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Triple negative secondaries/ recurrences

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Re: Triple negative secondaries/ recurrences

Val, how great is that? Such a simple way of making a hospital visit more bearable. I like science fiction films, which isn't evryone's cup of tea! However, if you want a good story I would recommend Damages, an American TV drama. It's got Glenn Close at her most menacing. The thing is you may not be able to wait in between treatments to find out what happens next! I have the first season which I won't watch again so if you fancy it, PM me your address and I'll send it over.
Laura, I have a great image of us TNs sitting round, rolling up giant doobies and listening to Astral Weeks
Take care ladies
Xx
Member

Re: Triple negative secondaries/ recurrences

Hi val
I am rubbish at suggesting films because we always end up watching 'family films' that every one likes, so if you want a quick review of 'the avengers ' or 'cowboys vs aliens' then I'm your girl! (can you tell I am at the bottom of the voting list!)
Hi Bestfriend
Did Heathers pain come on all of a sudden? I only ask because I had been feeling short of breathe for a while then the pain started all of a sudden and it was really bad. I went into hospital and they did a ct scan and found a pulmonary embolism. I have been kept in and treated with blood thinners, oxygen and pain killers. At the time the pain seemed unbearable but I am already beginning to feel better and it has been less than a week.
I hope they sort out heathers problem soon
Tillycatxx
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Re: Triple negative secondaries/ recurrences

Hi Moondog, No I have not got a date for my CT scan as yet but have been quite busy with other stuff....
Yesterday the ward called me in early to give me 2 untis of blood because my Hb was only 8.9. The first unit went fine but the second one made my temp soar so they had to slow it down to a FOUR HOUR infusion and the unit I wss in closed at 6 30 so they had to shunt me over to the BC ward to complete the transfusion and I didn't get home until 8 30pm having arrived at the ward at 11am!
I got my Zolidronate infusion before the bloods and picked up my next cycle of Capecitabine so started that today.
I am still on steroids but they have given me more of them and from the weekend I have to take them on alternative days. So was completely whacked last night and couldn't even hold a conversation with my lovely Yd as I was so brain dead!
My apitaite returned today with a vengance. I had 2 bowls of home made chicken potato and leek soup and 2 bowls of stewed rhubarb with creamy icecream to folow! Then at tea time I scoffed into 2 welsh lamb chops, new potatos and cabbage with lovely gravy. My OH cooked the lot but I help load up the dishwasher.
I am heading off to bed now though as I want to try and finish the paperback I have been reading as I have a pile of other books from the library that I want to get into.
When I was in the ward yeaterday the lovey staff nurse gave me the use of a small DVD player ( one of a few that someone had donated for the patients). The first film was Romeao and Juliette with Leonardo Capricio. I watched half of it but did nto like it much. So tried another film this time with George Cluny and Catherine Zeta Jones. I am not a Cluny fan but the film was not for me either. I would have muched preferred a film with a decent story andnot stupid comedy. Anyone seen these films. was it just me? But I think the idea of having the small DVD players was a great idea and I could always take a DVD of my own in to play. Anyone give me titles of something they think I would enjoy for the next time?
Hope you are all doing okay, gentle hugs and a cuddle for those in need of one, Val
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Re: Triple negative secondaries/ recurrences

How intresting moondog we will have all the tn ladies as high as kites lol
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Re: Triple negative secondaries/ recurrences

Moondog, Thank you very much for those references, it shows your brain has bounced back as well as the rest of you!
Waves and good wishes to all
Lavender
xx
Member

