28 replies to this topic

[CallMeLucky]

Thomas

I response to your questions

1)  I had a huge drop after 3 months on Gleevec.  My first lab was not IS, so it is hard to compare it but I went from 1.2 to .25 on their scale.

2) I was FISH negative in under 6 months

3) I am not taking antacid, however I was taking Prilosec for a month or so prior to the PCR going detectable.  I questioned if that had any impact, but I was taking a very low dose and only for about 5-6 weeks.  I have been off it for a long enough time that it would no longer have any impact.

Appreciate you thinking of me to ask your Dr.

[thomaskk]

I am 100 % sure that you will see a lower PCR value next time. I support what Phil said.  Few CML stem cells got escaped to BS  when you lowered the dose . They have started producing off springs . TKI needs some time to do the house keeping to complete . I think you are going to achieve a better than expected PCR as few additional , perhaps previously hiding CML SC currently being killed.

No at all doubting Thomas

[JLS]

Thank you for sharing your experience of lower dosage. I too have been trying to get my doctor to lower my dose. I have been on Sprycel for almost 3 years and have developed terrible side effects. I have been searching

for answers for a while now. I even found a nearby clinical trial on stopping the drug all together. I was feeling as you that I have been negative for so long that I probably could stop altogether and be fine. Until then I would

insist my doctor lower the dose. After reading this I'm now re-thinking all of it. I don't know maybe I will just have to switch med's again?

Thank you again and best wishes as you work through this.

[Marnie]

JLS. . .

There are quite a number of people who are on reduced Sprycel and are doing well.  I've been on 50 mg since about December.

My onc was absolutely against reducing dosage until I got a pretty bad pleural effusion.  After a short amount of time off Sprycel, and then at 50 mg, I still retained my PCRu (I've been bouncing just above and below zero for awhile.  My doc was totally taken by surprise that I stayed undetectable and now he's fine with my reduced dosage.

In addition to the pleural effusion, I had a really bad rash that was driving me crazy.  It's a lot better on 50 mg, though it's not totally cleared up. 

Perhaps you could convince your doc to step down to 70 mg for a few testing cycles.  I also think it's important to really let your doc know how bad your side effects are.  The docs sometimes poo-poo them. . .but they aren't the ones living with them.

I was as surprised as my doc to find that on 50 mg I'm still retaining PCRu.  And the side-effects are a whole lot better.  In your shoes, I sure think I'd want to try reduced dosage before trying a totally different TKI.  When you switch drugs, you are typically switching one side effect for another. 

Good luck,

Marnie

[CallMeLucky]

As is often the case things look a bit clearer after the storm.  I honestly feel foolish with these panic attacks, I was not cut out for cancer, but I guess no one is.  My latest PCR results have dropped to 0.0048% IS, just slightly above detectable limit of 0.00325%.  It appears the 100mg has pushed back down again.  I have given some thought to this and while I have one theory about digestion and blood levels the reality is I have no idea why low dose does not work for me and I likely never will.  I am just going to try and be grateful that for now the 100 is working.

I have a lot of work to do to try and manage my anxiety, clearly the cml is going to do what it wants and the drugs will do what they do, some test results will be good and some not so good.  I will be relieved when they are good and stressed when they are not as good as the one before.  I hope I can learn to roll with better.

Thank you for being the supporting community that you are, I value all of you.

All the best

[Dina36]

Woohoo so glad to hear that Lucky

[rct]

Drive to Portland Oregon, brutha.  That guy, the one who started all this, he will explain to you that your 0.013 is, for all intents and purposes, as you oncologist, the exact same as 0.0000000.  That doesn't mean it will help you through the anxiety, but I do know that his view of it definitely helped my Mrs get some peace.  On her 4th, 5th? doc locally now, we still talk to Portland on occasion.  If you possibly can, get out there and see him.  Carole is gone now, so the process might be a little different, but well worth seeing him.  And lets face it, some of most beautiful earth on the earth is between southern New Jersey and Portland Oregon, that's why we don't mind the drive at all!

Good Luck, Luck.  You don't need a joker like me telling you you are good, but, well, you are good.  Long time to come, lots of stuff to do, Mrs even planning to retire in four years, persistent g^%%*da#$ neutropenia and all!  Never woulda thunk it.

rct

[Happycat]

Lucky,

I'm sorry this has given you so much grief and worry. Your numbers are so close to the detection limit, that as you get that low, the tolerance of the instrument has a larger impact on the value. When your number is 0.155 +/- 0.002%, the 0.002 variation isnt that big a deal. But when your number is 0.004 +/- 0.002%, the variation in the number is 50% either way, and that has a big impact, especially psychologically.

When you're close to the detection limits, think of the value as more of a coin flip. It will be either heads up (the value jumps up a bit) or heads down (goes down a bit) and which way it goes is the same probability as that coin flip.

I had to do a probability lesson in math one year. We had to flip a coin 100 times and note whether it was heads or tails. I remember a number of flips where I'd get a run of heads or tails, maybe 5 or so in a row. I try to keep that in mind when pondering PCR values. I know, it's not quite the same in your case, because you had the other variable of a dosage change thrown in. But a correlation in trends does not always mean causation.

I'm glad the numbers are going back down, though. I'm sure you'll sleep much better. Have a glass of bubbly or a nice relaxing cocktail. You've earned it.

Traci

[PhilB]

Congratulations Lucky.  I've been logging on evrey couple of days waiting for those results and couldn't be more pleased for you.  It's a slight shame you didn't get them a few days earlier though as Easter would have been much more appropriate for ending up with egg on your face!

I'd read the numbers as suggesting that reduced does keeps you stable in the 0.0x % range and full dose at the 0.00x % range.  Both are fine places to be so it's then down to a trade off of side effefcts vs anxiety.  I'm guessing at the moment that you're happy to put up with more side effects for less stress and I can't say I blame you.  I got very hung up on trying to get that second zero after the dot for a while and having got there for the first time I know I'm going to be grumpy when it drifts back above it again even though it's a meaningless distinction.

Anyway, congratulations once again.  I'm off to pack for the first camping trip of the season and get the kayaks strapped to the roof rack.  I can recommend it as an alternative to stressing about results!