all the details from the oncologist

As promised, here's all the details from the meeting we had with the oncologist last Friday....

We met with Dr. Albert Lai @ UCLA on 12/28/05

Had staples removed
Positive factor that Mark wasn't more symptomatic in the amount of untreated time from discovery to surgery. During exam, still had some sequencing trouble and a bit of memory loss, but everything else looked fine.

We reviewed the pre-op and during-op scans. We were able to see the small area that indicated that there were malignant cells. Looks like it once started as a low grade but over time, transformed to high grade in the core. In the during op MRI, we can see that the main tumor was removed. It looks like he got most of it, but we'll know more when we can get our next MRI after swelling goes down etc.


QUESTIONS ABOUT TUMOR
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* Please confirm tumor type and grade: secondary glioblastoma multiforme IV (features: necrosis, blood supply to that area, evidence of dividing cells)
Fortunately tiny area and looks like most of it removed.

* Are all cells IV or do they start off low-grade? They can start out as IV but ours looks like it was low grade before. Can they change to low grade? Usually not.
* Tumor had necrosis, how long does it take to die? Not known. Does it indicate how long its been there? We think large portion may have been there undetected for years, but don’t know for sure. What percent of the extracted tumor was necrosis vs healthy tumor? Hard to say, ???? Is there a significance of the ratio? If large portion low grade, it will hopefully behave more like low grade, but still needs treated as high grade.
* is there anyway to estimate the age of the tumor? Not really
* did the tumor have well developed tentacles, or is it just assumed? Just assumed, because you can’t visibly see them. Can see in MRI scan, but it also can underestimate…you need to treat it as if they are there because statistics show that they can continue to grow/develop. Ours had a defined boundary which is better than one that was more diffused. Age/health also positive.
* do we still have tumor sample in case we need it for clinical trials? yes
* Was the tumor specimen tested for the status of the MGMT gene? (gene that allows tumor to heal itself and may be indication of if temodar will benefit patient) – our lab is working on this, but it is not available yet. It is very early, can’t be done routinely, but may be available in a couple months here.
* how much was removed? Looks like 100% or contrasting and not contrasting areas removed. do we know how much is left? Microscopic amounts left, but can’t measure. There is statistically residue, but we don’t know for sure without an MRI, right?
* reason that glidal wafers weren’t used? Not standard of care at UCLA, has a marginal effect and even that data is a little dubious. If there were a clear cut benefit, we would do it. Makes interpretation of future scans really difficult and give unclear results. UCLA really doesn’t do that.
* was there anything unique about this tumor or surgery? Don’t think so. What about abnormal gyrus in operation report? Just means that there was visual evidence that the tumor was there.
* how serious is my situation? Do I need urgent treatment? Right away. No reason to wait. Don’t stress about holidays, get in asap.
* should we get another lung xray/scan?
* what is my prognosis? prognosis of this type of tumor? Very difficult to say. Has lots of features. percentages? Average glioblastoma – 12-18months, 50% do better than that, 3-5% chance that you can live over 10+ years or more.
* What is Mark’s Karnofsky score? 90-100 (this is good)


QUESTIONS ABOUT CENTER/DOCTOR
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* has tumor board met? Were going to meet today, just to find out nuances of pathology, but treatment is most aggressive thing they’ll do.
* How many patients with brain tumors are treated by the center/surgeon each year? 250-300 glioblastomas
* Has UCLA ever successfully treated a patient with this type of tumor and grade? If yes, how many success stories? 3-5% over 5 years, there are some over 10
* May we speak with the people you have successfully treated? Yes, we need to get it OK’d with them, will call back.
* What kind of treatment options do they offer?
Regional radiation, chemotherapy (temodar) at the same time day 1 of each – chemo is a daily oral medication during radiation then later 5days a month, well tolerated, shouldn’t have many problems because of health/age, can drop your white count/platelets, blood will need checked every week (can get forms and have it done at Hoag), also give you weekend medication antiobiotic that helps (bactrim DS 2 tablets) to prevent pneumosistic bugs will convert from daily dose, will do this up to 2 years if we get good results (clean scans), can get fatigue during end of radiation, temodar can cause nausea will get kytril and may cause severe constipation and will get miralax to help if needed

Next MRI 2 weeks after radiation completed (about 2 months from now)
Will need follow up visit in a month from now with