Re: Triple negative secondaries/ recurrences

Hi everyone, it's been a little while since I've posted. I had my penultimate Carbo last Tuesday and felt dreadful for a few days because they'd upped the dose. Yuck, I felt really low. Anyhow, bounced back now! There's been some interesting bits in the news lately in relation to triple neg breast cancer. I've attached the links below if anyone's interested.
http://www.dailymail.co.uk/health/article-2206056/Cannabis-compound-stop-breast-cancer-spreading.html?ito=feeds-newsxml
http://www.usatoday.com/news/nation/story/2012/09/23/genome-project-links-breast-and-ovarian-cancers/57831816/1
http://edition.cnn.com/2012/09/21/health/cancer-program/index.html?hpt=hp_c2
Interesting that triple neg bc is more closely related to ovarian cancer than other breast cancers. The whole cannabis story has been rattling around for a while and I'd always dismissed it as a crazy conspiracy theory, but it may have legs......
Tara, you'll have moved by now. How are you settling in?
Sadie, how's the Xeloda working out for you?
Val, how's it going? I'm a bit behind, have you had your CT scan?
Bestfriend, I'm very sorry to hear that Heather's been so poorly, did the chemo go ahead.
Well, lots of hugs to you all, Sandra, Lavender, Laurie, Lulu, Rawlie, Tillycat and Laura, keep warm.
Xxx
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Re: Triple negative secondaries/ recurrences

Hi Kim I'm sorry I'm not sure I know her and sorry so unwell I'm not sure they will give her chemo if so unwell I had a chest inf and they delayed it so I'm sure with hers they do same try not to worry hopefully the anti b will work well kp us informed hugs Laura
Member

Re: Triple negative secondaries/ recurrences

Hi Kim

I am sorry to read that Heather is unwell, if it helps you are welcome to talk your concerns over with one of our helpliners, the lines are open 9-5 during the week and 10-2 Saturdays, they are here to offer you both support

Take care

Lucy

Member

Re: Triple negative secondaries/ recurrences

Hi all, to those who remember, an update on my friend Heather. She is not at all well, in constant pain despite VERY strong painkillers due to an enlarged lymph node in her back and pleural effusion, all on right side, very breathless and sleepy, not eating, she has lost about two stone over the last three months and is so thin. She is having navelbine three weeks on, one off, with pamidronate every three weeks. She has had two weeks off due to various reasons but on Sat was so breathless we ended up in A and E, although she is home now, with antibiotics to ward off pneumonia. She is due chemo tomoro, do you think they will give it when she is so ill? I have told her not to have pamodronate as she had awful flu like se's and that was when she felt ok...I just have a bad feeling that she will not come back from this.
Kim x
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Re: Triple negative secondaries/ recurrences

Val glad to hear you are a bit perkier and have your appetite back again.... Sorry the tumour markers have gone up again but good luck restarting the chemo next week.

Laura glad you can continue on the cap for another couple of months but hope you can get something else sorted out.

Hi there esha ness and lisa.

Tilly glad you had a great birthday party. Good luck with your scan next week.

Such sad news about SCACO and so sudden too.

Sandra hope things are going well.

Big hugs to Tara, Sadie, Laurie, Zoe and everybody else
Love lulu xx
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Re: Triple negative secondaries/ recurrences

You are not gatecrashing Lisa.....but how about telling us how you are doing and what is going on with your life. My pecker has returned and it feels so good to have it back! Love Val
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Re: Triple negative secondaries/ recurrences

Sorry to gate crash your thread ladies. I dOn't post very often but I just wanted to say how good it is to see Scottishlass Val with her pecker up again Smiley Happy
Lots of love to all of you on this thread, you are all wonderful women xxxx
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Re: Triple negative secondaries/ recurrences

Hello illycat, Thanks for asking. I did hear from my Oncologist this morning. She stil has not got the written report form the chest Xray but looked at it on the screen and can see nothing new going on. But she will phone me if anything does show up. But she has suggested re-starting Capecitabinne next Tuesday when I go to the ward to get my zolidronate infusion which I aggreed is for the best. She looked up my tumour marker results form last week. Whil on the chmeo pills for 6 months before my hip operation on of my markers had reduced from 3000 to 179. But now that I have been off the peachy pills for 2 months both my tumour markers are soaring yet again.
She is also going to arrange a CT scan as she wants to rule out anything else nasty that could or could not be going on. She knows I have not been feeling great so just wants to explore things and I am happy she is not just letting it go and investigating things properly. I am pleased with that plan too.
She asked about my steroid treatment and I told her that my mood is much much better and that yesterday I couldn't wait to get home after being out for the afternoon as I felt hungry for the first time in months. I am also a bit buzzy and doing things I shouldn't be attempting like trying to wash floors and tidy up things and climbing on a wee stool and I am being told off by my daughter and husband and told TO REST. So have be watching the iplayer and TRYING ot be good.....
Thanks for your interst. I do feel so much better and moe like myself. I hope it continues when I reduce my steroids next week! Love to you all, Val
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Re: Triple negative secondaries/ recurrences

