fantastic news signet i hope u soon feel better. i had wbrt 2 wk ago and just cumin round from it. i didnt think it would effect me as bad as it did but hey we still here and fighting. my ct scan came back as just the same as the 1 in sept 10 so i suppose thats good news. all hair gone my head looks like a boiled egg ha so i went to town and treat myself to sum new hats. c my oncologist 3rd march and c wot she as to say. i been having alot of shoulder and neck ache but it could be with sitting about for 3 wk. takecare every1 and keep up that fight godbless u all pink 1
thnku for cheern me up, dx yest with brain mets, in hosp so whn go home will read posts again, but hav bn inspirztn i needed today. Seein consultnts this mornin xx
Really glad you felt your op was a success.
You sound as if it was particularly horrid at times!
I trust these next days are calmer for you as you try and recover.
And that you feel less sick and weary.
Keep strong and facing forward which is all we can manage at times...
Great, truly great to hear your news.
Do hope the other women here are faring ok too.
Best wishes to you all tonight.
Welsh girl xx
Had my op on Tuesday 1st Feb and it was a success. Nobody warned me about the horrific pain and sickness that followed for two days in HDU. Ouch! I wasn't allowed steroids either just morphine and morphine based drugs now. I was in for a week total and my first day home yesterday was spent spewing lol with blinding headaches. I had CT done after op due to pain levels and I do have distended areas of swelling/oedema on the brain so it's to be expected I suppose.
Hoping wound heals then I'll get my meeting with onc in next three weeks to set up WBR - oh happy days ha ha
hope you are all doing well and thanks Lynn for your amazing post re life expectancy!!!!!! And thanks to the other lovely lady who wished us all well!!!! It's these types that keep us all upbeat and positive!!!
Hugs to all, gnight xxxx
Just wanted to praise all you strong women for your determination to keep striving forward...
You all sound amazing and even though I know you have no choice with your treatment choices it is utterly amazing what you are suffering.
Your hope for the future with your loved ones is something I want you all to achieve. You deserve the best now!
Offering you my admiration and the warmest hug ever.
I'll keep reading your stories...
Sleep well tonight.
lynnferg your words have helped me sooooo much. i 2 was diagnosed with inflamatory b c in aug 08 at 36. i read it was the most aggressive. went straight onto EC chemo to reduce swelling and opted for a double masectomy. i had 8/9 lymph nodes involved and the lump was only 2mm but told the little ones are the worst. then had 12 weeks of taxol and 3 weeks of radio. did ok for till oct 09 and had difficulty in breathin and off we go again it was on my lungs. went onto xeloda for 3 month which didnt work had to have right lung drained twice. then i was put on taxol and carbolatin for 6 month. in september 2010 got fab results that there was no evidence of disease. then the week b4 xmas i lost my voice and couldnt swallow. had head mri and results were i have several brain mets and cant be operated on. had wbrt last week but symptoms no better yet.got ct scan 2morrow 4 my oncologist as i think more chemo is on the cards. my breast care nurse just said your life expectancy is alot less but alot less from what.i have packed drivind in which i find very hard but certainly wouldnt risk it. i 2 get dla and incapacity benefit.takecare pink 1
I was rushed into hospital in February 2008 and 3 brain mets were diagnosed. My husband was told that I might not make it out of hospital, and relatives rushed to my bedside. Surgery was not an option, as I would not have survived. I was given large doses of steroids to bring down the oedema and then a week of WBR. It was a bit of an ordeal, but it worked and, although I had lost a stone in weight and was weak and shaky when I came out of hospital, I slowly got better.
As regards life expectancy, I read that average life expectancy on diagnosis of Inflammatory Breast Cancer (IBC) was around 6 months when I was diagnosed in 2006. (My GP told me a couple of years later that he hadn't expected me to last more than 2 months at that time.) A month or so later I was again admitted to hospital as an emergency when I developed septicemia while on taxotere, and I could have easily died of that.
