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June 26, 2013 at 6:05 pm #21404
so I had my scans yesterday for measurable disease to get me into PD1 trial and to rule out brain mets.
good news–i’ve got measurable disease.
bad news–brain mets. 3 around 1 centemeter, and 1 less than 5 mm. I am scheduled to see Dr. Kondzolka, Director of Stereotactic brain neurosurgery @ NYU. Tomorrow is consult, Gamma Knife procedure is probably Tuesday. He used to be at University of Pittsburgh…anyone know of him?
So I guess I’m stage IV now.
I was crying on the phone when Dr. Pavlick told me.
I guess I’ll post more after I see Dr. K tomorrow…my husband is coming with me…can anyone suggest questions to ask?
I know some of you have had Gamma Knife, can you please share your experience with me?
KarenJune 26, 2013 at 7:21 pm #61514Dick_KParticipant
This news really stinks. After all you’ve been through…
I hope you get the answers you are looking for and wish you all the best.
DickJune 26, 2013 at 9:25 pm #61515Catherine PooleKeymaster
I’m so sorry this happened, I know how excited you were to start the Pd1. Gamma Knife works very well on brain mets and many folks here have had it and moved on to the next therapy. Disappointing yes, but not the end of the road. I would ask how many sessions and whether they will provide relaxation meds for you. I would want that to ease the stress. I’m sure others will have some good ideas and will share their experiences with you.June 26, 2013 at 9:51 pm #61516bettinParticipant
sorry for the bad news- these screening exams for trials are simply horrendous. I hope they do allow treated brain mets…
My husband had Gamma Knife for 3 lesions and to be honest, it wasn’t bad at all. The frame that they screw to your head to make sure they only irradiate the mets and not healthy brain looks terrifying- my husband joked whether I thought he’d audition for Star Wars now?! and we walked around with him wearing it to get some coffee- but apart from that, Peter had no problems with the treatment at all.
Wishing you all the best!
BettinaJune 28, 2013 at 12:04 am #61517
Thanks for the replies. Catherine, one session, and he uses a sedative. I asked if I could take Ativan that morning, and he said “we’ll be giving you something a lot strongest than that.” Music to my ears!
While I won’t be “out,” I should be drowsy & relaxed. I’m scheduled for Tuesday, 7/2 at 5:30 am! Sadly, NYU’s Gamma Knife machine washed away in weather event Sandy; happily one of the sites the doc uses instead is exact same machine 15min from my home.
Bettina, I was so happy to read your reply, it means a lot to me.
I’ll let you know it goes.
PS On day 28 after the gamma knife, another MRI then hopefully onto PD1 trial.June 29, 2013 at 12:17 pm #61518Catherine PooleKeymaster
All sounds good Karen! You have a great outlook and I know this rollercoaster takes us all for some unexpected rides. It purely sucks to put it bluntly. So keep us in the loop and how everything goes. We’ll be thinking of you!July 1, 2013 at 2:20 am #61519tasjacquesParticipant Hi Karen,
I pray and hope all goes well on Tuesday! It does suck what you are going thru, and hope soon you can join the PD1 trial.
My husband was able to enter one, and still to early to know if it working or not.
Best wishes, and thank you for always sharing in a positive way.
Elenise (Jacques’ wife)July 1, 2013 at 7:40 am #61520BrendanParticipant
Good luck tomorrow. The experience itself isn’t too bad (I think I brought my iPad!!), and it felt good that the doctors and I were being aggressive. Keep us posted.
BrendanJuly 1, 2013 at 1:59 pm #61521buffcodyParticipant
I had an almost identical experience back in December to what you will have tomorrow. Mine was not officially Gamma Knife but pretty much the same, on a Linux machine. It is a wearing day because of all the time that will be taken getting everything right so that when you are ultimately zapped, the rays will be directed in just the right place. The worst part was probably tedium and not being able to have one’s head in the most comfortable position during the wait time. As far at the helmet was concerned, the only thing I remember now was that taking it off was a little and I mean little painful. But not for long and not much. Seems to me that we watched a movie or two during the day that we brought along. Results were good. Two tumors that I had responded well. No cancer in the brain now and apparently none since December. My two were between 1/2 and 1 cm. No pain. But I did have a return visit with a seizure generated by the residue from one that was still appearing on my scans. So you may want to ask them how they can be sure you can guard against that possibility down the line. The other one disappeared totally back in March.July 1, 2013 at 3:39 pm #61522gostanParticipant Karen
Best of luck tomorrow. I had SRS on June 7th and I really feel fine physically. I was just a bit cranky from the Kepra and prednisone that they gave meduring the pre/post procedure, but that passed pretty quickly
The tough part for me has been waiting for the time to pass so that I can have another brain scan and hopefully begins my clinical trial, that was backburnered by that one unexpected brain met.
We all look forward to hearing about your own experience real soon.July 1, 2013 at 6:29 pm #61523msue5Participant
I am so sorry that you are going through this. Hopefully the Gamma Knife is going to take out those little buggers. Its hard to hear Stage 4 but to me it was almost a relief to finally hear those words. It meant I could finally get some treatment. Stage 3 was hard for me. Are you still on Z or are you doing a washout? Keep me posted my BRAF buddy! I am thinking about you and hope all goes well. I know how upsetting these setbacks can be.
Mary SueJuly 3, 2013 at 12:22 am #61524
Well, it’s done. Eleven mets instead of seven. Doc believes it’s because the MRI they use for the Gamma Knife is many times stronger than than the standard MRI–it picks up much smaller mets.
I enjoyed lots of sedation–the metal headpiece wasn’t fun but livable on drugs.
He’s optimistic that in 28 days we’ll take new MRI and be on to anti-PD1
The case was long–arrived @ 7:30 am and left @ 3:pm. Tired & resting now.
PS Mary Sue, I did Zel washout for trial;screening MRI revealed the original mets.July 4, 2013 at 3:47 pm #61525odonoghue80Participant
How did the gamma knife go? (mine wasn’t all that bad, just a long day at hospitable but feels amazing once finished/over). Good luck.
I’m curious to how this brain met plays out for possibility of PD1 and what your docs say about being a candidate for PD1? Seems confusing to me? If you, or anybody else can provide insight or details about this I would appreciate it.
I recently had a seizure exactly 6 months post radiated brain met and am waiting on new images to determine if tumor activity or necrotic inflammation/swelling that caused seizure. I’m doing well on Zelboraf but want to have options understood if need to act soon.
Thanks, ShaneJuly 4, 2013 at 7:42 pm #61526
Thanks for asking… I’m still tired. Apparently because so many nets were found.
It’s a 28-day waiting period… After 28 days and a stable MRI (stable and/or no NEW mets) let the PD1 begin. As far as I know, most trials require a clean brain MRI) before beginning them.
Take care& best of luck with the Zel.
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