24 replies to this topic

[Gratefulwife]

Hi, After a failed attempt at treatment free after 4 yrs on Tasigna and PCRU for all that time, the CML specialist has suggested my 72 yr old husband try 70 mg Sprycel (once daily) instead.  My husband maintained PCRU on Tasigna at somewhat reduced dose (200 mg x 2 daily) the last 2 years he was on it.  He was considered good candidate for TFR, but his PCR went up right away to .03 and then 1.2.  He went off Tasigna (which he tolerated well, especially at the lower dose) specifically because of concerns about vascular occlusive events and other long term toxicity.  Returning to an even lower dose of Tasigna, eg, 200 mg per day,  is not an option due to onc wanting to get him back to MMR quickly.  MY MAIN QUESTION:  Has anyone NOT had pleural effusions on Sprycel at 70 mg?  I have read so many horror stories.  AND, are there ways to monitor and catch it before it gets bad....or suggestions how to avoid this side effect that appears to affect at least 28% of those on sprycel and perhaps more, especially given his age.   Any other suggestions from experienced sprycel users?  

We had high hopes for TFR and are disappointed, but know how lucky we are there are these other options.

Appreciate input....being "high info" person, i will feel better after hearing from others.

Many thanks.

[Buzzm1]

his PCR went up right away to .03 and then 1.2.  

Gratefulwife, was this increase over the span of two quarterly PCR readings?  Thanks for the info.

 

PS. a 2 X 200mg Tasigna dosage (66% of full dosage) is essentially the same as a Sprycel 70mg dosage (70% of full dosage)

[Gratefulwife]

When you are in first year of TFR they do monthly PCR's.  So first month off meds was still .000, 2nd month .03, 3rd month .12.

It was a steep curve.  Many others on TFR bounce around a bit, but once going over .1 the clinical trials require back to meds and therefore the supervising CML specialist outside clinical trial requires same.  He doesn't want to fool around at this point, especially considering how quickly his PCR rose.

and yes, i realize that 70% is a slightly reduced starting dosage, but apparently onc felt comfortable with this to get him back to MMR, which is his most important goal.  

While i am seeking info about pleural effusion and other side effects with Sprycel, i hope this also gives others info about various TFR attempt journeys.

[Buzzm1]

When you are in first year of TFR they do monthly PCR's.  So first month off meds was still .000, 2nd month .03, 3rd month .12.

It was a steep curve.  Many others on TFR bounce around a bit, but once going over .1 the clinical trials require back to meds and therefore the supervising CML specialist outside clinical trial requires same.  He doesn't want to fool around at this point, especially considering how quickly his PCR rose.

and yes, i realize that 70% is a slightly reduced starting dosage, but apparently onc felt comfortable with this to get him back to MMR, which is his most important goal.  

While i am seeking info about pleural effusion and other side effects with Sprycel, i hope this also gives others info about various TFR attempt journeys.

Gtratefulwife, since your husband tolerated Tasigna 2 X 200mg very well, and that dose is essentially the same as Sprycel 70mg, why switch to an unknown?  Side-effects of TKI's are more pronounced in the aged. 

you didn't mention that he was in a trial; if not, PCR's can still be done quarterly during TFR.

[Gratefulwife]

He was outside a trial and standard was still monthly PCR's for first year on TFR.  We went back and forth with CML specialist about Tasigna vs Sprycel for exactly the issue you raised.  However, new evidence shows a high incidence of vascular occlusive events on Tasigna that scare my husband -- and the onc -- more than pleural effusions, which onc described as "reversible" whereas some vascular events may not be, eg stroke, heart attack, etc.   Also, onc indicated if side effect profile is worse on sprycel, he can always go back on tasigna.  Onc wasn't concerned about changing meds....again.  Gleevec was ruled out as alternative because my husband has GIRD and i guess gleevec doesn't work well with that, with so many GI side effects.  At the end of the day we were left with:  "pick your poison."  If Sprycel is his "poison of choice" i want to hear from others how best to avoid the worst of the side effects and other input.

And like I said, hope this info about his journey may also help others.

[kat73]

I have had two pleural effusions on Sprycel, after about the two year mark.  Neither one gave me any symptoms and they both were discovered by accident (chest x-rays for unrelated purposes).  No treatment was proposed - shrugged shoulders all around.  For all I know I've got one now!  So, as with anything, there appears to be a range.  Some people here have gotten notable symptoms and have had the fluid drained.  But you asked for individual experiences for your info-gathering, so this is mine.  I switched to Sprycel because Gleevec, although working for me, made me miserable with puffy eyes (unrecognizable!), malaise, fatigue, depression and anxiety.  Sprycel instantly cut those things at least in half, especially the eyes.  And, as Tasigna seems to do, it jogged my numbers downward fairly rapidly.  I'm "elderly" too, like your husband - 65 - and have been at this since 2009.  For about four years, I've been bouncing around MMR3.5 to 4. Oh, and I have been taking 70 mg almost from the beginning of my Sprycel years, because of myelosuppression.  When we reduced from 100 to 70 those numbers all got steadily better.  I never got the Sprycel headache.  I did get some skin rashes, but they weren't too bad and they ended. Hope this helps. 

