18 replies to this topic

[p.a.m.]

New to sprycel and would like to know how people who had pleural effusions felt before they were diagnosed and how long they were on the drug before the PE developed?  Also how did it affect blood work.  My wbc were always like 2.1-3.6 while on gleevec on rbc were also low.  Currently taking 100mg sprycel once daily.  i had taken 400mg gleevec 6.5 years never achieved remission.  Came close but numbers went up and down

[Marnie]

Hi, p.a.m.

I was on Gleevec 400 for about 3 years before switching to 100 mg Sprycel.  I was on Sprycel for a couple of years with very few side effects.  My PCR numbers, which had never been great and had plateaued on Gleevec, dropped immediately with Sprycel and I achieved PCRu after about 1.5 years on Sprycel (I think). 

I have just recovered from a pleural effusion, and am now taking 70 mg Sprycel.  They drained 1.6 liters of fluid from the lining of my lungs the day before Thanksgiving. 

I had suspected for months that I had a pleural effusion, because I could feel my breathing affected, mostly at night when I was in bed.  My oncologist couldn't hear anything wrong with my lungs, so I let it go for far too long.  It got to the point where I could hardly breathe, so I finally went to my gp, assuming I had pneumonia.  Long story short, it was finally correctly diagnosed and dealt with.

Despite the p.e. I'm glad to be on Sprycel.  It has been a far better TKI for me than Gleevec.  I just hope that the lower dosage works, and that I don't develop another p.e. 

Many people take 100 mg with no problem.  That said, if you have any indications that something is wrong with your breathing, I  would recommend that you get a chest x-ray and have a radiologist read it.  My gp didn't recognize the x-ray as a pleural effusion, so I wasted a week on antibiotics, treating  pneumonia, which I did not have. 

Good luck.  Sprycel is a very effective drug. 

Marnie

[Tedsey]

Awww man Marnie.  Sorry to hear that it was pe.  You would think it is the first thing docs think of when someone on Sprycel is complaining of breathing problems.  Brings up bad memories of my dx.  I can totally sympathize.  Hope you heal rapidly and this never happens again. 

p.a.m., Sprycel has been a better drug for me (I had many issues on Gleevec including severe anemia, but in retrospect, it was probably healing me, albeit more slowly--I think I will say the side-effects or "lack of tolerance" were doing me in--my switch to Sprycel was, "well, what the heck, it is worth a try--I might respond better."  I was so bad off anyway).  Nevertheless, you don't really know how good a drug is for you sometimes for months if not years.  I have some wheezing on Sprycel that I did not have on Gleevec, or ever.  My onc has actually heard it, but it comes and goes and I don't have issues with breathing (yet).  After plateauing on Gleevec and suffering from extreme anemia and pancytopenia, I had a better results on Sprycel.  I still have very low PLT, ANC and total WBC (but nothing dangerous anymore).  However, the anemia went away, (but I was slightly anemic for years after Sprycel).  I have been on Sprycel since August 31, 2010.  For some reason that date sticks in my head.  So far, so good.  My last two PCRs have been 0.  So, it took some years.

All the best,

Tedsey

[CML2012]

I have been on Sprycel since Sept 2013.  I was on Gleevec from Jan 2013 to Sept 2013.  I have been having tightness in my chest so I had my first echo cardiogram yesterday.  My RVSP is 30.  My oncologist has also ordered a chest xray. I know they are checking for pulmonary hypertension.  Any thought anyone?

[Marnie]

In your situation, I would be sure to request that a radiologist read the x-ray, and that he/she specifically look for signs of pleural effusion.  It's a known side effect of Sprycel. 

I'm debating if I should call my oncologist and request another chest x-ray.  I have recently restarted Sprycel after a pleural effusion, and I think the pleural effusion is building up again.  Bummer.

Good luck,

Marnie

[hannibellemo]

Hi, Marnie,

You may recall that I thought I was having a recurrence of the PE and it didn't actually happen - could be it was just anxiety (I don't ever want to experience that again, I don't think I have ever felt so rotten), could be my body just overcame it.

That said, you probably were not off Sprycel long enough for the PE to completely resolve. Your return to meds was the shortest turnaround in my experience. Did you even get an x-Ray before going back on? If it is back, hold out for 50mg. before resuming again. You're PCRU, you should be fine at the lower dosage. (Aren't you?)

