The current standard of care for newly diagnosed glioblastoma multiforme (GBM) brain tumours is surgical resection followed by radiotherapy (RT) plus concomitant and adjuvant temozolomide chemotherapy (TMZ), commonly referred to as the “Stupp protocol”.
Studies have suggested that possibly half of all patients with malignant gliomas who have undergone chemoradiotherapy may show signs of early disease progression in their first post-treatment MRI scan, and that a significant proportion of these cases may be pseudo-progression. This phenomenon has been attributed to a transient chemoradiotherapy-induced treatment effect referred to in the literature as “pseudo-progression”.
The question of pseudo-progression and how long to administer adjuvant temozolomide is the subject of on-going study within the neuro-oncology community but we believe it is necessary to alert oncologists and patients to the issues involved. We would be very disappointed if any brain tumour patient’s chance of extended survival was compromised by premature withdrawal from adjuvant temozolomide therapy without consideration of all the relevant factors.
As I understand my situation, there are a couple of scenarios. Scenario "A" is that the chemo meds are not working and I'm screwed (sort of). Scenario "B" is that the chemo meds are working and reacting with the tumour causing it to grow larger. If I'm stuck in scenario "A", the best thing to do would be to take me off the chemo meds that aren't working and to try something else. If I'm in scenario "B" the best thing would be to keep me on the current chemo meds as they'll be better for me in the long run. The doctors have no way of knowing which scenario I'm in. What they can do is wait another month, take another MRI, and if the tumour is larger still it is likely just regular progression (that's bad). If after 4 weeks there has been little to no change, then it is more likely to be pseudo-progression (that's good). So the doctors are saying, better to risk leaving you on meds that aren't working for another month (shortening my lifespan if scenario "A" is true) and get a better idea of what is going on in my head than to prematurely take me off those meds and switch me to alternative meds that would likely not be as effective (if scenario "B" is true), thus shortening my lifespan even more.
It's all a bit much to take in for me. I'd have preferred simple good news than the above, though there truly is no "good news". The best I can receive is "less crappy news" or "relatively better than some of the other possibilities news". I might leave the office with a sigh of relief, but shall never exit Cancercare with a fist pump.
Forever the optimist I cannot give up on that now. I must get through the next painful (emotionally) 4 weeks only to wait a further few days for results that could either be a great relief, or greatly devastating. I still am experiencing no physical pain or problems of any sort. I have no headaches, no nausea, and no extreme exhaustion. I am still able to enjoy my days with Nicole as we experience our newlywed lives together.
I have promised Nicole I will be there to love her and support her forever, and that is still what I plan to do. The hardest thing I face is the realization I might not be able to keep that promise. Nicole has been right to point out to me that I sometimes give too rosy a picture of what we are both going through, leaving others to assume that perhaps it is not so bad (or at least as bad as it is). In truth this is incredibly difficult, and incredibly painful (again emotionally) for both Nicole and I. After we received the last results we did, I can speak for myself in saying it was all I could do from completely melting down before leaving the hospital and arriving back at home. When I got there I did so, and Nicole was there to cry with me for several hours before I fell asleep from wearing myself out. Today again (2 days after receiving the news) I still am experiencing periods where I break down for a while, with Nicole there to try to help me through it. She doesn't have it any easier than I do, and as I've said before I truly believe this is harder on her than it is on me. I am still loving life and doing everything I can to get the most out of it, but it seems that even those best of days have a dark cloud hanging over them. I have lately been experiencing emotions in line with what Nicole has been feeling since the very start. Emotions have ranged from extreme anger at how unfair this situation is, to feelings of helplessness and general sadness. I try to hold on to the optimism as much and as strongly as I can, but it isn't as easy as I'd like. Life has become a hurdle race, with each day reminding myself that I must simply get to the next one. First of all it was getting to the anniversary of Nicole and I (and the day I would propose to my current wife). Then it was getting to the end of the school year and graduating. Then it became getting to the wedding. Now, I'm focusing on early July when I shall go for my next scan (date TBA), and receiving the subsequent results. I won't let myself start to play the games of "what if" before I get there. What I'm going to do is assume this is a case of pseudo-progression and just get the most joy I can out of each day that I spend with my lovely, kind, and beyond supportive wife. I could not be writing any of this blog if it were not for the freshly named Nicole O'Leary-Sontag who deserves more thanks than I could ever give or express to her.
Rest assured I shall still post completely off-the-wall status updates on Facebook on a regular basis, and will update all of you on how things go. I must admit however that I am much quicker to get on the updates when the news is good. So as I started: "And the results are...?" inconclusive as of now. Me and the tumour are going into overtime which will last 4 weeks (a little longer than Game 2 of the playoffs the other night) and we'll go from there. Thanks to everyone for their support & of course, Cheers!
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Tom
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