Good evening my dear friends
Gosh there are a lot of uncertainties happening for so many of us. It is the nature of the disease I guess. Sadie and Jo - hope you can get that pain under control. I’m pleased to be using Amitriptilyne again. It seems to work for me. Sadie - re benefits - my problem is that I rent my house here but am still paying a mortgage in Eire. This means that the latter may mean I don’t get HB but noone can tell me for sure until I apply. I can’t apply till I give up work. So when the time comes it’ll be sink or swim. Have had advice ++ but cannot get reassurance. Complicated and made worse by having no insurance on mortgage in Eire. But I try to comfort myself that there are a lot of people a whole lot worse off than me.
Feeling relieved to be on the anti bs now and am going to lay low over the weekend to give them a chance to kick in.
On mobile so can’t check through messages as I write but sending lots of love to you all. Hope quiet Tina is resting up and getting better.
Night night
Tara xxx
Tara and Tina hope your both breathing a it easier now your on the ABs… Tara what a pain in the butt about the benefits situation… But I guess ultimately if you feel you need to cut back on work then you just need to go with it and hope for the best… But it does sometimes feel that those who cheat the system get the most and the honest hardworking folks get penalised.
Talking of benefits my daughters dla came through… Was most surprised to read the award as it had been reviewed rather than renewed and it said she now gp get higher mobility ‘because she cannot walk’ she can walk! Had to phone today and they are looking into it… But no wonder the government is short of money when they do daft things like that… In her claim it clearly says she walks and needs help getting on and off buses and needs somebody with her when she is walking about… Silly people!
Hope and Sadie i hope your pain gets managed better… Sadie the SEs sound awful no wonder your feeling pants! Good luck with the marsden.
Laurie totally makes me LOL now at the nice shaped head thing… Even one of the breast care nurses said it to me! Followed by ‘your looking really well’ … You’d think they’d know better.
Love to all you lovely ladies
Happy St Paddys Day tomorrow
Happy Mothers Day on Sunday.
Hi All…A quick post!!
Mothers Day tomorrow, nd I know it is very mixed for many of us. So grateful to be here nd hug our precious children - but then, in the back of my mind is ‘how many more’. Massive massive hugs to all of you.
I plan to live in the moment, enjoy every minute (DD netball match, DS footie match, DDs off road driving lesson nd meal out with Mum nd Mum in law) - nd not think beyond…(easier said than done though!!).
More hugs posters nd lurkers alike!!.
Sadie Xx Xx
Hi all yes a hard day but we will enjoy it as much as we can and hug our kids loads happy mothers day to everyone and will be thinking of our mums that are not here anymore love to all xx
Just saying a huge hello to all you lovely people here and hoping that if you’re a Mum or a daughter or both you can experience the depth of love from your folks.
I’m not in either camp myself but realise how important these days are for experiencing some of the dilemmas you are facing…
Thinking especially about so many of you on this thread.
I too will be thinking of my Mum who lost her fight many many years ago…and know all too well that these are emotional days in so many differing ways.
Love and tight hugs to you all and enjoy those tight squeezes with your own.
Wx
Patrick age 20 announced he had blitzed the kitchen. When I went to look he had also bought me a bunch of white Alstremeria and arranged them in a vase for me. Sweet! As I write he’s making me scrambled eggs on toast as I languish in bed recovering from chest infection.
May you all have something to smile about today!
Tara xx
Hi Tara - what a lovely post! Yes, lots to smile about today. My daughter put a post it note saying ‘love you lots’ in my bed - so when I went for a snooze I found it! Lovely and precious.
Im going to the Marsden tomorrow and want to get tested for a ???androgen receptor that some of you have been tested for - but im not sure if ive remembered the name right. Can anyone confirm this is the right thing to ask for - Androgen receptor??
Thank you all and really do hope all you Mothers and Daughters out there have had something to smile about today - but also sparing a thought for the Mothers shining brightly with the stars in the sky. (Maxine - I miss you, your boy is doing fine!!)
Sadie Xx Xx
Hi sadie gd luck for today yes thats the right name get all the info you can and try push for cyberknife do you know who you will see? Hi all hope you had a lovely day and got spoilt loads and everyone is coping ok Tina hope your ok jo how’s the cap doing how u feeling hugs Laura x
Quick question re Xeloda - is this what Jo and Laura are referring to as cap? ie capecitabine? If so I have more questions to ask!
Hope everyone is ok and that quiet thread means calm lives. Hope the Marsden visit went ok Sadie.
Hope your chest infection is calming down, Tina.
I managed to get up and about today and feel strength returning.
Good night all.
Tara xxxxx
Hi all Tara yes cap is xeloda I’m doing v well on it only se I get is stomache cramps and d but only last for day or 2 when do u start ask what you want yes it’s been v quiet on here lately how everyone is ok Tina how did onc meeting go have you started xeloda yet how are you hope u got on ok sadie at the Marsden glad y feeling a bit better Tara jo how u getting on hope everyone is enjoying the sun love Laura
Hi
I think I may have posted on here before.
