My last pcr result is here and there is NO CHANGE for now, 10 months. I have the same result than when I was taking 100mg, 50mg or none: detected but not quantifiable.
I hope that my result will bring hope to my CML friends.
FYI, I take vitamin D3/K2 and curcumin every day. What is better than trying to boost my immune system to fight leukemic cells?!
You are here
10 months TFR
The irony is your D3/K2 and Curcumin protocol will do more for your overall health than anything you were doing before CML diagnosis!
It took CML for you to get healthier! How ironic eh? I personally believe CML saved my life (or I will live longer). It was only after getting diagnosed with CML that I had a full scale health evaluation and learned of my arteries calcifying and my nutrition deficiencies (magnesium). Only then did I do research on D3, K2 and Curcumin, not to mention other minerals and nutrition I was ignoring. In your case, D3 & K2 will likely prevent osteoporosis as well as keep your cardiovascular healthy.
Curious if you are experiencing any TKI withdrawal symptoms?
I think that I had some shoulder pain in the morning, after 3-4 months without Sprycel. Otherwise, I only had positive effects.
I totally agree with you about better health. As soon as I was diagnosed, I decided to avoid to have co-morbidity and have to take more medications. I bought a Firbit and begun to get 10 000 steps per day. And of course, thanks to you again for your amazing research on D3/K2 and Curcumin.
Also, I have the feeling to have some “power” on my CML.
Hi Scuba
Thank you so much for sharing your great information with us.Wich brand of vitamin D3 /k2 and Curcumin is the best.
By the way you have a great Doctor,he helped develop drugs to treat CML I wish I live nearby Georgia.
Good luck
Sue
Buffalo NY
Karinne - congrats on the TFR, that’s great news! Aside from a full cure I think that’s the aim for all of us.
Apologies for a bit of thread hijack but as you were talking about vitamin K2 I thought I’d ask Scuba a quick question.
A site that sells K2 states this... “Vitamin K2 is required by the body as it contributes to the maintenance of normal bones and supports normal blood clotting.”
With regards to the normal blood clotting does this mean that K2 would help or hinder someone with a low platelet count? Does it mean it would reduce the risks of blood clots in healthy people but might not be so good for someone struggling with low blood counts? I struggle with my platelets and would like to know more before starting a K2 supplement if there is any research.
Many thanks.
David,
You might be surprised on the number of people who do not have the goal of TFR in mind. I remember seeing a presentation on this topic at a conference a couple of years ago - older CML patients were much less likely to be interested in TFR than younger ones. Makes sense, really.
Also, there is a strong bias of TFR in high income countries. For example in Kenya it is not straightforward to get TKIs in the first place, so if you decided to give TFR a shot and relapsed after a couple of years you could find yourself in a lot of trouble. So patients are happy to stay on-drug.
Again, in lower income countries PCR testing is not as high quality which again is a disincentive towards attempting TFR.
David.
David, I have a had a TFR discussion with my specialist, and he has found several people who are happy to stay on the medication and not try TFR. Some have accused him of being motivated to try to save the NHS money. Personally 9 months now after stopping I have to say the reduction in side effects by cutting my imatinib from 400mg to 200mg was more noticeable than stopping after a year on 200mg. If I don't make TFR long term I will go back on 400mg until I get to MMR and then cut back to 200mg as soon as I can, but I won't regret having had a go at TFR.
I can believe it. If you’re doing well and don’t suffer side effects, why would you rock your the boat? Also, you’re less likely to be posting on an Internet forum about CML - we are a self selecting group who would usually be more keen to aim for TFR.
(Regarding K2:
https://www.uspharmacist.com/article/the-emerging-role-of-vitamin-k2
There is much confusion on vitamin "K" overall. Vitamin "K" comprises a group of vitamins although similar in structure perform very different functions in the body. Blood clotting is facilitated by vitamin K1. Calcium mobilization is facilitated by vitamin K2 (in conjuction with vitamin D). Vitamin K3 is also involved in clotting, but its role is less important than K1 and K2.
Vitamin K2 is what is very deficient in our diet because we've sterilized ourselves (gut bacteria/ antibiotics, etc.). Taking vitamin K2 at the 100-200 mcg level helps to restore normal K2 levels and does not interfere in blood clotting (which requires K1). I personally take much more K2 than 200mcg per day because I also eat Japanese Natto (loaded with K2) as well as supplement. Natto is an acquired taste, hence why most people will take supplements.
No concern regarding K2 and clotting. Petechia is a typical first sign blood clotting is not working properly and useful to watch out for if you suspect platelet dysfunction.).
Thanks Scuba, that’s great info. Thanks for taking time to research and give us all the info you’ve found.
I think i’ll try K2 along with D3 for a while now. FBC, PCR and biopsy results due tomorrow so I’ll have a good baseline to watch if it has any additional effect.