[Gratefulwife]

I have had two pleural effusions on Sprycel, after about the two year mark.  Neither one gave me any symptoms and they both were discovered by accident (chest x-rays for unrelated purposes).  No treatment was proposed - shrugged shoulders all around.  For all I know I've got one now!  So, as with anything, there appears to be a range.  Some people here have gotten notable symptoms and have had the fluid drained.  But you asked for individual experiences for your info-gathering, so this is mine.  I switched to Sprycel because Gleevec, although working for me, made me miserable with puffy eyes (unrecognizable!), malaise, fatigue, depression and anxiety.  Sprycel instantly cut those things at least in half, especially the eyes.  And, as Tasigna seems to do, it jogged my numbers downward fairly rapidly.  I'm "elderly" too, like your husband - 65 - and have been at this since 2009.  For about four years, I've been bouncing around MMR3.5 to 4. Oh, and I have been taking 70 mg almost from the beginning of my Sprycel years, because of myelosuppression.  When we reduced from 100 to 70 those numbers all got steadily better.  I never got the Sprycel headache.  I did get some skin rashes, but they weren't too bad and they ended. Hope this helps. 

Kat, thank you SO much.  This is exactly the kind of experience i was hoping to hear.  Like i said, I had read so many horror stories that it made it sound like the majority of people on sprycel were constantly having pleural effusions drained...or worse.  This is so appreciated and gives me hope, even though always knowing "your mileage may vary."  Crossing fingers for everyone.

[Synapse]

I have been on Sprycel for 2.5 years now. I have not developed a pleural effusion; I know this bc I just had a chest CT. I am 38. There is a chance I am developing pulmonary artery hypertension from it though. An echo in a week will help us figure that out.

[Gratefulwife]

I have been on Sprycel for 2.5 years now. I have not developed a pleural effusion; I know this bc I just had a chest CT. I am 38. There is a chance I am developing pulmonary artery hypertension from it though. An echo in a week will help us figure that out.

I really hope you are not getting PAH.  I had seen that as a possible side effect as well.  Synapse, did you get the Chest CT on a prophylactic basis or because there were concerning symptoms?  I am trying to figure out if there is any monitoring my husband should be doing relative to issues like PAH and pleural effusions.  Given his age, better to catch anything before it turns into something more.  This is such a "pick your poison" crap shoot.  He is not returning to Tasigna because of fear of vascular events, and now will have to worry (I'm the worrier, actually) about these pulmonary issues.  Please report back and good luck.

[Trey]

The literature suggests maybe 25% get pleural effusion at some time during Sprycel treatment.  No hard data on that, just what seems to occur.  I would have restarted on 50mg Sprycel, not 70mg since he had a good previous response.  PE is a matter of "take enough dosage and you will get it", so lower dosage is better.  Fast return to PCRU might seem to be a great idea, but for someone who had a very good response at one point the odds of acceleration would be slim.  So that would suggest a "no hurry" approach for someone who is his age with other issues.  But I just look at things logically.  Oncs do not.

[mlk210]

I was on 100mg Sprycel for 16 months before I got my first plural effusion. For me, it crept up slowly. I remember having to run my kids to catch the bus and not being able to catch my breath once we got there. i went to my routine onc appt that week and they heard no restriction in my lungs so we chalked it up to anemia and me being out of shape. For the  next month, I felt it getting worse, but I don't work out regularly and I thought I was really out of shape. Finally, I felt it while sleeping, my breathing harder when I laid on my side. I started to have to take a break at the top of the stairs before continuing down the hall (just average second story stairs). I had no pain while breathing and I think when I finally went to the ER the doctor thought I was crazy because my oxygen was still reading at 99 when I was at rest. BUT when I would walk I couldn't take a deep enough breath. They took me off the medicine until it cleared up. They tried to lower me to 70 but I got another PE (honestly, I don't think they let the original PE clear enough). I ended up switching drugs because I have seven year old twins that I need to cart around. haha. I never had my PE's drained though, just drug break and they slowly decreased. Your husband will know if he's developing one. I used to think I was during the prior months, but once I actually did develop a PE, I knew I had one.

 

 

There are many people on Sprycel that haven't had a PE. One lady in my local group has been on it for 3 years and no problems at all. I did have the headaches for the first 10 days, but they passed and then I was good to go. 

[hannibellemo]

Gratefully,

I developed severe liver toxicity on Gleevec after 9 months and pleural effusion on Sprycel after 2.5 years. It was so small when I had my first x-ray that I didn't immediately stop Sprycel. That was a mistake; within a couple of weeks it had grown considerably and I did have a thoracentesis to drain. After steroids and nearly 9 weeks off Sprycel it resolved. I restarted Sprycel at 50 mg. And regained MMR in 8 months (that was in 2012) and have been bouncing in and out of PCRU for 1 year. I still have occasional bouts of shortness of breath with nothing showing up on x-ray, I'm having one now. I'm reluctant to switch to Tasigna because I don't want to have to deal with a whole new set of side effects. Nothing so far has shown up on echos to indicate PAH. I would like to reduce my dose further. My goal is the least amount of TKI to do the job.

