I'm here in the city for a last minute doctor's appointment, and have been managing the details of our "recurrence" all day (emails, phone calls between doctors and insurance). Here's the information from UCLA.
UCLA: They reviewed your scans last week [at the tumor board] and feel like there are mild subtle changes so it is suggested that radiation would be a good thing to start at this point. They also mentioned a clinical trial involving an IDH1inhibitor. Perhaps you should meet with them [radiation oncologist & neuro oncologist] to discuss your options.
Me: When the tumor board meets, and there are recommendations given, is there a report that I can access and review? I assume there is some sort of documentation of the process.
UCLA: We don't really have a written report per say that I can provide you.
Me: I'm curious because, when you say there has been progression, I would like to see the measurements, and assessments of the increased disease. As you know I send the copy of the UW's MRI scan to UCLA, along with the radiology report from UW, and their report didn't reflect your findings. It's confusing to me that you would find changes that they did not find.
UCLA: It's been subtle changes over time, of the T2 FLAIR signal. I don't know if UW compared all of your scans.
Me: Yes, the radiology report from UW did compare back the scans for the past few years.
UCLA: Well, they reviewed it at our tumor board and they found subtle mild changes over time. One radiologist might see something different or use different techniques. Also, it was very mild changes. Once again, it might be worth meeting with the neuro and radiation oncologists to discuss your options. Just to see what your options are at this point.
Me: So, is it more of a FLAIR issue as opposed to a nodular issue?
UCLA: Yes, it's mostly FLAIR. There was no enhancing nodular lesions.
Me: So, going back to January 2013, I've been doing an immuno therapy, a dendritic cell therapy, and I had recently received a shot about three weeks before the MRI. So I'm wondering if there's any possibility that the treatment could be effecting the FLAIR. If you're concerned about the FLAIR, which I assume you mean brightness - as opposed to size of the area - perhaps it could be correlated with treatment effect?
UCLA: So you started the treatment in January 2013? And how long have you been doing the vaccine, and how often?
Me: Ten shots the first year, then every other month in the second year, then every third month this year.
UCLA: I mean, yes, that could be playing a part in it too. What I can do is confirm with Dr L that you were doing the dendritic cell vaccine, because that will play a part in how they [tumor board] read it. I'm not sure if they had that listed [as one of your treatments]. I had the Newcastle Disease Virus listed.
Me: Yes! That's the one. Great.
UCLA: Oh, okay. Well, I didn't realize that was a dendritic cell vaccine. And perhaps that could account for some of how they were reading it. I mean it was very subtle, very mild, but as you know as soon as they see any changes they prefer you to start chemo and radiation and do some standard treatments.
Me: Yep, that makes sense. So if it's an increase in FLAIR is that something that a DOPA-PET scan would pick up?
UCLA: Um, yes, you could possibly have another DOPA, the only thing is that the DOPA is no longer being manufactured. It's not available to anyone at this point, for whatever reason.
Me: How long has that been?
UCLA: Recently. Perhaps a month. There's other types of PET scans that you can do, though. Let me reconfirm with Dr L to see what she might recommend. I don't think we knew that you were on a dendritic cell vaccine. It could definitely play a part in what they're thinking. I don't really know because I was not at the tumor board meeting.
Me: Well, if you don't mind talking with Dr L to see what she thinks about the dendritic cell vaccine and imaging - along with any possible scans that could be beneficial to differentiate between inflammation/scar tissue that would be great. These scans are very tricky.
UCLA: Yes, well there are differences in reading techniques. You send it here and our radiologists may pick up on something. And we didn't know you were doing a dendritic cell vaccine because that could definitely cause an increase in FLAIR.
Me: If it's an increase in FLAIR that is definitely something to be concerned about. I did, however, have two shots of the pure NDV and then a followup with the vaccine about three weeks prior to the MRI. I had been told to give it at least two weeks between, but who knows, maybe I had a larger effect.
