12 replies to this topic

[johnny99]

Hi all! Last time I posted was just before my 6 month benchmark, and I was dealing with low blood counts and had a few drug breaks and had dose lowered to 50mg dasatinib. Thanks again for all the info and encouragement then! It seems slowly the counts are getting to almost normal levels at this dose!

My test results at 6 months: 0/20Ph+, PCR 25% (IS). Doctor didnt really know what to make of this, but he says CCyR is the gold standard for a good prognosis.

We did a FISH test (7 months) which turned out to be 4%. Just today I received my 9 months results: FISH 8%.

I was expecting 0% after hearing how well dasatinib can work at lowered doses, so a bit disappointed. We raised dose now to 70, with the aim for 100 if safe... but now I am starting to doubt if dasatinib is working, or if all the drug breaks and low dose has induced some resistance? Am I losing response? Am I just stuck at this level of response (CCyR bordering on partial)? Would appreciate some words of wisdom!

John

[hannibellemo]

Johnny,

I would say that you might do better with a TKI that you can take at full dose. With the exception of maybe scuba, those of us who are on a lower dose started out at the full dose and achieved a good benchmark before side effects dictated a lowering of the dosage.

As I recall, you had a pretty large cancer load at the beginning, as did I. I was MMR when I developed a pleural effusion and was off Sprycel for almost 3 months. I had nearly lost CCyR by the point I returned to the drug (at the lowered dose) and it took me 15 months at 50mg. to regain MMR. Tomorrow I will have my first PCR since regaining MMR, so I will know soon if I have been able to maintain it on this lower dose.

You have a pretty good trend established that Sprycel, at least at 50% of standard dose, is not working for you. Sooner rather than later I would have a sit down with your onc to decide what you are going to do about it.

Good luck!

Pat

[johnny99]

Thanks for input. I agree something needs to be done, the question is what would be the most sensible way to go about this. I know it's impossible to tell just yet, but in the best case it's a problem with the efficacy of a low dose (between months 3 and 6 a low dose with a few weeks break took me from 19/20 Ph+ to 0/20 ph+ despite poor molecular response: 75% to 25% pcr) that's stalling a deeper response -- in the worst case it's resistance/relapse developing. So now, as blood counts have improved, deciding between upping dose to 100mg and seeing how that works, or switching drugs.

[johnny99]

Pat: as you mentioned scuba's case, i read his posts. maybe i was unduly optimistic about what I could expect from a lowered dose. I suppose it varies person to person. Anyway, good luck for you pcr!

[Trey]

You are doing well enough given the low dosage, drug breaks, and less than a year on TKI drugs.  You are probably over-thinking it at this point.  Continuing along on the path you outlined seems very reasonable.  No signs of resistance, just difficulty staying on a therapeutic dosage for your body.  Everyone is different, but there is generally a reason why the dosages are set where they are, at least until a person achieves MMR.  But I think the sales hype for Sprycel and Tasigna being "many times stronger than Gleevec" was never a reality.  They work differently, so for some people they may be far better, but for most they may only be relatively better or even no better.  But the best drug is the one you can stay on without breaks as long as it works steadily even if slowly.

Overall, if you achieve steady CCyR by 12 - 18 months and then maintain it more than 2 years you are doing fine.

[johnny99]

Thanks for the reply. It's difficult not to over-think. The big picture certainly is that what you said, given everything I should be happy even about FISH <10% at this stage and now lobby for maximum safe dose. If that doesn't do it then it's time to change drugs. The small picture is that my FISH doubled from 4 to 8% in the space of 2 months (uninterrupted at 50mg). Just can't shake the feeling that the road to a SCT is paved with many small disappointments. Now just gotto find something else to occupy mind until the next results.

[hannibellemo]

Don't even go down that thought path; you are no where near SCT time! Many of us on here have had disappointments along the way and have had to readjust our ideas of how our TKI response timeline was going to look.

That's whats so great about this site. You get to see that the road to CCyr, MMR, PCRU, whatever, is rarely linear. It looks more like Billy's meanderings in the Family Circus cartoon.

