47 replies to this topic

[Marnie]

Well bummer!

 

Started having breathing problems and chest pain while we were on our road trip.  Got a little paranoid about PAH, after hearing so much about it.  When we got home I let it go for a week until the day we packed up the camper, loaded the kayaks and dirt bikes onto the trailer for another short trip.  Then I decided that maybe I'd better see the doc since breathing at night was getting pretty bad.  Felt pretty much like the last pleural effusion, so I was guessing that's what it was.  Definitely a strange feeling to hope it was a p.e. because PAH was a worse alternative.

 

Went into the doc to check on 1) ruptured disk in back, which flared up again on the trip, 2) carpal tunnel which appeared on the trip, 3)  spot on my face that is just an age spot (damn that 50th birthday) and 4) breathing.  Crap. . .I am falling apart!   Chest x-ray showed another pleural effusion.

 

Doc was not at all impressed that instead of going to the hospital to have it drained, I told her we were leaving on another trip as soon as I got home.  Sometimes, my lack of sense even impresses ME.

 

Karma, however, will always have the last laugh.  Spent some time in the mountains relaxing in the camper.  In the rain.  Kayaked in the rain.  Rode motorcycles in the rain.  Motorcycle brakes crapped out and were unfixable (needs to be rebuilt) so we loaded everything up and drove home. 

 

The sun came out.  Spent the morning today volunteering at the local beemer club's 100,000 foot ride, which is a pretty big event. . people from all over the country show up to ride 100,000 feet in elevation in a single day (tons of Texans up here, Trey. . even one dude from New Jersey!).  Then ended up motorcycle shopping and will probably pick up a new bike on Tuesday.  So things are looking up.  Hopefully I can still breathe by Monday when I will call my doc, probably get another x-ray, and head in to have them stick a needle in my back and drain my lung again. 

 

Am off Sprycel for awhile and need to think about my next discussion with my oncologist.  I'm thinking that I'll suggest dropping to 40 mg Sprycel (50 mg worked for about 7 months before this p.e.).  I just really do not want to switch to Tasigna.  Will be off meds for 2 weeks before my PCR test, so that will be interesting.  Then 2 more weeks before seeing my doc.  I'm already getting concerned about being off Sprycel for that long.

 

Any thoughts out there?  Anyone off meds that long and not have PCR rise?  My last result had bumped up to detectible, which was a bummer.  After a third pleural effusion, is staying on Sprycel a stupid idea?

 

Marnie

[Trey]

Bummer, beemer bimmer.

 

You shouldn't ride with your mouth open in the rain....with your tongue hanging out.

 

The drug break may be enough to reset the PE.  If the PCR stays steady or better, then a dosage drop could be a reasonable idea.  If the PCR retrogresses I would not drop the dosage.

[pammartin]

Marnie,
Glad you are on top of your condition...well in between vamping, biking, helping, and purchasing. I was hoping for P.E. also, not that I wish that on you but hell of a lot better than PH. Keep us posted. Once you actually stay home and feel better you owe us buffalo or ewas it moose photos. Tasks care!
Pam

[hannibellemo]

I have to laugh, Marnie. When I felt bad enough to have my PE drained I was hardly able to walk 10 steps...you, on the other hand, are blythely running around at high altitudes like nothing in the world is the matter!

 

Bummer, though, I'm sorry the PE has shown up again. Although after Pam's experience I agree with you - better PE than PAH!

 

Keep us posted.

 

Pat

[Marnie]

Yep, blythely running around coughing my lungs out and wheezing like a 300-year-old steam engine.  Or whatever old thing wheezes badly.  Monday can't get here soon enough.  To top things off, my doctor picked up and left for Arkansas last week, so I will have to deal with a new Primary Care Physician who I'm not even assigned to yet.  Great. 