RIP scaco. It must have been such a shock to all who knew her.
Hi Val, have you heard from your onc yet? I hope that the news is ok. You are always such a lovely source of information (and calm) when thing change/ move on for the rest of us. I hope that you don't need it - but we are all here for you if you need us :-)
I had a great time at my party on Saturday. I think it went really well and everyone seemed to enjoy it. I have been absolutely exhausted since. Just finished reading the 'day in the life of' stories from secondaries ladies and I have to say they all put me to shame - I clearly need to get a job, join a choir and start going to fitness classes ! - only joking Laurie, i loved your 'bit' you talked about your hospital stuff and anyway it would have been a bit dull if everyone had said 'felt rubbish today, stayed in bed'
Hi to everyone else, hope you are all doing ok. I have a brain scan next Tuesday. Been feeling dizzy again and back on higher steroids so slightly nervous but hoping its a SE from the taxol
Tillyx
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Re: Triple negative secondaries/ recurrences

Hi ladies
RIP Scaco , so sorry to hear this news. Deepest sympathy to all friends and family.
Sadie, sorry to hear your news of scan results, hoping chemo will get to them quickly. Glad to hear you had lovely family holiday. X
Laura, I agree with you, about this new site, sometimes its easier than others to post! X
Tara/Jo. All the best for your op this week, thinking of you. Will pm you. X
Rawlie, I started taxol/ avastin in July 11, cos of the SE s of taxol, mainly my fingers n nails I then went onto just avastin from the nov11. I've been on just avastin every 2 wks since. But I did suffer upset tummy too. I too have cut out all dairy food, and only eat chicken or fish or veg diet. I do cut out spicy foods, tomatoes, etc few days after chemo. Hope your scans results and your doing ok too.x
Val, sorry to hear yr scan news, hope they start your chemo quickly for you. Sounds like your hip is healing well for you. X
Hi to moondog, Laurie,LLass,lulu,and everyone else I've forgotten
Sandra xxxx
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Re: Triple negative secondaries/ recurrences

Hi everyone,
Haven't posted for a while as I've been suffering really badly with side effects from the chemo (nausea, diarrhoea, painful hands and feet...the list goes on). I've been having Taxol weekly and Avastin fortnightly since the end of May. Anyway, my onc decided to reduce the dose by 20% last week as the toxicity levels were too high and it seems to have made a difference. When you feel so rough like that it's hard to keep up the fighting spirit but I think it's coming back again now. Managed to get out the house yesterday and have a nice lunch with the family so that was a morale booster.
When I found out I had cancer again, I put myself on quite a strict anti-cancer diet with hardly any sugar or fat in it, no dairy, loads of fruit and veg etc. This has made me lose a lot of weight and now combined with all the se's of the chemo it has dropped further. So I have been told by my nutritionist and gastroenterologist that I need to eat more calories and obviously not too much fibre when the se's are bad. This goes against all my reading about anti-cancer diets and I find it very hard to adapt my ways but I guess you have to take the advice of the specialists too and do what your body needs at the time. Just thought I'd mention this and see if anyone else has suffered with this dilemma. Maybe I just took things too far.
Sadie, sorry hear about your news, hope they manage to sort the chemo out for you to get things working again. Scottishlass, sorry too hear your latest news with the lungs. You've been through a lot recently. Laura, fingers crossed for good scan results in Nov. Hi to Moondog, Tara, Laurie and everyone else.
Rawlie x
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Re: Triple negative secondaries/ recurrences

hi all so sorry to hear about woodie sadie sorry to hear y scan results hope the chemo can help not been on much cant post on new site very often not sure how much longer ill be on cap as its growing again but very slowley so its in thier 20 percent growth thing so im allowed to stay on it until my next scan in nov least i can see xmas through ok its thepits isnt it worry about chemo worry about scans god stress or what what did we all do to deserve this hurry up find a cure for us ladies love hugs to all esp tara whos having her op tomorrow hugs laura x
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Re: Triple negative secondaries/ recurrences

