Anyone with skull (Calvarium) mets having headaches?

[PlutosNose]

I was recently diagnosed with metastasis in my skull and have started having headaches Is anyone else having this side effect? It’s scary!

[Discocat]

Yes to both.

I have skull mets from start of diagnosis almost 4 yrs ago...specific areas have never been mentioned...but on my last bone scan imagery I can see a bright up take at the top of my head, all around my nose cavity/sinus area and also at the back where skull meets spine. I have head aches that come and go ....mostly at seasonal/weather changes, which might be to do with atmospheric pressure. Sometimes have sharp prangs and other times a sensitive ache where it hurts to touch my scalp....feels like wearing a high ponytail pulled too tightly at the top of my head area.

No progression has shown into other skull areas so far and my oncologist reassures me to not worry about brain progression.

I asked her early on as the fact that my whole spine is also compromised freaked me out and made be think about spinal fluid, nervous system and brain issues.

As time goes on it gets a little easier to get used to...but I think most of us live with the expectation of waiting for something to unfortunately change.

Sorry don't know what else to say other than that your not alone in your circumstance.

Take care

Love Zoe

xx

[PlutosNose in reply to Discocat]

Thank you Zoe.. a little less scary now

[Discocat in reply to PlutosNose]

Feel free to message me personally any time you have a worry....we seem to be in a similar situation with skull mets and meds

[PlutosNose in reply to Discocat]

oops... will do

[jersey-jazz in reply to Discocat]

Dear Disco------I have read that cancer to the skull is on a different path than the brain. The may be near each other but there is no transference. I hope this makes you less anxious. It did to me. I too have skull mets. I had my very first radiation and immediately, I lost much of my memory for names. I remember their tele numbers, though.

[Discocat in reply to jersey-jazz]

Thanks for the reassurance.Sorry to hear of your radiation therapy causing some memory loss.

Why were you offered this treatment...if you don't mind me asking?....I've not been given that option so far, but it seems to be given quite often in the USA it seems.

[jersey-jazz in reply to Discocat]

The reason that I was put on radiation is because my oncologist said that my liver cancers were so bad that I should not be on cancer drugs. Last year, I had acute liver failure twice. The radiation was to stop the progression, not to fix anything. I had always refused any radiation and I still hate that my body was subjected to it. I have finally been put back on drugs, to wit this good news about Truqap. I lived in Scotland for most of thirty years and admire the care that is given there. I shudder to think what may happen here with Gross Hitler at the helm.

[Discocat in reply to jersey-jazz]

Thanks for explaining...I thought it was for the bone mets.Good news that your back on meds again!

Wishing you a good run on the new drugs.

[jersey-jazz in reply to Discocat]

The radiation on was for bone mets to my neck, bottom of my skull, top of my spine. Also. radiation was given to my left hip/femur. I had complained of pain and numbness there. I never did see that I had cancer there. Who knows. I see the oncologist too infrequently.

[PlutosNose]

will do!

[Timtam56]

yes I get headaches a lot. And every single time I get one I think the cancer is moving to my brain, or that it’s something more sinister. Of course we do. I have Mets to Calvarium, spine, ribs, sacroiliac and now liver. Too many Mets in spine and ribs to even mention them all. And lots in my skull. I’m just trying to live the best life I can and not let the fear override my days. 7 years now.

Take care and I hope you go very well with your treatment.

[Dragonfly2 in reply to Timtam56]

Ah, Timtam…you are a trooper! Best wishes for a long and fulfilling journey !

[monkeygirl62 in reply to Timtam56]

Congratulations Timtam56, on 7 years!! That's amazing. Hugs 🤗, Alicia

[PlutosNose in reply to Timtam56]

7 years.. That's wonderful! Makes me hopeful.

Wishing you 7 more!

[Dragonfly2]

hello Pluto! I was diagnosed with MBC in 2020 and scans showed I had skull Mets. They are still there after oral treatments …but , knock on wood, no headaches. The radiation doc had offered radiation treatment for the skull when I was getting treatment on my pelvis. I declined …just wanted to keep things easy at that time. I guess that’s always an option if th8ngs change. I’m on Piqray at the moment ..scans coming up in April. Fingers crossed! Best wishes 🙏🙏🙏🙏

[PlutosNose in reply to Dragonfly2]

...so good to hear from fellow traveler, it calms me down. Thank you for taking the time and I hope your scans show improvement with Piqray.

[sancarlos]

Yes!!!! I was scanned in February and they discovered Mets in my skull all over! I get terrible headaches, the worst being my jaw and teeth. The only relief I get is from Celebrex for a few hours.

Hope this helps. Let me know how you do.

[PlutosNose in reply to sancarlos]

I'm so sorry. Mine aren't that bad yet but I'll keep in touch if my onc has a any good suggestions. I Just went onto Orseru so maybe that will slow things down.

Take care of yourself.