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Triple negative secondaries/ recurrences

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Re: Triple negative secondaries/ recurrences

Hi dudes
Back from fab holiday in Cornwall. And back to fab news too - great results Tara. I've come back to a letter inviting me to a foul kidney test prior to may next Carboplatin (they measure your dose according to kidney function), but other then that, all well.
My garden's gone mad and I've got a couple of new plants from the Eden Project to put in. The girls look all bronzed and really got into body boarding.
Dulcie, how are are you getting along with that second opinion?
Sandra, pleased to hear the Avastin is still doing its thing.
Cheers to Lavender, Lulu, Laurie, Sadie, Rawlie, Val, Rattles and anyone I've forgotten.
Xxx
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Re: Triple negative secondaries/ recurrences

Fabulous news Tara! xx I hope it works for me too!

Dulcie xxxx
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Re: Triple negative secondaries/ recurrences

Hi girls
Firstly must say, BIG thank you, to bcc, that I can now post back on here. Smiley Happy

Tara, Bril news, that must worth celebrating big time. ( double celebration with your dads birthday)
So pleased for you.Exciting times ahead with your move into your house. Smiley Happy xxx
Lulu, bril news for you too well done huni. Hope work is going well for you. Xx
Sadie how are you? Haven't heard from you for a couple of weeks, ( I know how frustrating it can be, not being able to post on here, ) hope your ok and can post soon.xx
Im still on avastin every 2 wks, just came back from hosp today. Doing ok.
Hi to all, moondog, LLass,dulce, val, Laura ,Laurie, and everyone else I've forgotten too,
luv Sandra xxx
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Re: Triple negative secondaries/ recurrences

How fantastic, Tara, no wonder you were celebrating! Really good news.
And now on to the other exciting stuff, son to University and move, which comes first?
Lavender
xx
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Re: Triple negative secondaries/ recurrences

Hi girls

Sorry I didn't get back yesterday. Was too busy celebrating! Scans show no progression and so no onc appointments for three months! If anyone had told me I would be this ok 20 months from secondary diagnosis I would have been surprised. So am very pleased. So Xeloda (Cap) has given me a reprieve.

Now I have to focus on the move and getting my son off to Uni. Big changes. Thank you all for your thoughts and love to all.

Tara xxxxxxx
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Re: Triple negative secondaries/ recurrences

Good luck today Tara...please come back today (if you can) and let us know how you got on!

Dulcie xxxx
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Re: Triple negative secondaries/ recurrences

Tara, thinking of you today and hope that the results are good xx
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Re: Triple negative secondaries/ recurrences

Fingres corssed, Tara!
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Re: Triple negative secondaries/ recurrences

Hello all
Good to read through all the posts. Gosh it's been busy! Good to see so many on the thread. Just a quick note to ask everyone to cross their fingers for me for scan results on Wednesday. Ok I'm not expecting the same result as Lulu (wayhey Lulu) but stable would be acceptable. Pain has suddenly reappeared today, having had a respite for a few weeks.
Moving to new flat on 20th Sept or thereabouts. In the meantime my Pa's 90th birthday celebrations next weekend. Big family gathering in Wales. Big hugs all round. I think of you all often.
Tara xxx
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Re: Triple negative secondaries/ recurrences

Hurray for Lulu's MRI!
Val, that sounds tough, your bones being stronger than the pin is well weird, glad things are moving in the right direction
Lavender
xx
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Re: Triple negative secondaries/ recurrences

Lulu, just a quickie from Cornwall to say a big congratulations!
Val, good to hear you're on the mend.
Love Moondog xxx
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Re: Triple negative secondaries/ recurrences

val glad your home and being looked after i had been wondering how youd got on xxx
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Re: Triple negative secondaries/ recurrences

Hi Scottishlass xx I am already with you on FB xx You seem to be going in the right direction in getting better! I understand the hospital situation..when i had my mx..there was only me on the ward..but they were not used to cancer patients..but they WHERE like little hitler's just the moustache missing! lol...on my ward anyway!!
Is the thread the Xeloda one? I'm Amore
Dulcie xxxx
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Re: Triple negative secondaries/ recurrences

