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CML personal update

I have reduced my dasatinib dose to every other day 20 mg. following a one month hiatus with no drug (prescription snafu).

My recent PCR from last week continued to show "undetected". I will continue every other day dosing until next PCR test (September) and if it still shows undetected, I will stop therapy and attempt treatment free remission. In this way I can wean myself off the drug and avoid withdrawal symptoms. I actually expect remission will hold and I will be able to finally put CML behind me except for periodic PCR testing (for the rest of my life).

Should I lose remission, I'll just restart dasatinib at my current dose. This is my personal experiment.


Great news scuba. Just to have TKIs work at all is a miracle. To be able to stop altogether is beyond a miracle. Wish you all the best.

How are you feeling amidst all this Coronavirus scare mongering?


I'm trying my best to be quiet with all of the coronavirus scare mongering going on ... I realize many have genuine fear - as many who I know who have CML have genuine fear. I came to grips long ago that we have only so many years on this beautiful planet. So I let data and knowledge from others guide me - and motivation - of others inform my thinking.

Ph.D's have motivation to be famous. Pharmaceutical people have motivation to be rich. Both work in our consumer favor. We get knowledge and we get amazing innovation. The knowledge part is that coronavirus is a respiratory sars/mers/flu like virus. It differs from them in only a few amino acid sequences. It attacks the respiratory lining and exposes the victim to a bacterial attack of pneumonia. The pneumonia is what 'could' kill if treatment is delayed or unavailable. The virus doesn't kill because the immune system can mount a defense against it (i.e. T-cells). The key is speed. If your immune system can mount an attack against the virus quickly - damage is limited and the bacterial onslaught is fought off (by neutrophils). This is the way the virus works.

The solution is two-fold - one, at an individual level, get our immune systems strong. I have written on this forum about all sorts of ways to strengthen ones immune system. The best way is soak up some sun! (or supplement) and add extra vitamin C (cudos Sandy). The second more longer term way is for innovation to produce a vaccine. That will come.

In the mean time, be prudent. If you are prone to getting sick - avoid crowds and keep your hands away from your face. This viral attack will fade pretty quickly. If it doesn't and millions die and many more are sick into summer than I'm stupid and don't know what I am talking about. We'll see if we are talking about this in May.

I have more 'fear' for all of our young people who work in restaurants, bars and other 'people' oriented business' which have been forced to shut down and they lose their jobs. Hopefully it's temporary.

p.s - and then there's toilet paper. Somebody, anybody - please explain to me why the hoarding and run on toilet paper? I simply don't understand this. Coronavirus affects the upper chest area - not the bottom end. Why oh why is toilet paper the number one item people seek out? Is this true in the U.K.? please tell me our British friends have more sense than Americans. You invented America and we end up hoarding toilet paper.

Hi Scuba,yes us brits have been buying more loo roll ,some more than others.We have been told to sneeze into tissue and get rid of it right away in the bin or flush it .I myself have had a mild cold for a few weeks and constantly blowing my nose so the extra loo roll has come in handy ,I have used miles of it .So the reason for me is ,it's cheaper than buying small packets of tissues in plastic wrapping or boxes of MAN SIZED  tissues cos I am not a man .Why don't they sell LADY SIZED tissues Mm.So there ya go Scuba that's my explanation haha ,Keep well my friend and good luck with TFR ,Denise. X

We have been able to reduce the toilet roll budget tremendously since I moved from imatinib to dasatinib. I do not quite understand public obsession with the mass buying of toilet roll. Yes, it does go against the grain to dispose of a giant Kleenex for each and every use.

Hi Nimbus ,yes I remember it very well being on Imatinib,what a nightmare that was ,I couldn't go out anywhere without taking our friend Imodium.Dasatinib is so much better ,take care and Keep well , Denise.

Hi SCUBA ,I really loved ur Phd's and upper &bottom one.wisdom coated in humor.wishing u health & happiness .you have transcended from the plane of knowledge to wisdom.keep it up,waiting for more.

Excellent!  I will be following your progress.  When stop your tki I hope the withdrawls are slim to none.  Such a low dose hoping for zero issues.



Should I request immunisation against pneumonia from my GP I had flu vaccine last year I had this thought as Corona virus symptoms can develop into a bacterial pneumonia immunisation might be useful