All in all, I'm not supposed to still be here, but I am, and I now see life expectancy figures just as a challenge or even as a benefit to be exploited. I claimed on my life insurance policy back in 2008, and I have just realised that I can also claim on my pension policy too. I get Disability Living Allowance under the special rules. Sometimes it feels like I can walk on water - particularly when my oncologist looks at the latest scans, says they are clear and comments "Well, it looks like you've done it again!"
When I was first diagnosed, I looked at the survival figures and swore under my breath. But now I realise that they are just statistics and not predictions.
I do hope that all of us continue to survive and enjoy life.
Love to everyone, Lynn F
Just one PS:
With everything else going on at diagnosis of brain mets, it's important to remember that you must surrender your driving license to the DVLA, and if you do drive, you won't be insured.
Well typically my luck I got sent home. An emergency case arrived and took my surgeon and a cardiovascular surgeon all day until 7 to handle. They cancelled mine at 3 and surgeon came to speak at 7.30. They can't fit me in till next Tuesday now so I'm home. Back in at 11am for surgery Tuesday!!!!
Bloody stuffed my face and bought half WRVS lol but met a lovely lass whilst there. Got chatting a d turns out her dad had just had his breast cancer surgery on the Monday and his lymph nodes removed. Ended up going to see him on the breast cancer wards. Worlds apart from neurology. Beautiful so had coffee for hour and exchanged numbers. He turns out to be a surgeon himself and a very inspirational man. I googled him and was able to read all about him and his career. Funny seeing his photo. So I've got his mobile to keep up with progress. So it wasn't a wasted trip. I made friends with so many folk. Spent most my time caring for the others who'd had ops. Nurses said they'd miss my help lol bloody NHS!!!!!
I could nver do nursing! The bedpan, bag, commode bit is just scunnering lol and the toiletting side is too much yikes
anyway I hope your all ok guys and glad of the info re sickness and headaches. Least am forearmed. Xxxx
Hoping op has gone well
Pink, my headaches and sickness started within an hour too which I wasn't warned about. Steroids helped enormously. Tiredness hit me the second week and hair fell out 3 weeks later. That was back in middle of Nov and I'm still waiting for hair to grow back. Fortunately it doesn't show as the hair on top covers it.
Best of luck all
thanku all. saw my radio doc yesterday and got anti sickness and pain for the horrific headaches. i feel much better than i did. number 3 2day 2 more to go. got speech therapist cuming to c me next week. its the not being able to talk thats the hardest. kids have bought me a whistle because i cant shout ha. twinmummy you are a fighter to go through what you are goin through and move house omg i only moved once and said never again.i am from halifax and having radio at st.james is anyone near by. will keep in touch everyone n keep them chins up pink 1
Pink hang in in there and I hope things ease up for you xxxx your incredibly brave
Twinmummy, well done to you and a house move lol you mad woman. Glad your through this though and on the mend xxxx
god bless all of you out there xxxx
Hi louise and thanks for your reply it's been a huge comfort x
Am currently in the Western in Edinburgh awaiting removal of my brain mets tomorrow. It's in the back of head also and to be a 3 hour op followed by recovery in ITU. Hope I come thru well like you!!!!!
I've to start WBRT in three weeks which I've heard is nasty so thanks for the honest warning. Not looking forward to it but hey ho.
Have also been told that this surgery is a walk in the park compared to my 11 hour reconstructive surgery last year.
Anyway I'll keep in touch and let you know how it goes xxxxxx
love to all,
Delighted to say I have finished my 10 day course of WBR which really wiped me out -and continues to make me feel quite shattered. Hopefully though I will now start to get some energy back. I certainly need it as I am moving up north 4 weeeks today! Am very luckky that family, friends and colleagues have been so fantastic over last few weeks - particularly on the meals front - never my forte anyway! I do hope you are all enjoying this weekend and aren't in any great discmcomfort just now. It does help to know you are out there and know what its like to go through similar. I always dreaded brain mets - I guess we all do - but at least I am having treatment and there are other treatment options available to me and am still (,more or less) me! Take care all xxxx
hi everyone. had my 1st wbrt yesterday. the team told me i would be tired n sick etc after treatment but omg it hit me like a ton of bricks an hour after. the most worst headache and sickness. as anyone else had it come on them as quick. need to mention it monday as i cant eat a thing. thanx pink 1
Hi all, I just posted this on the 'are brain mets more serious?' thread.
