Brain mets - breast cancer in liver / spine / groin / lungs

Hi all, i’m 39 and was diagnosed with breast cancer mets on ney years eve 2008. my doctor had been telling me that my bad back wasnt going to get better unless i kept moving - sent me to physio, and i was in agony - could hardly breath. i was finally signed off 8th dec 08.

when i found a raised lymph node i booked an appt to see my old oncologist from 05. he put me in a wheelchair and i was straight on the ward. theh drew 4 litres off my lung in the end - i hand a plural effusion. it had also gone to my liver, groin, and spine.

i was forced to retire last summer, bought my dream cxar only to revoke my licence at christmas when it had gone to my brain. Bang went my reflexology course/future business and driving.

i had had no symptoms other than noticing that the dexteroty had gone in my right hand as i was writing christmas cards.

i had 5 days of whole brain radiotheraoy ovver new year and lost all the long hair i’d grown fron 5 years before. i didn’t start having seizures until i’d gone through the agony of being weened of dexmethadone steroids. since then my right hand has been paralysed. not good for an old artist who spent her days doing art and craft!!!

nobody gives you a prognosis after having brain mets, but everywhere i’ve read says 3-6 months. As we are now in June - although i’m still upbeat and planning ahead, subcsnciously i’m very worried.

i’m on phenytoin, gabapentin and back on dexamethasone but i have STILL had about 12 seizures, they are horrible and scary. Please tell me i’m not alone…much love to you all X

Hi Molly
I’ve just been reading your posts about your secondaries spreading to the brain and I’m so sorry to hear this. I don’t have any experience of brain mets but do have bone mets. It’s an awful place to be in and particularly where you are at now with the problems of seizures and partial paralysis. I just wanted to say welcome to the part of the forums no one wants to be in and hope you get some advice and support from others who have more experience or knowledge about what you are having to cope with.
Good luck
Nicky x

Hi Molly. Like Nicky, I’ve just been reading your post and I’m so very sorry that you are having such a tough time. I’m afraid I’m not going to be much help as I have mets in liver and spine but not in the brain. (yet!) I’m sure there will be other ladies who will write and give you love and support and there are lots of other threads which you can go on where the ladies have various mets. Please keep posting, this site is a godsend and everyone is lovely. Take care of yourself, lots of love and hugs, Dianne x x x

Hi Molly what a tough time you’re having. I don’t have brain mets but had 2 friends that lived for a few years after their radiotherapy. Take Care, I hope things improve for you, it’s horrible you are being stopped from doing the things you loved, hoping for better days for you…xx

Thanks for your support, Nick, Jodie and Belinda. Yeah it’s a lionely and scary place to be. The closest age to mine at the hospice is 57. There was a girl of 41, it spread to her brain but she tragically died 3 weeks later. I have a made a lot of great memories, have a fantastic family and support network from my friends. i also have a gorgeous husband who i adore.

i wouldn’t wish this lot on my worst enemy so i sincerely hope you ladies dont find yourself in my shoes at a later date xxxx

Hi Molly

If you feel it would help to talk things over with someone please do call our helpline for further support and a ‘listening ear’. the line is open 9-5 weekdays and 9-2 Sat on 0808 800 6000.

Take care
Lucy

Hi Molly

I wish I had some knowledge I could give you but my mets are in my bones, lung and skin but I just wanted to say I really feel for you, and very much hope that your situation improves soon. I don’t know if you live anywhere near the Royal Marsden but I know some of our ladies have gone there for a second opinion as it reckoned to be the best place in England for breast cancer treatment.

Love and best wishes
Linda

Hi Molly,

Sorry can’t help you with regard to brain mets…You may appear to be alone in suffering the symptoms that sound absolutely awful, yet you are not alone in terms of our thoughts, prayers and best wishes.

I am new to this forum, having only just been diagnosed with secondaries to the bones and a tumour in my chest. I have received an overwhelming amount of fantastic support in the last few weeks. I had a really down time at the beginning of the week, all of the genuine heartfelt messages really did go a long way to boosting my confidence and lifting my spirits.

With regard to you saying that 6 months ago, you felt that you only may have 6 months to live. It is understandable that you should feel intensely worried, but if there’s one thing that I have learnt recently and that is there are so many ladies on her ‘defying the odds’ and ‘living’ their lives with their original prognosis being left well behind! I really do send you all of my positive thoughts and really hope that you find the mental strength to cope under such obviously difficult circumstances.

I also wouldn’t want to wish brain mets upon anybody either, but I hope that somebody on here is able to come forward and support you in a way that only somebody else in the same position as you can,

With love to you and your husband and family

Nicky xxxx

I would like to congratulate you on your post.
I hope that doesn’t sound patronising but if typing and small motor control is difficult for you I commend your tenacity.
Maybe others with brain mets will need someone else to type their response.
I do hope you hear from someone soon but if not phone the helpline for their experienced knowledge of your situation.

