Does anyone have any experience with Sprycel and pleural effusions? I was dx with this condition 2 wks ago by xrays at my famly.drs. He put me on diuretics and did an echo for CHF which I don't have. The diuretics were not helping much. I saw my onc 2 dys ago for a scheduled BMB, which he didn't do as he didn't like the specimen trays in stock. This is the 2nd time he cancelled a BMB. I have not had a BMB since dx in June 09. Isn't this strange? (He switched me from Gleevec to Sprycel in Jan of 2011, because of my complaints of the side effects. I have been much better on Sprycel until now.) Anyway he prescribed prednisone, drew blood for a PCR which he said was just as good as a BMB, and took me off Sprycel. I'm not going back for 3 wks. Isn't this overlong to be off any cancer meds? I'm very worried this may give the cancer a chance to grow or to mutate. Is this an unreasonable idea? In the last almost 3 yrs I have reached a better than 2 log reduction, but not at 3 yet. I'm thinking of only staying off the Sprycel for only a week and then going back on it again because of my fear of losing ground. What is worse, losing ground on the cancer or getting the pleural effusions back? I hate to say it, but I'm losing confidence in my onc. If anyone can give a referral to someone in the Bradenton FL area, I would love to get a 2nd opinion. I need a dr. I can communicate with.
Get a second opinion. I would not start taking the drug again until you have a better idea on the PE. A PE can be very dangerous. You do not have Acute Leukemia, so the idea that the cancer will spread like wildfire is very unlikely. CML usually takes a few years to develop into an accelerated phase. You certainly don't want that, but a few weeks off Sprycel should not be a big deal. The fact you have not achieved MMR in 3 years is not ideal but I am very suspect of PCR's in general and even more so in a doctor's ability to relay the information to their patients correctly. Have you achieved a complete Cytogenetic response? This would have been determined by a FISH test and it should have come back with 0 PH+ cells found. It would be in your best interest to see a CML specialist and get things level set.
I totally agree with Lucky, you have to deal with your PE soon, and probably to get a second opinion. In any case with the level of response you reached 3 weeks off meds is no problem
Just one thing for the next weeks : a suggestion would be to re-start sprycel with a lower dosage to prevent PE.
Good luck with that and let us know how it goes
I am currently dealing with PEs and Sprycel. I have been off Sprycel since March 14 and although I would like to go back on ASAP I am more concerned that the PEs fully resolve. My doctor is not at all concerned at this point.
What amount of Sprycel were you on per day? I was on 100 mg. and I will start back on 50 mg. I did not stop my Sprycel as soon as the PE was discovered on Feb. 27, that was a mistake, and within 2 weeks it had gone from very small to moderate on the right and I had developed a small one on the left. I also had an echocardiogram that showed a small pericardial effusion, too, but that seems to be par for the course with PEs. I went through a steriod pak but it wasn't enough to do much, but I think it may have kept fluid from reaccumulating after I underwent thorocenteses (see below).
The following week I underwent a thorocenteses to remove over a litre of fluid from the pleural cavity. While the amount of fluid did not increase it didn't reduce either until I went through a course of 40 mg. of predisone/day over 5 days, tapering off to 20 mg. for 2 days and 10 mg. for 2 days. I am much improved at this point and will have an x-ray on Wednesday to see where I am. There is not a lot said in the literature about when to restart so I am inclined to be very conservative and wait until it is fully resolved. Some people redevelop the PE no matter what dose they are on so I am keeping my fingers crossed. If I were you I would definitely discuss restarting at a a lower dosage than you were on. Many people do very well on lower doses of Sprycel so that doesn't concern me either.
The majority of your PCRs over the course of this disease will be done on peripheral blood and not BMBs. Once you are CCyR or MMR the need for BMBs is pretty much nil. PCRs are a double edged sword - they make us nuts waiting for the results and they are easily messed up. However, they are all we have at this point to measure our response once we reach CCyR.
Good luck, let me know how you do.
