legs felt like lead + back really sore. Up + about 4a few hours last night + felt brighter but still wacked. Forgot 2bring my thermometer the caravan so hoping it's nothin serious but tum feels a bit off so might send hub out in the morn for a cheap therm just 2b sure as dan has been full of cold + a bad cough for several days now.
Got a caravan sited by us who are inconsiderate pi**heads to put it frankly + they've been on form tonight hence me having another rubbish kip. Still up + awake makin loads of noise now so will be knocking nice + early, in my bandana to warn them we won't take any more. I'm sure they've got a day in bed planned but I'll ruin that. We can't just sleep all day coz of dan + wev spoken to them several times about it over the years. They seem ok people but they go out, get bladdered, wake us all just getting back to their van then they sit up all night talkin really loud, singing + often like tonight arguing at the top of their voices. As it gets warmer it gets noisier as they do all this with all the windows open. Grrrr rant over!
Hope everyone has a good w/e. Sadie hope you are ok do post + let us know when u can xx

love to all, Tina xx

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Re: Triple negative secondaries/ recurrences

Sadie so sorry to hear your scan results were pants.... I'm so disappointed that your chemo free interval has been cut short so dramatically..... Hope you find the xeloda as tolerable and effective as the others have.

well meant sorry to hear your wife's doc thought to ask if she wanted to continue with chemo.... I really don't think that's very appropriate after only 2 regimes unless she was saying she didn't think she could cope.... But there are loads of options.... Would def agree to try the marsden.... Even centres of excellent have some less than excellent docs, so you could even ask if you can see a diff doc at queens centre.

Tina I'm really really pleased things are getting a bit easier for you just now that's great news.... Hope you have a fab time in Disney.

Iv had a bad cold the last few days so been feeling a bit naff but think its starting to shift.... Just in time to eat choccie eggs.

Sending much love to all you ladies and wishing you all a happy Easter.

Love lulu xxxx

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Re: Triple negative secondaries/ recurrences

Hi well meant I'm being treated at the royal Marsden and wld recommend it to anyone it might be worth a try see what they say my gp referred me you will see a prof then he will explain what he thinks best but like you sd u are already being treated at one of them hos so you might not think its worth it let us know how you get on laura

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Re: Triple negative secondaries/ recurrences

Thanks Gingerbud. We have built up a good relationship with our Oncologist she is straight dowm the line and very honest that being said my wife is my priority and when a our backs are almost up against the wall we have nothing to loose in gaining another opinion.

I am going to have a chat with our Macmillan nurse and a private chat with the Oncoloist. We are at a centre of Excellence The Queen's Centre for Oncology and Haematology but maybe Royal Marsden would be worth a try.

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Re: Triple negative secondaries/ recurrences

Wahey! We have some good news at last, with Tina having her Q of L improving so much, hope onc agrees and that Disney treat goes ahead.
And, as ever, general sharing of info and hope and love,
Happy Easter everyone

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Re: Triple negative secondaries/ recurrences

Hello to Gingerbud, Sadie and all the TN ladies who've been having such a tough tough time recently. My heart goes out to you as you struggle with the recent losses here and your own particular nightmares....
Hoping you can enjoy a peaceful weekend with your folks and the minimum of side effects. I hope those extra chocolate treats are bearable whilst some of you face even more chemo trials....

Bestest hugs to you all.
Welsh girl xx

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Re: Triple negative secondaries/ recurrences

Hi wellmeant
sounds like there are liads of options left if she's only had 2 courses of chemo. I'm not a dr but have dun my research, had several 2nd opinions, swapped oncs etc and am still here 18m after being given a 3-6m prognosis so it's defo worth being ur own advocate.
I would say push for a platinum based chemo like carboplatin, maybe in combo with gemzar if ur wife is well enough. Carbo alone is kinder + can be very very effective. I had 6mths off treatment after a 6cycle course! And sadie had fabulous results. There are other TN ladies on here like laura who have also had carbo with other chemos with great results too. I found s.e's to be minimal, hair grew back great, it was mainly a few days of fatigue + the usual bowel issues which I think are par of the course.
Would u consider going the marsden to see one of the top consultants there? It can be done through nhs within about a fortnight. I'm pretty sure carboplatin would be there suggestion, or maybe eribulin (halaven) which requires special funding (and was disasterous for me, sadly).
Hope that helps, give your wife our love + hope they get her pain meds sorted soon x

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Re: Triple negative secondaries/ recurrences

Gingerbud here is her treatment so far she was diagnosed with primaries and secondaries all in one go surgery has not been possible.

Feb 2011 Epirubicin and Cyclophosphomide every 3 weeks 6 cycles then radiotherapy 16 treatments, Started Avastin and Taxel on 10th Feb 12 every week for 3 weeks then week off treatment stopped this week after complicatiomns and scan results as it is not working.

