Hi Ladies, I just wanted to let you know my mum passed away in the night. It was a bit of a shock and a little bit un expected.
I just wanted to say a big thank you for all your help, advice and support you have given me. It has really helped me understand what's been going on with my mum and this awful disease. I hope you all continue to stay strong and be healthy and continue to win the battles.
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Thanks ladies for all your kind words and advice. Because of mums confusion she can't really say what she wants. When she was told of the spread recently her words were 'we've got to give it a shot', which sums my mum up through this whole thing this time around. She was looking forward to so many things.
Angelfalls, she's had one dose of taxotere. She had arimadex after her initial diagnosis in 2006 and after falling ill from the taxotere they put her on aromasin. That's all shes had.
Today I've spoken with my dad and it's been decided mum is going into the hospice today.....
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Hi, not sure where to begin or where im going with this. But i m hoping someone here maybe able to answer my questions.
Yesterday my mum was told she wont be having anymore treatment for her secondary breast cancer. She was diagnosed back in April with secondary spread in the para arotic nodes around her stomach area, under arm, small nodule in her lung with minimal plural effifusion. She underwent one dose of taxotere chemo at end of May to which she then became really unwell and on the verge of dying when they diagnosed hydrocephalus on the brain. She underwent a brain shunt op and at that time discovered she'd got skull mets but the soft tissues in her brain were clear. They did also find very tiny particles in the celebral fluid which surrounds the brain. She made a massive recovery and was almost back to full health, other than a few minor mobility issues. Her other body scans had shown the cancer hadnt progressed and was quite stable so they put her on Aromasin tablets to help stop the growth. She then had 5 days of whole brain radio therapy in august to zap the cells in the fluid, which she recovered from really well.
She had a follow up appointment with her oncologist, during her peak health, in early sept. It was decided that they would re scan her at the end of sept to check on the spread and if still stable she would hold off having more chemo and remain taking the tablets. A few weeks later she became unwell with what they thought was a urine infection, she had all the symptoms including some mild confusion. She was given antibiotics and sent home. A week later she hadnt improved so spent a week in hospital treating the urine infection and sent her home when her markers had returned to normal, although her confusion remaind. Her appetite had gone right down and some of her sickness had returned. Another week passed and she was back in hospital again. Out of all of this nothing was ever found.
She had her routine body scans in October and saw the oncologist yesterday. The oncologist has decided not to continue with anymore treatment. The head scans have shown no change, no better, no worse and def no mass in the brain itself. She has some more growth with in the nodes so was taken off the aromasin as it wasnt working.
I guess what im asking is why have they stopped? I spoke with my dad last night and now on thinking it all through im at a loss as to why they are stopping. I dont want to ask my dad again today as i know this is all very stressful for him right now. Hes questioning has he done enough for her. I thought they only give up when they have exhausted all treatment, yet my mum has barely had any. I can see that giving chemo is not easy, its a tough treatment and maybe because my mum is weak right now she wouldnt be strong enough. But why else do they not try anymore? i know a few weeks ago when my mum was in hospital she said she wants a shot at treatment.
Thank you for any advice you can give xx
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Hi, I read your post and it could almost have been written by me. My mum is currently in hospital, 3rd time in 3 weeks with confusion, along with several of the symptoms you describe of your mum. My mum was diagnosed with breast cancer in 2006 and her secondary diagnosis in April. She went down hill with confusion soon after her first chemo and after several weeks in hospital they diagnosed her with hydrochepalus, they also found skull mets and tiny cancer particals in the fluid that surrounds her brain but not in the brain itself. She had a shunt fitted and recovered really well. This was back in July. I felt exactly as you do, she cant go yet this has happened too quickly etc She has since had whole head radiotherapy and again recovered well. 3 weeks ago her confusion returned, along with a few other things but with all her time in and out of hospital, they have yet to explain what's happening. I dont think they really know.
I too am not local and have 2 small boys. It's heart breaking that she doesn't acknowledge them and horrible thinking we could lose her too soon. She had a very close bond to my eldest (5) being her first grandchild and he is very aware of things. I don't really know what to say to you,if like me, it consumes my every min of free time thinking about what's happening and looking for answers and hate not knowing what's happening to my mum. My mum had routine scans last week and we're awaiting the results, due on Thursday am. They were originally to see how the cancer was going and if stable she would wait for chemo but if it had grown she would have to start some chemo. Like you, I don't know if she'll be deemed well enough. This is such ahorrible disease and I never in a million years thought we'd be dealing with this year. I don't know how you cope, you just get by each day and hope for something positive. I hope you get the results and treatment for your mum and don't waste a single day xx
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Taken from a link I received today from breakthrough.org.uk xx
NEW ADVANCED BREAST CANCER DRUG A new drug could give several extra months of good quality of life for patients with the most common type of advanced breast cancer. The news has been welcomed by Breakthrough Breast Cancer as "one of the biggest advances in breast cancer treatment in many years."
