Q&A

My lovely wife Nicole took the time to post a "Q&A" on Facebook to answer some questions we frequently get asked by people. I think the list is informative, and that there may be people who are curious about my condition but feel as though it would not be appropriate to ask such questions of me. Please note that I have no problems answering anyone's questions at any time. If anything I'm too bold and upfront about things and have found that I will say things in such a cold "detached" manner that I find I shock people in terms of my to the point honesty about my condition. Below is the document Nicole came up with...

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Since Tom's diagnosis, we've had a lot of people ask us a lot of questions about his condition. Not just how he is currently doing, but also about some of the specifics of his disease. I thought it might then be a good idea to create this document and share some common questions/answers in the hopes of helping people understand what is going on with Tom and how things are expected to progress. This is not meant to be a pessimistic document, just one with facts. So I will do my best to leave out my own emotional perspective. If anyone has any other questions as well, please feel free to post them on here, or send us a message. We'd be more than happy to answer any questions you have :)

1) If Tom had surgery last year, how does he still have a brain tumor?

Tom's tumor was approximately 5 x 5 x 6 cm when he was first brought to the hospital. After a 4+ hour surgery, the neurosurgeons were able to remove a large portion, however the were not able to remove the whole tumor. There is an issue sometimes differentiating between normal brain tissue and tumor tissue because they become intertwined. They would not have been able to remove more without doing more damage to his normal brain tissue, and so Tom was left with a piece of tumor about the size of a quarter.

2) If they could have removed the whole tumor, would Tom have been cured?

No. This type of brain tumor invades nearby tissue and extends its invisible tentacles into the tissue surrounding the tumor. Even if the visible tumor was entirely removed, it would have been impossible for them to remove all of the cancerous cells. We aren’t just talking about a few cells either; we’re talking about millions of undetectable cells.


3) If Tom’s tumor was so big, why did it take so long to bring him to the hospital?

Because of the location of Tom’s tumor (in the right frontal lobe) the tumor was able to grow quite a bit before it caused any noticeable side effects. If his tumor was located in a different area, he most likely would have had a rather obvious neurological impairment that would have been cause for concern.


4) If you had gone to the hospital sooner, would Tom’s prognosis have been better?

Unlikely. According to the doctors, with this type of cancer it does not matter how large the tumor is when it is diagnosed. Regardless of what size it is or when it is caught, it will still grow back. I say “unlikely” though, because it is technically possible Tom had a lower grade tumor that progressed into the grade IV GBM that he was diagnosed with. If that was the case, it would have theoretically been possible to slow down the progression of the lower grade tumor before it turned into a GBM thus giving Tom a better prognosis. However, the neurosurgeon was under the impression there was no way to know how long he’s had the tumor and the general view is that a lot of these tumors just “start off bad” as he put it. Furthermore, Tom only started to experience symptoms a few weeks before we brought him to the hospital, and those symptoms only seemed suspicious upon reflection. They were not severe enough to warrant a huge amount of concern until the end. Even his family doctor, and the doctor’s in emergency were unconvinced there was anything seriously wrong. At the hospital, they only did a CT to rule out meningitis – not because they suspected a brain tumor.

5) Tom’s last MRI’s showed his tumor is shrinking. I thought that wasn’t supposed to happen?

Tom’s MRI results are not entirely typical, and he is lucky in that regard. However, others have had their tumors shrink or stabilize before coming back with a vengeance. These results are good in the sense that we are being given more time with Tom, however inevitably his tumor will come back.

6) If his tumor is responding to chemotherapy, why would it grow back?

There are a number of reasons for this.

(a) Most patients must stop chemotherapy treatment after 2 years (if they are lucky enough to go 2 years with it still working). This is because prolonged use of this chemotherapy drug Temodal can cause severe side effects including the development of leukemia. Once the Temodal is stopped, the tumor will be given the opportunity to grow because it will not be under direct attack anymore.

(b) Not all of the cancerous cells that make up Tom’s tumor are created equal. Some appear to be susceptible to the chemo, however some cells will not be and some may even be very similar to stem cells, and therefore quite indestructible. Therefore not all the cells can be erradicated with the same treatment. The body also builds up a resistance to the chemotherapy drug and eventually it stops being as effective.

(c) Once all the chemo sensitive cells die off, there will only be chemo resistant cells left. This means that the cells that replicate will be purely resistant to chemo. This is why when the tumor recurs, it comes back usually much worse than it was originally.

6) But if Tom’s MRI’s show that the tumor is shrinking, he is now in remission right?

Unfortunately no. This type of tumor never really goes into remission. It is not curable. It can stabilize for a period of time (which is the purpose of treatment) however the chances of the tumor coming back are more than 99.9999%. This type of tumor can double in size every week, spread to other (and inoperable) areas of the brain and damage/replace healthy brain tissue as it goes.

7) If it comes back, can’t they just do another surgery?

