Breast Cancer Now Forum

Hi Nellgwyn, I know exactly where you are coming from. I to have brain mets which were diagnosed summer last year. I to have had a lot of problems lately. Although I feel very well in myself I have very wobbly legs and have been in and out of hospital mainly A&E following falls. I have fallen four times in the past few days and the latest MRI has shown the tumour in my brain has grown and is now blocking the fluid normally in the brain from draining away. I am being sent to Plymouth to have a stent put in my brain which is mega scary! I am a bit cross because my brain hasn't been scanned for over a year as I feel well and have no symptons would things be different if I had had that extra scan. It is a scary time when your whole life is in someone elses hands.I do hope you get the treatment you need but scream and shout until you get what you want! Unfortuneately treatment and what is available is very post code lottery especially if like me you live in a rural area! Keep us up to date on how you get on.  Vickyxxx ... View more

Argh my post has just disappeared I hate computers. Once again thanks for your replies ladies. Luckily no more spasms and don't want another too scary! Feeling well now but have very wobbly legs but don't know if it's the brain mets or side effect of the chemo. You can so easily turn paranoid with every ache and pain! Chemo again Friday so will ask then. xx ... View more

I was told last year when I was diagnosed with brain mets to give in my licence. I must admit I still have it as I don't have a passport so it is my only photo ID!!! I wouldn't dream of driving though as my eyesight is not good on my right hand side but I am sure theere are millions of people out there with worse eyesight than me judging by some of the appalling drivers on the road! ... View more

Hi there again bc-lass sorry that you are on here as well. There are a few of us with brain mets but it doesn't seem as common as other mets.How long have you had yours? I got diagnosed with breast cancer last year and had a mastectomy, my choice, at the end of April. Previous to this I had been to the doctor a couple of times because I was having trouble with my balance I explained that I was wobbling about as if I was drunk! It was put down to probable ear infection as I passed a load of little tests the doctor did but then a few weeks later I had a big red mark which I thought was a burn come up on my boob which got diagnosed as cancer. After my surgery I was due to have a CT scan and MRI to see if there was any spread of the b/c then one morning I got up and my vision had gone peculiar in one eye so I phoned the breast care nurse and it was arrange to scan my brain and hey presto brain mets as well as spine ribs and liver. Within five days I was sent off for 5 sessions of radio therapy on my brain and then started on Fec chemo after what seemed an age to sort out. Unfortuneatly me and Fec didn't get on too well and I stopped eating and barely drinking for six weeks and lost three stone in 8 weeks.When I was scanned again they felt the benefits of the Fec where far outweighed by my deteriorating health as I really couldn't eat anything and barely had the strength to get out the armchair. I was put on Letrozole which I got some favourable result from to start though I was told it only worked from the neck down! I had another scan but the showed that the couple of steps forward I I had taken had gone to a step back so am now on Docetaxel but I have it in a reduced dose once a week instead of the whole lot every three weeks to minimise the side effects. I have had 3 lots so far only another 15 to go! Lukily no side effects apart from the fact I am losing my taste.I was eating chocolate last night but it was if the half the flavour had been taken out. At least what I could taste tasted normal when I was on Fec everything tasted disgusting and would gag on anything that went in my mouth! I have found that my brain mets have been pushed to one side as in " we don't like to keep scanning it and will rely on symptons to tell if their is a problem". Trouble is when something creeps up slowly on you you tend not to notice. I am lucky that I have no headaches or any thing like that it is really only my still wobbly legs and my sight that causes a problem. The met is by my left ear somewhere and is pushing on my optic nerve which effects the sight in my right eye, If you could imagine looking  through very very thick net curtains into fog that's what I can see. I have been told it is inoperable but I really am not happy with the information I have been given so far so when I see my oncologist this Thursday I am really going to badger for more info. Last year when I was feeling really rough I was visited several times by a hospice nurse who told me alot of oncologists don't pass on information as patients don't want to know but I want to know everything all the ins and outs. What are you having done to your mets? I must admit I find it frustrating on the forums when you read that people are getting this treatment or that some of it high tech gamma knife etc which all boils down to post code lottery with what is available in your area. Where are you? I am in what is today a very wet miserable North Devon (all those poor holiday makers you have desended on us this week!!) Example of my stupid brain I have just spend ages writing all this pushed the wrong button and it all disappeared luckily whilst screaming with frustration I saw out the corner of my good eye that it had auto saved just as I was going to chuck the laptop out the door!!! It's at times like this you wonder is it the brain mets causing you to do odd things or just the fact you are getting old and daft ( I'm 59 ) it's the same with other everyday aches and pains is it just normal ache or is it the cancer. You can land up totall paranoid!! Well I hope I haven't bored you with my story and I would be really interested to hear your experiences so far. Take care from a fellow brainy! ... View more