Share this page Facebook Twitter Digg Delicious Google Email it Print it Afinitor® (everolimus) tablets, in combination with an aromatase inhibitor, has been approved for use by the European Commission.
Dr Rachel Greig, Senior Policy Officer at Breakthrough Breast Cancer, said: “Everolimus is one of the biggest advances in breast cancer treatment in many years. This drug could make a massive difference to thousands of patients with advanced breast cancer. While this is by no means a cure, it could give patients several extra months of good quality of life with their families.
“Everolimus needs to be assessed by Nice but we are strongly backing it to be made available for those who need it.”
In the UK, breast cancer is the most common form of cancer in women, accounting for approximately 31% of all new cancer cases. It is estimated that some 30,492 women have the advanced breast cancer form7, . In terms of the patient population in which everolimus is approved it is thought that up to 14,000 patients could benefit from the therapy.
Advanced breast cancer is an incurable disease and current estimated life expectancy for patients is approximately 18-36 months after diagnosis . The most common form of advanced breast cancer is the oestrogen receptor-positive type which accounts for approximately 75% of all breast cancers . The current cornerstone of treatment for women with advanced hormone breast cancer is endocrine therapy, but most will eventually develop treatment resistance to endocrine therapies such as aromatase inhibitors. Resistance to endocrine therapy is linked to disease progression.
“The benefit of endocrine therapy has always been limited by the eventual development of acquired resistance. For the first time clinical research has identified a therapeutic agent, everolimus, which in combination with exemestane can seemingly circumvent this treatment resistance and substantially reduce the risk of patients cancers worsening,” said Professor Stephen Johnston, Professor of Breast Cancer Medicine, The Royal Marsden NHS Foundation Trust. “Everolimus has the potential to redefine the way this common form of advanced breast cancer is treated and importantly offers women an effective alternative to a chemotherapy regime,” he added.
First mTOR inhibitor approved in HR+ breast cancer mTOR (mammalian target of rapamycin) is a protein that acts as an important regulator of tumour cell division, blood vessel growth and cell metabolism. When the mTOR pathway is overactivated resistance to endocrine therapy increases and tumours grow. Afinitor inhibits the mTOR protein thus slowing down cancer cell growth and boosts the efficacy of endocrine therapy.
“mTOR is an exciting new target protein in cancer management and seems to act as a 'master switch' because of its involvement in a number of cancers. Everolimus is the first licenced mTOR inhibitor in breast cancer and we have already seen the benefits of targeting this pathway in kidney and pancreatic neuroendocrine cancers. The potential for effectively targeting this pathway in breast cancer is very exciting,” said Dr Alison Jones, Consultant Medical Oncologist, Royal Free Hospital and University College London.
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Thanks Nicky. I'm keeping my fingers crossed not only for my mum but all of you ladies here. I'm not really too sure what happens next in regards to treatment for mum. After getting her secondary diagnosis she had her first dose of docetaxel. She rapidly went down hill and was admitted to hospital where after ct and MRI scans was diagnosed not only with skull mets but hydrocephalus. They performed lumbar punctures on her and have since tested the fluid which surrounds the brain. Whilst the MRI showed no visiblegrowth in the soft tissues of the brain, they have found tiny cancer cells with in the fluid. They can't be certain this caused the hydrochepalus but are assuming that's the case. She had a brain shunt fitted to relieve the pressure and has improved significantly although not fully back to health. She was given 5 days of whole brain radio therapy and at this recent appointment they have decided to re scan her whole body to check for progression. If no further progression they will hold off the chemo and let mum continue with the aromasin tablets and re scan at a later date and givechemo when necessary but I'm not sure what they'll do, if anything, should anything more show up in the brain. She is only taking the aromasin, along with a few other pills. Her original secondaries were the para aortic nodes, left under arm nodes, small nodule in the lung.
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My mum had whole head radiotherapy about 3 weeks ago now. She only had 5 sessions, not sure why it's different for everyone seeing as we've been told you can only have this once?!?! But anyway, mum was very tired last week but slowly coming out of that now, with just odd sessions of it. It's a long story re what's happened to my mum but she too was on the maximum dose of those steroids and she too ate lots whilst on it but since coming off them her appetite has returned to its norm.
It's too early to say if it's worked, after an oncology appointment today she's been told she'll have a scan end of this month.
Sounds like you are going through lots of treatment so the tiredness will be quite extreme. The advice my mum was given was rest up when needeto and enjoy thebetter days.