Dulcie and Sadie I too have been on Capecitabine and just finished round 8. There is a thread discussing the problems and hints for people on the drug and I just posted on it this morning. If you cannot see it let me know.
I only stopped the drug 2 weeks ago because I needed a complete hip replacement when the pin I had inserted last September decided to fracture, yes not the bone but the pin. Got out of hosp on Wednesday and now on the slow road to recovery with more painkilers added to my list including Oxynorm ( which I keep miss- pronouncing as Oxy-MORON.) Also paracetemol and asprin as I am off the Warfarin injections.
I have also re-started my Letrozole after discussion with my GP as I felt "vunerable" with no treatment ongoing for bone cancer, plus restarted Diclophenac as I had to stop it before OP as per anaesthetic Dr. So I filled with pills but without them I am in great pain as they had to cut away a largish bit of bone to insert my new hip. But each day there is a small improvenment and I did not need any Oxynorm between midnight and 9am which is good.
I can go upstairs on my own and get in and out of bed ( using my own neat way of pushing my good leg on the bedside table and using my arms behind me to pull myself in!!). This is becoming easier every day as my OH had to lift my leg off the floor and just hold it until I could manoever myself in and out. I can do it myself now!!!
The "dog lead" aid they gave me is useless for people with damaged ribs, bone mets and a muscle missing from her back yet they expected me to do it before they would let me home. This was in the Orthopaedic ward but some nurses do not know much about our special needs or disablement. But my OH is a trained nurse so I managed to convince them I would manage better at home.
In hospital what they do not give you is TIME to REST. Each time I nodded off after some exertion or other I woud be woken to have BP taken, or pills given or blood tests etc. I cannot do what normal patients having a hip op done can manage. It just isn't the sAME and they are not clued up on it. I needed a blood transfusion when i was in but it increased my Hb from 7 to 10.1 which made me feel a bit livelier!
Todays target is to have a shower again and wash my hair. My husband will help me as he did when I got home but I think it will be easier this time round as we encountered problems so know where we went wrong last time. I have a bench seat in the bath which allows me to sit and shower in the bath. But it was scary last time as i was in much more pain. I manged to dress in proper clothes yesterday, I can manage the stairs at home with crutches. So every day is going in the right direction even if it is a two steps forward and one back now and again.
It is so good to hear from all of you who have been missing. I have read all your posts. PLEASE keep in touch if you can as your imput has been truely missed. Good luck to all of you struggling with anything including thinking about moving house etc. Much love Val
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Re: Triple negative secondaries/ recurrences

MRI results were normal. Yay! Its good to know the tax and carbo seems to have done the trick. Moondog great news that the carbo is working for you too. Hope your feeling better and enjoying your holiday.
Laura any more news? Xxx
Rattles the parp inhibitors do seem to have had some good results for brca ladies so it's something Iv been watching too having had a recurrence in my chest wall and conservative surgery I'm not entirely convinced this is the last Iv seen of it, but just glad its gone at the mo. hope your boobie gets better soon. Thinking your pins and needles is some kind of neuropathy. I didn't get that so much as tingly pains in hands and feet and a numb nose. Had hallucination after a few seconds of first tax but always had piriton and hydrocortisone after that and was fine. But did get breathless, faint, dizzy, weak and palpitations from the tax and they got worse each cycle. Now six months on and these symptoms have pretty much all gone although still dead tired.
Love and hugs to all xxxx
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Re: Triple negative secondaries/ recurrences

Hello
Rattles, those are pretty full-on SEs and I hope you feel a bit better now. I'm really intesrested in trying the PARP trial once my course of Carboplatin finishes. I've been reading bits and bobs about it still holding promise for BRCA people. Google PARP and quite a few recent articles come up. My onc seems keen and the prof I spoke to at the RM has referred me to the trial team.
Dulcie, I found it quite weird seeing my CT results on the screen, I could no longer kid myself that someone had just made a huge mistake or spilt coffee on my results or something. It really brings it home.
Laura, sorry the results were a bit bluuurgh. You've had a bit of a crappy time of it. Hope you had a nice pamper.
Tara, how are you getting on? Any joy with the house hunting?
I've been in bed most (well, all) of the day after my 4th Carbo yesterday. Just sick and wiped out. Hopefully it will lift in time to go away to Cornwall on Friday. Looking forward to visiting the Eden Project and taking the girls to the beach.
Lots of hugs to you all
Moondog xx
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Re: Triple negative secondaries/ recurrences