Did I mention that no leg of my flight to Cabo crashed? I was, however, ready to jump in and fly the damn thing if necessary!   

Stay warm and hope all is well!

Pat

[Marnie]

Hi, Pat. . .

Thanks for the note.  I'm sure hoping it's not another (or a continuing) p.e., but my breathing, especially laying on my left side, is starting to feel much the same as it did with the p.e.  Once again, I find myself frustrated with myself and with my doc.

I had an x-ray before starting back on Sprycel.  It was read by a radiologist, and it still showed some fluid remaining in the lungs.  Clearly I shouldn't have started back on meds, but both my doc and I were a bit paranoid, because my last PCR showed detectible again after being PCRu. 

So now I'm getting a little depressed about the possibility of another p.e.  I do NOT want to switch to Tasigna.  The dosing schedule would be extremely difficult with my job. 

I have my next PCR test done in about 3 weeks, and so I'm very interested in seeing if my numbers continue to be low, or if they've risen with the lower dosage of Sprycel.  I'm thinking that I'll continue to monitor my breathing for a couple of weeks and if it worsens, call the doc about getting an x-ray before seeing him.  My onc appt is in early February. 

Hopefully the breathing issue is just my own paranoia, but my guess is we didn't handle the p.e. correctly last time.  I'm not sure how to balance the worry of low dosage causing the PCR numbers to rise, vs. the higher dose causing a p.e.  I do not want to get my chest drained every other month, and the cost of x-rays and hospital procedures isn't anything to sneeze at, either. 

I guess I shouldn't complain too much.  Things have gone pretty smoothly for me up until this last year.  Others are dealing with much worse things. 

How long were you off of meds after your p.e.  and did you see a change in PCR afterward?

Marnie

[LLawrence]

Marnie,

I have a crazy work schedule, but have been able to work the dosing of the Tasigna in. I carry my meds in my purse and have a cell phone alarm when it's time.  When I've had to eat too close to the dosage, no body parts have fallen off.  I hope you don't have to switch to Tasigna, but it is doable if you need to.  Here's hoping that you tolerate your Sprycel without further setbacks.

Leesa

[Marnie]

Hi, Leesa. . .my work issue is that I'm a teacher.  I don't want to be taking pills in front of my students.  Once retired, Tasigna would work.. . I would take them at 9:00 and 9:00, or something like that.  But my work schedule just doesn't give me a second of privacy during the day.

Hopefully dropping my Sprycel dosage down to 50 mg will do the trick.  My oncologist and I have some talking to do.  He's very conservative, and is adamantly against any sort of experimentation with dosages.  I'll feel better about things after my next blood test results.  If they are still good, then I won't worry so much about dropping down to 50 mg.

What side effects to you have from Tasigna?  I'm getting mighty tired of my Sprycel rash.  It went away completely when I was off meds for 9 days, but it came back as soon as I got back on meds.

Marnie

[LLawrence]

Marnie,

I understand why you don't want your pupils seeing you take meds; I can sneak into a bathroom and take mine. I was taking my first dose when my feet hit the ground (6am), then eating one hour later.  I had to change to 9:30/9:30 because I'd fall asleep after supper if I took it at 6 am and 5:00 pm.  I eventually went to 9:30/9:30 which works better for me.

Tasigna has been much better than Gleevec for me.  I had a lot of GI issues with the Gleevec as well as fatigue and bone pain.  Tasigna doesn't give me any GI problems.  Initially I felt great, but again developed nasty fatigue plus joint/tendon pain after about 4 months.  Decreasing my dose (with permission) has helped greatly without losing PCRU status (so far).  I've had none of the life threatening side effects (prolonged QT or pancreatitis) but most of the mild/annoying ones.  I have had some rash with Tasigna, but it doesn't itch or hurt.  It is much more prominent with sun so I wear a lot of hats and sunscreen....I like it outside.  I was worried about getting headaches, (I have migraines) but have not had problems with this from Tasigna.  Overall, not too bad. I would like to get to the lowest possible dosage long term.