They have suggest she may start problems with her right arm I presume lymphoadema? I did have a private chat with the oncologist and she was glad we had said yes as there are a few things still in the bag to try.

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Re: Triple negative secondaries/ recurrences

Hi everyone
hope everyone is doin ok + has something nice planned for the bank hol wkend? We've come to our caravan last night, forecast not great but we might as well lounge around here than at home. We have central heating in our van so at least we won't freeeze lol!
Sadie I was so sad to read you've had rubbish results and are clearly very down about it. We are all right here behind you, sending love + strength. The xeloda will be a breeze after the regimes you have done honestly! And whilst it's too early 2scan me just yet, I feel somethin positive is happening after just a fortnight of tabs. I literally felt like my number was up a few weeks ago but have turned a real corner + my Q of L has quadrupled. Do let us know how you are when you're up to it (((hugs))) xx
Linda :)))) So good to hear from you and even better to hear you are doing so well! Fab news about the breast surgery hope it's a breeze + all goes well 4u. Have a great weekend away + keep in touch even if u just drop in from time to time. We love to hear that our cyber friends are doing well xx
jo- poor you I can't believe it's one s/e after another please chemo give this girl a freaking break!!! Hope the chest inf clears up soon + the mouth sores 😞 Ive never suffered with ulcers etc on any chemo (*touches wood*) but think it's fairly common but nasty. My hands are defo drier + a bit sore but feet unchanged so far. Must start creaming feet tho I've been lazy so far. Enjoy Easter weekend with the kids if you can xx
wellmeant- so sorry to hear your wife has had further progression + the dreaded suggestion has been put forward (stopping treatment). But, so glad u are not giving up. What chemos has she had so far? Maybe we could help with suggestions based on our experiences but I agree with everyone, there are lots of chemos + we are all different + whilst one can be a disaster, another may work wonders. Hopefully pain will get under control fast + a new treatment plan will be in place before u know it x
tara- enjoy your weekend hope you do get a bit of a rest (and lots of choc!). Hope the long wait for scan results passes quickly + the news is good. We are long overdue some pos news on here xx
laura- hope ur good + still rocking it on the xeloda:) I'm sure you have lots of fun stuff planned for this w/e so enjoy xx
hi to lavender, Sarah, lulu, sandra + anyone else reading. Happy Easter to you all xx

I'm doing good hard to believe after last month- but loads of improvements. Even slept through for 6hrs (!!!) on weds night couldn't quite believe it as I've had about 2-3hrs per night since brain dx + steroids. Overdid it a bit yesterday tho as I do when feeling good. Did loads in the house, spent ages packing up for the w/e, then had wig fittings (bought 2!) then we went to a nearby designer outlet then for tea b4 coming the van. My poor back was in bulk last night + still awake at 2.30. Think I'll have a lazy day today + we will plan something for tmoro. I see my onc tues + will hopefully get go ahead for cycle 2 + 1st bone infusion which I'm really not looking forwad to. All being well+ if she agrees I'm good to go, we are going to book eurodisney for the next wkend (20th I think). We will fly to make it less tiring + we are going to stay at the Disney palace which is right on the parks so we can come + go throughout the day + schedule lots of rests in. Staying there also gives an extra 2hrs in the park per morning before anyone else so we can cram loads in then + take it easy the rest of the day. We are hoping to do 3 days at the parks this time not 2- again so we can spread things out + take it easy. Hoping + praying I continue to improve + onc agrees. I think she will as she should see a real improvent since last time we met. Have told dan + he's super excited + really looking forward to his birthday treat so please body, don't let me down!!
Love to everyone
tina xx
ps lou thanks for the info re rhians funeral please keep us updated. Hope you are doing ok chick x

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Re: Triple negative secondaries/ recurrences

HI Everyone
Hope you don't mind me dropping in - its been a good few months since I posted.
Tina very kindly dropped me an email to see how I was doing and it made me realise I was missing the forum.
I've done a bit of reading to try and catch up with you all and I'm sorry so many of you are having a tough time - its so unfair.

I've been doing Ok. Radiotherapy last September on my neck worked really well - so good that they have now decided to sort my breast out (up to now never their priority) - will soon know if lumpectomy or mastectomy. Other than that I'm feeling good (fingers crossed)

I'm going away for Easter weekend and will check in again next week to see how you're all doing.

