33 replies to this topic

[VickiW]

Hi everyone!

Haven't been on here for a long time so I hope I am doing this right.  Looking for all you CML gurus and your wisdom.  Used to be on here quite a bit but for those who don't remember me (Trey~I hope you are still out there) here is my background.  Dxd in march 07, started on Gleevec with all the fun side effects but otherwise had a good response then not so good, up the dose, good then not so good, etc. til failure in march 2010.  Switched to Sprycel.  Very slow but steady progress til finally PCRU last October.  One hiccup but been a big "0"  since december.

Ok so about the pericardial effusion.  Mild, irritating cough last summer.  Chest xray & echo.  All good.  December still cough, Onc not concerned.  March this year, cough my head off when I lay down, chest starting to feel tight, Onc listens to chest and heart and says nothing.  July 2, 2012 see Onc.  He says he can hear me breathing from across the room, duh.  Tells me about some patients now developing high blood pressure in the arteries in the lungs and sends me off for a more detailed echo.  Not that but Pericardial effusion with heart function @ 60%.  Puts me Furosemide.  Take for 3 days then 1-2x a week as needed.  First two weeks doing much better, from then on not so much til last Friday I call asking if ok that I take it more often, describe what's going on and they freak!  Take it NOW! I'm told, call you right back!  Calls back with appointment on Tuesday for Echo and Thursday with Cardiologist and if things get worse, don't try to get to us, (2 hours away) go to nearest ER.  This was all by the on-call Onc because the clinic only does chemo on Fridays (no appointments).  I pushed the echo to Tuesday so this could all be cleared by my Onc first on Monday (which it is).

My question;  First, should I have been taken off Sprycel? and second, do you think tasigna will work for me after already having had a failure on Gleevec?

any input will be greatly appreciated!

Vicki

[ChrisC]

Hi Vicki,

We've missed you!

Others will have to jump in with some knowledge related to your (scary!) health situation, as I don't know anything relevant.

But your situation is a definite concern, so please keep us informed as it unfolds: you will be front and center in our prayers.

Take care,

ChrisC

[Susan61]

HI Vicki:  Glad to see you posting again, but sorry for this problem your having.  I hope you talked to your Onclogist, and maybe he told you to see the Cardiologist first.  Either way, I hope you take care of this right away to find out what is going on.  Please let us know how you are, and what you have to do.

My Prayers are there for you also.

God Bless

Susan

[VickiW]

Thank you Chris!  I will post my results and progress.  By snooping around I have discovered this is a more common side effect of Sprycel then originally believed, especially in those that were on Gleevec first..

Thank you Susan!  yes, it was actually the on-call oncologist that scheduled the 2nd echo +Cardiologist but I checked with my Onc right away this morning and he agrees it is a good step.

thank you both for the prayers, they are greatly appreciated!!! 

[Trey]

You should definitely have stopped the Sprycel for a 2 week break as soon as the symptoms occurred.  Bad procedure.  Bad, bad, bad.  Very bad.  Bady-bad-bad.

Pericardial effusion is different from pleural effusion in that the fluid presses on both the heart and lungs instead of just the lung(s). 

Tasigna would probably work, but it is trial and error for any of the drugs.  See what a 2 week break does for you.

[VickiW]

thank you trey   I definitely plan to discuss this with the cardiologist since I will be seeing him first.  I trust your knowledge and you confirmed my own suspicions  after looking into (and discovering the probable source of) the pericardial effusion.  I'm not thrilled with a "wait and see" when my heart is already functioning at 60%.  Wasn't sure at first, but after a weekend of research I am very glad the on-call Onc was at least more proactive then my own.

[hannibellemo]

Hi, Vicki,

Sorry to hear you are going through so much right now. I would not wait for my doc to say it's OK to stop Sprycel, please do it now. These generally will not resolve on their own and from my own experience it just prolongs the resolution.

Did they say heart function or ejection fraction at 60%. Don't remember how old you are but 60% for ejection fraction isn't really that bad for those 50+.

Seriously, stop the Sprycel, I was off for 7 weeks, two cortison packs and one thoracentisis later. If I had taken a break when the PE was tiny it might have gone much better. I didn't stop for another two weeks. As Trey said, "Bad, bad, bad. Baddy, bad, bad."