Great to see you posting again esha Ness and really happy to hear that things are going well for you and that you are getting on with life. I do miss your posts though. Keep in touch as it is good to hear good news when there is lots of sad news about this year. Love Val
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Re: Triple negative secondaries/ recurrences

Have posted in the "In memory" thread and so saddened to hear that SCACO has passed away.
Esha Ness, it it so lovely to hear that you are doing so well. Long may it continue. I miss your posts. I wish you would pop in more to say hello. You have been so supportive to many on here. Love Val
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Re: Triple negative secondaries/ recurrences

Dear 021210,

Thank you for posting this. On behalf of the moderation team here at BCC please pass on our sincere condolences to SCACO's family and friends. You may also wish to post in the 'In Memory' thread of these forums.

Take care,

Jo, Facilitator

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Re: Triple negative secondaries/ recurrences

Hi Ladies, Just to let you know that our great friend & fellow woodie SCACO passed away peacefully this morning.xx
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Re: Triple negative secondaries/ recurrences

Hello to all soul mates
I want to say hello and warm vibes to Val. I am sorry you are going through a rough patch and encourage you along and through this and out the other end. In my mind you are the mother of the forum, giving out so much to us all. Thankyou.

For those of you who dont know who I am , I was diagnosed with secondary bone mets in 2010, 10 years after my primary diagnosis in 2000. Then had a small lung met in 2012. All still unbeleivable that this cancer has come back after being given such a good prognosis all those years ago.

I have been on a range of hormone treatments over the years, letrazole, exemastine and now tamoxifen plus bone stregthening treatment. Chemo has been Oral Capecitabine and recently finished IV chemo in May.
I see an NHS Consultant Homeopath who specializes in Breast Cancer. I go to Penny Brohn Cancer Care in Bristol for complimentary Therapy. I use the BCC helpline and BCC support groups, see an NHS Psychologist intermittently and on top of the icing on the cake is a sprinkling of antidepressants!

I cope with the awfullness,unkindness and unfairness of this disease by living each day as it comes and making myself stop projecting into an unknown future. The reality of all of this is actually so overwhelming I am now able to block off to protect myself.

My Consultant reassures me that there is a range of treatments that are on offer. When one treatment stops being effective he will try another or return to a treatment used in the past.Thanks Lemongrove for info on Denosumab. I have been waiting for it to be licenced.

The good news is that all is stable at the moment and no sign of active disease and lung met has responded to IV chemo.I have just returned from a cycling holiday in France, averaging 40 miles a day. No pain and loads of energy and looking and feeling wonderfully well.
Esha
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Re: Triple negative secondaries/ recurrences

Sadie so lovely to see you posting again... sorry your scans werent so good this time around but hope the next chemo can sort it a bit... not surprised it made you feel low but still sounds like you have more options to try. so glad you got away for a holiday with your lovely family.

Val sorry to hear you are still struggling... maybe neeed to take you out for a few glasses of red wine soon.

laura i cant imagine what a relief it must be to have 7 litres drained.... hope your feel ok after chemo.

moondog hope the wbc are back up for next week.

tillycat happy birthday hope you had a lovely time.

a big hello to laura, tara and sandra.... hope things are going along ok with you guys.

all going well here... been pretty busy at work but its fab to be back.

love to rawlie, checkmate, natasha, lav lass, busybeen and anybody else passing by.

love lulu xxxx
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Re: Triple negative secondaries/ recurrences

Val, sending some more love and hugs for you, you are such a steady presence and support on these boards to so many other people. And coping with the surgery and the bone mets, is plenty without feeling, is there something else. Hb of 9.5 is a wee bit low, but perhaps not surprising after the surgery?
Wishing a good day tomorrow, some sunshine, mebbe a wee bit of warmth, and most of all a weebit more energy
{{{{{Val}}}}}
Lavender (another Scots lass)
xx
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Re: Triple negative secondaries/ recurrences

Thanks girls I appreciate your kind words. Just want to have some energy tomorrow so that I can do something nice and not feel so knackered doing absolutely nothing. Love to all, V
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Re: Triple negative secondaries/ recurrences

Val
Hope you feel better once the steroids kick in. You've been through too much lately and I'm sorry you've got these additional worries. Maybe treat yourself this weekend?
Moondog xxx
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Re: Triple negative secondaries/ recurrences

Hi.
Tillycat - wonderfully happy amazing 50th birthday!!
Val - much love nd support. I wish they could be real hugs - but here are some virtual ones....... (((((((xxxxxxx)))))))). Sudden surprises in emotional stability can be really hard. Take care.
Hugs to all nd hope your weekend is a good one.
Sadie Xx Xx
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Re: Triple negative secondaries/ recurrences

Happy birthday Tillycat

Val I do hope the steroids kick in and improve things for you very soon. Will you be back on your feet and driving once you're recovered from your op?