Love to you all

Linda
xx

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Laura - I guess the best thing about Lavender's virtual tea trolley is you can drink as much hard liquor as you like and it won't interfere with your sobriety or your principles.
Sadie - What can I say? How disappointing for you. Welcome to the Cap Club and hope it suits you and stops the party...
Lavender - You've started something now. I'm just thinking about bringing round a library trolley. Someone mentioned that Rhian had lent her a book and it started me wondering what books people have found helpful. Anyone? A little book about food that I found great was called "Food Rules". It basically cuts through all the rubbish talked about diet and keeps it simple. It's also quite entertaining and very quick to read.
Love and hugs to all. Keep as positive as possible. Spring has sprung.
Tara xxxxx

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This thread as had so much bad news lately I dunno how we meant to cope hope it turns around sn Lav lass if only I drunk lol hugs

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Sadie, I am so disappointed for you, after your bone scan having been OK, was hoping for a different answer. Rude words.
And Wellmeant, how tough that must have been to be asked re continued treatment- glad you got your combined breaths back to say Yes!
Here is hoping for good results for Sadie from Cap, and a treatment that works for Mrs Wellmeant.

I think it is a tot of whisky or rum for everyone in their evening cuppa tonight ( fetches large bottle from bag hanging off tea trolley and puts a generous slug in cocoas etc for all who want it- apologies to any teetotallers)
Love to all from Lavender

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Oh sadie I'm so sorry to hear this it's the pits ain't it have they grown much hope you have the same results as me it can work big hugs enjoy your choc Laura xx

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Hi All.........pants basically. Sorry to put a downer on the thread this eve but scans are not good. Lungs and spine having a party off chemo. So, Im joining the capcitabane crew - starting on 16th.

Sorry, not read others news - so general hugs all round! Off to eat chocolate!

Sadie Xx Xx

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Re: Triple negative secondaries/ recurrences

Hi All.........pants basically. Sorry to put a downer on the thread this eve but scans are not good. Lungs and spine having a party off chemo. So, Im joining the capcitabane crew - starting on 16th.

Sorry, not read others news - so general hugs all round! Off to eat chocolate!

Sadie Xx Xx

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Dear Everyone

I've delayed posting as I decided to get over a few hurdles first. Just had bone scan today, last week was spine and neck, and onc next Wednesday 11th. So we'll see what is going on. Best hope is that it is "just" the lymph glands getting out of hand, and not too much in the way of other spread. Nearly finished cycle one Xeloda and doing ok.

Jo - sorry to hear you are having such a tough time with cycle two. Tina and I are both trailing behind you, but now that you are delayed maybe we will all be alongside each other. I hope your sore mouth and feet get better soon. Even one mouth ulcer can be a nightmare so you must be really going through it. Thinking of you.

Sadie - wondering how your appointment is going today... Let us know soon. Well done to your DD for the netball achievement!

Tina - love hearing about your plans and positivity. Well done you. I hope the Xeloda is a breeze...

Lavender - thanks for the virtual tea trolley. Much appreciated.

Wellmeant - sorry to hear you and your wife are going through this uncertainty at the moment. We all end up between a rock and a hard place with treatment options I think. Perhaps this is a good time, as you say, to restore your energies and look at the options.

Sandra, Laura, Lulu, bestfriend and everyone else, hope you are keeping as well as can be.

Have a good Easter weekend all. I shall be away visiting my son in psych unit in South Wales, so not really a rest for me. Will be thinking of you all and will catch up next week.

Tara xxxxxxx

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Dear well meant
I am sorry to hear about your wife. Maybe you could think about a second opinion. Lots of us have had second opinions and you just ask your GP. I don't know where you live but I had a second opinion at the marsden.
There are lots of other chemos so if your wife can tolerate one of these may be effective as not everyone responds to taxol. I hope you can get another plan sorted.

Hope results were promising sadie. I'm struggling with 2nd chest infection and a mouth / throat of ulcers from the chemo. They are so sore and I can't eat. I'm starting a lower dose next week and hope I don't get again as doubt these healed by then.

Hope everyone else okay.

Love Jo x

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F0llowing on from my 30th march post: My wife had a scan yesterday after being admitted into hospital on Monday although the cancer hasn't spread it has increased considerably in the lymph glands under her right arm and on her r h chest, the cancer is not responding to Taxel and Avastin so treatment stopped. The outlook isn't good our consultant has asked if we want to continue having treatment which was a shock a very pointed question. Of course we said yes so they are geting my wife's pain relief sorted and building her up then we will start again. The consultant is one of the best and says there a other chemos she can if she can tolerate them.

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Hello everyone, hope you are all ok. Rhians family are finalising the funeral arrangements which I understand witll be next Thursday with the initial service in Aberystwyth and the memorial in Builth Wells at 13.30pm. I'm hoping to be able to get to the memorial as its not as far as Aberystwyth for me. Once I know exact arrangements I'll post further xx

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Morning lovely ladies!

Hope you are all OK and storing the chocolate for the weekend!

Laura - BH do seem to get in the way of everything! 6 weeks sounds exciting!

Lav Lassie - HELLOOOO!! Green tea and a chocie biscuit please!!

