Hi it’s Tanya here,got my first bloods back today after 1 month on 50 mg Sprycel and was 0.015.Can someone tell me if this is good?I am feeling quite well apart from poor sleep and further hair loss however Doc said result was looking good and will stick to 50mg along with Tumeric and Magnesium plus a heap of other vitamins.I do think Sprycel should be first line treatment at a lower dose instead of Glivec...Will update in a month.Thanks for listening.
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0.015 after a month on Sprycel.comments?
That's a REALLY good number, Tanya. You are way into the safe zone. I always thought that Sprycel would work for you. Further advice from the VOE (Voice of Experience): get a handle on your poor sleep and any remaining depression and anxiety will improve. Don't use pharmaceutical or supplement aids to do this. Review and apply sleep hygiene recommendations instead. Unless you have a documented insufficiency (from a lab test done by a doctor) stop taking all those supplements!! You're just going to make your poor stomach sick. Eat FOOD.
Thank you Denise,can you let me know yrs in 3 weeks?Glad it’s good but am not sleeping much at all..it’s the”chemopause “ thing.May try Sprycel in day instead.Thanks for your love and encouragement too😊
Thanks Kat,yes I remember you suggesting sticking to Sprycel.You were right my friend!How are you doing on Sprycel?I have colour returning to my face and despite little or no sleep,am feeling better overall and am very grateful.Thank you for yr response!Tanya
Hiya Tanya ,when I finished with Imatinib my blood was 0.4 ,after a few weeks on Dasatinib it was 0.03 so I was thrilled with that but my next one 4 weeks later was 0.04 a slight rise so I was really disappointed with that .I am hoping my next one doesn't rise because doc says I should go on 100 mg if that happens which of course I don't want to .Since being on Dasatinib and taking magnesium before bed I have had the best nights sleep in ages so you might find that it's not that that's causing the sleepless nights but you won't know till you try .Hope you get that sorted soon .I will let you know my next results in a few weeks .Denise.
Denise,thanks for that!I hope yr bloods are better too so you can stay on 50 mg.Yes and let me know plse.I really do not understand the blood test result numbers.Can you please explain them to me?0.04 0.14 What’s the optimal figures we are aiming for?Glad you sleep so well,that’s definitely a bonus!
It's just arithmetic, but what confuses us is that it is expressed as a percentage, and yet we're already looking at a decimal point, so our brain thinks - what, a percentage of a percentage??? See if this helps (it helped me, math-challenged that I am):
NOTE: This is vastly simplified and I've left out the science bits that don't help us ordinary people understand.
Anything to the LEFT of the decimal point is telling you what percent of the sample is bad (CML). So, 100. translates as 100% of the sample was CML. And 100% of anything means, all of it. So anything less than that is COMPARED to 100. (Like, 98% or 54%, etc). After 3 months of TKI, it should reduce to 10. which means only 10% of the sample's cells were bad. At 6 months, it hopefully shows 1. which means only 1% of the sample showed CML. Somewhere around here your FISH test should show zero, which means you have achieved CCyR, or Complete Cytogenetic Response. This is the so-called gold standard for being "safe" from progression.
But onward we march and lo! We pass over the decimal point to the RIGHT side. When your test shows .1 that is MMR or MR3, meaning Major Molecular Response or Molecular Response of 3-logs and it means that 1/10th of 1 percent of the cells in the sample showed CML. Many people consider this level to be successful treatment and it is very, very unlikely for CML to progress when this has been achieved and sustained. From here you start adding wonderful zeros: .01 is MR4 (sometimes called DMR or Deep Molecular Response) and means Molecular Response of 4-logs, or 1/100 of a percent of the cells show CML. .001 is MR5 or Molecular Response of 5-logs, or that 1/1000 of a percent of the cells in the sample show CML. MR5 is most certainly the equivalent of PCRU (Undetectable) and many consider MR4 to be also. Many labs don't even report that many places, and certainly the number gets much more unreliable at the third place.
This can help explain why 0.003 on one test and 0.004 on the next is NOT a significant change. So, here's a pop quiz: you tell me the difference (in words) between 0.04 and 0.14. Please get it right so I know I'm a good teacher!
My doc does not recommend stopping for me unless and until I have a couple of years of consistent undetectables. He feels that if there is any detectability, there is the potential for regrowth, even if it takes 10 years for it to show up. And by then, it might have mutated to a slightly different presentation and we might be dealing with a harder situation. (Of course, even "undetectable" is no guarantee that there are absolutely zero CML cells.) I am at the lowest of the low doses for Sprycel and have no discernible side effects, although of course we all worry about what is going on "underneath" even while we feel OK. Also, the times when I had to stop Sprycel for pleural effusions, I got a pretty swift kick in the pants by the CML - it came roaring back with great speed (like, from .02 to 2.0 in 12 weeks). So, for now, I'm content to stay where I am.
I have been thinking a lot about patients who have excellent response only to lose it quickly when they stop treatment. I have a working theory that this is due to large quantities of CML stem cells lying quiescent (dormant) in the bone marrow. When drug therapy is stopped, these leukemic stem cells quickly restart disease.
Normally, during therapy, more and more leukemic stem cells divide and when they do, they are susceptible to drug attack. For whatever reason, your blood system has not needed its stem cells to divide to get blood formation going. Stem cells get triggered to divide when there is a sudden loss of blood (trauma,accident), long term fasting (3 days or more) or severe disease necessitating strong immune system response. I wonder if patients who have "undetectable" response and then keep it when stopping drug therapy have simply exhausted their CML stem cells?
It is why I am focussing on factors which cause stem cells to divide so sprycel I take kills them. Over time (who knows how long, a few years?), coaxing my stem cells out of dormancy may be as effective at eradicating CML for long term remission success.
So I have been trying 3 day fasts several times per year along with one day fasts most weeks because of new data showing blood stem cell activation.
I suppose one could give a pint of blood and that should also trigger stem cell division, but leukemia patients are barred from giving blood. Of course, we could try and get sick - nah....
An additional approach perhaps is what we are learning recently about Selenium and it's action on leukemic stem cells.
I am of the opinion that "all of the above" approaches may help. I am increasing my selenium intake to levels suggested by these papers. In addition, I am fasting 3 days several times per year and I continue to take sprycel - all in effort when I stop treatment, my leukemic stem cells will have long been eradicated.
Of course, if I stop treatment and my CML comes back - back to the drawing board.
Just a working theory.
Wow,so much to learn and know about this illness...grateful for everyone’s Input as would never have known bout the effectiveness of 50mg Sprycel and taking tumeric and magnesium etc...Yes I understand now more about how the disease can lay dormant and why you,Kat,are staying on lowest dose Sprycel...makes sense.As for you,Scuba,you are a goldmine of experiential info.and am glad to glean what I can from you through this “journey “...