Scared and Confused

[KatherineM]

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!

[Pamelamary]

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

[KatherineM]

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!

[Laurel]

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.

[jra40]

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

[StephN]

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.

[Catherine]

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

[KatherineM]

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

[Donna H]

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

[tricia keegan]

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

[Carol Ann]

Wonderful News!! YAY!!

Carol Ann

[Cathya]

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

my best,

Cathy

[caya]

Great news Katherine! Wishing for continued success for you!

all the best
caya

[donocco]

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

[Laurel]

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.

[Catherine]

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!

[jra40]

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

[MaineRottweilers]

Excellent, excellent news!

[Hopeful]

"I've never seen anything like it!" 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