 

Gotta get this darned thing drained so that we can drive all over town on Tuesday test riding dirt bikes.   Now that my husband is retired, he is into "let's play" mode.  It will take a bit of training before he learns that I am passing on the responsibilities of cooking, cleaning, and mowing.  One of us here has to keep slaving away at a real job (darn it). 

 

Should have gotten my lung drained last week.  Some day I may learn some common sense.  Or not.

[hannibellemo]

Are you taking steriods? I found that to be extremely helpful in reducing the remaining PE after the thoracentesis. The up-side is that it will give you plenty of energy for tomorrow's running around looking at (and test driving) dirt bikes! 

 

Pat

[Marnie]

I guess I'll mention that to the doc.  Last time I didn't. . .not sure that my oncologist really knew how to treat p.e.  What steroid did you take and for how long?  Pills?  Shots?  I don't know anything about steroids except getting my knee shot up with it in college when I over-trained in cross-country and totally trashed my knee.   Because I kept running on it.  Because I was ultra compentetive.  Hmm. . .sounds familiar.  I've been stubborn and stupid my entire life!!

[hannibellemo]

Sorry, I'm at work and it is probably too late for this information. Methylprednisolone - pretty common for short-term use.

 

Pat

[Marnie]

Drained off 1.1 liters of fluid.  Last time was 1.6.  Last time I let it go so long I could barely breathe.  Maybe I am getting smarter.    My onc is on vacation, so I'll have to wait a bit to check into diuretics and steroids.

[winespritzer]

Dear All,

The PE and PAH sound really awful. Hope your lungs are dried up, Marnie.  

Since I am on Sprycel, does it mean that sooner or later I will have PE or PAH? Will going low salt help.?  My eyelids are permanently puffed up now after 6 mos on the med.  

 

On another note my son did survive the Pan Mass Challenge - cycling the 190 miles from one end of MA to another, one day in the pouring torrential cold rains and the next, cycling as fast as possible to beat an impending second rain storm on Cape Cod- but what a bunch of troopers to bring in money for the Dana Farber Found!!  Get on Pan Mass Challenge to read interesting details!!

Take care.

Winespritzer (I didn't have any clams or wine up there, although I had planned in it)

[Marnie]

Interesting. . .I never had any of the puffiness.  I think I read somewhere that around 25% of Sprycel patients have had PE.  One study from MD Anderson (2007) said that most cases were in advanced stages, rather than chronic.  I'm guessing there's new data coming out all the time.  I'm also guessing that lots of cases don't get reported.  Please don't tell me that low salt is a solution.  I'm a salt person, not a sweet person.

 

That bicycle ride sounds like quite the challenge!  I will have to check out the web page. 

 

Marnie

[pamsouth]

Dear All,

The PE and PAH sound really awful. Hope your lungs are dried up, Marnie.  

Since I am on Sprycel, does it mean that sooner or later I will have PE or PAH? Will going low salt help.?  My eyelids are permanently puffed up now after 6 mos on the med.  

 

On another note my son did survive the Pan Mass Challenge - cycling the 190 miles from one end of MA to another, one day in the pouring torrential cold rains and the next, cycling as fast as possible to beat an impending second rain storm on Cape Cod- but what a bunch of troopers to bring in money for the Dana Farber Found!!  Get on Pan Mass Challenge to read interesting details!!

Take care.

Winespritzer (I didn't have any clams or wine up there, although I had planned in it)