Pat, You have definitely have made me feel better. I was afraid to be off meds for a few days, never mind a few weeks. Neither one of my drs wanted to risk a thoracentsis even tho I wanted it done. My son who is an ultrasound tech found about a liter of fluid on each lung. Its been 3 weeks and its only about 1/3 gone on 1 side. My onc says it could be another month before it resolves. I was on the same treatment as you, but no great improvement. I'm really happy to hear that I could go to a lower dose as I'm not anxious to go to Tasigna since I had such a bad time on Gleevec. Thanks for your reply. I'll be anxious to hear how you do. Headi
You PE involvement was much worse than mine, I can't believe they wouldn't do a thorocenteses for you! I felt very bad with just the one lung involvement, I can't imagine two.
Nothing new to report except that my pleural effusion is very small at this point. I go in for blood work and PCR this Tuesday and an x-ray and meeting with my doc on Friday. Have the 50 mg. all ready to go and I will push to start again whether the PE is totally resolved or not. I've been asymptomatic for at least 2-3 weeks.
God luck to us both!
Glad to hear you're doing better with the PE. I'm feeling better also, I can actually bend over now without coughing my brains out. Had to go off the Lasix and on potassium, because lab showed low potassium so its slow going. Like you I'm nervous not being on any cancer meds. When I spoke with my onc about lower dose he was quite OK with me trying that if I want to, but he's not very confident that I won't get the PE back. It doesn't sound good that Teres is slowly getting the fluid back now that shes back on a lower dose of Sprycel. I understand that shes in a study and can't change drugs, but what about you? Has your onc suggested Tasigna? How do you feel about a trial with it? My onc is suggesting it for me if theres no q-t problem after my potassium comes up. The q-t problem scares me more than the PE, at least you have time to recover from PE, not so if you have a q-t prolongation. In some of Trey's posts I get the idea he feels its over hyped. I hope thats so. I would like to hear from others who have been on Tasigna and how they're doing. Hope all goes well with with your doc on Fri.
I'm taking dyazide which is a potassium sparing diuretic, you may want to suggest it to your onc as Dr. Druker recommends it because of that property. It is a combination of two drugs whose names I can't remember. I'm taking it for mild hypertension.
I'm aware that there is a chance the PE will return at any dose, but my docs want to give me this chance because Sprycel has worked well for me and they know I went through a tough time with it at the beginning. Tasigna will always be there if I need it.
The thinking is that the QT prolongation issue is not really an issue unless you have it before you start Tasigna - since you do, you're doing the right thing being cautious.
Glad you are doing better. Keep me posted!
I have had CML a little over a year now. First Tasigna - had to get off due to liver issue.......Sprycel, almost made it to a year.......have pleural effusion - left lung full, right filling - Dr. took me off med starting tonight. I guess from everything I read here its a hit and miss with these drugs........the side effects are a roller coaster.
I really do not want to move to a 3rd drug - its like I just settle in and Bam....
I was on Sprycel and diagnosed with a serius pleural effusion in January. My doctor decided to switch me to Tasigna, but I did not start
taking it until I was off Sprycel 4 weeks and the PE was largely gone. I had to take a low dosage of prednisone and lasix during
that time as well to clear the PE.
I have been on Tasigna for 6 weeks with some new side effects but they are gradually coming under control.
I have had cml for 5 years, I was on Gleevac, but I couldn't handle the gi issues,which I had previously to dx. I took G for 3 years, then my onc switched me to Sprycel,but it was 5 weeks from stopping G to starting S.
I also take lasix. And I am zero, so It wouldn't hurt to get a second opinion especially with pe. Take Care Billie
I was diagnosed March 2005 and started on Gleevec. I wasn't responding after one year and my onc switched me to Sprycel. I did very well at first and was seeing some improvements (2 1/2 years) but starting having heart palpatations and then PE. She switched me to Tasigna which I have been on for over three years and have seen big improvements in my PCR with little or no side effects. I did have headaches at first but now all I have is mild bone and muscle aches which I can definitely live with considering all the other sides effects. I do think you should get a second opinion just to be on the safe side and it's important to have confidence in your oncologist!!
I just went back to read some post on Tasigna and found yours again. Thanks for telling your experience with it. I may be going on it in a couple of weeks after the PE is cleared up and some q-t issues resolved. As I told Pam, I'm nervous about it, so its good to see how others have done.Thanks again for your response.