Hugs all round xxx
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Re: Triple negative secondaries/ recurrences

Welcome CzechMate, My hip replacement has gone well and I was in a great deal of pain before I had this recent op. BUT, I did have a previous op on the same hip/leg last Sept where they inserted a titanium pin into my femur and another pin to hold it in place. During that first op my fremur was fractured, I was warned beforehand that this could happen. It worked well for many months but then I began to have more pain in my knee, thigh and groin that was getting worse and worse. I had to increase my pain meds and slap on Lidocaine pain patches.
They discovered that the pin they inserted had fracured so that is when I had to have my recent hip replacement. I would highly recommend that you go for the op because I know ladies on here who have suffered a spontaneous fracture, one was turning over in bed when it happened, and I think that this could be harder to repair. The recovery period has been quick. It is only 4 weeks today since I had my new hip replacement. The scar has healed beautifully and indoors I can walk un-aided around the floor but it is stil moe comfortable using the crutches. I also have a wheelchair which I can use if I go out for the day. I can go up and down stairs and get on to the bath aid seat to have a shower and wash my hair. At first I needed someone on hand in case I got stuck but I manage that on my own. My biggest complaint just now is frustration of not being able to do what I want to do as I am usually very independant and love driving. I don't have the stamina to do what my head ewants me to do, and ama bit weepy which is not me at all.
To everyone else, I have been to see my Oncologist today. She has put me on steriods to see if this wil improve my apetite and improve my mood. But she sounded me and thinks there coud be fluid in my lung and she sent me for an xray of my chest. I may hear back from her today, if not, it will be Monday. I am a bit low about this because I have a friend (not on here) who has just been in to have her lung drained. This new lung thing has floored me. I just do not need this added problem right now. We discussed going back on chemo now but decided( when I told her I don't think I coud cope just yet) to wait a little longer before I re-start Capecitabine. I told her my weight is now below 10 stone and that I have not been that weight for years. I burst into tears twice which I found embarrasing. Once with the Oncologist and then when I went to the pharmacy at the ward where I go for treatment when some nurses I knew came out to see how I was doing. Felt stupid but yes I know it is stupid to feel stupid! My Hb is 9.5 but she thinks that is okay for now. Will be back on here to see how you are all doing.
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Re: Triple negative secondaries/ recurrences

In the spirit of these last few posts, have to say Laurie, don't you look great in that scarf!
And have a fabulous birthday, Tilly, congratulations to you and to OH and Best Mates for organising it
Love and KOKO to everyone (Keep On Keeping ON)
Lavender
xxx
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Re: Triple negative secondaries/ recurrences

Hello Val, was just reading this post and noticed you've had a hip replacment. I was to/from my GP and oncologist for over 2 years with hip pain and got fobbed off then suddenly in January this year I'm told it's mets and my hip is shot to pieces and will need to be replaced eventually, grrrr. Anyway, just how painful did yours become before they operated and was it a long recovery? I had a spin op for a tumour in Jan 12 and it really floored me and I am a fit old bird. I'm hesitating about the hip business until it becomes unbearable!

CM
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Re: Triple negative secondaries/ recurrences

Hi all
Still here ;-)
Had 7l drained yesterday and get my second dose of Eribulin today - yay!
Good to hear you had good holiday Sadie and Melissa - hold court in your great new wig and emjoy every single second of your birthday.
Love & hugs to all
Lx
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Re: Triple negative secondaries/ recurrences

Happy, happy birthday for tomorrow Tillycat! Sounds like you'll have a blast. And by the way, that new shade of eyeshadow you're wearing really brings out the blue in your eyes!! Xx
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Re: Triple negative secondaries/ recurrences