Sorry I can't be of much help but thought I should reply with what happens with my mum seeing as you lovely ladies have helped me out in the past.
Hope you are feeling more energetic soon.
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Thank you for that Chris. Mums had a bit of a tough time since I posted this. She had one dose of docetaxal and fell quite poorly. After around 3 weeks later and an admission to hospital they discovered she had hydrocephalus and was taken to kings college in London where they performed a brain shunt. She is now just over a week out of hospital andrecovering slowly.
Im glad to read you have responded well to docetaxel and hoping my mum will resume this treatment and benefit like you did. Since my mum went in to hospital they have discovered she has skull mets too and although the brain soft tissues where clear they are or should by now have tested to fluid around her brain to see if the cancer cells are present in the fluid and thus caused to hydrocephalus. She is off to the oncologist today for a treatment plan and when and what they will continue with.
My mum also has nodes affected in her abdominal, some thickening of the stomach wall, a small nodule on her lung, nominal amounts in nodes under her armpit and now the skull mets.
Can I ask what your symptoms were toprompt them to get that secondary diagnosis? My mum had come up to her 5 year check with nothing too untoward. She has a hernia in her stomach which she thought was causing some random bouts of sickness, added to a reduced appetite which caused her to loose weight, they decided to investigate due to her original BCdiagnosis back in 2006.
I hope you continue to keep well and fight this awful disease. Thank you for taking the time to reply xx
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Hi Chris, Thank you for your reply. Mum is doing ok, still very slow on her feet but at least she is now back home. Since posting I have spoken with the breast cancer nurse and she has said that mum should be continuing with her chemo at some point but for now the oncologist wants her on this medication to try and help slow down the cancer. She previously took arimadex and guessing because of the spread that's classed as a fail.
This week has been productive. She has had a visit from the hospice re palliative care and they are putting stuff in motion. The district nurse is now on the scene and will be visiting each week for a general visit. The doctor has been today for a general visit. Only the firstsite she's actually seen my mum, ever but better late then never and tomorrow she has the oncologist appointment so fingers crossed that's more positive.
I hope you are well and looking after yourself. Keep in touch.
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Hi, my mum is going to be starting this treatment very soon. She has had a tough few weeks lately, she had one dose of docetaxel before falling really poorly and this resulted in her having a brain shunt fitted. She is just out of hospital and the oncologist wants her to start on this medication. Do you think this means they arent going to continue the chemo? I know I shouldn't second guess but want to be prepared. Or do you think they would do both? I understand its what they given when you've completed all your chemo and radio therapy?
Also, anyone find this tablet is working for them?
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Hi, my mum lives in ashford and has been diagnosed with secondaries. Although at present she is really quite unwell and in hospital, I have always felt she would benefit from talking to someone in her position. She couldn't do it right now, although I'm happy to talk now for her but I'm sure if and when she's upto it, she would want to too.
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Hi, I have toagree with others for I too was naive in the beginning about my mums diagnosis. Yes it's was frightening in the beginning but she did 'breeze' through her treatment last time and with every mammogram over last 5 years, I just assumed she was fine. I learned a lot at the time or so I thought.... Having always feared having the big c, after mums treatment I thought if you're going to get it breast seems so straight forward, so many ladies are diagnosed each year, survival rates are up, treatment is better etc but I never knew my mum would be where she is today with a secondary diagnosis and really quite poorly. Had I have known, maybe I would have questioned her more, seen doctor more and not left things if they cropped up. I now realise its actually quite a nasty disease and one you battle to fight.
It seems your daughter school are being naive, it's not them personally being affected but the welfare of your daughter is important. What happens to you will affect her, whether she shows it or not. I'm having up and down days about my mum and I'm 35 so for your daughter this must be so hard. I'd get back on to the school, knowledge most def is power.
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Hi, update on my mum. She's had her MRI done and it came back that the soft tissue is clear. They say there is something wrong in the fluid surrounding the brain and the scans have shown the ventricals are enlarged. They have spoken with the neurologists at kings hospital and they are all quite baffled as to what has happened. They say this could be shes had a mini stroke in the passed and not realised it or she's had/got an infection or they think she may have cancer in the csf fluid. Anyone had any experience of this?
They then sent her for another ct scan which theoncologist has said is stable since her last one. I'm assuming that's classed as good news. They then attempted lumbar puncture on her to try and extract some of this cfs fluid but was unsuccessful. They want to retry today but if they fail they have said although my mum tolerated yesterday's one quite well, they won't put her through anymore. If successful, they will send off the fluid for analysis and see if she has cancer cells in the fluid. But if they don't get the fluid they will have to assume it is cancer.