I am a brainy as well also spine ribs and liver!!! Oops battery about to die get back to you tomorrow ... View more

Third reduced dose of Docetaxel yesterday (equivelant to one normal one) and have just had some chocolate and arrrgh my taste is going I could hardly tell I was eating chocolate! Live is really not fair!!! I haven't lost my appetite I just cann't taste anything properly. ... View more

Hi Miller08 sorry that you are here. I got diagnosed April 2014 with mets in my spine ribs liver and eventually brain. Originally I had radio for the brain then was put on Fec but only managed two lots of that as I stopped eating so was put on Letrozole. I made some improvement on that but the last scan showed from my two steps forward I have taken one back so now like you I am on Docetaxol. I am having it slightly differently than normal as in every week instead of every three weeks to minimise the side effects of me not eating again. I've only had two lots so far only another16 weeks to go!! So far so good I'm still eating but not sleeping too well not helped by being on steroids 3 days out of 7. I was sat up watching TV at 1.45 this morning. Suprising what rubbish is on at that time. I am finding myself tired a couple of days after having it and I am finding myself very achey but that could be over doing the gardening yesterday. One tip I was given on here was to suck ice or icepops while having your treatment to help stop getting a sore mouth. I take a food flask filled with icepops when I have my treatment and so far no problems. My biggest problem so far is them finding the veins I shall be a human pin cushions full of holes soon! I am going to ask my onc next week if I can have a line put in but one on my chest (cann't remember what they are called) because the one I had before on my arm caused all sorts of problems with my sensitive skin and the dressings.As for the hair going I've lost mine once already and it has grown back and will come out again but hey ho it didn't really bother me. Unfortuneatly the hair on the chin might be a different matter. Last time I didn't lose any other hair including eyebrows and lashes and chin!!! Hope your treatment goes well. ... View more

Morning ladies thought I should make my first visit to the cafe so I can have a calorie free lunch. I found the bathroom scales yesterday which have been hiding under the bed since we moved house. Horrendeous I have put back on nearly all the weight I lost last year so some calorie free lunch would do me well. Maybe my idea last week that as I have had to go back on chemo I could indulge a bit beforehand was not so good. I will sit by the lake in the sunshine as it is wet and horrible here today. I should have come here earlier so I could have taken part in the dancing for a bit of exercise to help with the flab but I don't know of any shops that sell dance shoes for people with two left feet in size 9!!! ... View more

Thanks for your repies Sod6162 and Belinda. All tips and info are a great help. I know I shall be swallowing the anti sickness tablets from day one this time. I've beeen really naughty the past few days eating loads of naughty things using the excuse that I'll enjoy them while I can because next week I might not be able to! I'm hoping that I won't have to have too many steroids as I don't want to be sitting wide awake in the middle of the night again watching rubbish TV. Will just have to take one day at a time and hope this treatment will have the desired effect. ... View more

I sent you a message the other day as I am also in N.Devon. ... View more

Knitted Knockers are fabulous. I've had mine a year now and just chuck them in the washing machine though you are told to take the stuffing out. I must admit they have gone a bit lumpy but I don't wear anything tight that would show. They are brilliant as if your weight fluctuates like mine has you can easily take out or add a bit of stuffing. I have very sensitive skin and would never tolerate a chicken fillet. The ladies who knit the knockers are angels!! ... View more

Thanks to all of you who have got back with your tips. I am dreading the nausea as I was really rough on Fec and didn't eat for 6 weeks losing 3 stone in two months. Weight that really needed to go but not the right way to go about it! Unfortuneatly most of it has gone back on. It seems that having "the trots" is a very common side effect with Docetaxel, at the moment I am suffering the complete opposite and have to take this foul tasting stuff called Laxido which states it is orange flavour but I have never tasted an orange like that. When I go for my treatment I shall make sure I take a flask of icepops or ice cubes with me. On the Fec I suffered from a white furry mouth and had to have some stuff of equally foul taste to clear it up. I know your taste changes dramatically on chemo but why do you get given stuff that tastes awful when you are well let alone why you are feeling rough! I was given several meal replacements when I stopped eating, soup, yogurt and a drink which looked bad smelt bad and tasted unbelieveably disgusting. My family would nag me to take it and it wasn't until I made them try it that they realised why I couldn't !! Hopefully as the onc said having weekly treatment will be a bit easier on the system I won't be quite so bad. It was so embarrassing before to be in deep conversation with someone and fall asleep while talking. Thanks everyone again. ... View more