39 replies to this topic

[mlk210]

I've been on 100mg of Sprycel since August 2014 (almost 17 months). Went to the ER today because of shortness of breath. I had convinced myself it was something else. My ankles weren't swollen, I didn't have a fever. I had been recovering from a cold so the cough wasn't unusual. But I couldn't even make a trip to the bathroom without feeling winded. 

 

Yep, PE in my right lung. I'm on a drug break until I see my oncologist on Thursday. I hate to second guess my oncologist, but should they have drained the fluid? Also, I don't want to change my tki. I have limited side effects on sprycel, but since I have had one PE, is it just a matter of time before I get another one?

 

I know I'm jumping the gun a little, but Im scared to what this means. In August I got undetectable, but in November I got detectable but below the level of quantification, so, I'm fairly sure the August test was wrong. 

 

[scuba]

I've been on 100mg of Sprycel since August 2014 (almost 17 months). Went to the ER today because of shortness of breath. I had convinced myself it was something else. My ankles weren't swollen, I didn't have a fever. I had been recovering from a cold so the cough wasn't unusual. But I couldn't even make a trip to the bathroom without feeling winded. 

 

Yep, PE in my right lung. I'm on a drug break until I see my oncologist on Thursday. I hate to second guess my oncologist, but should they have drained the fluid? Also, I don't want to change my tki. I have limited side effects on sprycel, but since I have had one PE, is it just a matter of time before I get another one?

 

I know I'm jumping the gun a little, but Im scared to what this means. In August I got undetectable, but in November I got detectable but below the level of quantification, so, I'm fairly sure the August test was wrong. 

 

Cut your dose! More than anything else - as you are near or at "undetectable" - you don't need 100mg Sprycel forcing pleural effusions. Discuss with your doctor a dose reduction program. Consider going to 50mg or even 20mg as a maintenance "test" dose. He can test your PCR in one month to see if your PCR rises. Chances are your PCR doesn't rise. And then the good news is you would be on a new lower dose of Sprycel.

[mlk210]

Scuba,

 

I would love to lower my dose. I had brought it up to my onc in August and she wasn't very responsive saying I had no horrible side effects. I decided I'd wait until I had been undetectable for awhile before bringing it up again. Now I feel like I have more of a leg to stand on with really discussing it with her. I would much rather decrease my dose than move to another tki at this point. There will be another conversation on Thursday about it. 

[Marnie]

Hi, mlk. . .

 

It is important that you do not restart on Sprycel until the PE is completely resolved.  Only an x-ray read by a radiologist will be able to tell you that. 

 

Whether or not to drain the fluid depends on how much fluid there is.  An ultrasound will show that.  On my first PE they drained just under 2 liters of fluid.  That was bad.  The second one was about 1 liter.  I'm not sure where the cutoff is on draining vs. letting it resolve on its own.  I have heard of people who didn't have them drained taking water pills to help with the process.

 

I would encourage you to talk to your oncologist about reducing dosage. . .PE is a significant side effect.  It's not a huge deal to drain the fluid, except that every time you do it, you run the slight risk of introducing an infection in your chest cavity, which can be serious.  That said. . . the doc that drained mine (Dr. Schott. . .isn't that a great name for a guy with a needle??!) said that there are people with certain conditions who have PEs drained regularly. . . it's a safe procedure to do repeatedly.

 

A few years ago, my oncologist was pretty adamant about staying with the standard dose of Sprycel, but as new research and protocols are coming out, he has been willing to try lowered dose (I'm currently on 50 mg).  I'm slowly working my way back down to PCRu (last week I was at 0.0138. . .feels good to be back down).  On 50 mg, it has been a slow plod to get there.

 

But. . most importantly, in response to your post. . .before you restart Sprycel, you MUST be sure that the PE is completely resolved.  I was off meds for over a month after having mine drained.  If you restart too soon, the fluid will simply build back up.  Be sure a radiologist reads the x-ray.  Also. . .in addition, it's nice to actually have the pictures so that you know what a PE looks like.  I requested a copy of the x-rays, so the hospital put the pics on a disc.  My PCP had films which I checked out and took home.  I put them up in a window and took pics with my phone.  I'm probably more well-versed on what a PE looks like than my PCP and my oncologist.  Whenever I get an x-ray, I ask to see them.  Perhaps that's unusual, but the doc never says, "no."

 

Good luck, and I hope you can reduce dosage.  Also. . .if you do end up having the PE drained, it's not too painful, except when it gets toward the end of the process. . .or maybe mine was because my lung had partially collapsed.  Anyway. . .if it starts to hurt, tell them and they can turn the valve to stop the flow of fluid, give you some time to catch your breath, and then keep going.  Also. . .maybe I'm just weird. . .but I thought it was fun to actually watch the stuff drain out into the bottle(s).  Have them put the bottles where you can see them.  Unless it would gross you out. 

 

Marnie

[Trey]

Reduce dosage to at least 50mg or lower -- permanently.

[mlk210]

Thank you Marnie. When you were off for a month, how high did your pcr go? It scares me to be off the drugs. Personally, I would have preferred them to drain me as opposed to the waiting game (never have been good at patience). I guess I'll wait and see what my oncologist says. If she fights me on the lower dosage, I might have to look for another onc who is willing to work with me.

 

Also, maybe Trey knows this. With being off the medicine, am I more susceptible to getting a mutation since the leukemia isn't being controlled?

[chriskuo]

At your level, 4-6 weeks off Sprycel should not have a big impact on your PCR.

 

If 50mg still causes problems, consider bosutinib.  After I had PE at 100mg Sprycel and eventually 50mg, I switched to bosutinib and so far so good.

