Scared and Confused
 

I just went on Haloven for my lung mets, after consulting with a doctor at Sloan Kettering. (I live in NC.) Meanwhile, my pinky finger on my left hand had gone numb, so I had a brain MRI this afternoon. My oncologist called about 30 min. later to say that I have 16 metastases in my brain, most under 10 mm, but one around 16 mm. I'm shocked.

Going to see radiologist tomorrow morning. I think they want me to do Whole Brain Radiation, bc there are so many small tumors. I am terrified, of course. I'm a writer and a professor, and my brain is my go-to organ. Does anyone have any words of wisdom, experience, advice, for me? I am so scared of radiation in my brain, though they put me on steroids, I guess, to avoid swelling, which would be equally terrible?

Amy was the one whose cancer seemed to be a mirror to my own, and now she is gone. She was such a comfort and a presence on this site.

I thought I would have more time, and that just managing the lung mets was enough of a challenge, but now... I am devastated. RIP Amy. Is there anyone out there who has managed brain mets for some time? Please let me know there is hope!

Thank you!

Re: Scared and Confused
 

Katherine,
No experience of brain mets, but there are many others on this forum who should be able to chime in. Also search the threads. There is a lot of hope out there, but I can only imagine how scary this new diagnosis is.
Best wishes..... Pam

Re: Scared and Confused
 

Thank you, Pam. You have also been a beacon for me. I just want as much time as I can get. I'm turning 59 in two weeks, and I'd at least like to make 60, which is a big deal in Korean culture!

Re: Scared and Confused
 

Katherine,

I do not have experience with brain mets, but there are many on this site that do. I just wanted to say that I can only imagine your fear level presently and promise I will pray earnestly for you. Please keep us posted and I will watch to see what others have to say regarding WBR.

Re: Scared and Confused
 

Katherine - I'm so sorry to read your post and I can't imagine how you are feeling. Just wanted to send my prayers and love out to you!

Jessica

Re: Scared and Confused
 

Hello fellow brain mets traveller!

I had only two places in my head to treat, with one being on the large end of the scale for treating with gamma knife. It was successful to date, which means over 12 years.

You might look at Marvass and a couple of other people who have long experience with treating mets to the brain.

Whole brain rads will most likely ruin your hair making wigs necessary the rest of your life. Unless they have a better way now and this is not a permanent side effect.

Re: Scared and Confused
 

Dear Katherine, just a hug and reach out to you from another Catherine. As Steph posted, others will hopefully share their experience with you. I feel badly that you have received this DX. Please know we are all here for you. I have no knowledge to share, but want to send love and support. Keep us posted.
Hugs, Catherine

Re: Scared and Confused
 

Good news: I met with my radiation oncologist on Wednesday, and she showed me my latest brain scan. I had 16 lesions, the biggest one (16mm) of which was cyberknifed on March 14. I am currently on Haloven and Tykerb for lung mets. The scan shows all of the lesions are significantly smaller, some are almost gone! That means the Haloven and Tykerb are passing through the blood brain barrier. She said, "I've never seen anything like it!" Great to get some good news, for a change. Haloven and Tykerb is an unusual combination, but maybe it should be used more often. Thanks to all for your support and good thoughts. xoxo

Re: Scared and Confused
 

Great news!! Congrats and here's to continued success with shrinking those nasty lesions.

Re: Scared and Confused
 

Katherine, just seeing your post now and so happy for you to read this good response, long may it continue.

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Wonderful News!! YAY!!

Carol Ann

Re: Scared and Confused
 

So glad to hear your good news Katherine! Such a relief.

my best,

Cathy

Re: Scared and Confused
 

Great news Katherine! Wishing for continued success for you!

all the best
caya

Re: Scared and Confused
 

Tykerb (Lapatanib) does cross the blood brain barrier. Who knows, maybe it is "carrying"
the Halevan with it. Maybe Tykerb could do this in combo with other drugs. Worth a try.

Paul

Re: Scared and Confused
 

Katherine!

WooHOO!!!! What great news! Halaven can do terrific things for many. So very happy to hear you are one of them! Best news of the week! You made my day!

Don't write that story!

L.

Re: Scared and Confused
 

Katherine, so happy to read your good news! May good things come your way. We are so lucky to have good doctors and good meds! Group Happy Dance!

Re: Scared and Confused
 

Wonderful news Katherine! I'm doing the group happy dance here :)

Re: Scared and Confused
 

Excellent, excellent news!

Re: Scared and Confused
 

So nice to hear that meant in a positive way. Thank you for sharing your experience combining these drugs. So much of the treatment of disease following progression is trial and error with drug combos. So glad you have found a unique one that works for you. Continued best of luck with your treatment plan.

Hopeful