Help, Just diagnosed with brain mets

[tracy piper]

How are you doing?  I was just diagnosed with the same thing yesterdayand I'm looking for a nice rainbows and unicorns story....  I hope you are doing well ❤️

[Summerblue]

Hi everyone. I have a sad and sorry tale like everyone else on here and now have brain mets. I just wanted to add my name too the list and I’ll respond fully later today. x

[kltg]

Hi there

This might not help you but I had secondaries two and a half years ago in my chest and sternum (original diagnosis 2005) I had Abemaciclib and Letrozole plus cyber radiation. It did shrink and keep at bay for two years but I know have several secondaries in chest.  I have a doctor friend in London and he suggested I see a Professor Johnston at the Royal Marsden. He is involved in several trials and specialises in breast cancer oncology. He did a blood test and sent it to America and they found out the cancer has mutated. I am now on a specific targeted treatment that only came out of trials last September.  I had my initial consultations via telephone. Don't know whether you could investigate and find out if there is anything new out there to help you. My Oncologist in the Midlands had never heard of the drug I am taking. Worth a bit of research???

Good luck and stay safe. My best friend lives in Melbourne so get regular updates from her on covid.

Ruby jane 

[ScaredDaughter]

My mother in law is on exemestane and Piqray. Her health has declined alot since starting the Piqray. She was put on metformin for the high glucose but now taking insulin. Was this a problem for you? If you don't mind me asking...are you taking it with fulvestrant (injection)? Was there anything you did that helped with the side effects? It's so expensive and the side effect are hell..just doesn't seem worth it. Any info would be appreciated. Best of wishes to you!

Thanks, ScaredDaughter

[ScaredDaughter]

My mother in law is on exemestane and Piqray. Her health has declined alot since starting the Piqray. She was put on metformin for the high glucose but now taking insulin. Was this a problem for you? If you don't mind me asking...are you taking it with fulvestrant (injection)? Was there anything you did that helped with the side effects? It's so expensive and the side effect are hell..just doesn't seem worth it. Any info would be appreciated. Best of wishes to you!

Thanks, ScaredDaughter

[Roxyb11]

Hi, 

how are you getting on with your treatment? I have just started whole brain radiotherapy and it’s totally crap but hoping it will blitz the crap out of my Head 

[lageee]

I know how you feel.... is cannibus legal there? It’s great for pain! Neuropathy, and so many other things. 

[Guest user]

Hello, 

I'm not on Facebook. Welcome to PM me.

Angel Eyes x

[Gemzy1889]

It would be nice to stay in touch, but im really useless with this format of chat, i started up a support group last year if you would like to join search on facebook Stage 4 Deserves More Secondary Breast Cancer Support Group UK xx

[Guest user]

Hello Kerry, 

II wish you well. 

Angel Eyes x

[KerryK]

Hello Ladies, I just wanted to reach out to all of you who are living/surviving with brain Mets. I live in Australia so I hope you don’t mind me joining in on your chat.

My journey started back in 2011 when frost diagnosed with stage 2b invasive bc hr+ her2+ I was 44. I had right mastectomy and lymph node removal (4 out of 9). Chemo and radiation hormone therapy and herceptin for 12 months. Everything was going fine until July last year when I went to my Dr for a general check up. Had blood tests and found liver function was high. Anyway, result was liver, lung and spine Mets. Had chemo for 3  months and herceptin and Perjeta every 3 weeks. Everything was going fine tumours had reduced and I was feeling good. About 3 weeks ago I started getting  pressure type headaches. Went to Dr who ordered MRI. Found a number of brain Mets. I am currently having 12 rounds of radiation number 9 today. I’m on dexamethasone and all the lovely side effects that go with that. Like many of you I am still processing this progression but am comforted In knowing that I am not alone. Your posts have been great comfort to me. 

thanks 

Kerry

[dollybrown]

Hello I had primary breast cancer 6 years ago and am having visual symptoms of something going on together with an abnormality on my left retina found at the optician yesterday. I have an opthalmic appointment tomorrow. No nothing definite yet but my husband and I have just about managed to keep it together this weekend.