[kat73]

mlk - Please do get back to us and tell us what your oncologist said - I'm in much the same situation and my oncologist REALLY doesn't like reducing dosage unless there's a very compelling side effect.  I've had two moderate pleural effusions that were asymptomatic but showed up by chance on two chest x-rays.  Shrugs all around.  No biggie.  I'm a tad puzzled.  I'm sure if I said the magic words, "short of breath" everyone would sit up and take notice, but the truth is, I wouldn't know because I don't move much!  I avoid stairs, hills, carrying things, long walks, heat, cold.  I get SUPER tired.  But it feels like muscle weakness more than shortness of breath.  Anyway, I think next oncologist visit, I'm going to ask - what are his parameters for reducing Sprycel dose in the presence of two pleural effusions.  I've been on 70 mg for several years - (he was OK with going down to 70 because of low blood counts and my continued progress against the CML.)

 

I think your question about the mutation is a very good one - hope Trey answers.

[scuba]

Kat - what is your PCR level currently?

[kat73]

Scuba - This past October it was 0.05% IS.  It has been in that neighborhood  since 2012.  I had one undetectable this past July.

[rcase13]

They need to make these tests more accurate. PCRU to .05 would drive me completely insane.

[mlk210]

Kat - I'm meeting with my oncologist tomorrow I think the doctor thought I was crazy because when I was hooked up to the oxygen finger thingy (sorry, don't know medical term) it was 98. I've had shortness of breath occasionally since starting Sprycel but this was something worse. I have seven year old twins so I move around a lot. Sometimes never sitting down until the end of the day. I let it go on for a week thinking it might pass, chalking it up to a little edema. But it just got worse, unable to walk even to the bathroom without my breathing restricted.

 

How long were you off Sprycel for your PE's? How far apart did they occur?

[Trey]

Also, maybe Trey knows this. With being off the medicine, am I more susceptible to getting a mutation since the leukemia isn't being controlled?

 

No.  Your CML IS controlled.  PCRU and BLQ* are really the same thing. 

 

 

*Below the Level of Quantification

[kat73]

mlk - Nobody took me off the Sprycel for either one.  They were more than a year apart.

[mlk210]

kat - So the PE cleared up while you were on the medicine?

 

i just got back from my oncologist office and I'm off Sprycel until it clears up, which I figured. She said she'll lower me down to 70mg when I restart, but I'm going to ask her about the 50mg when the time comes. It's funny because I always wanted to not take my pill for a day, but now I'm scared not taking it. Does anyone know if when you restart do you get the side effects again. Like will I get those horrible headaches again?

[Marnie]

Thank you Marnie. When you were off for a month, how high did your pcr go? It scares me to be off the drugs. Personally, I would have preferred them to drain me as opposed to the waiting game (never have been good at patience). I guess I'll wait and see what my oncologist says. If she fights me on the lower dosage, I might have to look for another onc who is willing to work with me.

 

Also, maybe Trey knows this. With being off the medicine, am I more susceptible to getting a mutation since the leukemia isn't being controlled?

mlk. . .here is a snapshot of my  numbers while off TKIs.  Also in answer to a later question, I did have a very mild headache when I started back, but not bad enough that it was memorable. 

 

  
1/21/2014    0.0000    After 2 drug breaks (9 days and 15 days) - due to pleural effusion)
5/6/2014    detected    <.02
8/12/2014    0.0000    After 2 weeks off Sprycel, followed by 2 more weeks off Sprycel (July 28 - ) 2 consecutive days with 50 mg mid-break
9/16/2014    0.1800    After 5 weeks off Sprycel
11/25/2014    0.1351    Back on 50 mg Sprycel
1/24/2015    0.0564    50 mg (60 mg occasionally [to use up 20s])
6/1/2015    0.0600    50 mg (100 mg occasionally)
9/9/2015    0.0333    50 mg
12/1/2015    0.0138    50 mg

 

It was definitely stressful being off meds.  I would occasionally get paranoid and take a pill.  Couldn't help myself.  50 mg seems to be working well, though slowly. 
 

[kat73]

mlk - I guess the pleural effusion went away on its own.  I can't remember the timing of this, but a subsequent chest x-ray for something else didn't show it, so I just kept mum.  This latest one, I don't know.  I was really sick with an ear infection and my regular PCP couldn't see me, so another doctor in the practice did.  He happens to be a pulmonologist.  He thought I might have pneumonia so he did a chest x-ray, which showed the pleural effusion.  Even HE didn't get excited!  They must just be small ones?  I really think being asymptomatic makes the medical community collectively stand down on this one.  I'm not sure how to monitor it anyway, if the oncologist does lower my Sprycel (or stop it for awhile) - how many chest x-rays would I have to get?  Those are not consequence-free either.  I've already had three in a year and a half.

[Marnie]

When I had my first PE, one of my doctor's comments was that on paper, I was perfectly healthy.  Everything was excellent.. .except, I couldn't breathe.  When she looked at the x-ray, she about fell off of her chair, because I only had one working lung.  Then she freaked out.  It was 6:00 pm and I didn't want to go to the hospital until the next day.  She insisted that I go immediately.  I think she would have driven me there if I hadn't finally agreed to go.  It is interesting that while you can have one part of your body in a serious situation, other parts of your body carry on like nothing is wrong.  The human body is an amazing instrument.

[mlk210]

Thank you Marnie for sharing your numbers. Yes the body is amazing for sure. My oncologist was very lax about the whole PE thing. I always wondered if I'd know if or when I had a PE and now I do. I'm fairly sure I'll be worrying every day until I go back on the Sprycel. If only I had been on the treatment longer I might have been more excited to see if I was one of the lucky ones to go off.

[MsLaLa]

I had some PE but thankfully it cleared on its own