Forgot to add that most everyone who has been on Sprycel for longer than a year was probably on Gleevec first so I'm not sure what that has to do with it.

Good luck!

Pat

[CallMeLucky]

You are pcru, your cml is under control, If it wer me, I would stop Sprycel until you can figure things out.  Also would not rely on cardiologist solely to assess this situation unless he has experience with other  cml patients on Sprycel.

Best of luck

[VickiW]

Morning all!

thank you all for your words of wisdom!  I am going this morning (roadtrip, whoopee) for the echo and plan to "pop in" at the cancer clinic (same hospital) and ask if I should drop the Sprycel for now.  Have no idea if this Cardiologist is up to speed on CML BUT, if not, I definitely plan to give him a crash course!  Already started printing off some of my findings.

Billie~  Hi! yep!  I could get the echo done closer to home (better insurance now) and even get a Cardiologist but hubby and I both prefer to keep everything in the same building (hospital) so I can be reasonably confident that they (or at least their nurses) are communicating, but I am going to make sure!

Hannibello~ Hi! they way I understood it (but the initial conversation was with a bit muddy) was that the heart function was @ 60%.  That is something else I intend to get clarification for today.  I figure if I am right there in their face I will get answers   Tho in the past this clinic, and my Onc, have been great.  My onc definitely missed it on this one for sure so I am wondering if I am the first one with pericardial effusion he has dealt with.  If so, I definitely plan to help him with his learning curve!

This is why after reading some other posts, I decided I needed to start a new thread (yes, I have been lurking).  On others there seemed to be a lot of confusion between plueral effusion, pericardial effusion, fluid in the lungs, etc.  I knew if I got specific, you knowledgeable folks would come to my rescue!!!!! 

Got to get busy, s-l-o-w-l-y now, hehehe, and get ready for the 2 hour ride. My head is in a much better place this morning by the way.  Now I have to go chase chickens!!!!  (no, I got the chickens after the symptoms started so no connection~thought I would add that for you city folks )

TTFN!

[VickiW]

Forgot to add this~there were two studies done concurrently.  One with those started on Sprycel, the other with those who had started on another drug and switched.  the second having a much larger study participation of course.  Anyway, the percentages of the occurrence of pericardial effusion were higher in the second group.

[hannibellemo]

Thanks for the clarification. Since Sprycel was only approved in early 2011 for first line use I can see why the first group was small. I guess I still question the validity because I, for one, didn't develop pleural effusion with a small pericardial effusion until almost 2 1/2 years in. The majority of the first group can only have been using Sprycel as first line for 18 mos. or less at this point in time. I am more curious to know what was the average time frame for all users of Sprycel who developed PE? Did it take longer for those on Gleevec first to develop a PE than those who didn't use Gleevec first? Maybe the correct question wasn't asked, maybe Gleevec is a protective factor? Now I understand how "studies" are born!  

Oh my, it's too early in the morning for this - I got up with your chickens! Hope all went well for you, anxious to hear what you learned.

Pat

[scuba]

"You are pcru, your cml is under control, If it wer me, I would stop Sprycel until you can figure things out.  Also would not rely on cardiologist solely to assess this situation unless he has experience with other  cml patients on Sprycel.", wrote Gary

Ditto, writes Scuba

[VickiW]

Morning Pat!

just got in from tending the chickens .  Ok, here we go (hope I've had enough coffee!)  My timing is EXACTLY like yours, sort of.  Yesterday it was caught by the echo tech (clarify later) the I have a large pleural effusion as well.

Long story~went for my echo yesterday, stopping first to drop off a note with questions for my onc at the clinic like, "why am I still taking sprycel when---and should I stop?" and told the girls to please get this to him and I would stop back after my echo and pick up the answers. Up to the 3rd floor for the echo, figuring easy in and out (no meeting with cardiologist til thursday).  got on the table and we started.  halfway in she asks, "did you know you have fluid on your lungs?" I said no so she said "I'll finish with your heart and as long as we have you I think I'll check that out too, ok?".  When she finished she said, "I think I'll have you wait here for a few minutes while I have a chat with Dr. Patel (my onc) ok?  I think he needs to know about the fluid on your lungs and maybe---".  she comes back, "he would like to see you".  Down stairs we go.  (We are in Aurora Baycare Hospital).  I check in at the clinic, by this time huffing and puffing.  The nurse comes out and says, "the dr would like a chest xray before he sees you".  Back down the hallway we go.  Get the xray done pretty quickly and back to the clinic we go, by this time hubby threatening to hunt up a wheelchair and make me ride in it , sigh (cough cough).  We get back to the clinic, I lean on the desk, look the triage nurse in the eye, cock and eyebrow, and manage to choke out, "you do know you are making an old lady that can't breathe run all over the hospital, right?"  She starts to back up, so I let her off the hook with a laugh and tell her to let dr. Patel know I'm back.