Just got onto this site and read your story and want to send you a really big hug and to say I am rooting for you😀  

[MummyBreenster]

Hi Gemma

I find it confusing too, it’s hard to know who is replying to who!! 

I’m so pleased to read that you are doing well. I finished my SRS on 16th Sept so 5 weeks ago, I’m still weaning off the steroids. Starting 0.5mg today for 1 week then off!!! I’m still feeling awful, still got left side numbness and tightness which I’m hoping is the steroids making it worse. I seem to have developed a fat pad at the back of my neck which is from steroids. I’ve got no energy, I have the odd ok day then I’m back to feeling rough. I’m just praying once the steroids get out my system things improve.
Thank you for sharing your story, it gives me hope. Any tips you have would be great.

take care and enjoy your girls being off school. I need to find some energy for my 3!!! 
take care

Debbie. X

[Gemzy1889]

Sorry its taken me ages to reply, im not very good on this forum i find it quite confusing who is talking to who and about what lol

Anyway... its 7 weeks since the SRS to my 3 brain lesions and i dont think i have any side effects apart from being extremely tired but its hard to know what causes which side effects when your on so many meds, post treatment, life, kids etc!! 

I have been off steroids for just over 5 weeks and the team think some side effects are withdrawals from them, no appetite, fatigue, low mood etc who knows.

The symptoms i had that led to the brain scan have all gone...i hope thats a good sign, will be scanned beginning of December.

Im a happy bunny this morning as my girls are off school, ive really struggled being left at home alone everyday which isnt like me i like my space to potter and clean and i run a non profit organisation and support group for Stage 4 that keeps me busy and gives me meaning but since having them all home for so long during lockdown i struggled to see them all go every morning.

Anyway im rambling haha hope everyone is doing ok.

Gemma xx

[Mclaire83]

I am so sorry to read your post, my heart goes out to you. 

I don’t have much advice as I’ve only just been diagnosed myself, I’m 37 with a 4 year old daughter. 

i have been making lots of smoothies with cancer fighting ingredients just to give

me a sense of control but I really don’t know what else to do. The hospital don’t seem that keen on anything alternative and just said eat to healthy and get out in the air and make memories x 

[Jemcoop]

I had primary bc at 31 fee -t chemo double Mx then 15 rads.

then 18 months later my left side wouldn’t work then they found 2.8cm mass in brain, I am lucky as Southampton hospital is close and had neurosurgeon there March 2018 then had my three month Brain mri review they saw a spot in surgery area and had one dose of SRS rads July 2018, I have a brain mri 4 To 6 months. I just take each day as it comes. My oncology team are great. I hope you are doing well. 

[nicky08]

Hi Pri19

I won’t go on too much about Alpelisib as this is a thread about brain mets (I may start a thread about the treatment if it is available to more of us). However I found anti histamines helped enormously after a terrible rash happened about 10 days after starting on the tablets (other users in USA mention the same). I used them for quite a while but gradually stopped them over time and the rash has not reappeared.

Nicky x

[Pri19]

That’s very encouraging to hear that side effects sorted themselves out. Did you find any ancillary meds or creams particularly useful? 

[Loulou52]

Hi Gemma,

god you’re so young. I’m 52 and a week ago diagnosed with secondary cancer, lesion on the front left lobe and in my liver. I’m still in overdrive at moment and waiting for the MDT team to let me know the next step. 

Your story stuck with me and wish you and everyone of us going through this that we fight and keep fighting.

im finding it hard to talk to my 10 year old about it and that’s really stressful as I’m really snappy and feel awful. 

