Six week PCR result

If the result on the 19th of July was your first PCR test, then you are doing great and it’s certainly an “optimal” result.

I also don’t agree with your doctor. Higher myelosuppression is well documented at 140mg dosages more than 100mg, so it surely stands to reason that it will be higher at 100mg than 50mg.

I think you need a much better reason than that to change TKIs - dasatinib is clearly working well against CML and if the side effects are not too bad apart from the myelosuppression then surely the first port of call is dose reduction. If that doesn’t work, then sure, by all means change medication.

David

Your doctor is out of date. If he insists - you need to get another doctor.

Sprycel is working superb for you. It is destroying your CML, because your CML cells are very sensitive to it.

Your path forward is to lower your dose. You should consider lowering dose to 20 mg. and monitor your CBC weekly. You may very well still develop 'some' myelosuppression that takes you down below safety again. If that happens a drug break is the recommended protocol (avoid stim shots) with weekly CBC to track recovery and then re-start of drug when neutrophils climb above 1.0. Assuming you can stay on drug (minimal myelosuppression), you will likely continue trending downward....and on only 20 mg. Should your PCR stall or go up a bit, you can always increase drug to 40 or 50 mg.

The fact that you experienced myelosuppression is an excellent indicator for high CML sensitivity to Sprycel. "Use" that to your advantage by lowering your dose so that you still have effective response with minimal or zero side effects you can feel. I am on 20 mg. - have been for years, I am PCRU AND I feel nothing from Sprycel. Most days I don't even think about having CML. I still have some myelosuppression, but it is my new normal and rock steady (which is the reason I am looking forward to stopping my Sprycel early next year).

Note: Everyone is different. Those who respond well at 100 mg may not respond at 20 mg. Those who get severe side effects at 100 mg including pleural effusion and myelosuppression may respond excellently at 20 or 40 mg. A doctors job is to find the correct dose that is unique for you. One size does not fit all - that is the new learning occurring in the clinic. Your doctor needs to read up on this so he doesn't mistreat you. Tell him to contact Dr. Jorge Cortes at M.D. Anderson who is one of the top 4 CML researchers in the world. What I wrote above comes from him. He's my doctor. Ask your doctor to ask him, "Dear Dr. Cortes, have you treated any patients with severe myelosuppression on full dose Dasatinib by lowering their dose to 20 mg with success? Do you recommend dose interruption instead of neupogen shots early in disease treatment to treat myelosuppression until stable - assuming few or no blast cells?)

Hi Stephen,

Testing by my Dr, in the initial tests he ordered, then at six weeks, next is at 12 weeks.

My understanding is that it is the result from the PCR blood test detecting the BCR-ABL protein present in PH+ CML, so the fusion of those bothersome number 9 and 22 chromosomes.  The test compares the level of normal genes to the BCR-ABL fusion gene and the ratio between normal and abnormal is then given as a %.  

This seems to vary greatly between everyone at diagnosis for those that have it, some people have reported percentages in excess of 200%, others lower 40% etc.  There also doesn't seem to be much correlation between the % and WBC at diagnosis, to be honest I find it all a bit confusing but I'm sure one day I'll understand it, or maybe not 

In any case down is the direction we want, way way down.

trusamandfive -

You are early in treatment - the most valuable test measure at this stage is FISH. You should be having FISH tests done to determine your CML burden.

FISH labels actual CML cells so they can be seen under the microscope (bcr-abl gene is "labeled" with fluorescent die) and then counted in comparison to normal cells (no fluorescent = no cml). So under the microscope, out of 200 cells "counted" how many of those cells are bcr-abl. At diagnosis most of us are at 100% (200 out of 200 cells are leukemic). Over time (year to 18 months) this percentage will drop and for most us it drops to zero. Zero = complete cytogenetic remission (CCyR) following successful treatment. CCyR is the single most important milestone you can achieve.

Once cells no longer show up under the microscope PCR is needed to continue tracking CML disease. Frankly - PCR is a waste of time and money to take at diagnosis. FISH tells the story in the beginning.

When FISH = zero, PCR is approximately 1% (+/- 10%).

I suspect most labs prefer PCR over FISH because PCR is an automated lab procedure (one tech many samples) and FISH requires one tech to look under the microscope at YOUR cells. PCR is easy, FISH is labor intensive. But FISH is the correct way to go in the beginning.

Thanks Scuba,

I'll take a guess that here FISH costs more than PCR and Drs are directed to do PCR.  I'll have to look into it.  

A little bit like here in Tasmania many people are low in Vitamin D, interestingly we also have the highest rate per population of cancers in Australia.  In 2014 the govt told Dr's to stop routine testing of Vitamin D with annual blood tests, presume the population of Tasmania has inadequate Vitamin D levels and advise them to take supplements.

I'd never heard of it until last month when I asked my Dr what my Vitamin D levels where, I'd never been advised to take supplements either.....

I was DX in 2016. Much White Blood cells and BMB.
CML Leukemia...What A DRAG!

After 5 months of 100mg of Sprycle and great response
and finding Destiny Trial updates:

https://www.youtube.com/watch?v=SMIu4zCd1nI

I  started to break my pills in half because when I suggested
a lower dose to my Dr, whom I greatly respect, he  told me,
‘That would be against the rules.

Romo don’t want to break the rules!
So I broke the pills on my own. It worked. I am now PCRU. 2-years in!
My Four criteria for my decision.

1) I was a fast responder. MMR in 6 months.
2) I only had the P210 mutation. (some trace of P190 that quickly
disappeared after the second test.
3) I was in MMR.
4) I had no “Blast Cells” in my blood work.

We are our own doctors.
My Oncologist thinks he’s a genius for not lowering my dose.
I think I am a genius for lowering my dose.
We love each other.

I am responsible for what I put in my body.

Romo

Hahahaha Romo I think I love you, this made me laugh.  Im glad your letting your Oncologist hold onto his genius dream.  Mine looked concerned the other day when I had so much to say about what was happening with dosages and knew exactly what goals we were aiming for.  

He asked if I had a nursing background, which I thought was a bit cute given his question could imply that he thinks females can only be nurses, so I said no, no medical background, just six weeks of research, he will love me or hate me, time will tell.

I think I love Romo too, but cannot agree with continuing a dishonest relationship with your oncologist.  If he/she isn't up to date on the latest with respect to dose titration of TKI's, it is better to find a doc who is than to change dose on your own without telling your doc.  I know some of us may not be able to find a doc who is up-to-date, so in some cases it may be necessary, but I think it's best to have an honest relationship with your doc.  I wanted to reduce dose when I hit MMR in 82 days but it took me 2 more meetings with my onc to convince him to let me try, which he did at 6 months when my PCR was .006%. Since then, he has approved 2 more dose reductions and I have been on 25% of original dose now for about a year and maintaining PCR at <.003%.