Hi there,
thanks for all your kind replies and welcome.
Just a note to Laura to say I am a London girl and treated at the RM in Fulham.
Lulu, thanks, like I said, I always feel a bit guilty using you as a personal advisor...........
Just incase anyone is interested, the dose on the bag said 500 but dont know what that means. I thought onc might say reduce dose but he didnt.
SE's this weekend on top of the usual were mild hallucinations, light-headness and feeling faint. Pins and needles in bowel and baldder as well as hands and feet and like pins and needles just moving up and down my body, in nose, lips face ect. I also feel like this one has hit me like a bus. I get the feeling that onc's unhappy to give 6 when he does not know if this is more effecttive than 4. A further factor is that the incision from failed reconstruction has not healed in the middle, they say due to rads and chemo (even though they said chemo would not undermine healing!)
Like I tried to say, its hard being a triple neg. lady once. Getting it twice makes you 'rare' for all the wrong reasons so I am interested in your experiences/feedack. I cant offer specific advice to you but wanted to send support.
My Onc has talked about PARP inhibitors as possible treatment if my brca1/triple negative cancer were to return. Dont know much about it, but thought I would mention it.
Love and support Rattles x
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Re: Triple negative secondaries/ recurrences

Thank you Lemongrove i will go and take a look at what it says on google...i have heard of it ..but that is all! Thank you for taking the time to tell me x Us cancer patients get more information on these boards than any onc ..or doc would tell! Unless of course you have a brilliant team...
Lulu xx Rattles i'm sorry i couldn't help..but thank you all ..everyone is so so kind here!
Dulcie xxxx
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Re: Triple negative secondaries/ recurrences

Dulcie, I'm really worry to read that your lung mets are too diffuse for CK or Tomotherapy. Have you looked at radiofrequency ablation? Also arterial infusion could be another thing to look at.
Also as to your question about how cancer spreads. Unfortunately as Lulu has said, C uses both the lymphatic system or the bloodstream to move around. That's why people who were originally diagnosed with no lymph node involvement, subsequently relapse with stage 4 cancer.
Laura, sorry to read you've had some progression.The main thing though, is that it's still within stable bounds, and you docs at the Marsden are keeping on top of it.
LG X
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Re: Triple negative secondaries/ recurrences

hi rattles you should have just messaged me.... i was actually just gonna email to see how you were getting on.

i had 6 carbo tax but think the tax was a lower dose than those who have tax after fec.... so you could maybe see if you were on the full dose.... think mine worked aout about 450 mg per kg rather than 400 mg per kg.... (not even sure if these are the correct units).

i also know there is a lot of research recently showing that 4 cycles is just as effective as 6, but it will probably take a while for this to be rolled out nationally as many oncs have only just started doing 6 cycles instead of 8 (and some still do 8!)

Dulcie cancer can travel by lymph or blood or both.... even with negative nodes there is still a remote possibility that the cancer still used your lymphatic system to travel through your body but didnt stop off in your lymph nodes long enough to leave a deposit behind, or that it has travelled a different direction through less common lymph drainage eg my auxilla lymph nodes are and always have been clear but the cancer travelled through a different route to the interpectoral lymph nodes.

laura really pants to hear the cancers on the move again, but hopefully it will continue to be minimal xxx

moondog congratulations to you and your hubster x

SCACO sorry to hear of your recent concerns. how do you know you have something suspicious on your liver? have you already had a scan? or is it something your gp can feel? if you havent had a scan then i think that would be quite important and also getting all your bloods done. hope your appt goes well on friday.

sadie hope your doing ok

love and hugs to all you lovely ladies xxx
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Re: Triple negative secondaries/ recurrences