I see no reason not to start Sprycel at 50 mg. given your husband's history.

There does seem to be anecdotal evidence of shortness of breath with no etiology with some of us here and I'd like to explore that further in a new topic.

I'll be 65 this month BTW. Good luck to you and your husband!

[cleocans]

I have been on Sprycel 100mg for 5 years now, no pleural effusions. (knock on wood!)

[Gratefulwife]

The literature suggests maybe 25% get pleural effusion at some time during Sprycel treatment.  No hard data on that, just what seems to occur.  I would have restarted on 50mg Sprycel, not 70mg since he had a good previous response.  PE is a matter of "take enough dosage and you will get it", so lower dosage is better.  Fast return to PCRU might seem to be a great idea, but for someone who had a very good response at one point the odds of acceleration would be slim.  So that would suggest a "no hurry" approach for someone who is his age with other issues.  But I just look at things logically.  Oncs do not.

Trey, first off, a big thanks for all your years of posts.  I have been reading them since hubby first dx in 2012.  The big question for CML specialist was:  do we start meds low and work up if we have to, or vice versa.  Unfortunately, his response was that he didn't feel comfortable starting low (even tho he knew pt is quick responder) because of possible proliferation of stronger cancer cells.  Now, i had JUST read your posts about there probably not being such thing as "resistance," but I knew my husband would not want me to challenge the onc on this point and I'm not knowledgeable enough to have challenged the specialist.  He feels his primary job is to get him back to MMR.  My hope is that he achieves PCRU quickly and we can discuss further reduction in meds.  BTW, i have read that in elderly pts the chances of pleural effusion can be up to 65%.  So appreciate your input.

[Gratefulwife]

To all of you who have shared your experiences, a big THANK YOU.  It is so helpful to have this info.  My husband doesn't want to hear about it, but i feel so much more comfortable knowing what to watch for.  I pray he doesn't get the Sprycel headache, of which he is -- at this point -- blissfully unaware.  At my urging, he called a pulmonologist friend and they discussed the pulmonary issues at length.  I am hoping that there is some prophylactic monitoring that can be done to avoid any progression of pulmonary problems.  We shall see.  My husband is a demon at the gym -- so i believe any shortness of breath issues will be apparent quickly.  

I feel like he had to "pick his poison."  He picked the higher chances of reversible, non-fatal side effects on Sprycel over the lower chances of an irreversible vascular event on Tasigna.  I am not sure he realizes (since he doesn't read the forums) how lucky he was to have virtually no quality of life side effects on Tasigna.  Maybe he will get "lucky" again.  In the meantime he is eating a grapefruit before the Sprycel arrives.  ;-) 

Another question:  Any input on time of day to take Sprycel?  I see there are no restrictions on eating, something else my husband is happy about -- not having to deal with the Tasigna regimen.  Any reason to take Sprycel at bedtime rather than with his other morning pills?

And, again, many thanks to those who spend time on this board helping others.  I am, indeed, grateful.

[tazdad08]

I was on Sprycel 100mg daily for a year. No pleural effusions or any other known damage from Sprycel. My sight did worsen.... may just be natures course for me. Nothing that contacts or glasses didnt fix. I switched to Tasigna hoping for less/different side effects. I had sharp random pains on Sprycel. Out of no where it would feel like some one jabbed a knife in random parts of my body.... may be my back, side, arm, finger, knee...lol.. but it was honestly that random. The pain would usually only last for a minute or two. I also experienced some really bad chemo brain for the first month or so. other than that I feel like most of the side effects are similar from both meds

[gerry]

One other side effect which can occur in 5% of people being treated with Sprycel is PAH. It is not always reversible - just be aware if it. One of our fellow forum members has wound up with it. http://www.cancerthe...article/434483/

[Gratefulwife]

One other side effect which can occur in 5% of people being treated with Sprycel is PAH. It is not always reversible - just be aware if it. One of our fellow forum members has wound up with it. http://www.cancerthe...article/434483/

thanks so much for this.  I had heard of PAH as a side effect but didn't realize it was as high as 5 %.  Oy vay.

[kat73]

Can you have PAH without knowing it?  Can you have it without shortness of breath being a complaint? What info is on an EKG that would spot it/rule it out?

[Gratefulwife]

Can you have PAH without knowing it?  Can you have it without shortness of breath being a complaint? What info is on an EKG that would spot it/rule it out?

Kat, the article provided by Gerry has a lot of useful info.  My husband checked with a pulmonologist who suggested he have an echocardiogram prior to beginning on Sprycel and then work out a monitoring schedule.  He happens to have had an echocardiogram with his stress test through his cardiologist last month.  I know the pulmonologist was able to give him a lot of useful info about this as a potential side effect.  Perhaps someone else with more knowledge will chime in or sounds like something to talk to your doctor about.  Because of our experience worrying about the possible vascular side effects on Tasigna and bringing a list to the cardiologist to discuss, my guess is my husband will do the same thing with Sprycel -- bring a list to the cardiologist and pulmonologist and let them decide what monitoring/evaluation he needs.