I started on Sprycell and had massive PE after only a month. I started a 100mg and stopped when the PE started. I was off Sprycell for three months before my counts started climbing again. Im back on a 40mg dose and hope things will turn out better. This was after getting that second opinion, and my new onc. is a wealth of knowledge. Sorry but he's in Oregon at OHSU where Gleevec was developed. Best of luck.
Thank you and everyone else who answered my question on Sprycel and (I will call it) PE. I'm so sorry it took so long to get back to you all. Have been on family trip the Smokies with no wifi available. I'v been off S for 3 weeks now and on Lasix and Prednisone, the same dosage as Hannabellimo. Sent to cardiologist today to see if any negative heart problems to prevent me from going on Tasigna. He found a slight q-t prolongation, but suspects its because I wasn't given potassium and magnesium with the Lasix as my heart looked OK on previous ekg's. So off I was sent to check blood chemistry profile. BUT I'm so excited that so many have said that they are on a lower dose of S and doing fine. Just as all this was happening I had a PCR result that showed no BCR/ABL detected. WOW that is a 1st and I think that is a good thing. I see my onc tomorrow so I'll find out and will surely tell him about how many are doing well on lower doses of S. I would go to your onc if I was in Oregon, but just to let everyone know, I found a great new onc who actually sits and talks with me and has had experience with CML, But none of his pts has had PE from the S. He'll learn new things from me and from what all my friends here are sharing with me. He is planning on putting me on Tasigna if cardiologist approves, but I want to stay on S if possible, so I'm bringing all these experiences with me to see if he will agree to a lower dosage. Still have the PE though. How long does it take to resolve? How are you doing on the lower dose of S?
I hope everyone who responded to my question sees this post. I thank you all Headi
I was on 100 mg Sprycel and after a year of coughing I developed PE. My Pulmy Dr. Tapped my lung and removed 900 cc. It felt so much better. I am on a protocol study for Sprycel at MD Anderson Cancer Center in Houston. They took me off of Sprycel for just 2 weeks. I started back at 80 mg, and was told that this was the lowest allowed. I take fluid pills and get chest X-rays every 6 weeks. Oh and 5 mg steroids everyday. The fluid is coming back slowly. It's wait and see now
I started back at 80 mg, and was told that this was the lowest allowed. I take fluid pills and get chest X-rays every 6 weeks. Oh and 5 mg steroids everyday. The fluid is coming back slowly. It's wait and see
Regarding 80 mg allowed is that because you are on a study? If the study is not working for you, can you quit the study or do you need it to get the TKI?
I was just thinking Scuba takes 20mg and he goes to Dr Cortes of MdAnderson.
I think that because I'm on the study then I'm not allowed to go below 80mg. My Dr. Is OBrien at MD. I'd hate to get taken off of the program because Sprycel on my insurance is $8000.00 per month. It's free while I'm on the study for 3 to 5 years. Gleevac is only $400 on my insurance but I don't like reading about all of the GI side effects. I'll stick with Sprycel as long as I can :)
You said your Dr. is at Md Anderson Houston Tx, and you are in a study. I would assume the study would also be at Md Anderson. I noticed you live in another state. I was just wondering how that works out living in another state and your doc & study being from MdAnderson Houston Tx?
Update from me, my last X-ray in August showed 300 cc in right lung. Coughing is bad so I'm sure it's over 900cc now. Having X-ray in November. I was told by my Dr. That they will not keep me on Sprycel if the PE continues. I'm just really worried about which drug I'd go on from here. I've had such a good response to Sprycel except for rash and PE. Fingers crossed
Know this an old post, but... Teresa, I am also in dasatanib study at MDA with O'Brien. Just dx with pleural effusion. Seeing pulmonologist tomorrow. One of my biggest concerns is being able to stay in the study to receive my meds as I am self-insured with very little RX coverage. What was the outcome of your experience with the PE and ability to stay in the trial?
Am I to understand they told you that if your dosage was decreased lower than 80mg you would no longer be eligible for the trial? What dosage/meds Re you on today?
Thx for your help (and anyone else's).
