Stage IV breast cancer with brain mets

Hi Kazzangnu

It sounds like everything has happened really quickly and that you've had a really tough journey.

I'm not a member of this group but I noticed that you hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list where it'll be more easily spotted. While you're waiting for replies you could have a look through some of the more recent posts in the group and join in with some of the conversations.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi Kazzangnu,

I see your post is from a year ago but not sure if you ever managed to track any others down.

I’ve just joined the forum looking for people in a similar position to me (more info is below). Hope you are doing well

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My situation:

My primary breast cancer diagnosis (invasive ductal carcinoma) HER2+ ER+ was in Dec 2018 and had extensive treatment. For approx last 2 years we thought I was clear. 

In March I was diagnosed with secondary breast cancer that has spread to my brain, bones of skull and liver. I’m In treatment on docetaxel & Phesgo (trastuzamab and pertuzamab single injection) at the moment.

Hi Fiberty, 

i read your story with interest as I too have skull base mets recently diagnosed also in tthe brain.  I’ve actually got facial paralysis on one side which they incorrectly diagnosed as bells palsey!  They’ve been somewhat grim regarding my prognosis but you seem to be doing well which I’m pleased to read.  Ive just had 5 sessions of radiotherapy and they want to put me on Alselib an immunotherapy drug.  I’m going to also check with them the treatment you’re having to compare so your post was really helpful.   

have you had any issues with hearing or eyesight? 

ali xx

Hi, sorry it took so long to reply Ali, I had a rough time with chemo cycles 3 and 4 and new side effects, so I’ve not been online much.

My main symptoms before diagnosis were with my coordination. My balance was off (they thought sinus infection at first) and then I felt drunk when standing or walking which developed into vertigo and vomiting. I hadn’t realised I’d been having problems with my sight until after they put me on high dose steroid to shrink the brain mets. Things definitely looked clearer after a day or two. There were lots of little things I hadn’t noticed had been caused by the tumour growing and so gradually compressing my brain. I obviously had some small hearing quirks too that showed once the steroids kicked in.

Glad you found my post helpful. The main challenge for my current treatment is that I’m showing symptoms of heart failure that can be a problem with both docetaxel and phesgo. They have me on heart meds that are helping for now so fingers crossed it will settle once I stop the docetaxel so I can stay on phesgo indefinitely as planned.

Hope the radiotherapy and immunotherapy approach is working well for you. The facial paralysis must be difficult to deal with too, are your treatments helping with it at all?

So sorry to hear they haven’t been optimistic about your prognosis so far. Have they said anything more to help you understand your options?

Here’s hoping you get better news and outlook as you progress through your treatment and they see how you are responding.

Fliberty xx

Hi 

i have been living with secondary breast cancer for 2 years and 8 months  the secondary was to the bones and been anyway last week I was diagnosed with brain mets feeling really overwhelmed I also am having whole brain radiotherapy just wanted to connect with others in the same situations I do hope u r doing as best as can be x 

Hi to All on the thread, awful circumstances to meet on this page, but I hope we can be somewhat of a support for each other.

i was diagnosed with Breast cancer in 2020 and after a lumpectomy and lymph nodes biopsy, had chemo and radiotherapy. Only had 3 of 4 chemo though as allergic to the Docetaxal and was too big a risk to finish.
the cancer returned in 2022 into my chest nodes but letrozole and ribociclib reduced it and I was in remission. I had an Oopherectomy to reduce my oestrogen in 2023 so went into medical menopause. I’m 50 years old now.

Early this year I discovered the cancer had spread to right femur bone and had operation and radiation on the leg to help me walk again without pain or risk of fractures. Meds changed to exemestane and everolimus, but had to stop everolimus as had rash and mouth ulcers. 

literally just recovered and gone back to work and just knew something was wrong so had the full Ct with contrast as usual, nuclear bone scan and I requested brain mri.

there is further spread through skeleton and skull, liver and brain.

i am about to start WBR on Monday for 5 days. I also have leg and arm radiotherapy on the Tuesday too as these areas cause pain.

i just wanted to reach out to people having WBR to see how they are coping.

wishing everyone the very best of luck with their treatments, and hoping we all can continue living relatively pain free .

all the best xx

Hi there 

me and you are in the same boat similar to you I had breast cancer diagnosed in 2021 straight to secondary though as mine had already spread to the bones went through chemotherapy and now have injections every 3 weeks and bone streghner every 3 month a few weeks ago I also requested a head scan as my right arm and leg are weak and I was really of balance I was told I have brain cancer I actually go this Monday to get my treatment plan to see how many sessions I require it’s so overwhelming but I am trying  to keep it in the day that’s all I can do to stay relatively ok …. Do you have support ? What hospital are you at ? I am going to the royal marseden in Sutton if u need to connect I am here good luck with it all x 

Hi, thanks for your message. 
it’s the uncertainty that gives me pause, otherwise I’m a pretty positive person, I have a fantastic support network in family and friends, and I have a weekly phone counselling session with Helen Rollason charity, I highly recommend this. At first it was quite traumatic as I hadn’t been able to really tell anyone how I really felt in my dark moments, but the sessions now I have a much lighter heart. It really does help to talk it through with someone who doesn’t know you and doesn’t give your their opinion or advice.

im based in Harlow, but my radiation treatment is at North Mids.

i am getting my chemo pill Tuesday week, and will also have Zometa every 4 weeks.

how are you with your support network? 
I’d like to keep in touch regularly with you if that’s ok, maybe we can get through this with determination and positivity through letting each know our experience with the treatment, and any little helpful ideas with how to cope with certain aspects of it. 
thanks again, and Good Luck on Monday. I’ll be thinking of you xx

Nice to read more about you 

I also have great support and would love to keep in contact I’ll email you Monday after my app when does your treatment start for the WBR ? 

Thank you. I definitely feel I need someone who’s going through the same to talk to, and I really hope we can both get something positive out of it.

i start my WBR on Monday, mask was made Wednesday.

Good luck Monday xx