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Every other day dosing can be successful (dasatinib)

https://library.ehaweb.org/eha/2018/stockholm/215435/clemence.loiseau.ma...

Conclusion

A maintenance therapy with dasatinib once every 48 hours after achievement of a deep molecular response is feasible. Pts with duration of TKIs≥3y and duration of MR4≥1y experienced very high rates of survival in maintenance without loss of MMR (>95%) and without dasatinib related toxicities. Our results suggest that maintenance with dasatinib is an attractive option for pts in sustained deep molecular response.

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This is very good news to report. I may even do this myself as I decide on discontinuation. May help with withdrawal which is known to happen when dosing is stopped suddenly.

(note: paper is from 2018. Interesting how long it takes for new knowledge and results to disseminate.)

I am greedy.  I want to go to every other day dosing, 20 mg, AND maintain two zeros to the right.  I doubt there will ever be a study of THAT!

Kat and Scuba,

I haven't posted about my last visit to Mayo yet, but this seems as good a time as any. My current onc switched me to a colleague on the myeloid side when it became apparent that I was no longer a boring CML patient after 10 years. Dr. A-K did his leukemia fellowship with Dr. Cortez so I feel pretty good about him professionally.

Short background, one year ago today, I started experiencing signs of pleural effusion. I had been on 50 mg Sprycel since May of 2012 when I had my first pleural effusion 2.5 years after switching to Sprycel 100 mg from Gleevec due to liver toxicity. My first pleural effusion (in my right lung) went away after discontinuation of Sprycel for about 2.5 months.

This time the effusion (in my left lung) continued to be consistent. There was no lessening of the fluid after 2 months off drug and I lost MMR. We decided to insert an indwelling pleural catheter so I could drain fluid daily on my own and reduce Sprycel to 20 mg. thinking the effusion would subside quickly. I'm still draining, but the amount has recently reduced drastically so perhaps there is a light at the end of the tunnel.

Dr. G wanted to switch me to bosulif and I have been very resistant to that idea. After 10 years I did not want to deal with new side effects that could be worse than what I was already dealing with. So, enter Dr. A-K, who, as it turns out, dislikes bosulif as much as I. In his estimation there have been too many cases of grade 3/4 colitis with bosulif that have required hospitalization. If there are other options for treatment he would try those first.

Here's a couple of interesting factoids I learned from him:

1. 85 - 90% of CML patients at the Mayo Clinic are on Gleevec. For some reason that surprised me.

2. It is very unusual to experience grade 3/4 pleural effusion in just one lung and even more unusual for it to re-occur in the other lung. (Clarification: re-occurrence usually happens in same lung as first effusion.)

Dr. A-K gave me four options for treatment, of which only the first two were ones that interested either of us; continue what we were doing, 20 mg. daily and hope the fluid eventually goes away, (I forgot to mention that I regained CMR 3 months after starting Sprycel 20 mg in December 2018) OR, try 20 mg. every other day and see what happens. He has a couple of patients who are doing very well at that level.

So, I chose option 2. I'll have a PCR mid-October so I will update you when I get results. My goal is MMR or below.

 

 

I wish you the best!keep us informed!

Thanks, Snowman!

Pat - So good to hear your update.  That's the option I would have taken, too!  I just had my (now) annual visit to the pulmonologist for a listen and an x-ray.  Sadly, he sees a little bit more fluid than last year, and that was a little bit more than the year before.  BUT.  Absent symptoms, he still doesn't think it's worth "doing anything," by which I assume he means draining/analyzing the fluid or stopping Sprycel.  So, I sit.  Just also got my PCR which was exactly the same as it's been for 18 months on 20 mg Sprycel:  0.005% IS.  So, I can't complain, but I remain with that old uneasy feeling way in the back of my mind - will I have to switch someday?  My onc, although he's happy to have bosutinib in his toolbox, isn't a big fan either.  His switchers don't tend to improve their PCR numbers or go to undetectable, and they don't necessarily get rid of their pleural effusions.

I wonder two things, one for me and one for you:  For me, I'll be fascinated to hear how your every-other-day plan goes, because I'd like to try that.  But I don't want to go back to MMR.  For you, I wonder if the amount of fluid I'm currently putting up with is any more than what you're now dealing with, and maybe you could stop draining?  As I recall, though, you were quite bothered by dyspnea - you could tell when the fluid crept in.  I am a peasant clod and not the princess and the pea, apparently - ha!  

