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PAH anyone? Anyone? What to do????


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#1 jrsboo

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Posted 12 May 2014 - 11:51 PM

HI there all!

Well, even the 20 mg of Sprycel I was taking was too much I guess.  I have developed shortness of breath.  Went to onc.  Had a chest xray and an echocardiogram.  The echo showed that I have pulmonary hypertension (albeit mild--but enough to take my breath away) and I guess based on the base line they took when I started, she said there was evidence it was caused by the Sprycel.

Has anyone else gotten this lovely side effect, and what do you do when it hits and you cannot breathe?

I am waiting for an appointment with the pulmonary unit at UW Medical in Seattle, and of course, will enquire there what to do.  But in the meantime..............do you sit down, take an aspirin, keep going, what???

This is the first time ever I feel like I might not be able to get over this.  For those who don't remember (and how could you on these drugs???), dx 09/2010, very early catch, only about 24K in WBC, went on 100 mg sprycel for 2 years (side effects are debilitating for me), switched to Ponatinib to see if it was the class of drug or just Sprycel (it was the class) and P was REALLY hard to live on, so back to S but at 50 mg for 6 months then down to 20 mg for the past 4 months. 

Now this!

When I can't breathe, it feels like I am going to die. 

Anyone else have this?

Caroline



#2 hannibellemo

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Posted 13 May 2014 - 11:52 AM

Caroline,

Being short of breath is the pits. I remember the feeling from my PE and it is something I don't want to experience again. You started on Sprycel and then went to Ponatinib, there are still 2 drugs you haven't tried. Tracy developed PAH along with his PE on Sprycel, hopefully he will see this and comment. He switched to Tasigna, took medication for his PAH and last I heard he was doing well. I don't know if his PAH resolved when he stopped Sprycel, but his onc believed it was the cause and it did improve with medication.

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>


#3 jrsboo

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Posted 13 May 2014 - 09:04 PM

Thank you so much Pat!  That makes me feel soooo much better.

Caroline



#4 hannibellemo

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Posted 14 May 2014 - 06:11 AM

Caroline,

Here is a link to one of the threads Tracy posted on about PAH. I don't know if he gets on here much any more so I thought this might help.

http://community.lls...e/136229#136229

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>


#5 td1961

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Posted 14 May 2014 - 10:27 AM

Caroline,

Hi, this is TracyD from western Colorado. I was on sprycel for about 2 years when I developed a pulmonary effusion and had to go off the meds for about a month in order for that to resolve. Initially, I had a bad cold which I thought turned into pneumonia but when I went to my PCP who did a chest x-ray, he found a large effusion present. I then went to a lung specialist in Grand Junction for consultation. During this incident, I suffered from shortness of breath and as part of the follow up care, I had an echo which revealed a moderate case of PAH. My doctor prescribed HTZ 25mg/d and nocturnal supplemental oxygen at 2.5L by cannula and a sleep study for apnea. The results of the sleep study were inconclusive but the O2 was shown to be effective in keeping my nocturnal O2 readings normalized. So, I have been on that same therapy for about 2 years now and I can really tell the difference when I don't have the 02 at night. Subsequent echos are done yearly to monitor the progress of the PAH and they have all been borderline. Of course, I had to switch to Tasigna as a result and I've found it to be the lesser of the evils, at least for me. The side effects are no where close to the severity of sprycel or gleevec. I have an occasional muscle cramp, stomach upset, gerd, fatigue, etc., but nothing on the order of the other TKIs I've tried. Incidentally, there is a drug used to treat PAH if severe enough called Revatio (which, funny enough is viagra) although I never needed it as the PAH didn't progress to a point where it was appropriate for me. So, it sounds like you're doing all that can be done, except for maybe getting on 02 which will require a doctor's RX. Its always a good idea to consult with the experts when something like this comes up. Good luck and easy breathing! TracyD



#6 winespritzer

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Posted 14 May 2014 - 10:29 AM

Hi,

Hope you were able to get an emerg appt.

My 2nd opinion doctor had said this was a possible side effect.

I think until you get that medical intervention you need, just sit and breathe very slowly. Meditate often. I also watch reality shows to take my mind off reality.

I wish you well.

Winespritzer


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#7 jrsboo

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Posted 14 May 2014 - 06:11 PM

Thank you SO much Tracy.  I have an appointment in the works.  Sigh.  Unless it is oncology, everything moves like mud in the medical world.  Supposedly going for CT and Pulmonary function in the next two weeks and then a dr. appointment in a month!  Seriously???  Luckily the shortness of breath has subsided and I am back to doing my usual activities.  Of course, I am also off Sprycel completely and now feel GREAT.  Thank you for taking the time to answer my call.  I get slightly panicked when I cannot breathe.

_caroline



#8 jrsboo

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Posted 14 May 2014 - 06:12 PM

Dear Winespritzer,

Thanks, I didn't think there was much they could do, until they actually see me.........and it will be a while I guess.  I laid it out in a previous email so won't repeat myself. 

Thanks!

Caroline






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