Hello to all. A while ago now a forum member called KitKat wrote her 'Brain Diaries.' I have found them in search and am posting them here as at the time they were written I know they offered great hope and inspiration to others.
Kitkat sadly passed away many months later from other complications due to the disease that were not, I believe, in anyway related to her brain mets. She had VERY succesful WBR results.
Wishing you all the best results possible.
Lots of Love, Belinda..xx
Brain Diary Hi All
I\'ve decided to impose on you all my lovely journey through brain mets as there didn\'t seem anyone out there who\'s done it recently/firsthand. Don\'t want to scare, rather to reassure, so if you don\'t want to read, stop now!
As you may know, saw the doc last week who confirmed brain mets. Hospital called Tues ( week later) for me to go in Thurs for mask and simulator for whole brain radiotherapy. Have to say, VERY impressed at speed of NHS here, also slightly scared that they felt it necessary to do it so quickly!
Mask was fine! I was worried I\'d feel claustrophobic, but it was a bit like having a a warm string vest put over my face! It was only on for about 5 mins and then cooled down. Then they clip you down on the table, but the radio is only about 6 mins total, so I can do that! Easy! No tattoos as they draw on the mask!
She also showed me the MRI films and the mets were very small white spots. About 6 or 7 dotted around, but lower in the brain than I had thought. Not many in the top bit, and one a bit alarmingly near my optic nerve, but she reckons this radio will stop it inflicting any damage.
The radio will hopefully reduce them but, as usual, won\'t get rid of them. Whether they recur is apparently dependent on what happens elsewhere in me, but as liver and bones seems stable for now, fingers crossed.
I start next Tues, 10 sessions over 2 weeks. Hair will go patchy and thin again, but it may not come back this time. Still, rather be here and bald, than hairy and not!
Feel so much better now its all going ahead and I can deal with it! Been working out driving rota and babysitting rota today.
Driving by the way, is off for the \'forseeable\'. basically if I ever want to drive again, the doc would need to fill in a form for the DVLA. Just going to have to get used to it, and use taxis and buses etc.
Was a bit concerned that this would in some way change me, my personality, but just going to have to try it and see. Surgery is not an option cos there are just too many.
Steroids seem to be stopping headaches and clumsiness, still a bit woozy but think thats the steroids themselves! Plus, they give me thrush so mouth back to cardboard and weight dropping off again. Mind you, I\'ve got plenty to lose so no worries there!
Anyway, think thats all for now, let you know how its going next week.
Brain Diary Part 2 Hi Everyone,
I\'m back! 4 whole brain radiotherapy treatments done, 6 to go and not feeling too bad!
It\'s a very strange experience when you actually have the radiotherapy. When I\'ve had it before on my boob and back, there is no smell, no lights just buzzes. This time there is a definite smell, kind of burning but not really, they call it ionising apparently, but my friend whose been driving me noticed it in the car! It also flashes a kind of blue light at the back of my eyes which has baffled them as its not supposed to! I think it must just be zapping a particular nerve in there somewhere! Its so quick though that I don\'t have time to worry. I have to say that by the end of it, I\'ll be glad to finish!
I\'m feeling more weary today, and had a bit of a funny ear last night which is all down to swelling in my poor head. I do feel a bit like a bit of bacon! Hair still there, but scalp definitely feeling tingly kind of pre hair fall out feeling for those who\'ve had chemo.
Anyway, will have a good sleepy weekend. My poor Mum has been away on holiday since all this kicked off and knows nothing about it, because I so wanted her to have a good holiday, so thats all about to hit the fan this evening. I hope she\'ll forgive me.
Hope everyones doing ok
speak to you when I can
lots of love Kitkat
2nd part of Kitkat's brain diaries....
A new bike for Christmas Hi all
wanted to tell you all about my early xmas pressie as I\'m so excited and proud of myself!
I got a big shiny purple bike! With lots of comfortable padding and good suspension for my poor ole bones.