Gamma knife more risk than benefit on gliomas

* radiation/Chemo
* can radiation only be done once? In general yes. There are some exceptions maybe 10 years out, it reappears, they would give it again.
* radiation can be done same time as chemo or sequentially? Will be done at the same time
* radiation to general area, not whole head? About ¼ of brain, 2-3cm margin outside of cavity and boost to the cavity.
* what is radiation necrosis? Kill the cells and mimic tumor growth, gamma knife increases that risk. It is a possibility..should keep dose at 5940-6000 dose total
* what is considered a safe level or radiation (55-60gy) 33 treatments, 200 C dose (1500 one time would be bad, but stereotatic boost would be reasonable at the end 180/200) every week day for 6 weeks
* what are the side effects of radiation? Fatigue, loss of taste, buzzing in ears, will lose hair in area directly effected.
* is there brain damage? Can cause it. Radiation damage can be focal or diffuse, which sometime seen in long term survivors.
* long term effects? Cognitive slowing, short term memory loss.
* no known long term side effects of chemo
* how do we know what radiation oncologist to use? How long is treatment?
- Peter Chen @ Hoag (make sure they don’t want you to do gamma knife)
* conflicting views on chemotherapy within neuro-oncology community about chemo providing any benefit for IV GBM. What evidence is there that this is a useful treatment? Not much of a controversy anymore, recent article that radtion+temodar is definitely better than radition alone. What kind to use (BCNU (IV sometimes used in recurrent disease, CCNU more tolerated), PCV)Are there drugs that should be taken in conjunction with chemo to increase its effectiveness? Not proven.
* heard that single agent treatments are inferior to combos. what kind of chemo will be used? Will it contain temozolomide (temodar)? Temodar.
* It appears that what may not work for one, may work for another. We believe in a multi agent chemo approach that Duke uses. Also, for instance, if a mixture of chemo is not effective for 2 treatments we would like to try a different combination and so on till the effective one is found since time is so important. We think that if we continue to use the same chemicals, the body resists it whereas it fools the body if different ones are constantly tried. Duke has a rotation of medications, they’re thinking is to prevent resistance but it has problems as well. We start single agent as standard of care then when they aren’t working, we change (MRI will show progress) After standard now working, have to check factors (ie where it came back), some things tried are with CCUs, Avastin+CPT11(like Duma),
* What kind of long-term effectiveness of the recommended treatment? We’ve heard that these standard treatments aren’t that effective, what is their track record? 40% 2 year survival if MGMT positive, if negative then 20% 2 year survival Newland journal
* when will treatment start? asap
* Can I participate in clinical trials at this center? Dr. Linda Liau. We can, but we need to wait for radiation therapy and post-radiation MRI scan before discussing if he is a valid candidate.
* other trials at UCLA:
- always changing, none open for newly diagnosed, but do have some open for recurrent, may have had one open a month or so ago
* will we be associated with Jonsson Cancer Center? What advantages are there with a center? Cheryl – social worker
* after 2 rounds of chemo, will you consider change in composition of chemo? YES, progress told on MRI scans and changes in basic functionality changes.

QUESTIONS ABOUT OTHER THERAPIES
* In view of the rather dismal statistics for conventional therapy, what do you think about aggressive treatments and trials for a otherwise healthy and vital person such as Mark? – Have treatments that are effective in some people, not good to take over aggressive approach at the beginning, because not proven. Should start with standard and watch and take options. Clinical trials are not magic bullets and most of them statistically don’t work, we are using what is backed by solid data, but not perfect. In this setting, it is what we should do.
* Given that UCLA or any other institution may NOT always have the BEST & LATEST. Will the UCLA medical team advise us of any new and promising procedure, product or treatment and would UCLA help us in obtaining it for Mark? Absolutely. Would the same apply if WE find some promising procedure, product or treatment? YES. Our party line is your party line, no ego involved. Will listen and offer the prescription if you
* if we want to go some where else, what is involved? We will support you in anyway that we can.
* what different phase trials are you aware of and/or recommend? (www.virtualtrials.com)
* kill cells vs prevent growth?
* are there any other systemic treatments that are less toxic than chemo? Unlike other cancers because it is not localized, it stays in the brain, but already somewhat systemic. Local treatments not enough we need to control tentacles. Other localized treatments tried (catheters – another operation, hospital stay, we have tried it, data not all out, only done in recurring, not upfront, 96hour infusion – still don’t know if it works)
* when involved in a trial, and they offer a vs b, how do you guarantee that you’ll get the option that you desire? We don’t do placebo, but may do standard of care. Only issue in phase 3 trials, most of our trials phase I (dose amount) and phase II (efficacy element trying to figure out based on phase I results)
* Is the center involved in current research activities? yes
* do you know about trials other place? Would you recommend them if you did? Yes, a lot of them are similar. Part of nationwide consortium, have multi center


FOLLOWUP
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* Customer Service!!! Moving forward, who will be our points of contact within the UCLA medical facility? When may we call them? Go into detail where you have been frustrated with the system to date (surgery moved 4 times, no recall from paging center)!!! Who will be our ADVOCATE within the facility? Call doctor directly Cheryl-social worker
* Will we have full access to medical records to analytically compare weekly results? Yes, must ask
* how often should we get MRIs? PET Scans? Every 2 months, some situations require PET scans, (determine radiation necroisss, active growing tumor)
* After treatment begins, how often will we be meeting to review progress? See in 1 month, will visit after every MRI scan
* how often should we check dilantin levels? 12/21 – dilantin 20, check monthly, can get off it, but don’t stop now
*Mental health. What resources does UCLA have available for patients/families going through treatment? support groups and social worker contact
* how do we get the films from the mris at the surgery? Radiation film library
* will we be meeting with Dr. Claughsey in future visits? yes
* I want a written transcript of this visit. Yes


Ways to die: sever seizure, pressure on brain stem, coma, stop swallowing, decision made.