I have posted a few messages here about my mum recently as she’s newly diagnosed secondary bc. She has been in hospital since early last week, admitted through a&e after a councilling session and was thought to have been dehydrated. She’s basically gone downhill since her first dose of docetaxel nearly 4 weeks ago now. Mentally not been right but she’s been sick daily and not eating very much. They re hydrated her and treated her for a UTI in the hope that would be the reason for her confusion and mental state. Then on Friday they decided they wanted to rule out cancer spread by giving her a ct scan which she then had on Saturday. Today my dad has been in and described her having a mini seizure. He tried to help her out of the chair back into bed and said it felt like her body slumped briefly and my uncle had seen her eyes roll. Tdoctor ward doctor came round and spoke with my mum and dad and briefly went over the ct scan results and they can see cancer spread so far to the bone in her skull. Apparently they are going to wait until tomorrow when they can have a meeting with the oncology department dealing with her treatment and see where to go next. He said they will want to do an MRI scan on her, I’m guessing to see if it’s in the actual brain itself. It’s horrible seeing her like this. They still haven’t got the sickness under control and with every scan, appointment the news just keeps going from bad to worse. She’s due a second dose of chemo on Tuesday but worried she’s too unwell to have it but I selfishly want her to have it to give her the best chance of reducing this horrible disease and we can get my mum back. What’s upsetting me most at the min is she’s saying she’s petrified of what’s happening to her and I can’t offer her anything re assuring. Is there any hope? Not sure where her treatment plan will go from here but if anyone has any experience of this I’d be grateful of your advice, good or bad.
Other things I should have said are that she’s still in the clinical decision unit, not what I call a proper ward so there is nothing there to keep her mindoccupied and I think this isn’t helping. No tv to watch, it’s mind numbing. She has been getting headaches since being in hospital which I’m now assuming is the head stuff that’s going on and not de hydration, lack of food, stuffiness in the ward etc. After having all the fluid she looks, in her face, 100 x better than she did. If she could get up and move about and talk to us normally she’d have been home now and in a good place.
Thanks in advance for any replies xx
Hi Clare,
Sorry to hear about the ordeal that your mum and the rest of the family are going through.
Docetaxel is a pretty tough chemo to do - it’s not known as the TAX truck for nothing. Sometimes it can affect older people in the way you describe with some confusion, although as you say, it may be that she had a concurrent UTI. I found it really difficult to eat on TAX, especially in the two weeks after i had it as everything tasted of soap. I ended up having soup and water with lime to try to stay hydrated. Whatever she can eat, go with it. Hopefully she is having a decent anti-emetic like Ondansetron.
I had a CT brain last year when I was diagnosed which was clear and then a MRI a few weeks ago when my brain mets were diagnosed. The onc said it may be that they had been there since my diagnosis last year but were too small to be seen on CT. I think MRI is the best for picking up brain mets so I would push for that.
I would also push to talk to the oncologist. Make a nuisance of yourself and make sure you keep hassling (I say this as a nurse!) It is vitally important that you have an oncologist you can trust and who you have confidence in. Is there a breast care nurse attached to the hospital? If so I would get on the phone to them. Oncologist’s secretaries are also good people to contact.
You might also want to get a second opinion which is very common for people to do - don’t worry about putting anyone’s nose out of joint.
Please feel free to pm me if you want to chat.
Laurie x
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
Claire, I have a ‘small volume’ of mets in my frontal and occipital lobes which are all less than 1cm. Currently I am on Xeloda (2 weeks on and 1 off) as there is some evidence it may cross the blood brain barrier. I started having occasional flashing lights and migraines which may or may not be as a result of the mets. Occasional frontal headache but that may be stress. It’s all a bit vague. I’m currently on a watch and wait on my liver and brain while I do 3 cycles of Xeloda then I have scans and results in July to see where we go from there.
Your mum may be sick from the position of any brain metsand I think that’s why it’s so important to get a MRI, oncologist and maybe palliative team who are particularly good when it comes to pain and nausea (they’re about so much more than just end of life) If you don’t get any luck contacting people today or feel you are being fobbed off, contact the PALS service which deal with complaints.
Yes I have come across people who have come back ‘from the brink’ so to speak and that’s why it is so important that you mum gets her scans, gets moved to an appropriate ward and gets a treatment plan in place ASAP. By the way, what area of the country are you in?
Laurie x
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.
Clare xx
I just want to add my voice to the importance of getting your mum under the right care team. I have ended up in general hospital wards a couple of times and while most if the staff are lovely caring people I have found that the biggest problem is they tend to overtreat me.
The last time I went in to my local a & e, all my hospital (the royal Marsden) wanted them to do was check my blood to see if I was jaundiced. When the local hospital found out I had brain mets (I’ve had them for over a year) they insisted on keeping me in for observation, the nurses kept patting me and telling me I was doing amazingly well to ‘still be here’ !!, really, did I need that?!
I was told by my oncologist that there is absolutely no link between skull mets and brain mets - they are completely different systems. I think lots of the ladies on the bone mets thread would be very upset if they had heard your mums doctor say what he did.
I don’t think that local hospitals see many ladies with secondaries. The staff there think it’s an immediate death sentence, which it really isn’t. I am so sorry that your mum is still in the wrong ward. It’s really difficult for your dad as his generation generally work on the ‘doctors always right’ principle. I know that you are some distance away but you might be able to talk to someone on the phone and get her moved to an oncology ward, or even better to a specialist cancer hospital
Cheers
Melissa
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.
Xx Clare
Clare
I also go to the Marsden in London (150 mile round trip!) but there is also one in Sutton, Surrey which may be closer for your mum. Basically, I phoned the SBC team secretary who is a lovely bloke, asked him how I went about getting a second opinion and he talked me through it and arranged to get copies of all my scans and treatments emailed. I think I was seen within 2-3 weeks and I also asked if it would be quicker to go privately but it was faster on the NHS!
I can’t remember if I did it through my hospital onc or the GP -think it was the hospital. I do know that when I arranged to have all my care transferred there, my GP sorted it within a few weeks.
PM me if you want the details.
Good that your mum is on steroids. Be aware though that one of the main SE’s is making you feel a bit wired and difficult to sleep so I usually take a sleeping tablet called Zopiclone 3.75mg which helps, otherwise I get 1-2 hours sleep if I’m lucky! One of the good things about steroids is that they generally increase your appetite so hopefully your mum will feel like eating again, assuming her nausea is under control.
Out of interest (and not that it should make a blind bit of difference to her care) can I ask how old your mum is?
Laurie x
My experience is pretty similar to laurie’s except that it was definitely my gp who organised for me to have a second opinion at the Marsden.
It is very normal for them to have referrals, they give second opinions all the time. I think it’s generally your decision whether to stay with the Marsden (and deal with the extra travel that may involve - can be tough when you feel unwell) or go back to your local hospital with the marsden’s treatment plan.
How is you mum doing today?
Melissax
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.
Xx clare
Clare, Ill pm you tomorrow. Too knackered tonight!
Lx
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.
Clare x