Tee hee
Thanks moondog,
My onc also said I was a wonder - but he has also said 'I like your outfit today','don't you look great in a scarf' and 'is that a new wig'
So I no longer take him too seriously - I think he has a list of positive comments he has been told he should say to his patients, I'm hoping to be around long enough for him to get back to the beginning of the list!
Completely irrelevant but ...
I'm having a really big 50th birthday party this sat - 60 adults and more than 40 kids (48 i think) ,at a hotel and all organized by my hubby and 2 best mates (mine, not his, thank goodness!), can't believe I've got here, never thought I would be so thrilled to have reached 50.
Tillycatxx
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Re: Triple negative secondaries/ recurrences

Hey
Sadie, I have exactly the same mets as you now and Carbo has worked wonders for me. Onc said she can't keep me on it because it bashes the immune system too much but we could revisit in the future. Would Cisplatin be an option? Anyway, hope the cap works for you. Sweet dreams sweetheart ...........
Tillycat, you're a wonder - love to read your posts.
Val, the Delia worked well. I love curries too. Tried a new one from from Rachel Allen last night which worked out really well - lamb and sweet potato, yum.
Was due chemo on Tuesday! But it was delayed to next week due to low WBC.Felt a bit flat but I've had a good week all the same.
Love to Lavender, Lulu, Sandra, Laurie, Rawlie and everyone else xxxx
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Re: Triple negative secondaries/ recurrences

Hi all....and Melissa, thank you or putting finger to computer nd sending the message. It is the 'hope' contained within it I greatly appreciate - thank you again. Carboplatin worked well a while ago, but only about 10/11 months rather than years. But my Onc has talked about going back to this one if the cap does not get it!! Nice to know this pattern has worked for you.
I'm on OxyContin and oxynorm which I think are morphine based strong pain killers. I feel like I'm chasing the pain a bit but it is much more under control than it was nd I'm reviewing it with the fab pain team at the hospice next week. I do think strong pain killers have a negative association as 'end of the line' and this is obviously the case on occasions - but not always the case. Let's use them nd not worry about it (.......well, let's try anyway!)
LavLass. Thank you for your support. Hugs Xx
Val - so glad the hip is doing well. Great news. Xx
BB - I second your post! Hugs Xx Xx
Feeling a bit brighter today - but could sleep for England! No joke! Sh......off to sleeeeeeeppp.
Sadie Xx Xx
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Re: Triple negative secondaries/ recurrences

Hi Val, Thank you so much for all your posts, particularly your comments about pain relief which have made me more comfortable about taking Zomorph and Oramorph. The wealth of information you provide is invaluable. BB x
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Re: Triple negative secondaries/ recurrences

Just popped in again to say I am sorry for any of you who are struggling at the moment. pain relief is very important and as Melissa has said above ( hello Melissa....waving!) I have been on morphine for over 13 years. It allows me to do stuff without having to deal with extensice pain. I have to patches too but I do not need them now that I have had my recent hip replacement. before I had the op I had to slap 2 of them on my leg and hip as I was in so much discomfort. What I wanted to point out is that because you are taking morphine or other strong pain meds it does not mean you have to take them forever and that you can reduce the dose aong the way too. If Ican help any of you in any way please just ask. I "ony" have bone mets but I am here for you and rooting for you all as well. Love and some hugs, Val
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Re: Triple negative secondaries/ recurrences

Sending love to Sadie- glad you had such a good holiday, you needed that before getting to grips with the next "challenge". Hope the rads make a difference to the pain soon.
Really interesting ideas, Tillycat, even within the Triple Neg sorority there seems to be such a varied approach to chemo choices by their oncologists.
Love to all especially SCACO
Lavender
xx
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Re: Triple negative secondaries/ recurrences

