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Mets to skull

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

Anyone out there have any experience with mets going to the skull bone base?  
Im a stage 4 dx the end of 2016, details in bio.  we have been playing whack a mole with various mets to liver, lungs, and chest lymph glands, I go in and out if treatment as needed.  I developed jaw, facial and ear pain tin late April. The pain was intermittent , but severe.  At any rate I finally got the dx of skullbase bone met, its a large one putting pressure on my facial nerves, thus the pain.

currently i am doing 5 SBRT tx to my skull, these are palliative for pain relief, then will be starting on systemic chemo, FOLFORI with Avastin.  I haven't had this combo since Jan of 2019 so i hope it will work. 

Any experiences, Id love to hear from you.

and a word to the wise. Explore any kind of pain thoroughly.  Push , push, psuh.  I didnt Push hard enough, i really thought this was a delayed neuropathy from the oxie 

No one no one imagined this was in my skull. 
p

Trubrit's picture
Trubrit
Posts: 5489
Joined: Jan 2013

I am sorry to hear this.  And no, I have never heard of CRC spreading to the skull bone, just up and into the brain. 

You advice is being taken to heart by me, as I find it very easy to write off things to getting older or being paranoid that the Cancer is back, when everything should at least be investigated.   

I am sending good vibes your way and will release you name to the Heavens.  I pray this chemo combo will knock the mets all gone. 

Tru

DanNH's picture
DanNH
Posts: 150
Joined: Feb 2021

PamRav I hope and pray that the Folfiri will knock down this recent threat. This stuff never gives up... 

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

Oh no Pamrav. Dont really want to read it... I hope radiation and chemo will have an effect and decrease the pain and destroy a lot of cells. I know that cancer spreads to the bones, skull bones I did not hear yet but then there are a lot of bones in our body. 

I think it was for breast cancer but somewhere I read that bones mets are better in prognosis than mets in lung or liver. 

I cross my fingers for you!

Tueffel

abrub's picture
abrub
Posts: 2175
Joined: Mar 2010

The new specialized treatment was  developed at Sloan Kettering and written up in this MSK’s Summer newsletter, where they refer to over 1000 cases (mine makes at least 1001!)

To see the article, go here. https://www.mskcc.org/msk-news/summer-2021/radiation-reimagined-how-msk-experts-radiation-oncology-are-transforming-care-metastatic

To watch the video: https://www.mskcc.org/videos/msk-echo-software-changing-radiation-treatment-everyone

As I only had the treatment 3 weeks ago, we don't yet know if it was effective.  MRI on Sept. 2 will tell the next part of the story.  However, supposedly it has a 96% efficacy rate (who ever heard of such a thing!)  I had 24 grays of radiation in a single treatment with a goal to completely obliterate the spinal met.

Alice

 

 

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

Thnaks all for your kind thoughts.

Guess I'm going to be the test case on this mets....I will post on my progress.  Maybe someday it will help some one else 
Thanks for the info, Arub, I will be checking it out.  Always good  to know there is something else possible out there.  

grammadebbie's picture
grammadebbie
Posts: 471
Joined: Jun 2009

So sorry PamRav that you are going through this.  I don't have any additional information for you but am glad to see that there may be some new treatments available.  Will keep you in my prayers.

Debbie

 

Ruthmomto4's picture
Ruthmomto4
Posts: 706
Joined: May 2013

I am sorry this is happening sending my thoughts and love 

sreekanth
Posts: 61
Joined: Apr 2017

Really sorry to hear this. Regards and prayers

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

I did 5 treatments of SBRT    I was told my pain will get worse before it got better and that was exactly my experience. I felt foggy and tired for about seven days post radiation. I had fullness in my ears, like swimmer ear. If i bent over my head felt like it would explode.  I was given 10 days of Decadron starting out with a high dose and then tapering . The Decadron made me have the wildest dreams when I could sleep but mostly it gave me insomnia and made me feel yucky. Now I am 11 days post radiation and the pain is mostly gone although once in a while it does strike. I'll be starting on FOLFIRI & Avastin every two weeks on Monday. I am posting this in case someone sometime has skull mets and wants to know what it's like.

Trubrit's picture
Trubrit
Posts: 5489
Joined: Jan 2013

I am happy to hear that you are post radiation, and pray that each day you start feeling better - well, until the side effects of chemo hit you. I hope they are mild. I think you have been through enough. 

Your information will surley help people in the future. Thank you! 

Take the best care, and continue to keep us posted. 

Tru

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