Hope / JO - Oh goodness I hope the reduction helps and you can stay on it for a while - but it all sounds really uncomfortable! Gentle hugs.

Loupylou - Thank you for passing on our comments to Rhian's family and trying to find out when her funeral is. I would like to light a candle for her. Hugs to you and LuLu too.

Sandra - Hope your scanxiety is not too great! 11th is not too far.

Bestfriend - Delighted about Heather's news! Back on Avastin sounds great!

Tina - Disney sounds FAB!! Remember - dont que!! Hope cbeebies was a good trip! Did you sing along??

Hugs to everyone else.

I have increased my pain killers to the maximum dose and thought they were doing the trick - but v sore at the moment. Still, will have a better idea of what is going on after tomorrows results and meeting with Onc! Had my Bisphosphonates on Monday and felt rotten yesterday! I thought it was only supposed to be the 1st treatment that you struggle - no one has told my body that! I will have a chat with it! DD has got throuigh to the National Club Netball Finals again - top 18 U16 teams in the country!! V V pleased for her and determined TO GO even if I have to delay treatment (its in about a month)

I will post tomorrow, but onc appointment is not till the end of the afternoon, so will not be till later.

Sadie Xx Xx

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Lav las thanks my family was a couple yrs ago now well went for my appt today all ok got my scan booked because of bh bla bla it's in may so all gd if my next scan is ok they sd because I'm doing ok and because no real se I can got on to 6 weekly visit which will be gd we only have to go up every 6 wks so glad about that hope y all ok tc laura

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Jo, That sounds tough, are you on mouth washes/ antifungals/getting advice from the team re ulcers? Hope the lower dose reduces the side effects.
And Laura, meant to say before love your new picture!

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Hi all
That sounds fantastic news sadie. Fingers crossed for other scans.

Tina - you amaze me with your energy and determination going to Disney when you've been so poorly.
I've not been but am sure younger boys would love it at 3 1/2 and 2 but not sure if younger one bit too young.
Have a great time.

Cycle 2 of cap/avastin has been very different from first one as didn't have pain thank goodness.
Instead I have a mouth of ulcers and my throat is all ulcerated.
It's really hard to eat other than yogurt. I've also developed painful feet and can barely walk and are all red and inflamed. My Onc has stopped it so I've missed last 3 doses. We are going to try on a lower dose.
I've tolerated all the others so well and thought this was milder but seems not.
I also had a rare side effect to Metroclopramide so can't take again. My jaw went off to one side and my left arm was involuntarily twitching and shaking. I went to Dr and is a side effect. Worried I cant tolerate capecitabine as was hoping to be on for a while. J x

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hi all wow sadie that is great news lets hope the other scans are ok im up hos today just for blood test and next lot of tabs so a easy appt tina glad you are feeling a little better disyland sounds great id love to go but my son is 13 and thinks hes to old lol maybe ill go alone it looks like another sunny day here ill prob put my washing out and it will rain, hope everyone is ok and getting over poor rhian slowley lots of hugs laura xx

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Hello everyone, hope you are all doing ok. I'm still trying to come to terms with the suddenness of Rhians passing and I'm sure Lulu is the same. I know Rhian wouldn't want me or anyone else to be miserable - her email was Rhian Sunshine and she always had a positive spin. I've passed all your lovely comments onto her neice to pass onto her family. I've also asked them to let me know when her funeral is as I'm hoping to be able to go. I'll let everyone know as soon as I know details. Take care everyone x

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Hi ladies

Best friend , glad to hear that heather has had better news with her heart, and that avastin wasn't the course of her heart problem. Hope the treatment continues to work well for heather. X

Tina, glad yr feeling bit better, and planning a trip to Disneyland , sounds bril, yr Dan will luv it.:) x

Sadie, good news, you must be feeling relieved, hope MRI n ct have good results too. X

Jo, hope yr not in too much pain, and can enjoy some of the easter hols with yr children.x

Hi to l lass, lulu, Laura, Sarah,Tara, and all others too.

I had my chemo last thurs, avastin, and had a ct scan on Friday. Got appt on 11th April for results.

Like L Lass's idea, of coming round doing a "tea" round to you all, bril, luv to you all. Sandra xxx

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Hi everyone, to continue the positive note, having been told she may drop dead at any minute due to heart problems by her onc (yes, really!) cardiologist has told Heather that she probably always had a slight heart arythmia which has been made worse by chemo strain and stress, having been on taxol for a long year. She has been given beta blockers and is being monitored, but is able to go back on maintenance avastin during chemo break. So heart problems NOT a side effect of the avastin.
Love to all from a lurker... great news Sadie! Heather has a back niggle which I am sure is an enlarged spleen as her body fights to heal the hickman site where they took it out, and the portocath they put in, but it is often painful and I know she worries. sooo glad you are feeling better Tina, love to all, Kim