Rattles, I'm sorry no one has answered you, they are a lovely bunch in here, and have been very welcoming to me among others over the last year and more, even if strictly speaking we have not yet become eligible for this thread.
I don't know the answer to your question and wonder if you would get more response from starting a separate thread? According to something I glimpsed yesterday, you then have to answer yourself to get into the latest posts section. Worth a try?
I have seen in discussion where someone has had to come off chemo for a problem, that they don't absolutely know how many cycles are needed.
Good Luck!
Lavender
xx
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Re: Triple negative secondaries/ recurrences

I just came on to see if anyone had responded to my intrusion onto this thread.
Wanted to send hug, love and support to Laura and Dulcie. You both sound as though you have had a very challenging week and thinking of you.
Rattles x
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Re: Triple negative secondaries/ recurrences

Hi ladies xx I had a 'look' at my lung mets today on onc's screen! I've got lots and lots of tiny ones and ten that are a bit bigger ..so i am not suitable for Tomo Theraphy or Cyberknife..? i was looking at Cryotonics ...where they can freeze tumours in the States......can i ask..do most secondaries move through the blood? Only my surgeon made such a big thing of telling me my lymph nodes where clear....whilst it was in fact already growing in the lungs...
I was not given my chemo or rads today as my wound is in a bit of a mess..so off to get it looked at and drained ..again on Thursday.
I do think of you ladies even though i have only been here recently ...when you don't post for awhile i worry..then it's nice to see you 'pop' up again!

Dulcie xxxx
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Re: Triple negative secondaries/ recurrences

hi all a update on me well my onc rung me fri they have looked at all my scans and have now decided they are all growing well 2 are out of the 4 but because they are within the 20 percent limit whatever that means its classed still as stable ive another node appeard in my lung which they rekon as always been there but to small to be seen and dif radioligest pick dif things up wish they would all do the same job so we knew where we stood im allowed to stay on cap for 8 wks then will be scaned again im now feeling this will be my last lot as mets on the move again was hoping for a bit of time on cap but seems im only getting 7 months on all chemo pain looks like will be on iv chemo before xmas wonderful but we see hope everyone else is doing ok moondog gd luck cheers to u both hope u have a great night off to get my hair and nows done tomorrow woo love to all laura xx
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Re: Triple negative secondaries/ recurrences

Your very good healths, Moondog and Moondog's man!
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Re: Triple negative secondaries/ recurrences

Today I'm celebrating my 1 year wedding anniversary. There's a Delia Chicken, Sherry and Tarragon recpie cooking and I'm enjoying a glass of white wine in the garden. Raise a glass with me ladies!
Moondog xx
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Re: Triple negative secondaries/ recurrences

Thank you Lavendar Lassie xx Stay well..
Dulcie xxxx
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Re: Triple negative secondaries/ recurrences

Hi, I'm wondering if anyone can help me. I was told yesterday by my gp that I have 'highly suspicious' something's on my liver that are more than likely (read as definitely) mets. I'm not surprised as I have been uncomfortable in my abdomen for he past few weeks.
Im now in practical mode. I have some fluid retention in the upper abdomen, it's really quite high and is causing me to feel really tight. Has anyone else had this, know of this? How serious a sign is it? The man at the US scan didn't seem too bothered and I've seen 2 different docs these past 2 days (sickness and diarrhea which was apparently a bug. Feeling better now) and neither have said anything or suggested whisking me off to the hospital. I was given some tablets to reduce the fluid but it was after taking 1 that the vomiting and other started and although the gp said it was just a coincidence I'm a bit nervous about having another, mainly cos I'm in the isle of man and am going home on the boat tomorrow so dont need all of that going on. I'll try again Monday.

The other thing is that I'm seeing my onc on Friday - what questions should I ask? What alternative tests should I be asking for? what shouldn't I put up with?

I would put this in a new topic if I could but it won't let me. I hope you don't mind.

Xx
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Re: Triple negative secondaries/ recurrences

Dulcie calling Dulcie!

