Oh Tina, so many hugs sent your way. You know Carboplatin has worked for you before!! It’s just a horrid, unfair, cr** disease.
More hugs,
Sadie Xx Xx
aww tina im so sorry to hear your news must be a bad day for us all my bcn rung today sd the op they put me forward for turns out to not beeing a option also cyberknife no reason yet as to why just not a treatment option will question this sorry not be on for a while been busy enjoying my chemo break and doing my lounge ready for xmas hi to everyone else hope your doing well feel down today and really upset but a we know our situation dont we big hugs tc laura xx
Hi Tina
Sorry to hear your crap news!
Fingers crossed the carboplatin works well again and obliterates those b*****d little cancer cells.
Stay strong and try not to panic, easier said than done! Hopefully if the nodes and lesions are tiny they will be easier to kill off - xx
Well said, Nicky. I agree.
Love and hugs to you, Tina. We are all here for you any time.
Hi, too, to Laura.
Sarah xx
Oh Tina I’m so sorry I know it was your gut instinct but doesn’t make it any easier to deal with. Hope the carbo does the trick again. Sending oodles of cyber hugs to you sweetie xxxx
Laura very sorry to hear they have pulled the rug from under you yet again. Sending oodles of cyber hugs to you too xxxx
Hi Sarah I think there is new evidence from America that actually removing the tumour is beneficial in helping halt disease progression… I know in the past surgery following secondary diagnosis was rarely done… Do you have a genetic mutation? With your personal history you could have a test for brca1/2 if you wanted… I had a hormone pos 7/8 and triple neg in the other side… It’s a sneaky wee bugger changing itself… Will you be starting hormone therapy like zoladex and arimidex? Good luck with your decision.
Love to all moulting Lulu xxxxx
Thanks ladies your kind words of support are much appreciated 
The liver news wasn’t expected but the rest was no surprise. The news has floored my oh and mum but think we are all in a bit of shock really. I haven’t shed any tears as yet but I’m sure they will come. Onc was very positive + kept assuring me that developments were tiny but organ involvement obviously takes things to a whole new level.
Sarah, welcome. I have also heard that removing a breast tumour can have survival benefits when stage 4. I’m another youngie dealing with all this crap with a young family. BC + particularly tnbc is an absolute shitter 
big (((hugs))) to all xxxx
Just to say Tina and Laura, I’m so sorry to hear your news.
Tina, I’ve had a number of very tiny lung modules for around 18 months, although we didn’t know that at the time. They were there at my original scan and have grown just a little since then. Now I’m on gemcarbo I’m hoping that growth will slow down even further and I hope it’s the same for you, or better still that these spots disappear completely for you. I’m keeping everything crossed for you.
Laura, I can’t imagine how you must be feeling, to have really positive options just taken away from you, without explanation. I hope you get to the bottom of it and they have a really good reason. It sounds dreadful.
Sending love and hugs to you both and to everyone going through this. I hate breast cancer, such a cruel, indiscriminate disease.
Wendy
xxx
sorry to hear your news tina and laura.
thanks for your replies and welcome! Lulu ive been tested for brca 1/2 as my aunt passed away aged 43 from bc but results were negative. At the moment my onc wont give me hormones as she wants me to try xeloda indefinatly. also they are unsure as to whether my bones are hormone plus or neg. So confusing its really battering my head! Also could i ask if anyone has bone disease do they have regular bone scans? my last one was march and my onc says they have no plans to do any more despite further new pains. yes tina its such a shitter isnt it but at least weve got our tots to keep us going! mine are struggling with the whole baldness thing at minute. must be quite scary for them eh.
love to u all xx
Hiya ladies
Tina. So sorry to hear of your progression, it’s gutting news isn’t it. But try to stay positive, carbo will zap it again for you. Glad to see there starting your treatment next week. Hugs to you(((x))))
Sarah. Sorry you’ve had to join our page, but welcome, sorry can’t answer any of your queries, but sending you good wishes and hugs too.
I’ve been having chemo today, just got home, fingernails are ok, not got any worse anyway !
Hi to all and hope your doing “ok” today
Luv n hugs
Sandra xx
Hi Sar
I had to request a bone scan, as I haven’t had one for 18 months since my secondary diagnosis. The oncologist ordered me one to rule out progression, as I have been having pains on my skull. He did say that they aren’t useful other than original diagnosis, or if there is a fear of progression, as Healed bone looks the same as affected bone and they aren’t any clearer whether treatments have worked! but since I have had liver progression, they are only really concerned about Ct scans and I don’t think they have given much consideration to bone progression.
I am on xeloda without to many problems - at least your hair will grow back!
hi ladies … laura am so sorry to hear your disappointing news it really messes with emotions …dearest tina i am so sorry abouit your progression it just so CRAP but am sure the carb will blitz the little sh***…hello and love to everyone …i have been in hospital since wednesday came out last night had to have pleueal effusion drained could hardly breathe so awful, they managed to get nealy a litre from left side but only 250 mls from right so had 5 more goes but the bloody stuff wont budge and i did cry on the last attempt just couldnt bear it ,so am back home breathing much better but not perfect and i had call from the christie my trial is no good after review with recurring on tax they think its better to just start gem/carb next friday will get scan results then as have been told they were ok but think that meant to start the chemo not had in depth chat yet,my remaining breast is rock hard itchy blue and purple but that has has biopsy too to see what type it is…have been low and crying just one thing after another had loads pj days just feelso rough everyone on here seemsto be so much more active than me but i really try…sorry for long post but lefthand typing takes me ages as right one still painful and hand numb… sorry to bleat on but need to get it all in post while up to it, so any info on gem/carb please good orbad and sending you all hugs and love rachel xxx
Rachel I am so so sorry to hear what u have been through this week It sounds absolutely awful to say the least. I was starting to worry when hadn’t seen u posting but hoped it was due to ur sore arm. I’m so glad ur having carbo instead of tax as we had a similar poor response to tax initially so hopefully u will have a similar FAB response to carbo. Got everything crossed, will pm u later once dan in bed xxx
hope everyone else is ok. I can’t shake this virus off, really chesty which isn’t good given my already wheezy chest. Overdosing on manuka to get me fighting fit for chemo next wk.