Hi Sadie
I was diagnosed with liver mets in 2009, bone mets 2010, lung and brain mets 2011 + I have lymph node involvement which I can feel as lumps in my neck near my collar bone
I'm usually a lurker here but I read your post and it made me want to reply. I am hormone positive but I have never responded well to any of the AI's that have been tried, chemo has been the only treatment that worked for me. Of all the chemos that I have tried only one (paclitaxol) has definitely shown good results.
I have posted on other threads because a while ago I had very poor liver function. My onc (at the Marsden in fulham) was being very cautious about what I could expect. He decided to put me back on paclitaxol - a much lower dose than standard (50% of full dose for 2weeks on 2 off rather than 100% for 3 on 1 off)
Paclitaxol worked well for me 3 years ago when I was originally diagnosed with secondaries. The downside of it was that the tumours stated growing back within a few months so it wasn't a long lasting chemo.
My thought is, if the capecitabine doen't do the trick, have you had a chemo that worked before that you haven't used for a while? The almost 3 year break seemed to work for me.
I'm not being unrealistic, I don't think paclitaxol is going knock the cancer out indefinitely but I do feel better for it and I'm hoping that it will give me a bit of extra time.
Lastly, I don't know what pain relief you are on but I have been using oromorph for over 2 years now, I don't see it as something just for people very near the end (i think Scottishlass has been taking it for many years). I also have fentanyl patches, they work really well for me and I am pretty much pain free. The Macmillan nurse sorted it all out. She said that 30% of people don't tolerate morphine or morphine type pain relief but that means that 70% do.
I hope this isn't completely irrelevant to you - You probably know all this stuff already. Fingers crossed that you get something sorted soon, all the best
Melissa
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Re: Triple negative secondaries/ recurrences

Hi Ladies!
Nice to catch up with your various posts. We are all on such different paths -with a common goal!
We managed to get away for a wondful holiday I Portugal. The journey over there was very hard. I did think of Tina so much at this time. I was not sure I would make it on the plane. But I did, nd we had a holiday full of sharing, laughter and togetherness!! Back home with a bump and some v poor scan results. Significant spread nd my Onc saying th cancer has 'moved into the next stage'. So, getting my head round this without really wanting to knowwhat she means by this!! So I now have it in my lungs, bones and liver nd lymph glands. I can feel two lumps in my neck which I really do not like! Makes it real! Anyway, I've increased the dose of capcitabane to 100% and had daily radiotherapy on my spine for pain control. Fingers crossed it works as I really would like some quality pain free time - as we all would!
Hugs ns smiles to all of you.
Sadie Xx Xx
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Re: Triple negative secondaries/ recurrences

Sending love and good wishes to SCACO and hoping she is feeling better soon
Lavender
xx
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Re: Triple negative secondaries/ recurrences

Quick update. SCACO has been in touch to say that she is still in clink while they try to work out what is causing her pain. Hoping that she will be back home with her loved ones soon. Sending her love and hugs xxx
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Re: Triple negative secondaries/ recurrences

Just to say Hi to everyone. For some daft reason I kept misssing this thread so I have had a quick catch up. Can you tell SCACO that I have lots of expereince of Xeloda and they only reason I am not taking it just now is because I am recovering from my op. So if I can help her in any way I would only be too pleased to see her and could even PM her my phone number if she cannot get on to the thread to reply. Let me know if she wants to do that MaryGrace/Sue.
Moondog a belated happy anniversary and I hope the Delia recipe turned out good. I am going to attempt my age old recipe for Prawn Tikka Massala that is the easiest curry recipe I have but all the family love it. Fresh root ginger/Garlic/green Chillies/ fresh Corriander/lots of spices etc and "Bob's your uncle"!! Was the trip to Cornwall a second honeymoon for you? Or did you mean an anniversary to do with BC??? I hope you have your garden under control. I only have a garden big enough to sit in and to hang out washing but it is packed with shrubs and herbs and my crowning glory are my Japanese Anenomies which I have in Pink and also white.
Tara I hope you manage when your son heads off to Uni. Wondering where you are moving to and if you have somewhere in mind. Would love to hear all about in. How soon do you think the move wil be happening
Wow....my wheelchair has just arrived and it is much better than I ever thought it would be. It is top of the range. The wheel come off at the touch of a button to put it in the car and it si so light and easy to manouver and I have been whizzing round the house. Just arrived when I finished the last paragraph. We have a lovely shopping centre nearby called the Gyle which has loads of great shops so I could get my husband to take me there and come baqck for me when I had finished shopping. But early days yet and I will need my L plates for a wee while!
Lulu you may see me charging up and down ward one the next time I am there! I went with my YD yesterday to teh Genetics Centre at the WGH because whe had been referred after her recent scare whrn she found a lump (which ended up to be normal tissue thank goodness). But other family memebers have had other cancers so YD did not know all the details so asked me to accompany her. They are going to keep an eye on her when she is 35 but she is only 29 and turns 30 this month. I see My Oncologist Dr B next week on the Friday to discuss treatment for the future. Then see my Orthopaedic man in October. I am doing well though and cannot believe it is such a short time since I had my operation for my hip replacement. The wound is huge but it is healing beautifully and apart from the pain ( I am taking Oxynorm every 4 hours on top of my other meds). I can shower on my own and wash my hair, but I still would not do it without someone being nearby incase I slip. I can go up and down stairs. Getting into bed needs a few odd moves but my arms are strong so that helps. I have to sleep with a pillow between my legs. I have tried without but my leg can move inwards or outwards and it is very uncomfortable. I want to turn over in bed and you have to wake up in order to do so. It is all a learning curve but I am doing fine.
I am sorry if I have missed anything important on the thread that I haven't responded to but believe me I am rooting for you all. With fondnes love to you all, val
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Re: Triple negative secondaries/ recurrences