Leesa

[Susan61]

Hi Marnie:  I am just reading everything you have been through.  I just have not kept up much lately with all the things going on.  Sorry you had a PE.  I hope you do well going back on it again.  I would love to reduce my dose of Gleevec with all the side effects or have even thought of switching at some point.  I would be afraid to take Sprycel due to problems I already have with COPD.  They probably would not let me have it anyhow.

I just keep hoping and praying that some miraculous drug comes along for all of us with no side effects, and can wipe out this darned CML once and for all.

Take Care

Susan

[hannibellemo]

Marnie,

I don't think that I will ever be able to be one of the lucky ones that gets to stop taking TKIs. After 9 weeks off Sprycel I not only lost my MMR, I damn near lost my CCyR. At 50 mg. it took me almost 15 months, but I did regain MMR. You know you may have just been hovering under the PCRU level and that is why you were detectible again. It might take you a little longer, but  you would hopefully be able to regain PCRU at a 50mg. dose.

Are you off meds right now? If not, you will find yourself right back where you were before, I'm afraid.   I was told that I still may experience PE at the 50 mg. level but I haven't so far and it will be two years next month (hope I haven't just jinxed myself). It was sort of a crap shoot but one I, and my docs, was willing to take; I really didn't want to switch to Tasigna!

Good luck as you make your decision.

Pat

[janekaye]

I haven't been on the boards for maybe a year after losing my husband in 2012. But logged on tonight for some reason. I was diagnosed 51/2 years ago, put on Gleevec which I couldn't tolerate. Went to MD Anderson in Houston to see Dr Cortes. He put me on Sprycel 50mg that day. My PCR has been o.ooo for about 3 years now. Minor issues with PE but take 80mg Lasix daily. So far, so good.  I am thankful every day. Also very watchful with my onc - still have blood drawn and office visits every 3 months. Periodic chest x-rays also.  This journey just goes on every day - it's nice to see some of the names I recognize from early in my diagnosis. We're doing it!!!!!

Jane

[Marnie]

My update:  the pleural effusion came back after about a month and a half (darn).  I've now been off Sprycel for 10 days.  Will stay off meds for a bit longer.  Bloodwork on Tuesday, so I'm anxious to see if my PCR counts have been affected.  Still feels like I have residual fluid in my lungs, but this time did not have to be drained. 

My onc is already talking about switching meds, but I'm interested in staying off the Sprycel a bit longer (provided the bloodwork isn't too alarming), and then start back on 50 mg Sprycel.  We'll see if my doc is open to that. 

His nurse and I had a bit of a misunderstanding on the phone.  She apparently wanted me to get back on meds.  What I heard sounded like stay off meds.  So both she and the doc were a bit surprised to discover I'd been off meds for a week.  After some phone discussion, they decided it was o.k. 

The best news is that my awful rash is almost gone.  The rash on my scalp cleared up immediately.  The hairline rash took longer and is mostly gone, though still a bit itchy.  The rash in the ears is more persistent, but definitely better than when I'm on Sprycel. 

So cross your fingers that this p.e. resolves quickly and that 50 mg is the magic number that keeps both the leukemia and the pleural effusion at bay. 

Marnie

[hannibellemo]

Marnie,

Sorry to hear it was definitely a return of the PE. At the risk of sounding like a broken record stay off the Sprycel until the PE is completely resolved. Don't panic about the numbers, the Sprycel will take care of them even at a reduced dose, although it may take longer. I'm wondering  if anyone on here has had to take longer breaks than I have; 9 weeks with the liver toxicity and almost 3 months with the PE. My cancer load was huge at diagnosis and (knock wood) I was still MMR at last check with reduced dose.

Fortunately, you understand your disease better than it appears your doc does (definitely his nurse). There should be no discussion about the need to stay off the drug - that is protocol for PE.

Good luck with the battle for the reduced dosage. There appear to be plenty of us on here for whom the reduction works.

Pat

[Marnie]

Pat, you are always good for my determination.

My doc's nurse is awesome.. .I didn't mean to make her sound like she didn't know what she was doing.  Communication with my doc is a bit of an issue because he is only at the center I go to once a week. . .the rest of his time he is at a different location. . .so I have to do a lot of communication through multiple nurses at multiple centers, depending on timing of stuff that happens.  Anyway. . the miscommunication was my fault, but I think it was for the better.  And Sierra, the nurse, was adamant about saying that I know my own body better than anyone, so my thoughts and ideas are very valid.  She does a fabulous job of being the "go-between" for me no matter where my doc is.  I do think that my onc is a bit taken-aback when he speaks with me, because I assume the typical patient just sits, listens, and does whatever they are told without ever asking questions or making suggestions.  I am far from that.