Anyway, please do keep us posted.  When you say you're CMR, can you put a number on that, or is it reported undetected?

kat, ha! The difference between you and me is undoubtedly the level of fitness! Yours being much better. For the past 5 days I've drained an average of 75 ml, less than 50 is the goal. CMR is Complete Molecular Response, takes less effort to type than PCRU (see what I mean about laziness, I mean, fitness?)

I think my effusions ebbed and flowed, the level wasn't always constant. After a thoracentesis I would start to notice dyspnea again at around 750 ml which is probably considered moderate.

kat, the level of fluid could have been just a little bit more on that day! Your level could still be remaining constant. That is merely one point in time.

One year is actually pretty quick! I read somewhere that from the time something is discovered to have clinical significance to the time the information is disseminated and put into everyday use can be 7 years! CML has always been fast tracked, though.

Lordy, "fitness" is one word that could never be applied to me!  I have started walking again, but that's all I do.  Very bad.  It takes me two hours to get through the New York Times and the Washington Post each AM (the actual print versions), while I watch the runners and the dog walkers and the cyclists go past my window.  Too much sitting, I know this.  But, what if exercise INCREASES the pleural fluid???!!!??surprise

Exercise might actually help prevent pleural effusion - but only when there is no current P.E. event.

The rapidly expanding rib cage to near full extension helps clear the plura lining during aerobic activity.

Sounds plausible.

Dear Pat, so good to hear from you. And especially that your PE is reducing little by little. I like option 2 but what about stopping Sprycel for 2 months and hope that your lung would clear, now that the liquid is minimal? You might go up with the pcr but you know the drill, it will go back down as soon as you are back on 20mg. Let us know about your progress.

Best,

Karinne

Karinne,

I had actually thought about that this summer. At that time I thought my option would be to go to bosulif and because its effectiveness for me was unknown I decided not to bring it up because I wanted to start on a low dose of bosulif. I wasn't sure they would agree to less than 400mg if my PCR went above MMR.

However, I didn't think about it in terms of continuing on Sprycel. If I'm still draining in November I'll discuss it with Dr. A-K then. Good idea, thanks!

I am very interested in this thread and you all may be interested in my husband’s experience.  Diagnosed 2012 (was very fit 68 y.o. At time of dx) with low disease load and became undetectable on Tasigna within 3 months.  Lowered dose and then tried and failed TFR.  Started Sprycel 70 mg and after 1.5 years got severe shortness of breath with no signs of PE or PAH.  Lowered to 50 mg and serious SOB came back.  Went on drug holiday that turned into 18 months TFR.  PCR came back this month at .32 after bopping around .1 for a few months.  He refused to try Sprycel 20 mg because it took 10 months drug-free to get rid of shortness of breath.  Gleevec wasn’t an option due to previous eye bleed. 
CML specialist just started him on low dose Bosulif 100 mg and after one month PCR we will know if effective.  The hope is that highest he would go is 200 for PCRU and not have side effects.  So far NO side effects on this low dose.  No studies (I know of) of low dose Bosulif and not much anecdotal info.  Sharing here since side effects of Sprycel and Bosulif discussed on this thread. 
Once I know more will start separate thread so more people will see it. Fingers crossed 

Finding the best drug and ideal dose which works best is more art than science at this point in CML treatment. There are very few clinical studies being conducted in this area of dose matching to patients. Only through anecdotal experimentation by patients and their doctors do we learn what could work.

The good news is that CML is a slow disease in chronic phase. It took years to develop in our bodies before symptoms occurred. By reducing CML to near undetectable we gain those years back in order to try dose and drug breaks. We can experiment safely.

Low dose dasatnib (<50 mg) did not become possible as a protocol until it was forced on doctors and patients. Patients had severe side effects necessitating dose interruption and/or reduction. To the surprise of many, some patients on no treatment remained disease free. Others on lower dose saw remission occur. That is how  researchers learned low dose or stopping could work and better than the clinical trial accepted much higher dose. It was by accident.

This and other forums in CML where patients share their experiences is so valuable in helping to keep us on the leading edge.