Dulcie, Lemongrove has just posted on another thread about the Cyberknife charity
if only I can get the link right.

http://www.breastcancercare.org.uk/comment/2045815#comment-2045815

Phew! Done it!
Lavender
xx
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Re: Triple negative secondaries/ recurrences

Hello Ladies,
I stumbled across this thread while looking at the triple negative heading- I wanted some advice about a chemo dilemma. Not sure if I am 'eligible.'
I was first diagnosed with a triple negative b/c in June 2009. Had chemo (4 ec and 4 taxol), WLE and lymph clearance and then rads. It was a large tumour that time- 5 cms. Grade III.
Then in May 2011, learned I had a brca1 mutation. Had bilateral mastectomies in Feb 2012 and a new cancer was found in what I then called my 'good breast.' It was an occult tumour, ie not visible on scans and 1.5 cms. Grade III again. Triple negative. Had SNB and lymph clearance as one node effected.
I had a lot of problems with one reconstruction, eventually had a completion mastectomy, while on chemo and still not healed (due to rads).
Anyway, no-one seems clear whether they think I have a 'recurrence' or whether its a new cancer. Scans no help.
My onc recommended carboplatin and taxotere and from the beginning was always a bit vague about whether I would have 4 or 6 cycles. He was very open that this was not a conventional treatment for breast cancer but said that there had been some promising results in women with secondary brca1 triple neg tumours.
I went to see Onc just before cycle 5 on Weds. He explained there was no evidence to inform decision about whether 4 or 6 cycles is better. I think he is concerned about over treatment, and although overall I am coping with the chemo. it gets harder and he thought the problems I am having with peripheral neuropathy were great enough to stop. I felt I was put in a terrible position- or course I wanted to stop chemo but I felt that I would have failed if I hadnt had 6, and if the cancer comes back, I will always have this question in my mind. A further consideration though is that I had a 6 week delay due to surgery and he says there is a theoretical risk of resistance.
I wanted to know if anyone here had faced a similar dilemma, or what chemo and how many cycles you had been given?
Rattles
PS
(Hi Lulu, was going to PM you about this, but always feel a bit guilty about using you as a personal advisor, as you know............)
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Re: Triple negative secondaries/ recurrences

Hi All
Haven't posted for a while as find site so difficult to navigate.
Had my WBR x 5 at the beginning of August and then a week off to recover.
Then had to have oodles of fluid drained from peritoneal mets.
1st dose of Eribulin last Monday and slept for 2 days. Next one on monday assuming my count is OK then a week off.
Hopefully fluid building less slowly as off to a friends place in Salcombe at the end of August, which is bit hilly and I wouldn't be able to waddle up the slopes!
Love to all
Bald-again Laurie!
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Re: Triple negative secondaries/ recurrences

That is great to hear, Moondog! Now you can have your haircut!
Just popping in to say Hi to TNs old and new.
Lovely to see smiley Sadie again (however unsmiley you may feel, you always sound it) amd love to your Mum.
and I am so pleased to see Lulu surviving her return to work, fingers crossed for that MRI. And Rawlie's CT.
Dulcie, there are people on here who know a lot more than me about Cyberknife (meaning Lemongrove in particular wave to Lemongrove!) perhaps you could ask in a new thread-or call the Helpline and ask about it? I think you have to have below a certain number of lesions but better to learn from someone who really knows.More fingers crossed that you are settled down for the rads.
Laura, I hope they have settled what the new report should say in their Big Meeting. It is all quite bad enough without these conflicting opinions.
Tara, lovely to be making moving plans especially with new garden plans
Lavender
xx
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Re: Triple negative secondaries/ recurrences

Hi everyone, finally some good news for me. The carboplatin's reducing the tumours so I stay on it for the rest of the course
Xx
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Re: Triple negative secondaries/ recurrences

Dulcie

there are lots of chemos out there so dont feel that your time is running out.... most of the ladies in this thread are in the same boat and there are lots of chemos out there... if theres one thing we all need its hope Smiley Happy xxxx
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Re: Triple negative secondaries/ recurrences