Good luck and love 

[nicky08]

Hi

Although I don’t have brain mets I do have liver mets. What I was responding to was the fact you are on Piqray, you’re the first person I’ve come across who is also on this drug. I started it back in June, had lots of ups and downs with the side effects but they seem to have sorted themselves out, for now. Hope you get on with it well and it sorts your various mets out.

Nicky x

[Pri19]

Hello 

I was diagnosed with brain mets just under a year ago. Had WBRT FOR 2 weeks and seemed to work but Aug 2020 showed they were growing again as well as starting to display leptomenegial disease on the brain lining.  

I also had liver mets for which i had 6 cycles of Eribulin. Again I responded very well but my August CT scan showed activity. 

As i have the PIK3 gene mutation i just started a new tablet drug called Alpesilib (Piqray). 

keeping everything crossed that it works. 

[lageee]

How are you now?

[lageee]

I was just diagnosed and had surgery. Hi my name is Gladys I was diagnosed with stage IV Breast Cancer HER2+ in October 2015. It had metastasized to lungs liver and bones.... I was told it was gone. It came back 1 1/2 years later to my lymphatic system and then again  gone.....Well, About 4weeks ago I started getting headaches and dizzy with vomiting . I had a treatment of Hercepin on Friday and when I didn’t show up for work on Saturday my friend / client kept calling, until she finally got me and took me to ER Where they did scans and found the 1 inch tumor in my brain. Dr ***, was very successful at removing the tumor and they feel its gone.  I was hoping to chat with people here on their treatments and how you feel on whatever you’re doing.

[MummyBreenster]

Hi

Great to hear from you. It sounds like you had your radiosurgery 1 week before I finished mine. 
I’m still weaning off these awful steroids. I was on 16mg and 3 weeks later I’m down to 4mg. I’m dropping 1mg every 3 days. 
I still have my left side numbness, which is worse in my head, neck, cheek, shoulder and ear area (this is coming from the brain tumour), but I feel like the steroids make this area much much tighter. During the day it’s worse then eases slightly as the day goes on. 
I really want to be off the steroids so I can see what my side effects are going to be. Before I started the steroids I had numbness but not like this. I was still walking my dog and living my life. I can hardly walk down the stairs now!! 
I think you are doing the right thing staying off the steroids and working through the withdrawals. For me it’s hard to know at the minute which are side effects from brain tumour nerve damage or steroids. I’m just all over the place. I haven’t been out the house for weeks because I look and feel bad (apart from radiosurgery and scans!!) 

Let me know how things go for you, I really hope things improve soon. Xxx

[catokitty]

Sorry you are having such a horrible time at the moment.  I had a nasty experience coming off steroids.  I was on them for two months for spinal cord swelling before, during and after surgery and tailed them off.  I felt terrible for about two months after stopping with complete loss of appetite, feeling worn out and depressed and generally  miserable.  It gradually wore off and I got my appetite back and felt better.  My legs were very swollen and took a long time to get back to normal but they did.  There is light at the end of the tunnel believe me.  I hope you feel better soon.  You aren't alone in experiencing this xx

[Gemzy1889]

Hi,

Im Gemma, 37. I have been living with secondary breast cancer since 2017 (bone only, 2 lesions in my spine) i have been on herceptin, letrozole, denosumab and zoladex since, also had cyberknife to spine last year and have remained stable.

6 weeks ago, i knew something wasnt quite right i had a pressure feeling over my forehead, tingling over the bridge of my nose and i just felt a bit "off it" i spoke to my nurse and she got me in for a urgent brain MRI...where they told me there and then dont drive home you have 2 small tumours.

10 days later i had an appointment to see a consultant and the following week scans and the mask fitting.

4 weeks ago today i had 1 blast of SRS to each tumor which took about 40 minutes. I was on a high dose of steroids and then weaned off them over 10 days after the treatment. 

