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Thoughts after thoracenteses....


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#1 hannibellemo

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Posted 19 March 2012 - 06:52 PM

Today I had a therapeutic/dignostic thoracenteses and I can breathe again! (Diagnostic just in case it could be caused by something other than Sprycel)

I saw the doctor at 9:40 and had the procedure at 12:30. You can find out how it's done by googling it so I won't bore you with the procedure but it was pretty cool. My lung looked like a shriveled raisin on the ultrasound before the procedure and like a real lung on the x-ray afterwards. The radiologist removed 1.25 L but was unable to get a little sliver of fluid down around the diaphram so I hope it will be reabsorbed soon and I hope that it doesn't just fill right back up again. Only time will tell, but I've been off Sprycel now for almost a week so maybe I'll luck out.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2785832/pdf/1756-8722-2-46.pdf

There is some good information in the article above about the possible immune relation between dasatinib and pleural effusions. One thing that caught my eye was that the history of a rash

during therapy (with either imatinib or dasatinib) may be a factor in the development of pleural effusions. Last March I posted about a weird rash I had developed just on my toes. It was purpuric in nature and on occasion was itchy and could be painful. It came again in October and about every 3-4 weeks after and then I had the pleural effusion.

2011-12-13_21-40-46_832.jpg

The other foot looked like this but not as bad for some reason. The thing on top of my foot is nothing, every time I cut myself or otherwise break the skin now it leaves a brownish red spot when it heals.

If you are on dasatinib (Sprycel) or any of the other TKIs, nilotinib least of the three, familiarize yourself with signs of pleural effusion. In retrospect, I think mine was coming on for awhile before I recognized it for what it was. After the first of the year I noticed when ever I had a good hard laugh I would end off with a cough, I noticed it as out of the ordinary but did not make the connection. Also, I might not have had to go through this if I were more proactive with my onc. When we first saw the PE it was very tiny. I should have insisted that I go off Sprycel at the time but he didn't suggest it and I really didn't want to, so nothing was said. My second opportunity to avoid the painful, scary PE that developed. I should have remembered that I was his first patient on Sprycel - now he has three.

Chest pain, can be pleuritic in nature, like mine (ask someone who has had pleurisy, they can describe it in detail or google it), shortness of breath and dry cough or anything else you may think that is out of the ordinary.

Our lights just flickered and we're having a thunderstorm so I'd better hit send.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#2 td1961

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Posted 20 March 2012 - 08:13 AM

Hi Pat,

Your allot braver than I was! I could have had a thoracenteses early on but I said no way, no how. They did a CT scan instead. I only had about 1 L of fluid so you must have been over the full mark! I have to agree, I might have had many of these and didn't know it, even while on gleevec. My onc never tested so who knows? Did you get an echocardiograph to check for PAH? If you haven't, that would be the next thing. Turns out, I not only had the PE's but also PAH as well. Getting ready to start tasigna as soon as I get a baseline EKG. This time, were going to do it right! So much for RARE side effects. I seem to be the LUCKY one to get them all! I have washed out of Sprycel for over three weeks. Any comments from tasigna users what to expect the next several weeks?

Good luck Pat!

Tracy



#3 hannibellemo

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Posted 20 March 2012 - 08:42 AM

Hi, Tracy,

Yes, I did have an echocardiogram and a CT scan; they were normal. That's when I found that my tiny effusion had grown quite a bit. I decided to go for the Thora because in the three weeks I had known what it was it had grown from just blunting the tip of the lung to 1/2 way up the lung. I slept in a recliner, etc. If I had X-ray vision I would have been more comfortable with it but, darn it, I left my Superwoman suit in MO. That and the fact I had another tiny one on the left side and if it had started growing, too. Well, you can see I would have been faced with a situation that would have allowed my imagination to run rampant! Discovering you had PAH must have been pretty scary. How do they treat that?

I did have one epiphany, I have got to get in better shape! I think I could have dealt with this better if I had better heart/lung capacity. So, I'm "getting out the treadmill, putting on the heart monitor, sweating to the oldies, getting into shape" (Sung to the tune of "Putting on My Top Hat")

Last night I discovered it wasn't the piece of cake I assumed. I had a lot of residual pain and didn't sleep much. I still don't feel normal this morning but then I still have CML and effusions so I don't really remember what normal is. How did people survive this crap before we had BIFs to whine to? The internet has been wonderful but I'm not sure it has improved my strength of character!