(Diagnosed 2/10, PCU)
I was allowed to go on 40 mg. Sprycel and stay in the program. I'm doing much better on 40. I am also on 5 mg. predisone everyday to the lung issues. Although the study says no steriods, my Pulmonologist asked MD that I be allowed to stay on it. I take a daily fluid pill and Advair. I haven't had to have any fluid removed since Oct. 2012. Just tell Brenda (protocal nurse) that you really need to stay on the program. I know that I would not want to start over with another TKI! I was also DX 2/10! My next visit is August 19th. No BMA this time......yay!
Thx so much for your reply. This is my first and only pleural effusion and I was surprised it happened after 3+ years. How long after your diagnosis was your first PE?
What were the circumstances that they took you from 80 mg to 40 mg?
After speaking with MDA today, I have stopped dasatanib and am to call them back Friday. They think my shortness of breath and cough will subside and, without the dasatanib, the effusion will diminish which is interesting since my GP treated it as needing immediate attention and the oncologist on call in Dallas told me to continue my dasatinib through the weekend and see a pulmonologist. I am going with MDA's recommendation although any exertion makes me sound like I've just run a marathon.
Good luck August 19; know the wonderful feeling of no BMA. And thanks for your input. Karen
My first PE was 1 yr. after DX. I told you yesterday that it was 2010 but it was 2/2011. I had 2 lung taps in 2012. I too was taken of dasatanib for 2 weeks each time this happened. But I had to much fluid and it had to be drained. It's not a pleasant procedure but I felt so much better after it. MD dropped me to 40 after the second lung tap. I had gotten to the point that I could not walk and talk without coughing. Plus I coughed 24/7. I was drowning. That gets old! And embarrassing. It was actually the main cause that stopped me from working. I'm a Realtor and it made it impossible to carry on conversations. I hope yours resolves it's self. I do know that it is dangerous to walk around with to much fluid in your lungs. Infection being a huge concern. Do you know what your white blood count is?
I'm glad to hear you are doing better! I wanted to point out, especially for new people who may read this, that a pleural effusion is NOT fluid "in" the lungs, it is fluid "around" the lungs in the pleural cavity, the space between the lung and tissue, the pleura, surrounding the lungs. This fluid does not allow your lung(s) to fully expand, hence the shortness of breath. The fluid actually pushes the lungs up, sort of like an accordian. Actual fluid in the lungs is much more dangerous and is called pulmonary edema. PE actually medically refers to pulmonary embolism - blood clot in the lungs - extremely dangerous. But here on this site PE refers commonly to pleural effusion.
Interestingly enough, there appeared to be several pleural effusions developing around the 2.5 years point. Evidently, there is no point where we are safe from them and it is not only Sprycel that causes them, any of the TKIs can, it's just that we hear about it more from Sprycel.
Very likely, with the cessation of Sprycel your PE will resolve but don't expect it to be immediate. The average time off is 7 weeks so don't get impatient. I've been on 50mg. for 18 months and so far, so good.
Good luck to you!
Teresa and Pat, after reading your posts, I pressed a little harder with the research nurse ... Shouldn't I be doing something to facilitate dissipation of the effusion. After talking to the dr., their reply was I CAN take a 7-day prednisone pack. I responded SHOULD or CAN. She replied...your choice.
My effusion is described as large, only on right lung. My inclination is to wait and see if it goes away on its own, but... Teresa's and Pat's experiences are helpful to me. Are there others out there who have left the effusion untreated (other than stopping meds) and had success with its dissipation? And how long did that take?
After three years of being told never to miss a dose, I am surprised at the lack of concern Houston has with stopping it entirely and just wait and see. I'm hoping it is because this has become "old hat" to them.
I appreciate any other shared experiences.
(I am in trial 100mg sprycel as first line of defense at MD Anderson in Houston. Diagnosed 2/10. Complete response within 1 year. Sustained remission)
It sounds like you have had some bad experiences. I'm sorry to hear you're not on anything anymore, though. You may have 5 years, but they won't be pleasant. Have you talked to anyone about reducing your Sprycel dosage to 50 mg. and see how that works for you? After 15 months at that dose I'm back to MMR and no recurrence.
Also, there is a reason they don't remove all the fluid. There is a very real danger your lung could collapse if they did that. Generally, they only take 1 or 1+ litres. While I don't think you were given very good treatment for your pleural effusion, there has to be a better response then totally stopping treatment.