I think you’re one brave lady.
If you are able to post again let us know how you are.
I feel so sad for you that you’ve lost your artistic outlet at present. My niece, an artist works at her hospice providing art sessions (not art therapy) for day patients and their carers. I wonder if there is anything around your area???

A tender hug winging its way to you from Kent.

Welsh girl xx

I think you need to be top of the list again!

Welsh girl

Thanks again for your support girls.

I live in Sheffield and i’m luccky enough to havev uks leading oncologist Prof * looking after me. Sorry about the typing errors but its left index finger only these days.

I’ve been attendind St Lukes Hospice for a year - fantastic. It has an art room and up until March, new service users thought i was a volunteer haha. my old job was doing art and craft with adults wih learning disabilities. i miss it so much. I try to visit when i can but cares and parents tend to send them in with colds and viruses and i have to be careful as iam now back on chemo for the other mets.

had a small seizure on weds night but stayed consionce thank heavens. tend to have ear blockage - have them syringed every month and eye has now started closing by itself. right hand limp unti ti have a fit - hurts after - and vein pain fron epyrubicin/vinorilbine chemo as it burns vens. only 4 more to go - finish 14/7/10 then on oral chemo xxx

i cant be the only one on here with Brain mets surely? Hows everyone getting along? xxx

Hi there, I found another thread started by paula1969 which is called ‘brain mets diagnosed’ I think it has been running for a while but someone posted tonight before you so maybe you could connect with them.
Do hope you are coping ok after your seizure on Wednesday and will be able to use that brilliant left index finger and connect up with paula1969!

Good luck in your quest.

Welsh girl xx

Hi everyone, Just thought I would give some support to the minority of ladies who have been diagnosed with brain mets. After masctectomy and lymph node clearance in April 09 following a 3 yearly mammagram I started chemo taxotere and herceptin. Had no idea anything was wrong. Didn’t tolerate the tax well so was given vinorelbine with herceptin. Scan at xmas showed a significant improvement to mets in the lung and liver but then after treatment finished in April was scanned again and this showed imp in the liver but not in the lung. I visit the christie and was offered a trial of Cap/lapatanib, but the trial involved rigorous screening which involved mri brain scan. I had this done on the 14th May 2010 and immedediately was informed that the mets were now present in my brain. I never suspected anything was wrong, no symptoms. Driving licence revoked immediately. I have now had 8 out of 10 whole brain radiotherapy. It does exactly what it says on the tin. Feeling of being drunk and extremely tired. The side effects are supposed to be the same as the met symptoms although I was feeling fine before. I end the treatment on the 15th and hopefully commence another session of chemo of epi/c in July. Chemotherapy apparantly doesn’t work above the neck and so this is probably why brain mets are only diagnosed after symptoms arise or they are found when scans are offered. I am getting through this nightmare with optomism because luck (if you can call it that) has so far been one step in front of me. Only the treatment has ever made me feel rough. Reoccurrence in the brain, if any, will present itself after 6 months so lets hope the chemo will do its job and block any more nasties going to the brain. I will keep you all informed of my progress because I feel this is a new, interesting topic which is only experienced by a few yet I am sure is as interesting to the many ladies on the forum. Barbara xx

Hi,

so sorry to hear your problems. Once you are personally aware of cancer, there is more of it about than you realised, but that doesn’t make it any easier.

We are on the same journey as yourself, and one thing that really surprises me is the unknown factors that crop up that you are not expecting.

My wife, Pippa, was diagnosed with Breast cancer in late 2004, had a masectomy, chemo and readiotherapy, and all seemed quite well.

April 2008, started to feel unwell, and it was confirmed that the cancer had come back and was in the lungs, liver, and spine. Further chemo, herceptin, settled everything down, but April 2009, mets identified in the brain. Same thing, driving licence instantly revoked, and the same thing as you, only then were we told herceptin did not manage to work its wonders in the brain.

May 2009, specific radiotherapy on the affected areas of the brain, with a better than expected,good result. Then carried on with chemo gemcitabine and carboplatin.

May 2010, she can no longer carry on with this chemo, as her white blood cells are not recovering.

We now find ourselves requiring lapatanib, but this is not authoreised by NICE, and we have been rejected by our PCT.

So we are looking for examples of areas where patients have been granted lapatanib by their PCT.

If you have any info or advice, we would welcome this.