Hi everyone,
Sadie, glad to hear they've managed to ease the pain for you a bit. Good luck with the chemo.
Moondog and Chrisp1e, good luck with your scan results. Moondog, I had an incident this week with my kids where they were reminded that I won't be around "forever". It's so hard to see the impact that has on them. But I think it's better that they know the truth while still remaining positive.
Dulcie, really sorry to hear about your progression. I also have lung mets but they seem to be responding well to chemo.
Laura, that's really annoying about your scan results. It's bad enough waiting for results without that sort of confusion!
Tara, glad to hear you're making the most of your time whilst not on chemo.
Lulu, good luck with your MRI. I am also having a CT scan next week and will then find out whether I am continuing on the chemo. My oncologist has given me some medication to cope with the lack of appetite and nausea that I have been experiencing recently. And that has really made a difference to how I feel over all. Can actually get out a bit more now! That certainly helps to lift the spirits. Managed to have a nice lunch out with the family on Sunday and could actually enjoy the food!
Take care everyone,
Rawlie x
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Re: Triple negative secondaries/ recurrences

Morning ladies....i am most concerned about having rads next week..my wound from mx is looking really bad...red hot and croc like skin..i have had antibiotics and 3 lots of fluid drained..it did look good originally.. when the rads lady did the tattoo on the breastbone..i nearly hit the roof!
The othe negative comments..as onc would say.......The fact you can have the 'runs' up to 6 times a day! Knowing me me..i will be on the 'table' when i need to go!
If my body could not cope with EC...i wonder how it will cope with all this?
My real beef is the onc NEVER will discuss my treatments...she just TELLS me what i am having..I have these now 10 lung nodes but i was in such shock..i didn't ask where they were (cyberknife)? is it possible? My time is running out FAST..with my type of cancer..if this Capecitabine does not work...i am basically F*****d! I don't have time on my side..these little sods have grown from a pin prick in April..to something else...i wonder why they left my CT scan so long in between ...the lungs are more important than the breast ..for me anyway!
When i got the news last week my OH and i where told we would get some 'help' pretty quick...councelling etc...a chat even..and hands on stuff..as we are both ill... we where given a cup of tea and left alone for 5 mins..a bit like a breavement!
I will be here SadieL ..i was worried about you..glad to see you back!
Dulcie xxxx
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Re: Triple negative secondaries/ recurrences

sadiepops its lovely to hear from you and glad your starting to feel more like your old self... hope the minilmal ses continue and pain continues to improve. sounds like mum is coping well.... she has a good role model after all xxx

laura really sorry to hear your news and all the confusion surrounding the progression.... bad enough to hear but when the professionals cant even agree its extremely disconcerting. hopefully you will know more tomoz once they have discussed and looked at films properly.
im a bit of an insomniac at the mo... as you will no doubt see from the time. feeling quite anxious i think about my mri next week.... off to occy health in the morning for a review, then work on friday and a colleagues leaving do too. so probably be MIA again for a few days.
love and hugs to all xxx
Lulubelle xxx
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Re: Triple negative secondaries/ recurrences

Hi Ladies. Sorry, long time no post! Lots of different reasons.
I am shocked and greatly sadden to read Jo / hope has died. She so wanted to make it to September to see her little ones off to school and nursery. It is so sad two little people are now wondering round wondering where their mummy has gone. Just terrible.
Moondog - thx for your thoughts. I can't believe your friends question about the funeral. Stunned!! The kids bit is v hard. Well done with your honest reply to your daughter. I think being honest is the hardest, but best way to go.
Oh Laura it sounds like you are in a really horrid confusing place. Hold on in there. I hope you get answers soon.
Chrisp1e - have you thought about a motability car? You have to get higher rate dla but if you do then maybe worth thinking about. I love mine - he's called Charlie! good luck with your scan results.
Lulu - thx for your good wishes for me and mum. She's on number 3 now nd only gets about 4 clear days between chemos which is tiring. But she's better than she was the first cycle. I do miss her practical help! We do text each other lots though!!
Tara - sounds like you are having a great time off treatment. I am so pleased! House move sounds exciting and positive , as you say, rather than as a response to a crisis. Good luck!
Dulcie - you and me on capcitabane. We will have to share notes. Have you started yet?
Sandra - glad you are ok and keeping on keeping on!! So much Avastin now!! well done!
Rawlie - I hope your se are reducing. Can any extra meds help? Hugs xx
Im hanging on in there! Had another epidural on my spine to try and cover the pain. The pain was significantly worse for a week and now I'm back to where I was. I hope it continues to improve. Went out in a wheel chair for the first time this weekend (energy levels and loosing movement in right leg) - my son did his best but L plates need. I had v mixed emotions! It meant I was able to go out - but it's not me! They still don't know what's wrong with my spine - very frustrating! It's taken me ages to be well enough to start chemo - but I started on Monday. Woop woop! Capcitabane. Fingers crossed minimal se. I can already sleep for England as a se of the pain killers I'm on (OxyContin and gabipanten). I have been a bit low thinking I was facing the beginning of the end. I really was quite ill with the infections, only just realised it. Anyway, I'm here and I'm happy right now!
Love and hugs to all mentioned and not mentioned (sorry!!)
Sadie Xx Xx
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Re: Triple negative secondaries/ recurrences