Many people say their pleural effusions dissapate within 3 months after stopping their TKI depending on the severity. I was off for 9 weeks. I found that steroids helped the most, there are some researchers who believe that pleural effusions are an autoimmune response to Sprycel and not just fluid retention, I know diuretics did nothing for me.
Good luck, and please talk to someone about a dosage reduction or a totally different TKI.
Been there done it twice...http://www.webmd.com/lung/thoracentesis Not fun I was literally drowning as 1/3 of my left lung was crushed from all the fluid. I had to sleep up right with 3 pillows behind me. I felt like I was 90 at age 59. I walked on the Beach with my sister down from Ill. to Fl., thought I was going to die.
I couldn't bend past a kitchen counter or pain and coughing would get worse. I coughed almost from the start of taking Sprycel non stop !! My Dr. Oncologist didn't want me to go off the drug. A clue she was suppose to start me out on a smaller dose but 100 was given. She told my MD she wasn't happy with me because I took myself off the Sprycel, so I told my MD I wasn't happy with her either. I told her I wanted off 2 weeks earlier that it was causing all this. ( I get that they want results but at what cost)? My cost as all the appts. I went to and hospitals that had to drain off the fluid, X-rays blood tests, office visits, are all my money in co -pays. I went to a lung Dr at Shands that told me he could spray glue inside me to glue my lung to my wall or have a bag as my husband did to drain fluid? Hello!! I hadn't even been off the drug a month.. Sad to say I don't trust him anymore either. His choice he told me was the powder that glues your lung to the wall of your chest...Buyer beware with Drs. too...
I lost my husband last year and my mother too ,was diagnosed with this I am just exhausted with Drs ..... I fired her and got another Dr.
Well I will tell you if you don't get the fluid off your lungs get a new Dr. as your lung can shrivel up like an orange peel and stay that way if left too long. One Dr. assistant told me that and had me sent STAT to the hospital that used the machine on me. When you get it done, make sure you get it removed by hand pump not by a machine type pump as it will put your body in shock as it did me for taking it off too quickly and the guy was too impatient I am guessing. If you can imagine a shriveled balloon suddenly being blown up again after 2 months. God!! the pain..Yes and the nurse screwed up my fluid line ( they put it in in case they puncture your lung)so she stuck me 3 times ended up in my hand after she had dredged my arm a few min. !!. By the time I was done I could have been a sprinkler!! !lol
MY hand, my arm, my back. BTW he didn't remove it all either. Why?? To make me still suffer with fluid?? They do send it off to be tested. It was ok. But it all came back again. Imagine wearing an oldie ladies corset and you can hardly breath or move. You got it now?
No doctor gave me pain meds before hand, yes I fired the MD that set it up.. I had more fluid removed at Shands and they did it by a hand pump instead of electric one thank God!! No pain at all ( I had taken my nerve and pain med prior as well, I am not stupid.) After they tell me they didn't take it all and showed me the bag of fluid. I was pissed thinking am I not paying for you to take it all? More X-rays after that. It has dissipated and my blood is normal for the time being. Yes great news. I know but I know it will come back and the Shands Dr. wants me to go on Gleevec and get a BMB again before that or he wont treat me. H no I am still paying the bio lab off for the reading of the last one. We are not made of money and I refuse another BMB. Some Drs. says with the precise bld tests these days you don't need them anymore. I agree as it is my body they are putting through all the pain. I am tired of the nurses who cant take blood worth a darn and your paying them to hurt you.
I have fired more doctors this year for mistakes. I think they are all worried about $$$ and how Obama Care is going to hurt them. I have no trust at the moment in Drs.
I am not on any meds and feel great.
I know you will all tell me it wont last and I know it. I know I will only have 5 years at most as that is what the last Dr told me. But I don't have an expiration date on me.
Things need to change for e to go back on the drugs. I am not putting myself through all this again not yet anyway.
Maybe when doctors get it together and people are not so money grubbing. Maybe when I find a doctor I like and trust. Who knows.
Good luck I hope you have a great doctor.
Message was edited by: Beverly After the last drainage it dissipated within a week I would say. It's gone.
Message was edited by: Beverly Total time After stopping Sprycel for fluid is 7 weeks for me.
Message was edited by: Beverly No one ever put me on a diuretic or mentioned one.