We wish you lots of luck

As much as I am relieved to find others in the same boat, I wouldn’t wish this on myvworwt enemy so I’m sorry barbara and pippa X

when I was diagnosed 31/12/08 I was put on oral capcitebinr and iv herceptin. It stopped working in oct - excuse this - I hadn’t pooed for 5 days abd my tri-weekly blood test showed that my liver teshad come back with probs. I had a month of pain & jaundice.

I came off my treatment & ended up having to have anenrma and then had. Stent put in my liver. I looked like 1 of the simpsons , my eyes were green & I itches like mad!

Ibadan a ct scan then. The tumours had grown over my bile ducts so the bile was going into bloodstream instead of intestines and I was poing vomit… Stiatoreeah. Not nice. Stent sorted problem and recovered by dec. Then noticed problem with hand and got the brain mets diagnosed 23/12/09. Had rads over new year and was then weaned off steroids.

Goserelin stopped working April. Lymph nodes on sternem raised and purple - very painul, found lump in healthy right breast, then in other balf went inflammatory and I started rasping / bbbling breath when lying down so recognized plural effusion. On cmbo now of IV epyrubicine/vinorilbine which burns my veins. Verypanful at night. When thAt finishes mid July ( if I’m still here- I plan to be) I then go on oral vinoralbine and possbly back on herceptin. Apparently this is my last shot as they have exhausted all treatments now ?! X sorry about bit below. Have an iPhone and can’t edit it out xxx

Was on monthly injections of goserelin to stop ovaries producing oestrogen. Started seizures in march,

Forgot to mention… Was talking to a nurse whilst she was giving me my chemo last wednesday, and it’s in her opinion that medecinr has come so far now in treating breast cancer, that we are living longer than women before us and unfortunately as a consequence - it’s going to our brains. I’m sure that if this is the case, then women in 5 years time might have a little longer than us. I think that’s comforting to know. I will take any trial going because without them, how will we know what irks and what doesn’t?! Rather me than a guinnea pig… Big kisses to you all. Because if you"re Reading this, u either have bran mets or ur worried that you’ll get them X

Molly - sorry to hear they are saying you are on your last option for treatment - has anyone mentioned the possibilty of trials…? I was treated for primary IBC (inflammatory breast cancer) not sure do you mean half of your breast became IBC (or normal inflammation if you know what i mean…?) One of the girls on the IBC subforum has recently been going to the Marsden as part of a trial…

Here is a link to Paula’s thread - there are a few people posting on there who have brain mets… breastcancercare.org.uk/forum/brain-mets-diagnosed-t25560.html

Theresa x

I am wired - strange day for me today!
As I said on earlier post, I am on IV epirubicin and vinorilbine & have 2 left. I WAS on my week off but had to come back frm visiting parents as the cannulation site looked like a burn. It was confirmed that the Vin is now dispensed in bags and it had leaked from the vein into the surrounding tissue. It was as tho I had held my wrist to an iron. Luckily they caught it in yme & I won’t have to see a plastic surgeon! now drying out nicely : Today my Hubby was taking me and bs mam for Sunday dinner and we pulled in at a function places- penny still didn’t drop. When I walked n there was a cheer ofSURPRISE! Friends frm midlands, uni, biz, primary & secondary,.A& ven a couple of teachers had come down for me. My husband had upladedcfave tracks from last 39 years as I worry why reach 40. it was quite overwhelming. Caroline Monk who does a lot fr BCcwas there - she knows a uni mate.1& my sis had organized it allSxfab day but can’t sleep now haha d

Sorry Rhapsodyangel…in reply to your post, I as diagnosed with DCIS in 2005 and had all lymph nodes removed with mastectomy. Upon reflection as it went from nothing to the size of a grapefruit in 4 weeks 1 was rock hard, painful and more lumpy than a defined lump it was more likely IBC.
My oncologist thinks so too and said thT I may have spread through my body before forming the mass for me to find.
This time _,u know when you take off ur bra ay night and scratch under your boobs? That’s how I found the lump, not painful and perfectly round at the bottom f my right breast. As my breathing and the nodules got worse my oncologist said it was Time go on my last chmo. I had a week to slit wasa week before I started it, in that rme thecide of my breast went hard and painful line it did in 95- even tho the other lump was stll there. Two types f BC in one breast. Sorry about misyskwes - I’ve got dnle vision and my iPhone is playing up. Btw- chemo has more or less got rid of btw and I’m only 3/4 through. Oral vinoralbine nex until it stops working then maybe back on perception too dxx.

Molly - what a brilliant thing for your husband to have organised so pleased that it went so well and that you had a great time…:smiley: xxx

I really hope the chemo continues to work well and is kind to you with side effects… I think there are a few people around who actually had IBC but don’t know it… Jackie and Carole on the IBC subforum were only even informed by their medical teams when they had actually already had a few chemo treatments…

Hope you managed to get some sleep after your exciting day.

Theresa x