Been out with hubby and son and did 2 miles and felt really brilliant and alive! Fantastic, and its exercise and a bit of independence as I can\'t drive.
Would definitely recommend it despite my mothers worries about my bone mets!
Loe Kitkat (exhausted but happy)
More Good News from me too! I wanted to share my good news too with everyone as sometimes we forget there is hope!
I\'ve recently had CT scans on brain, abdomen, neck, pelvis and there is NO EVIDENCE OF METS !!!!!! For those who don\'t know I had liver mets and multiple brain mets (see profile) and am so overjoyed I can\'t quite take it in. My onc said he was pleasantly surpised as he had expected there to be some activity!!!!!!!
I do still need to have bone scan as he thinks any cancer activity here might be the cause of my recent anaemia but I can deal with bone mets! Its not the bone mets that see you off is it.
Feel like the huge cloud I\'ve carried around has been lifted, for a little while anyway.
So don\'t give up, hope my news cheers you as much as it has me!
Can't really help with breast op decision but with regards to brain op, i came through both times very easily. My met was at the back of my head. The op took about 3 hours and I was woken up in recovery and kept there for 4 hours instead of going to ITU. I then went back to the ward and was sitting up having tea and biscuits the same evening. I had little pain and was out after 2 nights. Certainly my reconstructions have been much more painful than brain ops. I have an s shaped scar behind my ear and that small area was shaved.
My RT started 3 weeks later and mine was only at the back not WBRT but I found it tough - headaches, sickness and tiredness. Please ask away if yo have anymore questions
Just an update. Not a great week. Got call to say I've finally cme to top of waiting list to have final breast op, mini uplift, nipple done and son tags removed from recon year ago, at golden jubilee hospital. Glasgow which is five star! Wouldve been a nice treat but thanks to nhs waiting times it's come just as my brain mets arrive.
Also got abnrmal smEar result and to attend clposcopy clinic in next 8 weeks.
Sorry bout typos in car at mo xxx
hope all doing well and take care xxxxx
Hi girls I had MRI today and find out Friday whether they can uperate. From ladies who have had an op is it all done fairly immediately and how long are you in ITU afterwards xxx do they start radio quite fast after surgery too!? I get feeling I'm getting whisked to Edinburgh next week once decisions have been made fri x
Hi Pink 1,
My wife's primaries were / are triple neg. but secondaries Her 2+. Click on my profile for full info.
thanx sossages. i hav only just started on the road of wbrt which starts tomorrow. the stats are terrifing and probably the worst thing i could have done but when your diagnosed you just want answers. Is your wife her2+. i am triple negative and dont think herceptin will work. its nice to hear that people are responding to radio and chemo and managing to get on with their lives.i am goin to fight this i'm not ready to go yet the husband needs some more training with the kids ha. thanx pink 1
I have not been on the site for about a month, however my wife has a secondary brain met for a year now being controlled by Herceptin. There have been issues with it as can be read under "Advice please" in the Secondaries: treatments & medical issues section but it is at least being controlled for the foreseeable future. Yes - the stats are terrifying, but everyone is an individual and has a unique experience as this site shows
Hi Pink, poor you having that nasty mask fitted. I get MRI tomorrow to confirm I have onesolitary met then hear Friday if they'll operate. They know I'm claustrophobic and onc said I may not have to wear mask due to location of the met anyway. I'm just feeling bit empty and pointless not sure what to do with myself really.
I too am so sad to think that my youngest two will have no memories of me except in pictures and film. I am such a doting mumand sadly thier dad is not an affectionate type so I fear greatly for them afterward. They turn to me for everything in life. Terrified of never seeing them again. It's just too sad. My eldest is a sound little lad and fully knows what we are facing!