I was diagnosed with originally wide spread DCIS . After my mastectomy a 14mm invasive , grade 3 lump was found, no nodes or vascular invasion .
I have completed my chemo and do not need rads .
After treatment had finished I was so relieved and still am but now I feel a little scared about it coming back .
I did read a great article the other day saying that there is evidence to suggest that that cutting fat from the diet and exercise that reduce a recurrance in tn ladies so I am trying to do that. I am also taking vitamin d and statins as evidence shows that they may prevent breast lumps.
I guess I’m doing everything that I can but this disease is so unpredicatble . We may be cured but there is no way of telling which is frustrating!
Anyway needed to get that off my chest!
Hope that you are all enjoying this lovely day
Sarah
x
Sorry Ladies I may have needed to start a new thread but not sure how to!
Evening Ladies!!
Sozza - Hi!! Yes, I think it would be best to start a new thread. We mostly have secondaries on this thread so may be some help - but have a look at the side of your screen nd you will see headings. Click on one - possibly ‘others in same situation / trip neg’ and then look at the pink bar at the top sayiny ‘post a new thread’ (or something like this???) Hope this helps!!
Laura - Hi, the SE sound very copable with! Hard im sure, but v differnent to IV chemo. Thx for your help with the drugs name. I have been reviewed for cyberknife and it is not suitable at the moment (nothing suitable to zap!!)
Tara - So gald some strength is returning. Hope you get lots more soon!! Hugs.
Tina - Hope you are gaining strength too?? Hugs and one more!!
Hi Welshgirl, Lulu, Sandra, Jo, Sarah, Lav Lassie, Zile - and anyone else ive missed. I hate missing people, but memory not great. Put the cucumber in the recycling bin outside yesterday - kids found it. Thought the bin was the fridge - made us laugh though!!
I went to the Marsden yeaterday and was reviewed by the Prof. He was positive and said my next chemo should be the capecitabine not back to carboplatin (no evidence to show going back to one is effective and after Tina’s experience this seems to hold true!). So I read the Capecitabine thread last night and it seems some ladies are on it for years. I know several on here are on it too!! Anyway - he also said there are lots of others available (gave me a verbal list that I cant remember them - just happy to hear lots.) AND he said there are LOTS of very promising new things coming along forn TNBC - so HANG IN THERE GIRLS - new stuff is coming!!! He has sent off for Androgen receptor testing for me from the Mx I had done 3 years ago (they still have bits of me in the hospital - weird!!). So that may be a possibility. He said 30% of TNBC have the receptor and the new drug looks good (acts like Herceptin in TNBC). So, all I can suggest is that you all think about being tested as some of us have to have it! It is a trial, but looking positive!! It is using a Prostate cancer drug - so nothing ‘new’ just used in a new way!
He summed up by saying my lungs are ‘not too bad at all’ (which I think is Doctors speak for GOOD!!) - so I felt very reassured! It was a long way and ive been tired today - but managed to get my Motability car. Chuffed to bits with it!
Hugs to all and I hope everyone is quiet cos they are OK.
Sadie Xx Xx
Hi all
Sadie thanks for the very heartening post re your visit to the Marsden. I’ve overdone it today so will post when I’ve recovered but just wanted to put in an appearance.
Hugs all round.
Tara xx
Dear all
Am sorry not to remember all names as on my phone and am sure painkillers have turned my brain into more mush as memory is awful. So glad you went to marsden sadie as I found them very nice too.
I was told 15 pc have androgen receptor but unfortunately I was not one of them so lets hope you are as someone has to be. I was tested for pk or something which is another receptor but didn’t have that.they recommended capecitabine too for me as well as my onc so reassuring we are told the same. Is SO GOOD to hear positive news in the wings hopefully as they must know more than we do about new treatments.
I saw Oncologist last week and tried to reassure me as I’ve been so anxious on capecitabine as want to be on it for a long time. He said he has lots more options so has helped a bit but think pain from last several weeks with fractured sternum, back and liver snd chest infection has got me in a bit of hole as not been able to go out with kids etc. I started cycle 2 today of capecitabine and avastin so hoping a lot easier than first one as ended up in bed quite a lot. I need another blood transfusion so another hospital day but hope haemaglobin will stay up.
I hope Tina and Tara are getting stronger too.
Sorry to write negative feelings as know you are all having a hard time.
Praying that we will all do well on the peachy pills (capecitabine) whilst waiting for an even better option.
Love Jo x
Sadie
That’s sounding great… Good luck with the xeloda… It does seem pretty popular and effective.
Lots of positives.
Sozza recurrence is the fear of the majority of people with primary cancers so your not alone… Regardless whether it’s TN or not most people who have had cancer always have a concern that it will come back or it will spread or progress. However for the majority it will not return.
Hi to the rest of the gang.
