Here's a link to an interesting article on "BRAF-V600E Metabolic Rewiring and Reprogramming."
http://www.sciencedirect.com/science/article/pii/S1097276515004384
BRAF-V600E is the mutation present in nearly 100% of the classic form of hairy cell leukemia (and is also common in 50% of melanoma cases).
The metabolic cycle shown in the diagram may imply that a diet which promotes ketogenesis (such as a high protein, low-carb diet), may promote BRAF-V600E/MEK1 binding and tumor cell proliferation.
I'd be interested in understanding how levels of HMGCL compare between patients and whether there is a correlation to treatment success.
Interestingly enough, an HMGCL antibody has been produced in rabbits:
http://www.sigmaaldrich.com/catalog/product/sigma/hpa004727?lang=en®ion=US
I wonder if such an antibody could be used to safely regulate HMGCL levels during treatment and reduce cell proliferation.
A common mistake a lot of people initially diagnosed with HCL (including myself) make is to assume that HCL is like solid tumors and feeds on sugar. They then follow a low carb diet, which in turn causes the body to invoke ketogenesis to metabolize fat and protein. In so doing, they promote cell proliferation instead of starving the HCL.
This is the mistake I made when being treated. I wonder if it is one of the reasons why I did not respond as quickly as others to treatment during chemotherapy and my first round of Rituxan. I stopped the diet before my second treatment of Rituxan and ultimately got a complete remission.
Just remember, "liquid cancers" aren't like solid tumors. Follow a balanced diet, and let the medicine do its job.
http://www.sciencedirect.com/science/article/pii/S1097276515004384
BRAF-V600E is the mutation present in nearly 100% of the classic form of hairy cell leukemia (and is also common in 50% of melanoma cases).
The metabolic cycle shown in the diagram may imply that a diet which promotes ketogenesis (such as a high protein, low-carb diet), may promote BRAF-V600E/MEK1 binding and tumor cell proliferation.
Interestingly enough, an HMGCL antibody has been produced in rabbits:
http://www.sigmaaldrich.com/catalog/product/sigma/hpa004727?lang=en®ion=US
I wonder if such an antibody could be used to safely regulate HMGCL levels during treatment and reduce cell proliferation.
A common mistake a lot of people initially diagnosed with HCL (including myself) make is to assume that HCL is like solid tumors and feeds on sugar. They then follow a low carb diet, which in turn causes the body to invoke ketogenesis to metabolize fat and protein. In so doing, they promote cell proliferation instead of starving the HCL.
This is the mistake I made when being treated. I wonder if it is one of the reasons why I did not respond as quickly as others to treatment during chemotherapy and my first round of Rituxan. I stopped the diet before my second treatment of Rituxan and ultimately got a complete remission.
Just remember, "liquid cancers" aren't like solid tumors. Follow a balanced diet, and let the medicine do its job.
Jonathan, I am a survivor of HCL --was curious where you got the information pertaining to diet and how being a liquid cancer it doesn't feed on sugar etc?
ReplyDeleteHi Jon. Thank you for your very informative blog. It has helped me so much with getting a handle on my HCL. Now I wonder if you are still in remission? I hope so and I think so many who have read this blog would love to know. All the best, Karen
ReplyDeleteHi Jon. Thank you for your very informative blog. I read through it in one sitting after being told I have HCL and was trying to get information on this crazy cancer. So, probably like so many who have read this blog I really wish you all the best of health and want to know if you will be ever posting again and if you are still in remission? I hope so! Karen
ReplyDeleteHi Jon—I have no idea if you ever check this blog anymore, or if you will get this message, but I wanted to reach out. My name is Kristin Brown. I was diagnosed with HCL in October 2016. While surfing the internet in the first days after my diagnosis, I found your blog. I read every word. And I felt so grateful that you took the time to document in such great detail your journey and experience. I reached out to Dr Kreitman and was entered into the trial. Although I achieved CR, I have had minimal residual disease. It hasn’t bothered me much, but my biopsies in 2018 & 2019 showed a slight increase in my aspirate. I didn’t travel for a BMB in 2020 (COVID!), so when I went in June 2021, I anticipated seeing some more growth. Imagine my surprise when my results came back that there was no minimal residual disease! Finally, 5 years post treatment and the Rituximab continued to do it’s job and cleared the mrd. I couldn’t believe it! I feel that finding your blog was divinely guided—it is truly thanks to you and your journaling of your experience that I am now cancer free. I just want to thank you. I wish I could meet you some day—maybe not in this life—but one day. If you ever feel the urge to connect, my email is Kristin.brown@gmail.com. Sending you all the best!
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