Since then ive just felt rough, absolutely tired out, no motivation, my swollen moon face from steroids is still with me weeks after finishing them im so achey. I was told last week i was having steroid withdrawals and could either go back on them and wean off again or see it through for a couple more weeks which im doing...prior to all this i lived a good life on treatment, i was busy and positive. Now im shattered and miserable and have absolutely no appetite which again is very unlike me.

Sorry ive gone on!! 

Hope everyone is going on ok happy to chat xxx

[Jill1998]

Hi ,just sending you a big hug and wishing you good luck with your treatment tomorrow .Hopefully your post will get some response from others in similar position soon 🤞🤞Best wishes Jill x

[MummyBreenster]

Hi All

It would be great to hear from others with brain mets and keep this post going.  There doesn’t seem to be many of us on this forum but any advice would be great. I’ve recently been diagnosed with brain mets and I am currently on my 4th radiosurgery session, 1 more tomorrow! 
It has been a worrying journey so far and I just pray things will start improving. 
Ive got really bad numbness on my left side, I’m on high dose dexamathasone which don’t seem to be improving it and steroids bring there own side effects too.  I’m terrified all the nerve damage has been done and I’ll be permanently numb. I’m 48 and I’ve got 3 children (11, 9 & 9).

My history is primary breast cancer 2016, FEC-T chemo, surgery and 15 x radiotherapy. HER2+ , ER. 

Aug 2020 brain mets diagnosis. No other spread but waiting confirmation of back MRI.

Would love to hear from fellow brain mets warriors. 
x

[hazeybebes]

Hi there, 

I was diagnosed with brain mets in June and about to start cyberknife radiotherapy next week so you’re not on your own. My counselling with MacMillan is helping massively but it’s such an overwhelming and lonely experience! 

[Grammy23]

I've been searching the comments for people with similar situations who seem to be doing fine. I have IDC with known lymph involvement and imaging that shows extensive nodules in both lungs, finger-like structures threatening my chest wall and suspicious "stress fracture" on my upper thigh bone and fracture (don't understand how I wouldn't know)of my mid-upper arm bone.I keep wondering why they won't do the mastectomy to at least stop the 6.5cm x 2.1 x 5.7 mass on my chest to stop it while I wait for the PET scan they have now ordered and need approval for. You have had SBC in lung, bones, and now brain. It is survivable?! I just keep looking at all these things adding up and nothing being done to stop any of it and wonder if I'll be here in a year. Sorry to be negative sounding but the more they find the more scared I become. Any advice or positive feedback on what you've experienced with these mets.

[carolsav]

Thank you Aggy. Its a hard time for all of us waiting for results x

[Aggy]

Hope scan went well and you’ll get good news! Fingers crossed for you x

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@carolsav wrote:

Hi thank you. I.finally have my scan date for tuesday after having to.pester and pester for an appt. I know it wont make any difference to.outcome but it feels like progress. Ive handled my sec diag really well to.now but this is just a different level of distress. Anyway we will see.  X

---

[carolsav]

Hi thank you. I.finally have my scan date for tuesday after having to.pester and pester for an appt. I know it wont make any difference to.outcome but it feels like progress. Ive handled my sec diag really well to.now but this is just a different level of distress. Anyway we will see.  X

[nicky08]

Sorry to hear this and I do hope you get some clear answers soon, plus a treatment plan in place. It is a difficult time when we are waiting for results and tests. 

Nicky x

[carolsav]

Hi everyone. Im 4 yrs past secondary diag almost 5 yrs and now waiting for urg brain scan due to.imbalance probs. Im terrified too i hate my body right now. Im 57 but my son is 28 and im so scared of leaving him.behind.  i know i dont even know anything yet for def! Anyway just wanted to add my name to this post. Good luck to us all xx

[Aggy]

Hi Marmaduke,

I hope that your treatment did work, I’m sure you’ll get good news after CT in 3 months time! How scary to think that breast cancer came back after 15 years...