UCLA: Well she definitely said it was very subtle, and very mild. I'll just reconfirm that there isn't another scan or something that she would like.
In the meantime, I reached out to the German clinic explaining the two differing views and mentioned that we will have a third independent opinion in a few weeks. Today, I received a response that they think a MRI in six months is sufficient. Although they are curious to hear what the third reading would find. I imagine that if the third, independent review, finds a recurrence is likely, we will adjust and increase my immuno treatments. (Among other things of course.)
I also heard back from UCLA and they definitely believe that the dendritic cell therapy could be to blame regarding the FLAIR. They said that they would have read the MRI differently had they known that I was getting DC therapy. I thought that was odd since I have always been open and honest with Dr L. They have all my notes of everything I'm doing and have done. The truth is that they didn't really review my file before the tumor board.
The recommendation is to conduct a FDG-PET or another MRI in three months. So now I wonder, would they have ever recommended radiation or a clinical trial had they read my patient notes, or would they have considered me "stable, no change"? Of course, we will never know, but I feel much better about this possible "recurrence".
So the next step? We wait for the review from the independent radiologist. They're not affiliated with any treatment center which makes me feel more confident about their opinions. They don't recommend treatments, only analyze images. They don't take insurance, but at times like this their expertise is invaluable. It will probably be a few weeks before we have more information. Since the German doctors seem optimistically cautious, I feel pretty good myself. They did not recommend moving up my treatment schedule, nor did they recommend adjusting the formula. Since we're just waiting for more information, now I have to figure out how I want to absorb this situation. I feel like it's an opportunity to hit the ground running with my health. A reboot in diet, and exercise, and attitude.
And it is not escaping me how quickly they were willing to throw me into radiation and a clinical trial. There is a very high probability that my FLAIR signal is just treatment response cleaning out cancer cells. This is why it is so incredibly important to ask as many questions as possible. To hit every target you can. To trust your gut and verify, then verify, then get another INDEPENDENT opinion. I believe that if I would have sent for a third opinion at a treating hospital, they would very likely find a reason to corroborate UCLA's results. There is almost a backroom handshake thing that goes on between cancer centers because they don't want to get sued. They don't want to go against the grain. They don't want to disprove another center's recommendations of treatment because they could get burned by a true positive later. Then the patients get pissed, sometimes so pissed that they engage in litigation.
You must be in charge of your own care. You must treat results with a heavy dose of skepticism. You must always try to find objective sources to review your files (a place that will not benefit by the outcome of your results).
UCLA may be correct in their findings. Perhaps the tumor is growing slightly, subtly, over time, but if it's that hard to discern then we should be able to snuff this puppy out! I just need to refocus and quit screwing around.
The hardest part is diet. I've read and researched so many diets, so many success and horror stories of things working or not working and there are no absolutes. Certain diets work for some people, and other times they don't. I have to keep going back to the basics. The basics are that if you calorically restrict, it doesn't really matter what you eat. At least according to Seyfried's research. I wish I wasn't such a foodie. And by foodie I mean a big portion eater.
I don't know if you can see the above chart very well, but from left to right the columns are: Unrestricted (UR) Standard American Diet (SD), Restricted (R) Standard American Diet (SD), Unrestricted (UR) Ketogenic Diet (KD), Restricted (R) Ketogenic Diet (KD). As you can clearly see, the Restricted (R) Standard American Diet (SD) actually achieves lower tumor burden than the Restricted (R) Ketogenic Diet (KD). So I'm not even convinced that cancer diets are as much about macronutrients (carbs, sugar, protein), as it is about quantity of food (total calories). Bad news for me the big burrito eating queen. Of course, if you restrict your diet calorically with the Standard American Diet and get those results, I wonder what the tumor burden would be if you restricted vegetarian, or vegan, or paleo, or [insert diet]. I would love to see a comparison of all the various diets under the same parameters. But at least we have this chart to assess. It's a start.