Anyone here with Mets to brain pleae share ? How did you find out ? My sister is going tomorrow for a mri she had double vision

[Rego-park]

Please share who has Mets to brain my sister has double vision going for a mri tomorrow

[Hidden]

Hi,Unfortunately I have mets to brain, 'innumerable lesions' i was told last March. I was sent for a head CT in the February as I'd mentioned tinnitus being really bothersome in left ear, we weren't expecting the brain involvement as I was asymptomatic, apparently tinnitus isn't a known symptom of brain mets.

I had 10 sessions of WBRT last November and was having kadcyla infusions every 3 weeks until recently due to progression elsewhere in the body.

Fingers crossed your sister gets good results from scan.

[Winner123 in reply to Hidden]

How did you find WBRT please? If we get a "no" to SRS today, we will have no option. We were reluctant due to hair loss, brain fog, cognitive effects ect. I really hope it went well for you. XX ❤️

[Ursula_I in reply to Winner123]

Hi, I have just finished a course of WBRT. I felt really ill the first day (nausea, headache) but not bad like that since. Slightly more tired and I wake every morning with a headache, which I suspect is due to the RT causing some brain inflammation, made worse by pressing against the pillow all night. Same this morning but after an hour or so it has gone away.No hairloss as yet although my scalp is a bit itchy.

They said the side-effects would peak about 2 weeks after the WBRT (I only finished two days ago)... but so far it's been much better than I thought.

Best wishes and good luck to your wife and to Rego-park's sister

Lucy x

[Hidden in reply to Winner123]

Hi,I found it easier than I was anticipating. I didn't feel unwell during it apart from after first 2 sessions ,I felt sick and dizzy but it passed and I was just doing my daily stuff, little more tired during the evening. For months after I'd get ad hoc head pains but was told it was still the RT working.

Don't particularly get brain fog and if I did, I wouldn't know what to attribute it to as had lots of treatment over the years.

I lost my hair just after finishing RT but it's like a crew cut now, once it got going it took off!

Wishing you all the best.

[Rego-park in reply to Hidden]

Hi so happy for u did it kill the cells does it work did u try cyber knife ?

[Hidden in reply to Rego-park]

It significantly shrank all the lesions. Too many to have cyber knife do I had to choice to have WBRT.

[Rego-park in reply to Hidden]

🙏🙏🙏🙏🙏🥰🥰🥰🥰

[Rego-park in reply to Hidden]

She had brain but now spine they r putting in the hospital

[Ursula_I in reply to Hidden]

Thanks for this xxxx As I have just been scared by the "months not years left" approach by all the medics 😢. Seems v defeatist.

[Winner123]

Hi there. We were diagnosed with brain mets almost a year ago. They tried to rush us into WBRT which we really didn't want. Capecitabine and THC oil both cross the blood brain barrier so we watched and waited. The large cystic lesion at the back actually shrank. We were offered SRS in Jan which, with hindsight, we should have had. We left it a little too long and they have progressed more now to the point our local hospital, the queen Elizabeth won't do SRS. We are awaiting a decision today to see if the royal Marsden will, we are hopeful. We had to ask lots of opinions to get to where we are, that would be my advice to you, get second, third opinions on your treatment. Susie had a fit last week (due to brain mets we think) be aware of that, it's scary when it happens. If you prepare yourself, might be easier. I wasn't prepared at all. I hope any of that info helps, it's just our own journey.

Best of luck. XXX ♥️

[Rego-park in reply to Winner123]

What is WBRT?

[Rego-park in reply to Winner123]

She has brains Mets but now spine they r putting her in the hospital

[Rego-park]

What is SRS ? Hope your treats working

[Winner123]

Whole Brain Radio Therapy

[Fifilatour]

Hello - I was diagnosed with MBC in September’21. Liver, bones and nodes. Started on Ibrance with terrific results at the first 3 month scan. Unfortunately, Ibrance stopped working shortly thereafter. I found out at my second theee month scan in March ‘22. At that same time I had a brain mri as I was having headaches. Turns out the headaches were sinus related (!) but the mri showed 17 lesions all over my brain. Most were 1-2mm and a couple in my cerebral cortex were more like 4-5mm. Started Cyber Knife treatment immediately. Four days of treatment and they were very confident they zapped them all. Seasick for a couple of weeks due to the tumors themselves as well as the CK. Found OTC meclazine worked way better than Zofran (I wasn’t nauseous, I was seasick.). Feeling fine now - balance is pretty much back to normal. No headaches. No seasickness. Only issue is that my left eye is wonky and I get double vision when I look to the left. The docs say give it some time as it might be related to post-CK inflammation which is normal and expected. So I’m being patient-ish 😜. It was truly nuts to find out about the brain lesions. This MBC journey never ceases to surprise. But I have hope and there is so much amazing treatment out there. Best of luck to your sister. Xoxoxoxoxo

[Rego-park in reply to Fifilatour]

I’m glad to hear but is it working for brain did it shrink ?