UCLA followup during radiation/chemo

We had a followup appointment with UCLA to discuss questions/concerns while mid-treatment.
Here's what we found out:

We met with Dr. Leia Nghiemphu and Dr. Cloughsey

Blood pressure 115/59 temp 97 weight 171lbs height 5’9” (178.5cm)
Neurological exam, all was fine.

How are you doing with radiation/chemo? Doing fine, but have some constipation, not feeling nauseous. Use Miralax, whole grain, lots of fluid, prune juice.
Blood tests being done every week? Yes. Dilantin has been in range, no seizures. Expected date that radiation stops is around 2/28, we’ll need to come back 2 weeks after radiation to get MRI (around 3/14). If you get them at UCLA, they can be read that day and are in the system; however, it is more convenient to get them at Hoag, but you have to make another appointment to have it read at UCLA.

We will probably be switching to Kepra – side fx can make you sleepy, usually get used to in about a week, can also make you irritable (but this is unpredictable on who it happens to), at beginning you are taking both temodar and kepra so you can be eased into it. You won’t need to get blood levels for Kepra. Will take 2 tablets twice a day is the goal. For first 3days, just take 1 2x a day (500mg each). Have a regimen that tapers us off dilantin

Has been complaining of vision problems (reading fine print). Radiation can dry out your eyes and may be affecting your vision. Wait until 2-4 weeks after radiation to assess. 43 is probably a good time to check your vision.
Has a little bit of spacial disorientation. Probably still having residual effects from surgery and anesthesia that could be causing this; also, radiation/chemo can effect this as well.

Can you look at our pre-radiation MRI and compare to operation report that said there was a thin irregular rim of enhancement? This is normal after surgery, could be there forever, may be scar tissues. We worry when things are thickened or have nodules.

Any time frame yet on when we'll hear results about the EGFRvIII and PTEN protein tests? These are done on research time, so there is no set date when this will be done. The results can help determine what drugs will be effective on a recurrent tumor. Molecular marker treatments that can identify the signaling pathways. Our reports show that this is probably being done now. They have been stained, Dr. Paul Mishel is doing this with data coming out of UCLA, he interprets these results and is also a researcher. Waiting for interpretation.

Some patients do well and tumor doesn’t come back for 2-5 years. Can come back within 6 months (quite rare and usually older patients) and would indicate that temodar not effective.

In the pathology report, it talked about 2-3 mitoses? What is the significance of the number? These are the dividing cells and there are a lot of them in GBMs.

Still a bit congested and wondering about chest results…can you explain what the SUV is on the PET scan we had a few months ago? It is clear and showed no activity.


Are there trials for upfront GBMs? Why did we not know of these trials? R115777 radiation/temodar study that had no openings at the time we needed to go through standard treatment. Verinostat (saha) is a current trial about to open on that is done in combination with temodar which is a phase 1 study, so we don’t know if it leads to strong drop in blood count or what the other side fx are that can be associated with it. Still trying to figure out what dose (phase 1). Having a meeting tomorrow to discuss this new trial. Being run at 9 different centers and each opening can only take qualified candidates. Gets evaluated every month. Would we be eliminated if we do dendritic cell therapy? Would have to do after dendritic cell therapy.

What about gamma knife leading edge? Can it be done after radiation? Don’t do gamma knife. It is like setting fire on your tumor, you have to do it very carefully or you can spread the fire to areas that spill over where you don’t want it. It can spill over into your speech center. Would be risky. Series of phase 2 data accumulated showed some positive results, but phase 3 (randomized) results showed that it didn’t make a difference

What about an MRI spec? Only needed when you have a tumor present and has to be at least 1cm in size. Kind of a messy test and gets a lot of false results. Can be mixed up with normal brain to get half a signal.

When will we be switching to Kepra? Can do it now.

How long will we stay on bactrim? Only through radiation and daily temodar. Once on monthly temodar, take bactrim only if counts drop too far.

Any precautions about getting a massage while still going through radiation/chemotherapy? Don’t do any brain massage ;)

What is considered a WBC level that we should be concerned about? We look at absolute nutrophil count to determine if chemo needs halted.

What are antineoplastons? Treatment being done in Texas by Burzynski, which involves a mixture of vitamins. We don’t know if it works or not. Have had 10 patients here that have done it, maybe it worked for 1;however, data really hasn’t been published about it, so its tough to know if it works. Not approved by FDA, have to pay cash for it. Have to go there to get IV.

What other trials are available to us (besides dendritic cell therapy) ? Right now, none. Most trials are mainly for recurrent tumors. Most upfront trials are during radiation, which we’re half way through now.

Are 3 year survivors all that you have? No we have more (he gave me names, but I don’t want to publish them on the website)

Duke likes to alternate chemo therapies. Different philosophy here. They switch it to avoid failure; however, we have no way of predicting which chemo will work for you. If chemo #1 worked, then you go on chemo #2 and it failed, it doesn’t really show which one is the one that caused failure? In theory it is good if you can know which chemo therapies are going to work for you and then you can alternate. It can decrease your options later on if the tumor comes back.

What is the difference between gene therapy and immunotherapy? Gene therapy changes your DNA (none currently available for brain cancer). Immunotherapy you try to boost immune system to attack your tumor (dendritic cell).

