31 replies to this topic

[Buzzm1]

I decided to resume my 20mg sprycel to test that indeed my PCR would drop back.

 

And It did - quickly.

 

After just two months, my levels went below 0.01% again where it remains currently. I will try cessation again - but probably one month on and one month off. Or maybe just not take the drug during the summer so I can tan better. I feel I can go months without TKI before a measurable increase occurs.

After we have our CML under control (either PCRU for a year, or at a very low level for an extended period of time) IMO we owe it to ourselves to see how low of a dosage it takes to maintain that level, if not ceasing TKI dosage completely, remembering that we can always increase our dosage if, and when, it becomes necessary.  The longterm effects of TKI's aren't yet completely known.  The less TKI we have to take the better off we are likely to be in the long run.  This especially applies to older people, such as myself, but it does apply to anyone on a TKI.  It's an opportunity to lessen longterm effects.

 

First, lowering dosage, a little at a time, a month before the next PCR, to see if it changes anything, is a suggestion.  Only do what you are comfortable with.  That could be 100mg one day, and 50mg the next, alternating dosage.

[missjoy]

missjoy, ideally all labs would test and report PCR BCR-ABL to MR5 I.S. .001; it then would require a two log increase to lose MMR ( defined as relapse); 
if you had a very low PCR reading for a long enough time, the odds of successfully stopping TKI could be in your favor.
 
Scuba has tried it, beginning with an MD Anderson PCR reading of .01,  which they allege to be equivalent to I.S. .003
(MD Anderson has their own scale)

Hi Buzzm1,

Thank you! I don't understand why MD Anderson pcr reading 0.01 (%?)equals IS 0.003(%?) Could you explain it?

PCRU means less than number x, so it is not detectable below x. Is PCRU less than 0.0001 or 0.001%?

[missjoy]

My levels were less than 0.01 (M.D. Anderson scale) and I remained below this level for six months (two testing cycles) before attempting cessation. I was able to stay off Sprycel (20mg) for nine months before re-starting. Although I didn't have to restart, the fact my PCR went above 0.01 and went as high as 0.08 suggested to me that CML was slowly growing back although not in a straight line increase. I maintained zero blasts during this time (see vitamin D thread) which led my oncologist to suggest I keep going (i.e. with cessation) to see if my levels would drop back naturally (indicating a renewed immune response). I was still below the MMR threshold (0.28 M.D. Anderson scale). But, I decided to resume my 20mg sprycel to test that indeed my PCR would drop back.
 
And It did - quickly.
 
After just two months, my levels went below 0.01% again where it remains currently. I will try cessation again - but probably one month on and one month off. Or maybe just not take the drug during the summer so I can tan better. I feel I can go months without TKI before a measurable increase occurs.
 
I have a theory that continued TKI use suppresses the blood making system (including stem cells) - more for some patients than others, but definitely suppresses mine. When stopping a TKI, perhaps more leukemic stem cells come out of hibernation and begin to divide re-populate the CML cell line - then by re-starting my TKI they (dividing LSC's) get nailed. Maybe this can accelerate the LSC depletion? Just a wild guess on my part, but seems reasonable. Any way, a day without a TKI is a great day. I was intrigued how quickly my PCR dropped back below 0.01% after re-start on my low dose Sprycel.

Hi Scuba
Your theory makes sense. Hope you are right. You have the spirit of a pioneer. You also take curcumin.Do you mind if I ask what brand,what quantity and what time you take it?

How come MD Anderson scale 0.01 equals IS 0.003%? I didn't get it. Do you know?

Thanks

[scuba]

Hi MissJoy,

 

M.D. Anderson scale reports a higher bcr-abl/abl ratio than International Scale. In calibration tests, the scales roughly correlate to 1:0.35 ... that is a reading of 1.0% M.D.Anderson scale is equivalent to a reading of 0.35% International Scale.

 

So 0.01 M.D. Anderson scale is roughly the same as 0.003 IS ... and since the third decimal place is beyond the precision of the test - anything less than 0.01 in either scale is so low and within the noise of the test that whether one is "undetected" or not is unknown. 

 

I'll PM you on what Curcumin I take - but II take it throughout the day 2 grams at a time with or without food depending. Eight grams is ideal, but I often take less now (six grams). 

[rcase13]

The problem I have with taking the Curcumin is the expense. Everything is so expensive anymore.

[scuba]

I agree on the expense ... I rationalize it as "food" and factor it into our food budget.

Truth be told, I eliminated all of the other expense on vitamins we use to buy. Just a few key ones that one can't get from food easily anymore (i.e. Magnesium, K2, D3,). We also eliminated ice cream and boxed stuff, so that freed up some dollars for Curcumin.

 

Assuming cessation success that will free up some more money. 

[rcase13]

True, cessation certainly frees up some money...

[Buzzm1]

MissJoy, what is your CML history/current status?

 

CML Leukemia lab tests for PCR BCR-ABL

 

CML Leukemia definition of CMR

[Buzzm1]

Any way, a day without a TKI is a great day. 

In 9 days I'll reduce down to just 50mg/day, taken as 100mg every other day.  To say I am looking forward to the "off days" would be a major understatement; I've been looking forward to this for a long time.  It will only be bettered when I cease TKI dosage entirely in October.  Still, I am angry at myself for having waited so long before beginning to reduce my TKI dosage.

[scuba]

Buzz ... don't beat yourself up over making this decision. It takes a lot of time and understanding and tolerance for risk before one can make decisions away from doctors. You're in a good place.

[tazdad08]

I lost pcru after 3 1/2 years... It felt like a train hit me. I wasnt upset when I was diagnosed, but the phone call saying I was detectable again hit hard. I had self medicated at 20% of my dose for 3 years. I went back to full dose for 3 months and was undetectable at the next follow up. I have since went to 50% dose and still undetectable. That was 9-10 months ago.   

[gerry]

I know another CMLer who was on 200mg Gleevec - she had been PCRU for a few years. When we talked about me stopping, she decided to try coming off before me, the CML returned. She went back to 200mg Gleevec and returned to PCRU. 200mg makes her side effects bearable and keeps the CML in check. I had thought she might succeed due to the low dose and duration of her PCRU. You just can't tell.