Thursday, November 5, 2015

Updated MRI Results

I'm in my happy place, Green Lake. I mean, don't get me wrong - Edmonds is my home. We've grown roots and continue to be nurtured there, but Green Lake has held my hand throughout the majority of our cancer journey. I always find myself at Peet's Coffee & Tea shop at Green Lake sipping on a matcha latte (unsweetened, almond milk - please don't forget the extra scoop of matcha) when I'm dealing with MRI madness. It's my treat on MRI days. It's where I go to celebrate reports, or stress over the ambiguous findings. 

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.


  1. YES YES YES That's what this has got to be!! I'm pretty shocked by the story though...another person may not have gone digging into the description of what EXACTLY they think they saw...then the DC may not have even come up considering that having the records - one would assume they were fully aware of the treatment. With someone less aggressive - it could have well ended in radiation without need...its scary and should be a lesson for all.
    I'm sorry you're going through this nerve wrecking situation but this is so much more positive and sounds so much more "right" somehow.

    1. I know, I agree. If I wouldn't have questioned, if I was a different person, I might have started radiation which may have been unnecessary. We will have to wait and see what the independent review finds. Perhaps they will find that it is a recurrence, but still, it isn't much, and that gives me a lot of hope. I think this sounds more "right" too.

    2. It'll all be great! Keeping fingers crossed! If they're considering another type of scan...maybe schedule in a month or so & then you'd know if its vaccine related. Better than waiting 6 months. Considering that at UCLA they didn't actually see nodular growth as it turns out, my guess would be that the independent review findings would be pretty ambiguous too.

    3. I considered doing the FDG-PET but it's full of radiation (unlike a MRI). I limit all exposure to my brain, and I'm not willing to subject my body to radiation on uncertain findings. I would rather take my chances, continue my treatments and rescan in six months like my German doctors recommended. Of course, if the private third party facility concurs with UCLA that they believe I am dealing with a recurrence, then I will move up the MRI to three months. There's always a cost-benefit analysis, and we know radiation to the head causes brain tumors. I can't risk any more exposure. And I totally agree with you, I imagine that the third party won't find conclusive results either. At least I hope they don't find conclusive evidence for recurrence. :)

  2. Jess - I am so proud of you! I think you should be Chief Of Medicine at a world class cancer treatment center and also teach classes to medical students on how to stay on top of things, all the approaches one can use, the check systems that need to be in place, the necessity of communication collaboration and thoroughness, the cutting edge treatments that are available. There are so many followers in this world, but you are one stand out leader. You teach us all so much about self empowerment, questioning authority, finding our own answers, seeking truth, keeping faith and to take charge of our own lives in so many ways. So glad you are indulging in a special treat in your happy place, you so deserve it, carry on! love, C

    1. You're crazy C! Thank you. You're so kind! I just want to remind people that a critical mind is invaluable. That we have the capability of taking control of our lives, even when it's really scary. The reality is that fear grows in the darkness, and information brings opportunity. There are no stupid questions, and sometimes you'll be surprised by where the answers take you. Thank you for supporting us on this journey!

  3. This is such a great post! I love all the info you put in it, and it is so beneficial to hear how your conversation went, and what types of questions you asked! Thank you for taking the time to type it out for us to read! So glad you are in a good space! And quick questions, out of curiosity, about restricted caloric intake diets...What caloric intake qualities qualify for a restricted diet? And do restricted diets only help slow brain tumors or also any other types of tumors/cancer? How do you make sure to keep your blood sugar in a safe range during those times of extreme restriction? What is a safe range for blood glucose anyway? How long do you do those diets (is it strictly Keto or are there other restricted calorie diets you have tried? Do you have to stop exercising when on a Keto diet? Do you feel tired all the time when on one? Thanks in advance! YOU GOT THIS!!

    1. Oh boy, that's a lot of questions. I'll do my best.

      1. The research that I've read to qualify for restricted is a 30% cut from daily expenditure (you can not add exercise).
      2. Restricting caloric intake is beneficial to all cancers.
      3. You can keep your blood glucose in a healthy range by eating small meals throughout the day.
      4. A safe range of blood glucose is somewhere from 60/70-90's.
      5. The length of the diet is up to the person doing it.
      6. I've restricted all my various diets from time to time.
      7. People do regular keto to enhance their workouts. The restricted keto is completely different. Thomas Seyfried, PhD recommends only walking and light activities during restricted keto.
      8. The level of energy varies by person. Some love it and others complain of lower energy.

      Just remember that I'm not an expert, or a nutritionist, or a doctor. If you're going to attempt a calorically restricted diet, you might want to meet with a professional. There's a lot of information online about why and how to do caloric restriction with cancer. Some people do diet cycling where you cut calories every other day, or you restrict calories during the week but eat a normal amount on weekends. There are lots of options to try. Good luck, and thank you for your support!

  4. this post made me very happy! as a radiographer we have to deal with different reports on the same image regularly (most scans are double reported). i'm glad there may be sensible reason behind the small changes. i also had small changes in my last scan. keep it jess. you're a pioneer!

    1. That's right! You're the resident expert! I'm sorry about your small changes. Is it helpful that you can review your own results, or do you find yourself more critical?

    2. its not particularly helpful, i don't trust much because interpreting small changes is just guess work no matter how experienced the radiologists are. as you know reading MRI brains is not an exact science. i'd trust a PET scan, but we dont have much access to them here. there aren't many scanners. and in a cost-reward analysis they aren't an efficient use of money or time compared to other cancers. i didnt realise your dendtric cell therapy could cause flair changes. very interesting. whats your diet at the moment? since starting work, mine has gone down the drain, harder to calorie restrict when your on feet working all day, everytime i get a bit lightheaded or head-achey i eat some sugary food when really i should just try and ride it out.

    3. That's interesting, Ben, that you don't have much access to the PET scans. That sucks. My diet has been a joke lately. Really really horrible. I'm just now putting the clamp down on my bad behavior. But once I let the flood gates open I'm having a very hard time saying no to things. My goal right now is to do low glycemic vegetables, lean proteins, lots of fish oil, some nuts and seeds, some fruits (but try to limit amounts), little bits of full fat dairy. At our house all we eat is organic food and grass-fed proteins. Ultimately, I'm working with those guidelines and tracking calories to effectively restrict. I'm trying to do 1200 calories per day M-F, along with both gentle exercise along with some short interval cardio. The weekends I ease up a little, but I still don't go crazy. Although I might go crazy for one meal. :) I can understand the lightheaded issue. When you munch on a little sugary item, be easy on yourself, for a good portion of this whole issue, if you're restricting that day it doesn't seem to be that big of an issue. We can't be perfect, and if we just do little bits then I don't think it's that big of a deal.

  5. I love you fighting for you! SO inspiring!


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