Have you heard about the TK gene? Thymodine. Kind of like a vaccine trial, but would need injected into your tumor, meaning another surgery. If tumor comes back and there are surgical options, this can be discussed.

Since we’re now having radiation, if the tumor came back, would a form of brachtherapy be relevant? No, it gives a lot of radiation to rim of tumor and that is near very eloquent areas and it could spill over. Would be risky in our situation and could effect speech.

Can I get more info about Sulfasalazine as a way to treat GBMs? Being used, but we haven’t seen good results yet. Lots of side fx with it. We use it later on if other things are not working. May be considered if tumor comes back. The treatment originated from studies at University of Alabama Birmingham. You can find more info if you internet search for H. Sontheimer. I read that UCLA does do this, it is part of your planned regimen?
Not really Can you give me more info about what it does/risks/side fx? Headache, stomach upset, diarrhea, rash, can rarely have some severe side effects. We have used it in several patients. We would only use it after we have tried a lot of the other options.

What does UCSF propose? Similar to how they do things here at UCLA. We have a lot of the same trials. UCLA, UCSF and Duke also have several trials together as well. Sometimes they have trials that we don’t but usually the same. May differ in what clinical trials are available, but not necessarily better, but can be something to try.

Questions about Liau’s trial?
Should make appointment when we know when radiation is over. (I just set this up)
She gives you three shots of vaccine then back on temodar, will need to talk to her about what the procedure is now. She now has another protocol where she administers the vaccine along with temodar.
Is it still needed if there is no known tumor still there? Always assume that the tumor is there, and it would be useful.
Does it go along with temodar? Usually she has you take a break, but she has been changing her protocol.
How long is it administered? Once a month shots for 3 times
Takes frozen tumor from surgery, grinds it up, looks for markers, develops antibodies then injects it back in.
Does the WBC have any effect on when he gets the vaccine? White cells are what makes the antibodies, she wants your immune system to be good in order to help these antibodies do their job. Similar vaccine trials being done at Cedars and UCSF (just started).
Dr. Liau’s treatment does well on fairly young upfront tumor patients (like Mark).
If we stay on temodar for 2 years and there is no recurrence, what then? Stop, then watch with MRIs.

Would you advise us of trials that are not UCLA-related, or do we have to search these out on our own? We share a lot of trials and we’ll tell you.

Can I surf? You probably can surf, but make sure you’re healed well and wait till after radiation.

We heard that a prolonged use of temodar has risk of the patient developing leukemia? Is this true? Yes, all chemo therapies have this risk. Temodar has the least risk, other chemos you can sometimes only stay on for 6months to a year, before the risk is higher. Temodar you can stay on for up to 2 years. Often if the agent did cause leukemia, it is generally not seen for 10 or so years. More risk of current tumor that possible leukemia.

I read that if the tumor comes back you cannot use temodar anymore? Is this true? We usually do not go back to more temodar in this situation. If so, what does your team propose to do next? Clinical trial or CCNU
There are numerous options that depend on each patients situation (repeat surgery, other agents (CCNU, carboplatin, Avastin/CPT-11, etoposide, clinical trials available at that time)

We’re concerned that we didn’t know about options for surgical treatments (i.e. gliadel wafers, live tumor tests, etc.) If we have to go to surgery again, are these things that you would make us aware of, or do we need to do the research ourselves? Gliadel wafers have been out since 97 and not that many people use them. Only 10% of academic centers use them. EDR has a problem as well…it has never been proven to predict what sensitivity the tumor has toward the different drugs, because the tumor for the tests is grown in different environment. Good in other tumors, but not necessarily GBM.

If we had to go into surgery right now, what would be the best method? Good resection is best for now along with trials and/or chemo.

If we mix up the drugs and the tumor comes back, can none of those drugs be retried? Right, it is hard to tell which is the drug that failed you.

We're concerned about the cause possibly being something in our environment.
Since we have a young child, we'd like to see if there is any link to our area.
If we were going to test our soil/water for possible contaminants that could possibly lead to cancer, do you know what chemicals we might test for? Don’t know any chemicals or toxins that cause GBM, so don’t know what to test for.

blood brain barrier – in your brain, you have blood vessels that go to the brain. There is a barrier where blood can’t just diffuse into the brain. there are special transport mechanisms. With GBMs, the blood brain barrier is already disrupted. Temodar is known to be able to get into the tumor

We had a pre-radiation MRI done at Hoag last week. Did you receive the
report from this? Do you have any comments about what you see in this MRI in comparison to the one we had post surgery? There is still blood within the cavity, there are changes around the cavity, but impossible to say what these represent. The latest MRI will be a good baseline to compare subsequent MRIs.

Do you have statistics about what percentage of people that GBM resections have to come back and do something again? This happens in the majority of situations
Is there an average amount of time that you see regrowth even after starting radiation/temodar? Are there some people that have regrowth even during standard therapy?

After we are done with our treatments, when will the bigger dose of temodar start?
Will there be a break between last day of readiation/chemo before getting on the 5days/month plan? This will start 2 weeks after last day of radiation Ok, so the last day of radiation is also the last day of the 150mg Temodar and then we stop for 2 weeks before starting the 400mg temodar? yes Will bactrim still be needed in this interim period? Depends on his white count