Every time the neurosurgeons do surgery, there are huge risks involved. Not only would Tom be at risk for injury to the brain leading to severe deficits, but he would also be vulnerable to blood clots, infection, death and even personality changes. Furthermore, if the tumor comes back it could recur in a different area or evolve into multiple tumors that can not be safely removed through surgery.

8) What can be done if the chemotherapy stops working?

Unfortunately there are very few viable treatments for this type of cancer once the “standard treatment” fails. Usually they will try a couple of "salvage therapies" but these usually fail eventually as well. Once they run out of medication to stop the tumor growth, there is little they can do.

9) Why is this tumor so hard to treat?

The medical community has described this type of tumor as a “cancer nightmare”. This is because there are so many things that go wrong genetically, and there are too many pathways to try and correct. These tumors are incredibly aggressive and there is no “one size fits all” treatment for this type of tumor. It is also difficult to come up with a treatment that is capable of crossing the blood brain barrier and at least some of the cells are resistant to available treatments. Furthermore, while devastating, brain cancer is relatively rare and therefore it does not receive as much attention as other cancers.

10) Why is Tom not participating in Clinical trials?

That is a slightly complicated question, as there are a lot of reasons why we would or would not want to participate in a clinical trial.

(a) Clinical trials have a certain set of criteria that you need to meet in order to be eligible. When Tom was first diagnosed, we did not end up participating in one because the tumor tissue had to be sent to Europe for testing, and Tom would have had to delay chemo and radiation several weeks to wait for the results. This is not something they recommend, as without treatment this tumor grows incredibly fast. We therefore opted to start the standard treatment, which ended up being a good idea because they didn’t find what they were looking for with the testing. He was also not eligible for a different trial due to the blood clot in his lung.

(b) Clinical trials are tricky business and there are several phases to a clinical trial. It can be dangerous to participate in an early trial that is “experimenting” with the dosage or that has not been proven to be safe. It is also not always plausible to participate in a later phase as you might end up in a placebo group without any backup treatment.

(c) You need to be at a certain juncture when the clinical trial actually starts to participate. You can’t enter part way through; you have to “sign up” while they are recruiting. Tom would also not be eligible for a clinical trial now unless it is for patient’s who have had their tumors recur. This is because he has already had surgery + radiation + chemo and trials for newly diagnosed patients usually require that you not have previous treatment.

(c) We are limited by the number of trials Winnipeg is participating in.

11) If Winnipeg does not have enough trials, why not go to the states for a trial/treatment?

In order to participate in a clinical trial that is taking place at a different institute, we would need to completely transfer to that institute and become their patient. This would mean having to move to a different country and leaving behind our friends, family and therefore our support systems. We would also have to pay for all scans, tests, surgeries, treatments, prescriptions and appointments out of pocket on top of living expenses. As brain surgery in the states is over $100,000 and his medications alone amount to over $60,000 a year….when you add it up, it is simply not an option.

12) Tom can still beat this thing though right? Since he is young and doing so well?

I wish that the answer to this question was yes, and I still hold out hope that one day it might be. As it stands right now unfortunately, the chances of him making it to 5 years past his diagnosis are in the 1-3% range. Even if he was lucky enough to be one of these few “survivors”, the tumor will still come back. Some people have gone 6 years or 9 years with clear scans, and then all of a sudden it’s back and they’re gone. There is no cure for this type of cancer, and no treatment seems to even be getting close. The best hope is currently a vaccine that is specifically created for each patient based on their own DNA and the make up of their tumor….but even this amazing medical technology (which is still in trials) has only raised the average prognosis by 2 years. His age does give him a better shot at living longer than the doctor’s predict but this is an ongoing battle, and always will be. Even if we get to 5 years or 10 years, it isn’t over.

13) What is he doing in addition to the "standard treatment"?

Tom is taking Accutane, which is actually used to treat acne but has showed some benefit in fighting brain tumors. It is supposedly works by trying to convince cancer cells to be less cancerous (although I assume it's exact mechanism of action is a bit more complicated than that). However, almost all brain tumor patients under Tom's oncologist have been taken off this medication because patient trials showed it was less effective in real life than it was shown to be in the lab. Tom was given the option to drop it, but we decided he should still take it anyway. Largely because the medication does not pose any harm, and if there is even a slight chance it could provide him with some benefit, then it is worth the dry skin!

Tom is also taking Valproic Acid to control his seizures, which showed a modest benefit in the overall survival of GBM patient's in recent clinical trials.

He is also avoiding refined sugar, processed foods, artificial sweeteners and eating more natural and organic foods. He drinks green tea as often as possible (although he hates the stuff) because it was shown in some trials to sensitize brain tumour cells to Temodal. Also, because cholesterol is a huge player in the creation of cells, he consumes a specific amount of plant sterols per day to lower his blood cholesterol level.

PLUS he is staying (ridiculously) positive and we are trying to live as normal as possible, for as long as possible. A positive attitude will not change his genetic makeup, but it does make a difference

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Thanks for writing this up my love! I shall try and post an update again soon. I have blood-work tomorrow, which is a standard appointment and all should go well. Cheers all!