Hi everyone
Tara, really good to hear from you and pleased to hear that you're making plans and agree that you're best off doing stuff now at your leisure than maybe responding to a crisis further down the line. I think a garden will be lovely too, I'm not a great gardener but love to potter around in my tiny patch.
Lulu, nice to hear from you. I hope you're settling back into work ok and happy house hunting!
Laura, sorry to hear you're having to put up with so much uncertainty at the moment. I really hope you get some answers soon.
Mrs Blue, here's the link to the secondaries forum, it's also a sticky on the Living with Secondary Breast Cancer section. There's an overview day on Thursday 18th October followed by monthly meetings thereafter. I spoke to Steph at BCC about it and it sounds like an excellent resourse.
http://www.breastcancercare.org.uk/community/forums/living-secondary-breast-cancer/living-secondary-...
Sadie and Laurie, how are things going, I'm thinking of you.
Hi to Sandra, Chrisp1e, Rawlie, Dulcie and anyone else out there.
Moondog x
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Re: Triple negative secondaries/ recurrences

Moondog, what "secondaries forum in London" is this? (I'm not triple negative but I am on chemo for liver and bone mets). I've probably missed a posting from BCC, somewhere on these forums. Can anyone post a link or give more info?
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Re: Triple negative secondaries/ recurrences

Laura I'm really sorry to read you have this uncertainty to contend with. Hopefully they will reach a conclusion tomorrow, or order more tests to get it sorted out for you. In the meantime keep your chin up chicken.
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Re: Triple negative secondaries/ recurrences

Hi all sorry for not posting but can't get to grips with this site well I've just had scan results at moe I'm unsure if gd or bad I think someone as made a boob it shows a slight increase to right lobe but report size says dif they can't agree with radiologist so tomorrow they are having a Meeting with top dog in radio to try work out wat is happening as its doubled in size since may but they are only reporting slight also another 2 sites on in each lung as slipped through net as I'm meant to have one in each but the reports wording sounds like 2 god nos what going on will catch up when can understand all this tc all hugs laura
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Re: Triple negative secondaries/ recurrences

Hi everyone,

Thanks for good wishes for my dad. He's back home but having Alzheimers he's quite confused about everything. it seemed his blood pressure had plummeted and they've had to discontinue 2 of his meds. That has upset him too as he knew how many tabs he got in the morning and at teatime. He's to wear a 24 hr blood pressure monitor next week. He also thought he was away on holiday for a few days with my mum!

I loved the Tattoo. No I'm not Edinburgh based. i live in East Kilbride 8 miles outside Glasgow, but have car will travel! My car is leased thro my work as I'm a Community Nurse so I'm hoping to be able to work for a while longer to get the use of a decent car. Don't reckon I'll be able to afford one once I have to stop working. Am hoping to go back to work on 4th Oct. Will only be at work one day then off to Somerset for 2 weeks with OH and our Golden Retriever Skye.

Thinkin of you all. Sorry can't remember individual posts! Might still be chemo head. Might be the bottle of wine. Regards.
chrisp1e xxx
Member

Re: Triple negative secondaries/ recurrences

so quiet around this neck of the woods these days. sadie thinking of you lots and hoping you and mum are coping ok with treatment.

tara glad things are looking up for you and good luck with the move... we are thinking of moving house too but only just looking at the mo.

moondog fingers crossed for your scan.

chrispie sorry to hear about your dad hope hes on the mend now.... did you enjoy the tattoo? are you based in edinburgh? me and scottishlass are also from the burgh.