Hi Sue Thanks for the update re SCACO. We will all be thinking of her of course and hope they find a solution quickly to whatever is causing the discomfort. Let us know when you hear more.
I'm sorry I'm not on much at the moment. Life has gone a bit mad with the prospect of moving, but also my dad has just been diagnosed with cataracts, glaucoma and macular degeneration. Talk about a triple whammy. Poor old boy just hit 90 yesterday and the news rather overshadowed the celebrations. So I am chuntering up and down to Wales whenever possible. He lives in the middle of nowhere and now can't drive. My boss just offered me more hours...um not just at the moment I think.
Lots of love to all, and will keep an eye on posts.
Jo xx
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Re: Triple negative secondaries/ recurrences

Hi ladies,
Sorry to butt into your thread but just to let you know that SCACO went into hospital at the weekend. Here is a message posted by 021210 on a different thread:
"Message from the woods. Just to let you know that SCACO has returned to hospital in the hope they can sort the terrible discomfort she is experiencing from bowel issues etc. Am sure all of you will continue to send love, prayers & best wishes that her discomfort is sorted quickly & she can return home ASAP. When SCACO is unable to access this site, all your messages etc are passed on until she can get back on here herself to read/update & knowing the support & love out here for her will truly be helping. Much love to everyone.xxx"
We have passed on all messages to SCACO and I am sure that she will be in touch once she is released. We have no updates at the moment. Praying for her that her discomfort is eased, that she is soon able to return home to her loved ones and that the Xeloda kicks in soon.
Sending you all love and best wishes too.

Sue (MG) xx
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Re: Triple negative secondaries/ recurrences

Hey lovely ladies

Tara what fab news i so pleased for you.

sadie where are you hope all is ok.

sandra glad avastin still going well.

moondog glad you had a lovely holiday

SCACO really sorry its all getting to you right now hunny but still early days, no experience of Xeloda either im afraid but hoping its getting easier.

val hope youll be up doing a jig around ward 1 soon.

love to lav lass, laura, laurie, chrispie, amore and all

love lulu xxx
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Re: Triple negative secondaries/ recurrences

Hi ladies
Its been quiet on here over last few days, hope your all doing ok.
Scaco, I'm sorry but don't have any experience of xeloda either, hope your coping with SEs better this week. X
Scottishlass, val, hope yr feeling better everyday after your hip op, have you got a chemo break for few months while recovering? X
Moondog, how are you? X
Hi to lulu, Sadie,Tara / Jo , LLass , laura, n everyone else I've forgotten
Hugs xxx
Sandra xxx
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Re: Triple negative secondaries/ recurrences

Hallo SCACO,
I am so sorry you are feeling low, I do not have personal experience of Xeloda but am trying to help by posting a link to your other thread
http://www.breastcancercare.org.uk/comment/2048009#comment-2048009
Hoping the Xeloda kicks in soon for you
Lavender
xx
Member

Re: Triple negative secondaries/ recurrences

Hello SCACO, I'm just back from my hols and sent you a PM. What's occurring? Did you start Xeloda as planned. Are you more comfortable after the drain? It's early days, but I think you're doing so well x