I have been on Gleevec since 2005.  And yes they do cause puffy face and eyes.  Last years I went off Gleevec for 2 months for various reasons, and started on Sprycel at 50mg for a few days.  It was so awful  I call the Bristol Meyers, I think that was it, and reproted it and my oncologist called, I told him how awful it was.  He tried to get me to wait it out I said a Loud NO!!  I talked to pharmacist about the PE  and they looked it up and said at least 50 % of patient over 65 years old develope PE or PAH.  I'm 66 years old.  Anyhow I talke oncologist into lowering my Gleevec dosage, and now I have much less inflammation and swelling, feel much more normal!!!  My GFR Kidney filter was at stage 3,  55,  I was concerned about that too, as I also had my gall bladder out in 2007, gall bladder was good but the bile ducts didn't work anymore.     Seems everthing for me stems from inflammation.   Now most docs will tell me, it is not any of the meds I take, being Gleevec, blood pressure and diuretic.  However a couple of cardio docs said if I didn't need to take the diuretic, not to as they will damage kidney from dyhdration.  When I was off Gleevec for two months last year, all the swelling went down, I didn't need the blood pressure pills or diurects.  So there you go, sometimes you can try your own experiments.  But when you are mixing a lot of chemicals together it is hard to tell what does what.  ???  Since back on Gleevec at a lower dose, yes I still have swelling, but I take a much lower dose of blood pressure meds, and diuretics every other day.  Got to stay in tune with your body.  But again, my Leukemia counts are up.  Seems everything is a trade off, leukemia counts up but stable, but less inflammation and toxicity to my organs.  There you go, I decided to just go neutral, and try to save my organs, and live with a few more leukemia cells.  

Will it work, probably never know!!!

PamSo

[winespritzer]

Dear Pam,

 

Thank you for taking the time to write.  I learn  from every single message.

 

It never dawned on me that I might have a puffy face and I thought my face looked different last week, a little bigger! Am eating at home again and trying to rid the added salt in hopes of the eyelid puffiness going down. I'm not even sure what my face used to look like anymore.  Everyone tells me I look well but I think they are afraid to say otherwise.

 

My doctor told me that he will monitor my breathing etc., for PE and PAH and to note any swelling...guess it's a watch and wait or vice versa. My 2nd opinion doctor told me only 30% on Sprycel develop the PE or PAH and I didn't think to ask about the age.

I am 70 and know it's a master juggling of the drugs - killing off the cancer versus killing my liver and lungs. I did ask about a low dose with a regular level of cancer cells but neither doctor answered me; but that was at the beginning of this experience!! So now I know they both just wanted to get the numbers down.  And sad to say but my 6 month test didn't show much of a drop from the 3 month result.

 

.  What a club we all belong to but I honestly thought in the beginning, I wouldn't be here now. So I guess I am glad to be facing PE or PAH or whatever else comes this way!!

 

On the way to the dietician and it's not covered by Medicare but Bristol Meyers is paying for my meds in Year 1, so that $$ is going to the dietician and whatever she deems necessary for me - probably all the vitamins/supplements we take!

 

Thanks again, PamSouth!  Be well! 

Winespritzer

[cleocans]

Dear All,

The PE and PAH sound really awful. Hope your lungs are dried up, Marnie.  

Since I am on Sprycel, does it mean that sooner or later I will have PE or PAH? Will going low salt help.?  My eyelids are permanently puffed up now after 6 mos on the med.  

 

On another note my son did survive the Pan Mass Challenge - cycling the 190 miles from one end of MA to another, one day in the pouring torrential cold rains and the next, cycling as fast as possible to beat an impending second rain storm on Cape Cod- but what a bunch of troopers to bring in money for the Dana Farber Found!!  Get on Pan Mass Challenge to read interesting details!!

Take care.

Winespritzer (I didn't have any clams or wine up there, although I had planned in it)

 

I have been on Sprycel for 3 years and have not gotten a PE.  (knock on wood)  I do suffer from water retention though.  Mostly in my abdomen.  I do keep my sodium low and am on 40mg of lasix, diuretic.

[winespritzer]

Dear Cleocans,

How do you detect water retention in the abdomen- protrusion? Forgive my ignorance. I know what it will look like in the ankles and feet.

I think my face was puffed up from lack of hydration and soy sauce in some wontons.

 

Glad you haven't had a PE!!!

Thanks,

Winespritzer

[Pin]

Winespritzer, I get fluid retention everywhere, it is pretty weird to say the least, the doctors often look at me strangely when I tell them it is not just a puffy face and fat ankles!