I'm not sure what I want to do next. This has really deflated me! You try Tasigna first and let me know how it goes!

Good luck!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#4 td1961

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Posted 20 March 2012 - 09:12 AM

Pat,

PAH was found when we did the echo. And the echo was done because I pushed my onc for the tests we should have been doing on sprycel once we found the PE's. He also sent me down for a sleep study after finding I had a bad nocturnal oxygen test. Apparently, sleep apnea has the same potential effects I was having on sprycel (high BP, PAH, frequent nocturnal urination, sleep disturbance, etc.) so he wanted to PROVE it wasn't the sprycel. Har! But it was doc! Told ya!

So how do they treat PAH? Well, nocturnal oxygen supplementation is one treatment which I have been on for about 3 months now. The other, which might be fun for my dear lady, is Revatio (also known as the cheaper version of Viagra!). Did you know that's what that drug was developed for! Me neither! But its sure fun to find out! Har! So, who says you can't have fun treating your PAH?! If only I had enough strength and breath to participate. Just kidding!

Yep, I do need to get on the tread mill again too! All I need is someone to stand there and hold the shot gun on me while I do a couple miles a day! So, when you said you left your superwomen suit in MO. Did you mean Missouri? Small world, my wife grew up in Washington, MO. She now works for a storage company based in MO.

Well, I'll let you know how I make out with Tasigna. It wasn't my choice mind you. I liked sprycel allot and that's the only reason I kept up with these issues as long as I did. I was hoping to stay on it. But even when you get to 20 mg and can't make it work, something's got to change.

Best Regards,

Tracy



#5 hannibellemo

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Posted 20 March 2012 - 12:12 PM

As you know, Jerry Mayfield has quite a bit to say about his 5 year battle with pleural and pericardial effusions and ascites. That is a heck of a lot longer then I would have struggled along with it. If I didn't have to work and could just sit in a chair all day that's one thing - but is that really what I want my life to be like? Just shoot me!

It was my understanding that the PAH (those were my maiden initials) is reversible once you stopped Sprycel. Did you not find that to be the case? Or are you just pretending that's an issue so you can continue to take Revatio? 

Yes, I grew up in MO, Hannibal, and lived for 5 years during the early years of my marriage in DeSoto. We've been through Washington many times. As a matter of fact, one of my husband's colleagues lives there now. He has younger kids and he and his wife love it there.

Keep me posted on Tasigna!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#6 td1961

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Posted 21 March 2012 - 03:53 PM

Pat,

Well, I'm not sure if PAH is reversible or not? I know it is treatable with 02 and drugs but how effective they are still escapes me. I am going back for another echo in about a month and we'll see where we go next. I'm hoping that since quitting sprycel, it has gotten better or better yet, it's gone for good. But I have the feeling that its like the CML, a lifelong thorn in my paw. Another notch in the CML gun belt!   I am feeling allot better than I did. I had a chest pounding heartbeat while sleeping along with the usual sprycel side effects, frequent need to run to the bathroom, night sweats, sleeplessness, etc. After I got on the 02 at night, that's pretty much gone now and I usually sleep through the night without having to get up more than a couple times. My blood pressure was out of control during the worst of it and we have taken care of that with some more beta blocker, adding a calcium channel blocker and more HCT to the mix. You just don't want to take that extra HCT late in the day or you will be camping in the bathroom all night.

Yeah, I know Jerry has had a real tough time of it. Poor guy hasn't had any break at all! And I don't really want to follow in his footsteps either. Good job on the questions about Tasigna! Here's a big "virtual kiss" for you! Maybe I can take 450 mg once a day and have it minimize the side effects? If they're anything like what I experienced on 800 mg gleevec, they will be horrible. I gave up coffee for the entire six years I was on gleevec because I couldn't stand the heartburn.Tea here we come! The GI upsets were a constant that I don't look forward to again. Now if I get bad cramps again like I once had, all bets are off! I had a on going prescription for soma and kept a quarter of a pill on me for whenever they hit. Usually, it was going down the road at 65 in my accelerator foot. OOOHHHH  NO! A great excuse for speeding! Geez, officer, I had a cramp in my foot!

Good bye my dearest sprycel, you were such a fine lady! I will miss you even though we had our troubles. And so it goes, off to another "new normal"! I can hardly wait!

Now I see where you get the Hannibal the Cannibal joke Pat!   Yes, Washington is quite nice. My brother-in-law still lives there so we visit every time we get back.

Best Wishes!

Tracy






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