Love to all xxxx
Oh rachel my lovely thats just so crap hunny… Everybody seems to be getting sh***y news this week… Im glad they have managed to ease some of the pressure from the PE though, that will make life a little easier.
Hoping the carb does the trick and enjoy those pj days dont be worrying that you arent doing much just rest up and take it easy.
Tina hope the mauka helps zap those wee infectious bugs.
Love to all xxxx
Hi Ladies - What mixed news from all of us! Rachel - I am so sorry it is so hard. Ive PMed you and continue to think about you nd send you hugs! Tina - back to chemoland!! As you said to me before I started Carboplatin, it is ‘doable’ and hope it has the same good effects as last time. Laura - I hope you are getting some answers to your questions! Its no good just saying ‘no’ - you need to know why!
Im just upright again after Carboplatin 3. My platelets were super low (74) and had to redo bloods before they would give me the chemo. My Reg has been promising since August to refer me for a scan w/b 21st Nov. She was away on holoday this week, so I saw someone else and guess what - she has not refered me!! I know it is only a small thing, but I wish I could trust the medics to do what they say!! I feel I have to double check everything all the time. If I was not ‘driving it’ ive no idea what would be happening. Ive even heard her say ‘ive no idea - ask sadie’ when the nurses were asking about steroids!!! I do like my Onc - so I do not want to change - I just want my reg to WAKE UP. English is not her strong point either - please dont miss understand me! I have no problems she is from another country - but COMMUNICATION is really important, and it is really hard! Anyway…i feel better for a moan.
Hoping to go out to watch son play footie this afternon - would be nice to get out!! (Footie update - they lost 8-0 woops!!! But he got man of the Match!!)
Hugs and smiles to all
Sadie Xx Xx
Dear All
Sorry not to have posted but post dissapeared into cyber from my iphone. I have not checked in so sorry so later tina to reply and sorry to hear your news but carbo will zap. Try not to think of organ involvement as i had from start and my Onc says how we respond is of importance not where is as is a systemic disease.
I am sorry rachel that you have been so unwell too - is crap and am sending you big hugs and prayers. I am sorry Laura you cant have the surgery but the Marsden I think are tops and there must be a reason and maybe there is another option. I know you had androgen tested - did you have all the other receptors checked as I went to marsden on friday to research unit and am being tested for androgen receptor and pkinase and other receptors in hope they have a drug to clock receptor. They have identified 50 mutations in pathways I was told but are all phase 1 trials.
They advised to continue on carboplatin/gem. I did not have day 8 as a rough cycle with lot of liver pain and nausea and may not have day 8 treatments. In one treatment though two nodes gone from 3-4 cm to a grape so is working and pray continues to in liver and elsewhere including chest and nodes. There seems a few of us on carboplatin now - i was v nauseous so am taking additional anti nausea after as started day 3. I get more tired than on taxol but feel much better on day if any help rachel.
Love to all others and hope everyone okay.
jo x
Hi all I’ve gtg to Marsden wed to find out why they can’t do operation or cyberknife then onto next challenge fq so sorry to hear about y arm etc sending u all big hugs hope no only had the one test as far as I know never mentioned any others I never went to research centre they sent for my tissue as far as I’m aware I’ll see wat wed brings love to all Laura
Hi All
Ive only had one carbo/gem and bloods v low esp haemoglobin so need blood transfusion. Very dissappointed as only first treatment and want to get through 6 as first one showed such good response. I am having treatment today but then transfusion in day or so. Hope is not the case needing transfusions every time. Has anyone else needed on carboplatin ?
NOt sure if diet helps - does anyone know to raise iron as dont eat meat but do eat spinach, kale etc. Least I know why tired !
Hard day today as also would have been my little boys 5th birthday today who died.
Jo x
Hi Jo
Big hugs to you on this day. My thoughts are with you.
I am on gemcarbo and have had two cycles. I had to miss day 8 on both cycles as bloods too low. I have been told that what I eat and drink has nothing to do with it, I just have to rest, but it is so frustrating as want to get through the treatment.
I had a blood transfusion last week to try to help but still feel very tired.
Good luck with your treatment today
x
Oh Hope / Jo . I am so sorry. I also lost a Son and Birthdays are really hard! Try nd remember the smiles nd cuddles I hope you had. Life is so unfair. I will light a candle for him tonight.
My platelet levels are struggling on Carboplatin. I also see a homeopathic Dr who I feel is helping with blood counts. Worth a try? Anyway, hugs and more hugs.
I’ve just had a no from Marsden about cyberknife (too many mets) and a speeding ticket!!! Aaggghhhh!!!
Tina - when do you start carbo?
Sadie Xx Xx
Just posting to say i think about you all here every day, but today especially love to Jo.
Lavender
xx