My mum was NED for 4 years, till now, we are also waiting to find out what treatment she will receive, but her MRI showed spot on left lung and kidney, so propably she will be on very different treatment to yours. 

Doctors did warn us that it may take some time as they would like her brain to get sorted first, they are discussing whole brain radiotherapy as all drugs have a little bit of a hard time getting through to the brain because of the blood brain barrier. It’s very scary, at the moment we are enjoying as much family time as possible, mum has actually been discharged home yesterday (op was on Thursday ) so she really is recovering well. 

Getting to your question... I think noone knows if there is something elsewhere untill it shows on mri,  but what I can tell you is that when mum was taken for her scan it came up straight away that there are spots in different areas, we were told that literally as soon as scan finished, so I’m sure if there was something elswhere, you would have known by now.

I hope you’re feeling well after your treatment and fingers crossed for good results! 

Aggy

[Marmaduke]

Hi All,

I just wanted to post on with an update and to keep this thread going as there seem to be few of us out there with brain mets. Good to hear your mum has coped well with her operation and is feeling positive. Reading your posts makes me think of my daughters and how tough it is on them. Unfortunately because of the location of my Tumor I couldn’t have an operation - it would have been so nice to hear it had all been cut out. I had stereotactic radio surgery on Friday, just one treatment I am told it is as successful as surgery just preying for a good outcome on the mri in 3 months time. I think this treatment is similar to the gamma knife which you had Wendy so I hope it works as well for me as it is for you.

I am not sure what will happen next for me as there is some talk of hormone treatment but not expecting a review appointment for a couple of weeks. I do have a big question which I am struggling to understand. My chest, live and pelvis CT scan showed no evidence of cancer anywhere and my primary diagnosis was 15 years ago. So have there been cancerous cells sitting dormant in my brain for 15 years which have suddenly woken up or could there be secondaries elsewhere which didn’t show on the scan ? Thoughts anyone ?

[hoangytrt]

This is a symptom I have to deal with and I think you should go to the hospital.

[Aggy]

Hello! Just wanted to say hi and write here as it’s the most recent brain met topic, I feel like I need some encouragement to help my dear mum fight this horrible disease... she has been diagnosed with brain mets in February, at the moment awaiting surgery to remove the tumor in the brain... it’s so scary as everything was happening without any symptoms untill she woke up one day and she wasn’t able to talk, right side of her body was paralised... she is lucky to have an amazing oncologist, neurosurgeon and the staff in the hospital are so caring. On Monday she will hopefully find out what the plan is in regards to treatment (MRI showed spots in lung and kidney) but we are hopefull that cancer can be treated for some time, my mum is such a strong woman, and so determined to beat the odds and show cancer middle finger... but I am really struggling emotionally, I’m so scared of losing my mum as we are very close, so please, if any of you have any inspiring/encouraging stories it would be amazing to be able to read them

sorry if I wrote in the wrong place, I’m very new to the forum

Aggie x

[susancon]

Hi Marmaduke,

I can get a free bus pass but I haven't.  The thought of getting on and off a bus is terrifying given my main symptom is dizziness.  My PIP was already sorted at the higher rate so don't know if that would have made a difference.

In terms of getting to and from work, Access to Work reimburse me for some of my taxi fares.  Worth checking out of you're still at work. 

https://www.gov.uk/access-to-work

Good luck with the treatment.

[Marmaduke]

Hi Susan,

I am feeling in a much better place now I have met with oncologist and radiographers. They were really informative and answered my many questions ! It looks like I am set to have stereotactic radiotherapy starting in a couple of weeks. I had the mask made up on Friday. I do still have to see a neurosurgeon on Tuesday and he might decide to do a biopsy which would delay the start of the radiotherapy.

I too am starting to struggle with the whole losing your driving license, I still have to call the DVLA to let them know. Were either of you eligible for a bus pass or PIP benefits ?

[susancon]

Absolutely not the only one with brain mets.

