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80% reduction in BCR-Abl

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Hi everyone

Hope you are all doing well!  I haven't posted in a while, but wanted to share my latest results with the community.

My history with CML was a little tricky - diagnosed with a huge spleen and borderline accelerated phase in 2015, started on 100mg dasatinib, struggled for 21 months to reach MMR without missing a single dose, but experienced some unusual side effects with lymph node swelling that looked like lymphoma and caused all sorts of concern.  I switched to 400mg imatinib in May of 2018 and my BCR-Abl hung around 0.03% for approximately 18 months, and my test in July showed a stable 0.033%.  

Now, this past semester I've been on a sabbatical where I haven't had to work, and I have been trying to experiment with some of the advice that scuba and others have posted here.  In particular, I've done the following:

1. Eaten 8 Brazil nuts a day to increase selenium in my body (for the first couple of weeks I ate around 30 to 40 but then read that excess selenium can be toxic)

2. Tried to improve Vitamin D levels by spending 25 minutes in the sun twice a day with 25% of my body exposed (easy to do in South Africa, where we have 9 hours of sunshine daily in Johannesburg, and it's summer now)

3. Tried fasting for 72 hours at a time - the longest I managed was 30 hours.  This wasn't because of nausea, but of extremely bad headaches that soon became unbearable around the 20 hour mark.  I gave that up after three attempts and now eat a normal diet (excluding grapefruit and alcohol).

Amazingly, my test from the end of November now shows a BCR-Abl of 0.0061% (well into MR4 by now) and this is a reduction of over 80% from my last blood test.  I don't know whether the Brazil nuts or Vitamin D contributed to this reduction, or whether it is a misprint by the laboratory, but I'm ecstatic as I never thought I would reach this level after a slow start!  My doctor dismissed these as possible causes, saying that I have simply broken through a plateau and the CML is weakening over time, but I really wonder whether there is something in this!  I'm looking forward to seeing what the next result is in March.

In the meantime, I wish everyone here a happy festive season and a good end to the year as we approach 2020.  May this be the year in which a lasting cure is found.  Thank you to everyone for all your support, guidance, encouragement and advice during my four-year journey with this condition.  Best of luck to everyone!

Martin

This is wonderful, and so interesting.  How can we ever know all the answers?

No surprise to me, Martin!

(if you try fasting again - drink salt water (1/4 teaspoon Himalayan salt in a glass of water) a few times a day. That will take care of the headaches. During no eating, vital to get lots of water and some salt into your system - mostly sodium.

I had headaches to the first time until I learned this little nugget of information. Now I fast easily. Also test for ketones. Until you are making ketones, you are not in a fasted state which triggers stem cell renewal upon refeeding.

Scuba, thanks so much for this tip!

I'm going to try it this weekend and let you know what happens. I have bought the ketone strips but didn't bother using them because I couldn't reach the 48 hour mark. It would be great if I could also get to the point where I can fast regularly (and I'm sure that it will help with the CML weight issues too!)

Thank you again.

Martin

The first fast is the toughest because your body likely never had to "manufacture" ketone making enzymes before. So when you deprive your body of carbs (food in general), the metabolic machinery to keep energy flowing has to ramp up. That can take 36 hours. The good news is once it does, you have it available next time you fast (as long as you don't go too long and revert back). I now regularly go without eating for a day or two at a time every week. It's liberating to not crave food.

 

Scuba 

do you do any physical training at all?  I’m interested to how fasting can affect the bodies ability to retain muscle mass.  
 

regards

Mick Ellison

I do - some weights, mostly cardio (HIIT).

It's a myth fasting erodes muscle mass. During a fast, the body requires about 4 grams of glucose a day to maintain a bare minimum of circulating glucose (~75 mg/l). It makes this glucose through a process termed gluconeogenesis where glycerol and protein are combined to form sugar. The necessary protein mostly comes from recycled blood cells (white blood cells mostly) and other damaged cells (amino acid scavenging). This is the autophage process where old and non-functional tissue is recycled for "parts". Lean muscle mass used for motion is spared. Only during starvation when all of your fat is gone will the body cannibalize its muscles. I suspect most of us have plenty of fat on our body to last us quite some time to prevent that from happening. During a 3 day fast, for example, you would barely touch 3 pounds of fat.

This is why fasting is so powerful an inducement to stem cell regeneration. Old blood cells are scavenged in preference for parts to keep a bare minimum of sugar around. Once refeeding occurs, the bone marrow is stimulated to replace the old cells. It's a marvel of bio-engineering.