 

I literally feel like I have a layer of fluid over my entire body when I eat too much salt (combined with a contraceptive pill, which logically makes the fluid retention worse), the way I would describe it is feeling kind of 'squishy', fat is fairly solid and dense, fluid retention feels, well kind of puffy and squashy just underneath the skin. I also weigh at least 1-2 kilos more when I let it build up.

[cleocans]

Dear Cleocans,

How do you detect water retention in the abdomen- protrusion? Forgive my ignorance. I know what it will look like in the ankles and feet.

I think my face was puffed up from lack of hydration and soy sauce in some wontons.

 

Glad you haven't had a PE!!!

Thanks,

Winespritzer

 

I can see the puffiness in my abdomen.  Plus my clothes will fit tighter.  When I don't watch my sodium and it gets really bad it will push on my stomach and other organs.  That is quite uncomfortable!

[winespritzer]

Holy cow,

I just thought I was gaining/losing weight all in a day! Now I know why my pants and skirts are tight/loose.  I thought I just had to check my ankles, eye lids and ring finger.

I think my doctor tries to tone down or not recognize all of my perceived side effects.    He wants me not to worry but it's my nature!

 

My second opinion doctor told me that the water retention comes on very slowly and it's the retention in the body core that is the problem, not so much the ankles. I just didn't know we could feel it in the abdomen or get rid of it with diuretics.

 

Definitely laying off the salt whenever possible - gained a pound yesterday from yummy, salty French fries!

 

Thank you so much for all of your help.

Winespritzer

[kimw]

Hi everyone. I haven't been on here in several months but I thought I would check in because I recently had my first experience with PE and wanted to see if others are having it. I started on Tasigna in March of 2012 when first diagnosed and had the dry skin and hair loss issues. I also completely lost my sense of smell. I hated the Tasigna schedule so when I changed Dr.'s and started going to MD Anderson I asked about changing. She put me on 100 mg Sprycel once a day and I felt like I had bee let out of jail. No more worrying about when to take my meds and when I could eat. My smell has not come back but no other side affects until a couple of months ago (after being on it for 10 months). The puffy eye thing started along with nasal drainage and fluid build up in my ears. I thought it was allergies. No swelling in my feet or hands. Then the breathing problems and wheezing started. I thought I was developing asthma. Dr took chest X-rays and large amount if PE in my lungs. She pulled me off the Sprycel for 2 weeks and put me on Lasix and methylprednisolone for a week. That worked and the fluid came off. I started back on the Sprycel but at 70 mg/day about 3 weeks ago and the fluid has already came back. I really don't want to change meds again because I have not really had any other issues and it is working for me. Any suggestions?

[Marnie]

See if your doc will drop you down to 50 mg.  I went from 100 to 50 and remained PCRu (or close to it).  Also, be sure you are off long enough to completely resolve the PE.  I did NOT do that the first time around and it just filled right up again.  I took myself off Sprycel and it cleared up.

 

After this third round of PE, my doc is getting far less conservative than he used to be.  Before, he was pretty much against anything but standard 100 mg.  Now he's talking about dropping down to 40 mg if my numbers are resonable. 

 

I read about a study at MD Anderson where the median number of days off of Sprycel was 23 days.  That made me feel a lot more comfortable staying off longer.  I am now 2 weeks off, and planning on probably 2 more weeks off until my PCR results come back. 

 

My doc is now of the mind that lower dose and a low level of leukemic load might be the best thing for me, rather than higher dose aimed at PCRU, but dealing with continual PEs. 

 

I also asked the radiologist dude who did the thoracentesis if it was damaging to have the procedure done repeatedly and he said that he has lots of liver/kidney patients who come in monthly to have their lungs drained.  Certainly, he said he hoped he didn't see me every month, but that it wasn't something to be particularly concerned about.

 

So after all that, I would say. . .stay off the meds a bit longer, and see if your doc will lower your dose to 50 mg.

 

Good luck!

Marnie