Have brain mets which were diagnosed in June 2018 to go along with my lung, liver and bone mets.  I have many which are all relatively small.  Had whole brain radiation therapy which didn't work as long as hoped.  My main symptoms are dizziness/imbalance and left side weakness and numbness.

Just had third cycle of Kadcyla so still waiting for that to get working.  

I still manage to work full time, albeit I'm doing two days from home at the moment.  Get out and about when I can but with the dizziness lots of people are quite intimdating.

My experience is that it was the diagnosis was a pretty scary time as I had little idea what to expect.  So I asked tons of questions.  Every one was answered to best of the ability of the radiation oncology specialist.  I felt much better after that.

For me, there's still life to be lived after brain mets diagnosis.  Just need to plan more around my symptoms and side effects.  The not driving was devastating though.

[Marmaduke]

Thank you so much for your reply Wendy,

I was beginning to think I was the only one on here with brain mets. I have had a CT scan now and no sign of cancer anywhere else. Next is an appointment on Friday to discuss treatment. I am still working but have reduced my hours as seizure medication making me very tired. I do have a Facebook account but not sure how I would find you ?

[wend3]

Hi Marmaduke, 

No clue how these forums work as I have not used one before! I also have brain mets. Had first BC diagnosis 7th august 2015 age 37, then diagnosed with brain mets (left temporal) on August 10th 2018. I also basically got told next to nothing! I have had gamma knife treatment last September which appears to be working as the tumor is getting smaller. Waiting for results is the absolute worst thing ever! Think mine was 2.4cm when i had the treatment and now is 1.4cm and no more have appeared. I also have a daughter (aged 18) and it was the worst thing ever telling her. There seems to be no support as such for people with brain mets, as in a seperate forum or where to find meet ups. I'm from near Halifax, West Yorkshire. I haven't changed anything about my lifestyle and don't really intend to apart from maybe stopping smoking. Hope you are doing ok and have some support, I dont keep up on here but you are welcome to message me on fb if you like 🙂 best wishes

Wendy

[Liz0418]

hi I am 14 years post bc initial diagnosis and was found to have mets in chest pelvis and spine plus 2cm breast tumour in original site havent had and investigations for brain mets. Been on letrozole and ibrance for 11 cycles which has shown reduction in 4 of 6 tumours and everything stable on ct scans have had a scan every 3 m0nths since starting treatment april 2018. I know its scary but treatments are out there and I have managed Ibrance with little side effects and people are living ith secondaries for much longer. Sending you love and support to u and your family Liz

[Marmaduke]

Hello,

This is my first time on the forum since my primary diagnosis 15 years ago. Following numbness in the right side of my face and a few episodes of facial spasms I had an mri scan and found out on Thursday I have a 2cm brain tumour in the left frontal lobe. Utterly devastated after so long, I have had a few scares over the years but it’s finally got me. I now have to wait for chest, pelvis and liver ct scan which will be in the next 2 weeks to see if cancer anywhere else - which I am guessing there will be as I don’t think brain is usually the first place to spread. It will then be a wait for those results before treatment.  Seems such a long time with life in limbo and terrified it is getting worse.

Myself and partner told our 2 daughters last night (aged 21 and 24) - it is so hard to be the person who devastates their life’s we are very close and the tears haven’t stopped as we are all thinking the worst. I don’t have anything to comfort them with as I can’t imagine what it would have been like to without my mum when I was there age. I didn’t expect to make old bones but not ready to leave all my family yet - only 53.

I realise there are not many people on this forum with brain mets, which is scary in itself but wondering if anyone can help me to know what to expect and how to help my family come to terms with what the future holds. Also I just feel I want to do something to help myself. I have not been told anything except don’t drive. Will diet and exercise help or am I clutching at straws ?

Just don’t know where to turn, I have the job of telling my 76 year old Dad this eve - we lost my Mum 2 years ago and my sisters husband last year. Life sucks at the moment !!