so i saw my oncologist last week she said all ur counts r PERFECT-u have been in remission for 17 out of 18yrs ur dosage is down to 200mm from 600mm-if i want after my next PCR mid april--no more gleevac--downside bloodtest every 2weeks for 4mo then 1x a month for 6mo gradully 3x a year--so friends NIGEL&SANDY wish me luck im gonna try it god willing ill b ok--regards steve bagliore
You are here
18years w/CML
My dear friend and patriot dadbags. I will root for you, brag about you and follow in your
footsteps. Even though you have as many years as I have months in this lonely journey.
I will pledge to go to TFR as soon as one more year. I am now PCR non detectable
after only 16 months and if I remain this way for 12 more months I will stop taking the TKI.
I am not afraid. We entered a high risk pool at diagnosis. Nothing can change that.
Brave people are needed to continue this progress. Good luck my good friend.
Romo
dadbags/Steve,
During Stop trials/cessation, PCR testing protocol is monthly for the first six months ... one of the primary purposes for this frequency is to gather statistics. For those who lose response, defined as losing MMR >0.1, the average time during Stop trials approaches four months after cessation. With you having been in remission for 17 years it is highly unlikely that you will become detectable, let alone lose response, during your first six months of cessation. If you aren't formally going to be in a trial the frequency of testing is between you and your oncologist. PCR testing every two weeks borders on insanity. I've never heard of anyone testing at that frequency and I've summarized all of the Stop trials.
My CML history https://communityview.lls.org/users/buzzm1
What is your age Steve? The older one is, the better the chance of a successful cessation.
Buzz
Hi Steve, so ½ dose and then stopping, great news. As I am sure you will know the longer on treatment the data shows the better the odds of successfully stopping treatment, and 17 years defiantly qualifies as long enough ! Depth of response is also key, of course, so again a big tick, all in all things look very good for cessation. You mention blood tests every two weeks, do you mean full blood counts, or PCR, as 2 weekly PCR is a little over kill, all the other studies have been monthly for 12 months mostly, some are 6, then every 3 months. Good luck, and keep us posted. Nigel
fish test i beleive-ill get the rest of my info mid april-will keep u posted
I’m on Dasatinib. AKA Sprycel. The first two months were brutal.
I was so sick and depressed that I was willing to check out.
I went on autopilot and made it through.
If I can hold these numbers for one year I’m gonna demand changes.
If it don’t work so what, going back on the meds is easy.
After all Progress for one is Progress for all!
Good luck be with you.
Romo
dadbags/Steve,
In regards to age, evidence exists that when it comes to CML, the older one is, the better the odds of a successful TKI cessation; with you being 69 the odds are in your favor.
In regards to being tested every two weeks after cessation, that's insane. With your CML history, it is highly unlikely that you will become detectable quickly, and if and when you do become detectable, that your BCR-ABL level would increase rapidly to above MMR 0.1 (defined as clinical relapse). In your case, assuming that you aren't part of a Stop Trial, I would lobby hard for regular quarterly PCR testing. IMO testing any more frequently would be a waste. If you do become detectable then you can test accordingly from that point on.
Buzz
Different doctors have different levels of comfort with dose stopping / reduction and how often they want to test the PCR.
A while back, I reduced to 70mg (from 100mg) of dasatinib and my doctor wants a PCR test every 6 weeks. Assuming the next result is as good as the previous few, I'll go down to 50mg. She'll want to maintain tests every 6 weeks for a while after that too, depending on whether we'd try another reduction after that (hopefully can).
The reasoning she wants these every 6 weeks is it given more data points to make dose reduction decisions on. Can't say I am complaining about it at all, though I am sure good decisions could be made with less frequent testing too.
David.
After each of my 3 dose reductions, my oncologist tested PCR 6 weeks after and then 6 weeks after that. My dose reductions occurred so rapidly, that I was essentially having a PCR every 6 weeks for nearly a year. I reached PCRU last September and held that in October and December, so I was finally put on every 3 months. Then last month, I went from undetected to <0.003% and my oncologist insisted on a PCE and a FISH in 4 weeks, which is now next Monday. Every PCR I have is for p210 (the breakpoint I have) and p190 (this has always been undetected/negative). Each of these 2 PCR's costs around $750 at Mayo Clinic here in the US. All this testing is anxiety producing but it's hard to argue when all my arguing has been for dose reductions. Thanks to the our congress not being willing to put a dollar limit on the value of a life, it's test test test and then test some more.
If and when I am able to try cessation, my protocol would be PCR every month for 6 months then every 2 months for 12 more months, then every 3 months. Seems to me like this is enough to me.
CMLJAX - you are being tested way too often. It is unnecessary and a waste of money and time.
There is no difference scientifically between 0.003% and "undetected" - NONE. "0.003" is below the precision of the PCR test. It easily can be an error, stray bcr-abl protein (which everyone has) or contamination.
FISH is irrelevant at any PCR below 1%. CML is a VERY SLOW disease when it is in chronic phase (i.e. zero to only a few percent blast cells). It will take MONTHS and MONTHS for CML to grow large enough to register a trend upward. As long as you are below 0.01% there is no need for protocol change.
Assuming your drug dose reductions are indeed causing a loss of PCRU, you need to be checked every six weeks or even eight weeks with no risk to you to catch and then modify your dose.
When my dose was being reduced, Dr. Cortes kept me at 3 month testing throughout. He told me we need time (measured in months) to see if the trend changes. Only complete cessation is tested monthly and then for a limited time.
.
Hold on a minute, Scuba. Not for everyone is CML that slow to reappear or grow. I was consistently getting <0.01 reports when I had to stop my Sprycel for a pleural effusion, twice. The first time it rose to 0.02 after 5 weeks off TKI and to 0.47 after 9 weeks. The second break was similar: after 4 weeks off TKI my PCR had risen from <0.01 to 0.03 and after 11 weeks, to an alarming 2.06. In other words, it did NOT take "months and months" for a rise from DMR to full-blown, must-treat-now CML. I'm sure it probably takes much longer the deeper you are into undetectable territory. I just think you should make sure you take that into consideration when making that statement.
No change here Kat ... 9 weeks is more than two months. 1% PCR is the threshold where FISH would even detect CML cells.
As I wrote above, CML is a slow disease when in chronic phase. The key is blast count. And blast count usually doesn't get out of hand until FISH approaches 100%.
However - I appreciate the psychology of this disease (or any cancer). Anytime we see our "numbers" go up it can cause anxiety, myself included in the old days (a few years after diagnosis). I remember asking my doctor for repeated PCR tests early on. It was he who told me how slow CML really is in chronic phase and that response up or down takes months. My point above is for those who are at or below 0.01% PCR.
Scuba - My last test was <0.003%, detectable but not measurable, whatever that means.
I know I am being tested too often, but again, I have used all of my ammo on gaining agreement with my oncologist on what was fairly rapid dose reduction. I have decided not to question the testing frequency at this time. If I stay the same or below on next Monday's PCR, I will likely bring it up with him then.
Thanks for all the reassurance you and others give to all of us at low levels with slight blips up. It helps a lot even if I am still quite anxious about next week's PCR.