BRAIN METS=Update Journey Please

Believe51 · 08-13-2007, 01:25 PM

With so many friends affected with brain mets, I would like an update from all. Just pop in to let my hubby and myself know how you are doing with the journey thus far. I know there are several members that are waiting for scans, please check in too. We are interested to find out how things are with you all!!

Praying For You All>>Believe51

Susan2 · 08-13-2007, 02:01 PM

I'm 14 months from my initial MRI with issues and 8 months from gamma knife. Over the 14 month period, my scans have shown remarkable improvement and my tumor markers are back in the normal range. Life is wonderful!

Best of luck to you and yours...

Susan

hutchibk · 08-13-2007, 09:49 PM

I had my MRI today to see where we stand. I chose to sit back on WBR or targeted rads to see what the Tykerb/Xeloda might do to the brain mets since they cross the bbb. I have never had symptoms from the mets. Will let you know as I know more. I plan on targeted rads in the future if Ty/Xel doesn't dissolve them away.

PinkGirl · 08-14-2007, 07:20 AM

I read ( in Brenda's signature) that AI's were stopped because of
brain mets. Why is that?

hutchibk · 08-14-2007, 09:23 AM

He took me off of them 3 months ago when we diagnosed the brain mets because he said that it appeared that they weren't doing anything for me as I have had 3 recurrances while being on them. Then I asked 3 weeks ago if we should consider bringing them back into the fold with the Tykerb/Xeloda and see if they add anything to the mix, and he said definitely not with brain mets. I don't know why, but I plan to ask him the whys and wherefores tomorrow when I see him and will report back.

Weds 8/15 - saw onc, asked question...
<< OK - I asked him today what he meant by that, and I assumed something different than what he meant...

I asked a few weeks ago if we should consider a new AI now that I had brain mets, instead of just going without. His answer was, "no, not with brain mets..." - He misunderstood what I was asking and I misunderstood what he meant. What he meant was that with brain mets, he wouldn't consider an AI/hormone treatment to be adequate treatment on it's own, as he thought I was asking about using that INSTEAD of Ty/Xel, and I was really asking about adding it in with the Ty/Xel (which he said today was not necessary)... I thought he meant that an AI was bad for you if you had brain mets. Just a simple case of doc and patient speaking a different language, and as I joked today, a man not listening fully to a woman's question. He smirked, said that his wife tries to claim that all the time. LOL >>

dchips1 · 08-14-2007, 07:46 PM

Mine as of last month 6 are still gone. I have to wait till 2 months to repeat the MRI. Overall feeling good, brain recovering from WBR and just had to stop herceptin last week, makes me nervous. Good luck to you and yours

Darita

Angela · 08-14-2007, 08:16 PM

I had my MRI yesterday. Good News - there is no change since the last MRI which showed that the only thing left was a small 2 mm spot. I want to thank everyone for all of their prayers.

tousled1 · 08-14-2007, 10:11 PM

I'm scheduled for CyberKnife Monday to zap away the 5mm met. I'm fortunate that it's only one met and that it is so small. I had/have absolutely no symptoms and it was found on a routine yearly scan.

rentrac · 08-15-2007, 06:00 PM

Had my 3rd MRI yesterday after Gamma Knife in April for 2 brain mets, the most frightening was a 2.9cm tumor in the right cerebellum. I loved the news: at least 50% shrinkage from the original and considered scar tissue, now, by my neurosurgeon. ( I imagine them as dead bugs lying on their backs with feet in the air and big Xs where their eyes are... just shells of their former selves). Best of all- no new mets found. I'm currently on Tykerb and Xeloda; we gave up on herceptin.

By the way Tousled, have you ever had Cyber knife before? Had my first experience with a mediastinal node last May. I couldn't help but think of it as a mechanical, gentle and curious Tyrannosaurus Rex that kept moving around looking at me with it's head upside down. I almost got the giggles during the treatments!
Rentrac

tousled1 · 08-15-2007, 06:35 PM

rentrac, I have no experience with the CyberKnife so Monday will be my first and hopefully my last. According to my radiation oncologist one treatment should be enough to zap it into neverland! Your story made me laugh.

Christine · 08-15-2007, 08:29 PM

I was first diagnosed with 3 CNS mets June 1999. A six month follow up showed numerous lesions and a few more tumors. Received WBR over 20 days.

One more tumor 2003 Gamma Knife successful.
Another one January 2007 Gamma Knife Successful.

Due for another brain MRI next week, My rad/onc is exxtremely optimistic for my long term survival. "You'll die from old age - not brain tumors"

Hugs and the best to your husband.
Christine

Believe51 · 08-16-2007, 05:26 AM

Rentrac, I try to let each day begin with a smile or chuckle. You will be glad to know you are the one today to provide that to me. When we look at his next scan I hope to the we see bugs laying on their backs!!

Hubby was due to start his Tykerb/Xeloda on 8/13, but has still been experiencing stomach problems. We are almost there. I wish you the greatest of luck and I send continued prayers, thanks for the visual!!>>Believe51

PinkGirl · 08-16-2007, 07:46 AM

Thanks for the explanation Brenda, and congrats on the great results you are getting from the T/X combo. I am really happy for you.

Believe51 · 08-17-2007, 12:42 PM

I know this may be like 'beating a rug', but I would love to hear from some more of you girls. Really need your imput. Lu Ann....where are you?? Are you with Steph?? Or are you with our other brain met friends?? Come on Girlie's, I know you are out there 'cause I pray for every day!!

Please write as soon as you are up to it. When we are done we can take that 'Scream Ride with Ma' and have 'Chocolate Martini's with Sheila & Chrissy. Brenda will provide Tumeric Tea for refreshments later!! And if we are really lucky we can get to see those bugs on their backs with X's for their eyes like Rentrac did!! LOL

Loving You All>>Believe51

Barbara H. · 08-17-2007, 01:08 PM

I just want to let you know that you have been in my thoughts. I was away in Michigan and when I returned I had to set up my new classroom. This is a lot of work because I had to move to a different classroom and I have accumulated a lot of books and materials over the years.

My last MRI in June showed improvement from radiation necrosis. I have had surgery for this twice in addition to remove the tumor. I was originally diagnosed with a 3cm tumor to the left prefrontal cortex in May 2004.

I currently only have visible mets with scans in the bones and I am waiting for a trial to open up, hopefully soon, because I am currently off all treatment, except for Zometa.

That's my current situation. School will be starting soon and it is scary not knowing what my treatment will be. If I go back on regular treatment, then I will be disqualified for the trial. I am anxious and therefore have not written much, although I read all the posts, and my thoughts are with everyone. Your post about insurance issues broke my heart.

Best regards,
Barbara H.