Takes a bit (they are stuffing me in after all) nurse does his vitals thing (yep a cute male nurse with a good sense of humor ) and my onc comes in, laptop in hand, showing my xrays.  I love the way this facility is so connected, makes things so much easier!  Boy, my lungs were white!  (The echo tech did kind of warn me when she started telling me how she does lung draining too and how she does it, lovely).  Thankfully it doesn't look like I will need her services, at least yet. He's showing me on the screen, pointing to the first xray, which is supposed to be the clear one, using it to show me what my lungs should look like,  when he stops, gets this "oh s**t"  look on his face, and it's PRICELESS watching the lightbulb over his head go on! as I point to this very little,  but distinct, half moon of white at the bottom of my right lung.  He explains that was nothing at the time.  Then he carries on showing me my current lungs.He then proceeds to get this upset tone to his voice saying "nothing was mentioned on the last echo (on july 2nd) about fluid, just a small note at the bottom of the final report!  I knew he was talking about the preliminary report that had been given to me by the tech to take back to him.  In other words, the first tech totally missed it.  He immediately told he was putting me on Prednisone, stop the Sprycel and no furosemide unless I really REALLY need it.  So, big dose 3 pills) right away yesterday, 2 pills once a day for 3 days, then back to see him next Tuesday.  Faith restored in my Onc.  Oh, and by the way, the final report wasn't in yet, but the preliminary echo looked like there had been a slight reduction in the pericardial effusion.

Ok, HUGE HAPPY DANCE NOW, cough, cough.  Ok, maybe tomorrow.

[ChrisC]

Yooowwwwww!

Glad to hear that the situation is being dealt with (finally), and that instead of a procedure (drain the fluid) you can stop a pill and start a pill.

Rest well, feel better, mentally do a happy dance! we're right there with you!!

[CallMeLucky]

Glad they caught on to what is going on and are treating it appropriately.  Hope you are feeling better soon.

[VickiW]

thanks for all the well wishes and encouragement everyone! and one more huge hug to Trey and Hannabello 

On my 3rd dose of prednesone this evening and already doing much better.  Not 100% yet but I was able to actually go shopping and fight the crowd at Walmart without huffing and puffing.  Did start to get awful "jittery" but was warned about that and boy am I breaking out in sweats!  Good side effect, I've dropped 4 lbs in 2 days   I sure am thirsty tho.

Bad news is I don't have any excuses anymore so tomorrow I am going to have to get it in gear and clean out my chicken coop   I also have a huge pile of tomatoes waiting to be turned into salsa and spaghetti sauce and gardens full of other veggies that have been waiting for me to feel better.  Unlike many, even tho we have been breaking all kind of temp records for this far north, we have also been getting record rains so I have zucchinis the size of cricket bats!!!

[Susan61]

Hi Vicki:  You sound better already.  Worrying about your chicken coop and tomatoes.  You must be a  real hard working country girl.  Just do not overdo it until your lungs clear up..

Prayers that everything gets back on track for you

Susan

[VickiW]

thank you Susan! Lucky and Chris too!  First day off the Prednisone.  Took my last dose last night (for now).  Go back to my Onc on Tuesday.  Since he made out the rx for a lot more than I was told to take I am sure there is more to come, like when I am to start back on the Dasatinib.  Let everyone know what his next plan is.  I also plan to tell him there might be a pattern here someone needs to look into since there appears there were several others here on the board that hit the exact same problem at just about the exact same time into their Dasatinib treatment as I did.  My Onc is definitely in a position to pass this info along to help others as he is an active member/speaker/etc. in the LLS organization.  I'll be sure to pass on what he thinks.

Have a great weekend everyone!

Vicki