I have searched the net and found a condition called NPH normal pressure hydrocephalas and her symptoms fit the bill to a T. The oncologist says at this moment in time my mum is too unwell to continue treatment and they are quite worried about her. She never in a million years expected this to have happened.
Fingers crossed for news today. I'm kind of preparing myself for the worst, but tiny bit of me is hoping for some positive news to come from all this mess.
Hope your ladies are all well today.
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Thanks ladies. Will mention it to my dad and yes Laurie any information you can give me re referrals etc would be greatly received. My mum is 63 and other than being slightly over weight for most of her adult life after having children, she's been really healthy. I've never known her ill, ever. The odd cold but that's been it.
I haven't had a full update on my mum as yet but I spoke to my dad briefly and she's been moved to a better ward. Still not an oncology ward though, dont think therre is one there but at least she has a tv and better comfort around her. She's still not had an MRI and like my dad said I can't imagine that will be done with results back ready for Thursday when her oncologist is back in the hospital.
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Thank you for your reply Melissa. Can I ask how you got into the royal marsden for treatment? It was recommended to my dad by a friend.
I have spoken with the palliative care team and they tell me since she's been n hospital she's been treated for de hydration and have to say she looks so much better for it. She had high calcium in her blood which is now back to normal. The sickness is still there. The confusion still remains and they sent her for ct scan of her head Saturday am. This showed skull mets but she said it showed some other stuff going on and she's now awaiting a MRI scan which should be done either today or tomorrow. She was talking about the fluid being out of balance or something so are giving her steroids to reduce any swelling as shes had a mini seizure.
I am concerned and thinking they may not treat her and that's our lot. They've stopped the chemo. She's still on the CDU unit but moved her bed so she is in view of nurses station I case she takes a tumble again/ seizure. Ijust so so shocked at how quick this has all happened. It was only 6 weeks ago she was up and about and only worrying about the results of a biopsy to a lymph node in her stomach.
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My mum lives in Kent, I am in Hampshire. I'm hoping she gets her MRI today and that it shows nothing but giving the fact she's now having these seizures and headaches I'm assuming the worst that it is in her brain and not just the skull. My dad has gone in this am as she was due the blood tests today for her second does of docetaxel tomorrow.
There is too much to go in to here but of late it's the fact she's still on this clinical decision ward and hasn't been moved yet. The care seems to be general and not overly specific to her needs. Had my dad not tried to move her and then experienced her turn briefly into dead weight and myuncle notice her eyes roll, no one would know she had this seizure. Probably explains why she bumped her head the other day on a radiator cover whilst in hospital too. The other problem I had was the on call doctor for the weekend came to speak to my dad re the seizure and then decided to go off and look at the ct scan, came back and just blurted out in front of my mum 'sorry it's not good news it's in the skull and you'll have to have a MRI to see ifspread to the brain'. The doctor has never dealt with my mum before until that moment and I just think before he delivered that news he should have had some support in place. My poor mum is already confused but she can't work out what's going wrong with her and then she was just left to sit and diagnose that news last night on her own. To me it's not rocket science and I know doctors are dealing with this stuff day to day but just a little bit of thought would have gone a long way. Anyway, rant over ...... And I don't mean to burden you with my woes given that you are living with this too.
I guess because the brain is so complex everybody will experience different symptoms based on where the mets are. I have my fingers crossed for you that your scan in July brings positive news. When my mum was originally diagnosed with bc I thought it seems so common and lots of research has gone in that it would all turn out positive. How naive was I. What seemed to bea fairly straight forward has turned into something really quite nasty and you ladies are so strong to be here giving advise when you're living through it too.
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Thank you Laurie x The problem beingmay mum was being sick prior to starting the treatment and they have never really got it under control. She has had various anti sickness meds and nothing is working so every day she's being sick at least once and sometimes more. She isn't eating hardly at all as she either doesn't fancy it or is worried she's going to be sick.
Im hoping she is going to get an MRI done today. This is going on to long now. I guess I just want to know if anyone else has been this sick before and come out the other side after treatment or should I be thinking this is it for her?
Thre is a breast care nurse but the hospital trust have changed the system and it's a nightmare to get hold of her. I've tried this am as I feel my mum would love to see her as she's known my mum since her original diagnosis back in 2006, but she isn't there today.
If you don't mind me asking, how bad are your brain mets? What symptoms have you had? What is the treatment you've had or going to have?
I don'treally have much faith in the hospital it's self, there have been far too many errors along this path we are travelling and it's making me sad to think my mum is just sat in a chair in hospital, feeling scared, with the rest of us feeling helpless.
thank you for your support xx
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