Anyway I'll keep u in touch with my progress and good luck pink x my heart goes out to you
hi signet i am so sorry you have joined us. i was at st. james leeds yesterday for my mask making for whole brain radiotherapy that starts on friday. I was diagnosd with ibc in aug 08. Had double masectomy, chem, radio had 7 months grace then it was back on my lungs. Had taxol and carboplatin and sep 10 i was classed as no evidence of disease. Started with a hoarse throat 17th dec went to see oncologist inbetwen xmas and new year. Difficulties in swallowing and loosing control down my left side. Had mri of head and results were i have several brain mets that are pushing on nerves that control swallowing and voice. This hit me like a ton of bricks i can tell you because i hadnt had any of the signs like headaches, dizziness etc but i have now. Cudnt believe i cud go from good results then 3 months later to this. I too have children similar ages to your. Girl at 11 who we have told briefly because we thought if we didnt tll her she would read into it anyway. I hav a boy who is 7 and a girl at 4. It scares me to think that the younger 2 just wont remember me. I have started memory boxes just to help build something up that will help them.please kep in touch pink 1
Hope everyone is feeling more positive after a good weekend. Signet, I hope you find that the met is operable - I have had a solotary brain met removed twice now although a third has now been treated with RT. Both gamma and cyber knife are also options for brain mets although I haven't had either. My onc is very positive about my prognosis and even when I was first diagnosed 18 months ago he gave me more than 2 years. I have been assured that the brain RT is very effective and they don't expect to see anything in the region they treated for at least a year.
I am off to see my onc this week but am not worried about my brain more about a pain in my leg that I think is bone mets. I believe my liver is fine but we will see.
Someone mentioned letrazole - it has worked wonders on my liver mets but unfortunately did let a second brain met develop so don't know hoe effective it is.
Hope everyone has a good week
Hi Pink and Lynn
I am sorry to read about your recent diagnoses, in addition to the valuable support you have here please feel free to call our helpline for further support and a listening ear on 0808 800 6000, the line is open 9-5 weekdays and 9-2 Sat.
BCC have published information about secondaries to the brain which you may find helpful and you can read or order a copy of this here along with a link to the specialist support we can offer you:
Hi can I join girls,
I'm a 39 old mum if three young children. 11, 4 and 2. I found out just Friday that I have one solitary brain met 23mm in length in lower cerebral area. Consulting neuro surgeons next week re surgery if poss but warned it's poss too risky due to position fairly deep.
I'm in bit of shock. Only dx Aug 09 and had mastectomy followed by year chemo that ended mid Sep 09. Spent my circa 12 week remission doing a personal training programme losing 2 stone steroid weight gain in three weeks. Good news I'm fighting fit and no sign if secondaries anywhere else despite being dx with liver mets last march19th.
So if u don't mind I'll tag along and keep you in touch. Feeling very scared for my kids particular the youngest who is my little shadow dnd may never remember her mummy.
Likewise been Reading horror stats but that's only natural. Kinda fed up now as opposed to stressed. Need to ask bout this leroza whatever drug you talk of that reaches brain
keep well all
I am soooo glad of your good news gemini it is really uplifting and given me hope. It is so hard wondering what the hell is round the corner. I think the hardest thing is when we have such young children, mine are 10, 7 and 4. We have explained to my eldest daughter whats goin on roughly but the youngest 2 cant really remember me without cancer. i plan to live everyday to the fullest and put nothing off that can be done 2day. my mum lost her mum when she was onlt 8 to cancer and i know my eldest as been talking to grandma about it and i think she does get some sort of comfort from it. when i read the papers and a young mum of 3 died of swine flu i suppose any of us can go at anytime but we just have to put up a huge fight. i will keep in touch and let you know how i go on with radio takecare all and thankyou for your kind words pink 1.
So glad you started this thread but v sorry to hear of brain mets. I too was diagnosed with brain mets on New Years Eve following problems I'd had with vision. Initial dx in May 06 and secondaries in lungs liver bones and skin May 2010.
I am currently having 10 treatments of wole brain radxitherapy whichis horrid but if it works -and people tell me it is effective - then fine. Main thing is very weary - steroids have helped wit the headaches. I'll then start more chemo - capecitabine and lapatinib.
Have been very encouraged coming on these boards and hearing from other ladies with brain mets and am hopefull will last a long while yet as I two have children under 10.
Keep in touch. I did ask onc about life expectancy because I am retiring early on health grounds - he said up to poss one year.
Thanks to eveyrone who posts on here.