Pat

[Garfonz]

This is my first post/reply and first of all want to say thank you to all those who contribute so much support and knowledge.  The wealth of data can be confusing and,yes, it is so easy to get disheartened if you are not an optimal responder or don't follow a particular pattern.  I was diagnosed aged 43 1 year ago in CP but with WBC around 550K.  I had pretty heavy load.  I started on Tasigna 600 dosage and responded very well. FISH was 11% at 3 months and as a complete cyto response at 9 and 12 months.  However my molecular % has been stuck at 2.4% at 9 and 12 months. I read of steady low levels below 1 but is it unusual to be at CCyR with a pcr over 2 or so? My onc wants to test again at 13.5 months instead of waiting for the 15 month check.  If it has not begun to go down again he wants to consider switching to Sprycel.  My question is it too soon to consider switching?  Is plateauing about 2% unusual? By the way we just did a mutation check and I have none that would cause trouble.  Just glad I don't have the T315i.   I really would like to stay on Tasigna because I have very few side effects.  I have been able to control the skin issues and itchy scalp and have no other fatigue or aches. I feel so strong and healthy right now except for the knowledge of those darn numbers.  Do those that react well regarding side effects to Tasigna do similiar when switching to Sprycel?  Don't like the idea of possible fluid in the lungs.

Thank you all and keep up the good work. 

[Tedsey]

I have been on 100mg Sprycel since Aug. 2010.  I shouldn't jinx myself, but I have not been dx yet with fluid in my lungs.  I feel OK on Sprycel and find it difficult to pin down the exact side-effects (but I have had some issues with my teeth lately).  However, the side effects are probably different from person to person.  I never had fatigue.  Maybe this will give you hope.  For a long while of high numbers and some plateaus, after 4 years, I reached PCRU.  My last two PCRs (last 6 months) have been zero.

It doesn't sound like time for alarm.  Hang in there.  It's tough.

Quick healing to you,

Tedsey

[Garfonz]

Thanks Tedsey.  I suppose all us just want to join the PCRU club or just even the MMR group which would be just fine with me.  Just don't want to be the outlier that doesn't follow the norm whatever that it.  I realize that after all the time spent worrying that suddenly I am still alive one year later and feeling great.  I suspect that i will worry for 10 years and realize looking back that it's been a great ten years and so on down the road.  Life is good and meant to be lived now, not just after we reach a certain level of response.  I think that's the mental trick, not only with CML but for anyone who lives with worry.

[johnny99]

Hi Garfonz. My onc said he's had cases with FISH 0 but poor molecular response, those patients of his have done well and eventually had the PCR drop too. You said they did a mutation test and you had none that would cause trouble. Does that mean you had some? Then you might want to check which tki they are most sensivive to. If thats not the case, not sure there's reason to switch drugs just yet, although would probably be no harm in it either. Just remember, if the PCR goes down with Sprycel, maybe it was gonna drop anyway. Wheb it comes to side effects, I suppose its always 'better the devil you know'... I always viewed Tasignia as the scarier drug.

[Garfonz]

Thanks Johnny. No mutations were found. Meant to say that I know mutations, if there, would be troublesome.

I've always considered sprycel my backup and would rather not use it yet.

[CallMeLucky]

I will echo your sentiment on being unduly optimistic about low dose.  I was PCRU on Gleevec and switched to Sprycel due to side effects.  Had some difficulty with chest pain so I lowered my dose to 50mg and maintained PCRU for a while, then all of a sudden my numbers started climbing.  I have not lost MMR thankfully.  When the numbers started to rise we went to 70mg and immediately they dropped back down to barely detectable.  Over the next two PCRs my numbers have slowly started to creep up again.  I am now on 80mg for a month and will be going to 100mg and see what happens.  I had a mutation test and nothing showed up, but to clarify they couldn't find any BCR-ABl to check for mutation.  For mutation test you actually have to have a decent amount of BCR-ABL for the test to find.  I am hoping that with the jump to 80/100 I will drop below detectable limit and then the question is if my numbers again begin to slowly creep up.  I have wondered for a while if Sprycel just doesn't work that well for me or if I have some resistance to it.  I've held off on changing drugs because overall I feel ok on Sprycel and I have not lost MMR.  A lot of people would be happy where I am and if my my PCR was stable rather than upward trend I would be less bothered by it.  I found it interesting when I asked the nurse what she thought about the situation she said in her experience she couldn't recall a patient that stayed on low dose Sprycel she said they only lowered for side effects and then slowly raised back up.  Contrary to what you may hear on internet forums, it seems not everyone does well on low dose Sprycel.  Unfortunately I happen to be one of them.