34 replies to this topic

[Headi]

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.

[CallMeLucky]

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.

[tiouki]

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

Pierre

[hannibellemo]

Hi, Headi,

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

[chriskuo]

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.

[triciad]

Hi Headi-

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!!

Take care!

Tricia

[Zeppadave]

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.

[Headi]

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

[Headi]

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

[Teresabourgeois]

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

[hannibellemo]

Hi, 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!

Pat

[pamsouth]

Teresabourgeois wrote:
  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.

PamSouth

[Teresabourgeois]

Hey Pam,

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

[pamsouth]

Hi Teres

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?

PamSouth

[Teresabourgeois]

Pam, I live 2 hrs away from Houston in Lake Charles, LA.  The study is a MD in Houston.  I go there every three months for BMA.  I spend the day and  get three month supply of Sprcel each visit.  I that what your asking?

[Headi]

Hi Pat,

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.

Headi

[Headi]

Hi Tricia,

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.

Headi

[hannibellemo]

Hi Headi,

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!

Pat

[MDeRosia]

Hi Hannibellemo

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....