DOPA results & treatment options

Went back to UCLA to get the results of the DOPA PET scan. Unfortunately, the area on the dopa scan is positive which does indicate tumor. It verified that it is the same area of contrast we saw on the earlier MRIs. The new tumor is in a crescent shape around the resection area and has infiltrated into more sensitive areas of the brain.

options
surgery – at this point, the tumor is not causing any symptoms, the risk with surgery is that it can possibly take away tumor, but can cause symptoms that would be undesirable; unfortunately though, without tumor we can’t do dendritic cell vaccine

radiation – is an effective therapy, however, since it was given only 5yrs ago, it probably is not long enough to repeat and increases the likelihood of radiation damage (tissue breakdown) which again can cause undesirable symptoms

chemo – there's alot more data that exists today that when temodar was used successfully before and recurrence occurs greater than a yearafterwards..patients typically do really well on temodar again. This is Plan A that Mark is choosing for the first fight. Mark has already taken round 1 and we're waiting for the bloodwork on day21 and day28 before doing round2. We also asked about the risk of leukemia? Typically the risk is higher when you do a continual dosage which is why we stopped after 2 years. If a patient had a durable response while on Temodar the first round, it is a reasonable initial treatment choice for recurrence.

Metronomic doses of Temodar? – instead of 5 out of 28, it can be done week on week off or 21 days straight, it tends to affect white counts more (concern for Mark since he had issues with low counts last time around). The studies haven’t seen data that supports that it is any better than the normal dosage for tests done on recurrent tumors.

combining chemos – we could do this, but so far there isn’t a lot of good data with the agents they typically combine with (ccnu, acutane, etc) that warrant this choice as an initial treatment

avastin (now FDA approved!) can be more effective than temodar alone; however studies show that it works better when clear VEGF (vasculin growth factor) is present in the tumor area which can be noticed by evidence of swelling/adema. At recurrence you could go to avastin, but they believe that it is better to save til later on. Better to see if you get a response out of temodar. Avastin use can also exclude you from several trials. At this point Mark's tumor area isn't displaying these VEGF characteristics so Avastin isn't yet being suggested as part of plan A.

dendritic cell vaccine - there is no longer any of Mark's original tumor available to create a vaccine, surgery would be the only way to get another piece, but risks are high so it is not yet suggested. We asked about a synthetic version of the vaccine. Apparently there is a group at Baylor that trials one. It has a set number of antigens they combine with dendritic cell. It is often used with radiation but when combined they can’t see if there is a benefit from the vaccine or from the radiation. It is not typically used in recurrent setting. So far there don't seem to be any side effects if this is used. This could be an option Mark may consider.

Novacure headpiece - Electric field therapy to stop GBM cells from dividing
there is a phase 3 trial going on at USC, UCSD where they send an electric field over two grids. In a petrie dish it looks good, tumor cells don’t grow, however it is not yet proven if it goes through the skin/brain and produces the same results? They've had patients at UCLA try it out, but they complain about the burdensome nature of the treatment. You have to wear the device all the time, shave your head for good connection and carry around a 10-15 lb battery a minimum of 20hrs a day. Men seem to tolarate better because the battery is heavy. There don't seem to be any real side effects

Carl Berg/molecule?
Dr. C did look at some documentation on this molecule. At this point, there isn't documentation given didn’t show any evidence of success in glios. Dr. C said that he would talk to the doctors involved with this trial if we want him to.

what's next:
bloodwork to be done 4/8 and 4/15
next MRI 4/27

DOPA Pet scan

3/29/11
Mark was finally able to go in for the DOPA PET scan today. This procedure is supposed to give a really clear picture of what is going on and identify tumor or not.

It is actually an experimental procedure and is not widely performed. They need to create radioactive isotopes to inject and read through the scan. They are very unstable and difficult to make. Because it is so difficult, they only do this once a week for a small number of hours/patients (which is why it was so hard to get us in). Mark is radioactive for the day, so no kissing babies or pregnant women for 24 hrs ;)

There are only two places in the US that have the equipment to do a DOPA PST scan. UCLA actually invented the procedure and has the equipment. Anyone who wants to be trained in its use has to go through UCLA. There's another place in Florida that has the equipment as well.

We'll be talking to Dr. C tomorrow about the results and ask the other questions that we've been loading up.

latest info

Well we at last got a little more information, but it isn't necessarily the best news. Since we were unable to get a PET scan scheduled, we decided to go back in for an MRI to check things out. The new area of concern does seem to be a bit bigger than what we observed 4 weeks ago. We also observed another scan that showed blood flow and it does show an increase in blood traveling to the area in question. Dr C is again pushing for us to get the DOPA PET scan. This scan would help us determine for sure if it is tumor or not, or if it is a "cold" spot to keep watching. Once we see this result, Dr. C is already recommending Mark start back on chemo treatment. We're planning to start back on Temodar (chemo) as soon as the PET scan is done/read which we're hoping is Tuesday, 3/22. The new area to watch is outside the old tumor area somewhat and a bit more toward the center of the brain. The doctor said due to the areas where we're seeing this new change, surgery is most likely not an option because of the sensitive brain functions that could be affected there. Since Mark had alot of radiation 5 years ago, they are not recommending radiation at this time because of the intended damage this could cause. Not necessarily the best news to get...

still waiting to get the new scan

Well, we're still waiting to get the DOPA PET scan. We were scheduled for this past Tuesday, but it got rescheduled to Wednesday. On Wednesday, Mark did the big drive up to UCLA only to find out that the machine was broken! We then got rescheduled for Friday 3/11, but got a call today that the machine was still broken and it could be 2 weeks or more before it was fixed?! Needless to say, this is getting to be too long for us to wait :( We have an email in to Dr C to see if we can get the scan done at another facility or if there is another option? This waiting stuff is for the birds...