As I was driving home from work today, I found myself wavering about my determination to stay off meds for a longer period than I'm comfortable with (I spend far too much time having conversations in my head), and had sort of decided to go back on 50 mg the day after my blood test, next Tuesday.  I get really nervous after about 7 days off meds.  You are perhaps giving me the fortitude to stay off meds until I see my doc, two weeks later.  That will be a total of 5 weeks off meds.  Ahhh!  That's scary.  My breathing feels a lot better. . .but it's still not quite normal.  I think.  And then I second guess myself.  The x-ray looked to me like there was residual fluid.  But the damned radiologist wouldn't talk to me.  They never talk to real people, they will only talk to doctors.  I hate radiologists.  I do want to get this p.e. situation totally under control so I don't end up right where I am again.  I DO NOT want to switch to Tasigna. 

Your journey is really helpful to me.  It helps keep me focused on the importance of getting the pe resolved completely, and helps me keep the fear of rising PCR at bay.  I sure am glad that this situation is happening now, when I'm pretty comfortable with cml.  I think I'm fairly intelligent about how things work and making my own decisions.  Heck. . .I spent a few weeks having a lot of fun splitting my pills and weighing them on a powder scale for reloading bullets.  Crap.  I'm weird.

Marnie

[janekaye]

year fellowship with Dr. Cortes before coming to Annapolis, and he often speaks at MD Anderson for large groups of CML docs.  I suppose I am fortunate that I trust him so explicitly, but he has assured me that if he's ever in doubt, he will email Dr. Cortes immediately.

As I said I've been on 50 mg Sprycel for about 4 years now and have never had a chest x-ray that did not detect low-level pleural effusions, especially around one lung.  Thankfully, they've stayed at bay --- being short of breath is more than miserable.  It's life-altering.  I've had a little experience with it under other conditions.

I do agree with you that the rash I've experienced with Sprycel is unbelievable.  I have fought a hard battle looking for a solution for about 2 1/2 years now, but nothing totally works.  Recently, I was on a 10-day leveled dose of prednisone for another issue, and the rash TOTALLY disappeared in 48 hours!!!  It was heavenly; however, as soon as I started lowering the prednisone dose as prescribed, the rash came right back.  I've used otc lotions (Sarna) and prescription creams that are compounded by the druggist.  I now take the lowest dose of Zyrtec every day just to try to control the itching a little bit.  Will return to dermatologist next month and explore other options.

Take care and try not to stress about being off the Sprycel for a little while.  I wish you well - these are hard decisions.

JK

[Marnie]

Thanks, Janekaye. . .it's always so helpful to hear of people who are on lower-dosage Sprycel and doing well.  I was also interested to hear your comment about your x-rays showing low-level pleural effusion.  Maybe that's in my future. . .just a constant bit of fluid around the left lung.  My first p.e. was pretty awful.  I was almost to the point of not being able to breathe at all, and the x-ray showed my left lung almost completely white.  1.6 liters is a lot of fluid to be carrying around.

I am hopeful that 50 mg Sprycel will do the trick, and perhaps I'll always have a bit of trouble with the left lung filling, but hopefully not bad enough to impair my ability to do stuff.

I have been off meds for 12 days, I think.  Not sure if I'll be able to hold out until I see my doc on Feb 4. . .but I am determined to stay off at least a little while longer.  I guess if the pcr numbers rise significantly, I can always go back to 100 mg, and then get my lungs drained again.  I have no doubt that full dosage will put me right back at the hospital with a catheter in my back.

Thanks again,

Marnie

[hannibellemo]

Hi, janekaye,

It's so good to hear from you! I hope you are recovering from the death of your husband, I'm so sorry! You were such support for me when I had my PE having been through it and still dealing with low level effusions.

I'm glad you have found a way to continue your treatment. I agree with you that the inability to draw enough air is the most awful feeling. I really never, ever, want to experience that again.

Don't be a stranger!

Pat