dulcie hope alls going ok for you

love and light lovely ladies xxxx
Member

Re: Triple negative secondaries/ recurrences

Hello darlinks
Welcome to newbies, and apologies to the long-timers that I have been absent for a bit. My head has been in a different space for some inexplicable reason, but all good as I am really enjoying my spate of no treatment, and am regaining the energy that I haven't had for such a long long time. I have never been a runner, Moondog, but I am surprised now to suddenly feel that I can start exercising again. Maybe cycling... I think there will be times you will feel ok to run, but I guess not while you are on treatment. My Macmillan service has a physio, and I am thinking of getting advice from her. Don't want to end up head over heels at a traffic light or whatever.
Life has been busy and there are changes ahead. I am seriously thinking about moving now to a ground floor flat. OH was thinking of moving in with me (we haven't lived together before...) but is dithering. So upward and onward for me, and plan to move while I am feeling well rather than in response to a crisis. I still think about the green banana quandary. (Does anyone know what I mean? I think it was Laurie told that story?) But you just have to make the best decision for the moment don't you? I have found a great flat that even has a nice terraced back garden. I haven't had a garden for years so will be fun to do stuff outside for a change. Anyway, am waiting from the landlord to see if he intends to do some essential work (damp from gutters etc) before I move in.
Sadie, sorry re your persistent back pain. Let us know if the spinal block was any more successful this time round. Thinking of your mum too. Sorry to hear of the progression Dulcie. I have lung mets in both lungs but no problems from them at this point, 18 months on from diagnosis. Rawlie, so sorry the SEs are wiping you out. I know that when you are in the midst of it it is hard to believe it will end, but it will, and you will feel more back to yourself after the treatment is finished. Laurie, well done getting through the WBR.
Love and big hugs to everyone else. Often think of Jo/Hope and send a few prayers for her loved ones.
Tara xxx
Member

Re: Triple negative secondaries/ recurrences

Hello where has everyone gone?
Dulcie xxxx
Member

Re: Triple negative secondaries/ recurrences

Oh, Chrisp1e, sorry to hear about your dad, I hope he's on the mend xx
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Re: Triple negative secondaries/ recurrences

Hi all
Crisp1e, I'm waiting for the results of my latest scan too. I'm quite concerned even though I've no reason to believe the Carbo's not working. If it's not, I switch to Docetaxel. One silly thing is that I really need a haircut but am too frugal to pay for one if it's going to drop out anyway with the tax!
I've had a couple of tough questions this week. My daughter found my running water bottle and asked whether I would start running again when I'm better. I told her that I would never be completely better. Although I've been as honest and open as I thought appropriate (she's 7), she looked very shocked. I've never been so direct before. I don't regret it, but, well, you know.
The other odd question was from one of my best friends who asked what sort of funeral I'd like!! Yooo hoo! I'm still here!
Hey, is anyone here thinking of going to the BCC secondaries forum in London?
Hope you're all getting along ok.
Moondog x
Member

Re: Triple negative secondaries/ recurrences

Sorry not been on for a while. Chemo is finished now and have been busy with life. My Dad was in hospital for 5 days after collapsing at the Town centre while my mum was in M&S! So between that and the grandkids I feel like i've never stopped. Last night I was at the Edinburgh Military Tattoo so am a bit tired today.
juls1974 and Dulcie - sorry to hear about your mets. I was diagnosed with bone mets and and a tumour in a lymph gland in my neck in Jan 2009 and then this year I grew a lump in my neck which is neither hormone nor Herceptin receptive. Had chemo x 6 and am now in remission. Had CT scan yesterday and will get results in 2 weeks. Thinking of you both and sending hugs your way.
sadie - sorry you're having problems but glad your mum has coped with 2nd chemo without having to be hospitalised.
Take care. Regards to all of you.
chrisp1e xxx
Member

Re: Triple negative secondaries/ recurrences

awww Dulcie thats pants hunny.... hope you dont find the capecitabine too hard going andthat it zaps the squatters.

sandra im loving the olympics too... cant survive without my daily fix and isnt it weird how we all suddenly are experts in everything from dressage to tai kwon do.... lol.... hope the chemo is going well.

take care everybody
Lulu