Hi pink can't quite believe it but I got good news from scanc today. Liver is slightly improved and no new disease in brain so plan to continue with vinorelbine and herceptin As it seems to be working. Please don't give up at this point.
Take care Gemini xx
hi gemini. You have lifted my spirits.I know i shouldnt go on other sites looking how long i have but no one will tell me. I really thought i should be planning my funral but i can see a glimmer of hope. I dont care how much treatment i need they just have to keep me here for my children.I was only diagnosed a week ago so every thought you can imagine is wizzing round at the moment. I have lost my hair 3 times already so it wont be a shock this time. Go for planning of mask etc on monday. They are doin 5 rounds of wbrt but read that alot of people have had 10 so i need to ask. I do no i have quite a few all over and at the brain stem which is effecting my speech and swallowing. i just cant imagine ever eating properly again. just cant believe how quick its all come on it was only sep 10 when i got fab results and was classed as ned. I didnt realise that chemo didnt get through the blood brain vessels but have read that letrazole does thats if i spelt it right. takecare pink 1
I was diagnosed with brain mets in March 2008. Ihad surgery and gamma knife then chemotherapy. 10 months later I had more tumours so I had gamma knife again and more chemotherapy. My third recurrence at the end of 2009 I was no longer suitable for gamma knife so reluctantly agreed to WBR and more chemotherapy. WBR left me feeling very tired and I slept a lot. I have been on chemotherapy constantly for the last 19 months but generally feel well. Just waiting for latest scan results to see if chemotherapy working. I have liver mets also which seem to be under control. It's very scarey but hopefully you'll feel easier once treatment starts.
Take care, Gemini.
Take an ipod with some fav music to take your mind off the mask - its fairly hideous if you think about it too much - the staff should have a dock for an ipod. You will lose your hair although not for about 3 weeks. I only lost a band from an inch above my ears right round the back but left a mop on top that is long enough to cover the worst. Feel free to contact me any time
Thankyou for your speedy reply. I feel a bit more at ease to know there is others out there in the same situation. I will keep in touch if ok with you.I go for the mask making for radio monday and just hoping and praying it works. We all live in hope that there is a cure before we go takecare pink 1.
My heart sank when I saw this post because its a thread no one wants to join. I was diagnosed with primary bc in 2001 aged 34 and then following a month of mild but constant headaches with a single brain met June 2009. Subsequent scans showed mets in lungs, liver and bones. My brain met was sucessfully removed and I had a course of chemo for my other mets. I was then put on letrazole which has continued to manage my systemic mets very well. Unfortunately last September I had a recurrence of my brain met and a second small area found too. Surgurey followed by localised radiotheraphy has hopefully zapped teh problem areas.
Both of my oncs (one for brain, one for rest of body) are very positive about the range of options available to me in the future. The problem with brain mets is that many of the chemos don't cross the blood brain barrier and so does not get to them. However I have been assured that the radiotherapy is very effective at halting progression.
Pink I don't know how to reassure you as I know how fearful you must be. Good luck with the radiotheraphy. I didn't like the actual process although it is painless. however I did suffer bad headaches, nausia and tiredness lasting for a good month after the treatment.
Please feel free to contact me by pm if you want any more info/support.
My thoughts are with you
PS I've just bumped up some old discussions on this subject so you can read some expereinces of others
I suppose i am looking for some sort of hope out there. Diagnosed aug 08 with ibc. Had chemo double mastectomy mor chemo and radio the whole lot. Secondary found in lungs oct 09. Had chemo and in sep10 i was ned and doin well. Started with a cough nov 10 and by christmas i was convinced i had larangitus as i had a very croaky voice. Cut a long story short i had a mri of the head and several brain mets were found. There are tumours that are pressing on my vocal cords and weakens the muscles of swallowing.Starting next week with whole head radio therapy to help relieve my symptoms. My breast care nurse just said that my life expectancy is significantly less. What do they mean by that. They wont put a time on it so i have been on web sites i no i probably shouldnt have gone on and it says 3-5 month. I am 39 with a fantastic husband and 3 small chldren. Is there anyone else out there in the same situation or similar.i am quite new to this and not very good on computors ha hence the spellings. thanx pink 1