Wednesday 9 September 2015
Surgery.. what to do
Dad got a 3rd opinion on surgery today. First two surgeons said no. Surgery is however an option with Dr. Silbergeld at UW (Seattle) but requires that Dad be awake, and that he name items on a powerpoint during the procedure. Dad was at about 61% ability to name the objects in our EGG yesterday and the cutoff for the Dr. to schedule the procedure is 60%. This is not an obvious - yes, you should proceed with surgery decision. There is risk involved. There are three spots where tumor is present in his brain and this was the only section that was deemed operable, but again is in the speech part of his brain. It is possible to make it worse, or to get in there, find that dad can't communicate well enough, and have to shut the whole thing down without any tumor resected. Does anyone have experience with surgery in this area of the brain or with Dr. Silbergeld? Dr. Berger is booked through the end of October and I don't believe we can wait that long. BTW we had stopped Celebrex, Aspirin and Fish Oil in anticipation of a possible surgery.
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I think my friend Jess had a surgery with Dr. Silbergeld.
ReplyDeletehttp://jessicaoldwyn.blogspot.ca/2010_04_01_archive.html
You might want to ask her about her experience.
Also, if your dad does have a surgery, he might be able to join the DCVax trial, but the surgery would have to be done at one of the participating trial locations, which includes the Swedish Neuroscience Institue in Seattle.
https://clinicaltrials.gov/ct2/show/study/NCT00045968?show_locs=Y#locn
Have you talked to Charles Cobbs yet (at Swedish). He's a well-known surgeon and would be well worthwhile in getting his opinion, with the huge advantage that surgery there could mean being eligible for the DCVax trial. Downside of the trial is the 1 in 3 chance of getting assigned to the placebo arm. All patients in the placebo-arm get the real vaccine at progression or recurrence.
Stephen: We are considering Dr. Silbergeld at UW, Dr. Cobbs at Swedish or our original NO Surgeon. I will contact your friend Jessica. We also sent records to Dr. Berger since we would like to consult with him while visiting N. Calif. in case we ever need his talents.
DeleteAs of yesterday, Don is officially dropped from the Novocure trial. :-((( Rule of thumb is "The contrast enhancing abnormality measures >25% change over the course of time."
The docs here are amazed how well he has done since starting Novocure 12/2013. His progression, IF progression, has been very slow. So they took him off the CCNU, as they did with the TMZ prior. Options are surgery to see what this spot is. If it is necrosis, etc, (which I think) then I personally would like him to go back to the TMZ since he is MGMT meth and maybe Novocure as it's not invasive. Not interested in the radiation/avastin trial. Not an Avastin fan until further in the game. Gamma or cyberknife is consideration if we don't do surgery.
Surgery is VERY tempting since it would assist in a proper treatment path. Yet we realize it's nothing to take lightly due to risks.
Any thoughts Stephen? Don is in good health otherwise. Thanks!
Can you continue with the novocure device outside of the trial?
DeleteHas the possibility of a biopsy been discussed, to determine whether this is tumor or something else? A downside of that approach is that if it is tumor he'll need to have two procedures rather than just one.
PET scans can sometimes be helpful to visualize metabolically active tumor (FDOPA PET or FET PET), although this sort of PET scan is not common in North America. I think there are only a few locations that can do the FDOPA PET (including UCLA). The common FDG-PET (using a glucose analog) is not as useful for brain tumors since brain already has a high background uptake of glucose.
For what it's worth, we scheduled our surgery for Sept 17th then after arriving and being d IV, etc. Silbergeld came in and told us that the MRI taken that morning showed the tumor had quadrupled in size and we were sent home. I trust his expertise and got good feedback from Jessica, but the bedside manner of this bomb being dropped wasn't good. Maybe it's standard, I just wish they had done the MRI the day before maybe (?) so we avoided the prep and IV and let down. Cobbs I've also heard is wonderful. I'd go Berger if you have the time to schedule with him. When I called he was booked over a month out. I was told Berger > Silbergeld > Cobbs. Good luck to you. Please keep me posted as I'm also Seattle area.
ReplyDeleteAnnie dear I am so sorry. That's crazy! When was the MRI date prior to that morning in hospital? I agree the day before would have been prudent. Please know our warm thoughts and prayers are with you and your dad.
Delete1st MRI was August 19th so almost a full month before the one taken on day of surgery. But this bomb drop had a huge impact on Dad. The day of surgery Dad drove us to the hospital and was walking, talking, etc very well. The very next day (after hearing it had quadrupled) he was dry heaving, couldn't walk and had pain for the first time. I understand the tumor burden is the real issue but I can't help but believe the bad news was the culprit for our instant decline. I would love to hear what you decide and how it goes. It's a hard road for all of us.
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