Lulu xx
Hi all sadie so glad the Marsden went ok its great news new drugs are on the way I’m under the Marsden but no one mentioned that to me I’ve also was neg for receptors but he sd most of us tn girls are a pain really but hoping cap work for long time I’m lucky at moe no se only bit of d and cramps but I can do as much as did before went on chemo are u being treated there or was it just for a review my onc is lovely you prob saw him. Lots of love to everyone else tc Laura
Hello ladies
hope everyone is ok- have been reading just haven’t posted 4a few days. Thanks for pm’s + my apologies if my absence has caused concern. I was just aware that I was turning into mrs misery+ didn’t want2 keep posting + moaning. I also didn’t want this 2turn into the tina show iykwim?!? Anyway, just posting a quick update + will catch up with everyone’s news personally over the next few days…
Been up + down really but had some hideous pain issues which have really pushed me to my limit. Leg pain has sorted itself out, dvt ruled out so docs assuming it’s spine-met related? The main issue i’ve had + still got has been the breathlessness + night time cough, but the biggie has been a severe pain in lower left lung/ rib which is beyond agony when I cough. It worsened over the w/e + by Monday, I was a bluey tinge as i couldn’t let myself cough the wheeze due to the immense pain. Had hubby putting his full weight on tge area when I did have to cough but it was so bad, even morphene wasn’t touching it. My new mac nurse prescribed a few more drugs yesterday + sum mega strong anti inflams made all the difference in combo with the other cocktail. So I was able to wait til my hosp appt tday to see a doc.
So my regular onc is away this wk which I knew but it was arranged I would see her colleague today (she’s great- seen her b4). Anyway she was very thorough, and was a little concerned at my general breathlessness + description of pain. She admitted me for tests so I’m in hosp tonight but I’m glad really to be getting a real thorough once over. She said she will get all my meds reviewed again, get physio 2c me etc (on top of scans etc) and talked me into staying in). Everythin has been really efficient, I’m in a quiet bay, comfy, food is great etc so I’m good, and hopefully I’ll be home tomorrow with my 1st dose of cape in my system.
I’ve had a ct today to check for a PE (lung clot). This was neg but I’ve had no formaal feedback as to the scan itself, any changes etc. Funny thing is that the agony is on my good lung, which is reassuring me that it’s not ‘just’ cancer related, if that makes sense? Onc thinks I’ve badly damaged a muscle coughing but prob cracked a rib too- awaiting xray reports etc on that but it would explain the pain levels if that is the case.
Onc has agreed to let me defer the bone meds til next cycle. She has promised that she will get me on the capecetabine in the next few days. She just wants to get my pain under control+ make sure there’s nothing else major going on before I start. I’m happy with that + praying the cape is kind to Me but hard on th BC. Nodes at clavical really swollen + it’s stressing me out looking at them. Oh, and my already thinning hair started falling out in clumps yestrday- it’s bloody everywhere. Will shave whatever is left when I get home.
So things been pretty full on, coping so much better now pain is bearable. Have been enjoying doing bits of normal stuff + hoping the chemo improves things + my quality of life improves (+ quantity also). So difficult seeing what this is doing to my hub, mum+ dad. Try to not crack on when I’m struggling but had a few really full on pain days where I just can’t hide it. They are brilliant but it’s naturally hard for them to see me suffer especially with it being one thing after another for the last few wks.
I will let u know tomorrow how things are, fingers crossed I’ll be home, back on chemo + on the up.
I think of you girls all the time + appreciate your support as you know 
Will catch up properly over the next few days.
Just to mention quickly again tho, those of u looking into trials, there is a new+ exciting one in harley st at the Sarah cannon research institute for a new tnbc receptor. It requires tissue testing but defo worth looking into. It’s not the same as the prostrate trial so worth investigating ladies. I will be discussing both trials with my onc. Also, has anyone heard if there has been any developments with the marsdens plans to run a parp trial for brca neg ladies? I know it was being planned 12m ago but have heard nothing since? It would be an exciting opportunity as there is nowhere else in the uk offering parps to those without the genetic mutation.
Love to everyone on here, Tina xxx
Just read that back… ‘Quick’ update lol… Sorry xx
Hi Tina so glad u posted was getting worried thanks for e mail pls don’t feel y taking over or moaning we like to hear how you are and we are here for the highs and lows sorry your in pain and back in hos but glad y getting a gd check up hopefully u might know more today when u see someone asked them about the ct don’t sit in silence i will just like to say my oh had a bad chest inf cough at Xmas and he had terrible rib and lung pain he had to hold it when he coughed i sent him to ae but they sd it was a pulled lig and mussell dam due to coughing and it cld take 6 wks to heal he still as a bit now 3 months on so yours is prob same. I got to ring bcn this morn got a few bruises on legs so might be chemo or just me being clumsy I’m feeling gd on cap i hope u can feel the same i like y quick post lol love and hugs Laura xxx hi all hope y doing ok xx