17 replies to this topic

[Marnie]

Well, crap.  After a week on anitibiotics, the chest x-ray has not improved, so now doc assumes PE.  Heading to the hospital tomorrow morning for scans and a long needle.  Hopefully an in-and-out procedure.  Happy Thanksgiving to me.  Bleah.

On the bright side. . .maybe now my oncologist will agree to lower the Sprycel dosage.  Too bad I got my 90-day supply this afternoon. 

[Marnie]

Ugh.  They drained 1.6 liters of yellowish, foamy stuff.  Gross.  They'll send it in for testing.  My left lung was pretty much totally collapsed, and they said it would take the rest of the day for it to expand again, so breathing still hurts a bit, but it feels a lot better than before!  And as an added bonus, the nurse estimated that I was carrying around an extra 2 pounds. . .this is not a diet I would recommend, however.

And now I'm going to relax for the rest of the day.  Have a great Thanksgiving!

marnie

[JeffJ]

Hi Marnie,

When I had PE in the spring, doctor put me on water pills.  Really, I should have dealt with it much sooner, but I kept thinking it would get better! My doctor was not impressed how long I waited.  The pills did help, but it took longer for full recovery,  the bonus was I had a holiday from the 100 mg of Sprycel for six weeks.  Now back on 50 mg, keeping an eye out for breathing problems.   According to my doctor about 22% of patients get PE from Sprycel. Try to enjoy your Thanksgiving holiday, and relax.  Jeff

[Marnie]

Thanks, Jeff.  Good information.  What did the water pills do?  What are water pills?  Never heard of them.  My onc is having me stop Sprycel until Monday when he gets the test results back.  I think he was skeptical that I had a PE.  All of my vital signs were perfect, and he couldn't hear anything in my lungs.  My PCP was the same.  Her comment was that on paper I'm perfectly healthy.  She was pretty astounded to see my x-rays.  So they were both a bit taken aback when they saw how much fluid was drained.  Geez. . .no wonder I couldn't keep up with the younger folks at boot camp.  I was lugging around 3 pounds of nasty stuff in my lung cavity, with a totally collapsed lung.  Feeling pretty low energy tonight.  I think I'll go to bed early. 

[JeffJ]

Hi Marnie,

Just a follow up from my last post.  Water pills are diuretics, and they force your body to remove excess fluids (water) and salts from your system, in my case the fluids causing the PE.  Example of diuretic would be Lasix, but there are so many types with different effects on the body.  I was on Lasix and another one and it did work.  Currently I'm on another one as I am retaining too much fluids.  I take as needed.  My onc is very good, and when I send an email he responds very fast. (Within 20 mins regarding my breathing issue). I asked if I should see him or my GP, he told me to see him the next afternoon.  In his experience he finds most GP will not understand the Spyrcel is the cause, and go searching for all other problems.  Just an other note, my log numbers only dropped a little from missing 6 weeks and now on 50 mg.  Test results were 3.9 before PE, and dropped to 3.7 after all the changes.  Early Feb/14 I go for updated results, and I can live with that!  Hope you had a good rest last night, and enjoy your big holiday today. I'm in Canada, so we had our Thanksgiving, but I will be home early today to watch football.  Cheers, Jeff

[hannibellemo]

Marnie,

I have to say this. I'm not impressed with your oncologist. He should not be thinking about putting you back on Sprycel at all until this PE is totally resolved! I can't say that too strongly! I am being bossy again, sorry, I know.

Diuretics may help for some, but for many of us they do nothing. One thought is that this is not a fluid retention issue, but an immune response issue. I would try steroids in addition to the diuretics if you decide to use them. That was the only thing that really got my resolution going. The fact that he said he couldn't hear anything in your lungs is very distressing (and should signal PE to him with the trouble you've had breathing), he should at least have been able to hear normal breath sounds. That is something both my Mayo onc and my local onc check every time I see them. They want to be able to hear breath sounds all the way to bottom of my lungs. With a collapsed lung, you obviously didn't have any. The fact that two doctors missed this is unacceptable.

I'm off my soap box. Have a wonderful Thanksgiving and while you are resting this weekend please be thinking of ways to give your onc hell on Monday for missing this! (Now I'm really off the box.)

Pat

[Marnie]

Thanks, Pat. . .I have been going back and forth between being pretty irritated at my onc, and being irritated at myself for not pushing the fact that something was definitely wrong with my lungs more strongly when I saw him the last two visits. 

So how do you know when the pe is completely resolved?  The lungs are drained, I'm breathing a LOT better. . .but what else should we be doing to ensure that the issue is fixed?  And is there an accepted protocol for when to start back on Sprycel and on what dosage?  Doesn't seem like I should have to be the one doing the research, and maybe my onc is checking into that. ..but when Monday comes and I hear from his nurse, I want to be sure that I have a good idea of what we should be doing (in case he doesn't?!). 

I like the guy, and I trust him. . .but he's not a cml expert. . . and my confidence has dropped a bit, which is frustrating.  Dang. . .I've gone through a lot of oncologists.  He is my 4th. 

Have a great Thanksgiving holiday, and thanks so much.  Who knows how much longer I would have waited to see the doc without your "bossiness!"  Often I need a good kick in the pants. 

Marnie

[hannibellemo]

Well, since you asked... , your x-ray should be clear or very nearly clear, maybe with just a little blunting at the tip and you should be symptom free. I have no confidence that your doc is able to read an x-ray so you need to research this. There are plenty of x-rays showing PEs on the internet. It is pretty much just a white space from the bottom of your lungs up to where the fluid ends. It really doesn't look like infiltrates so I don't know what they were thinking. Did they have a radiologist read this? If not, they should have; if so, then 3 doctors missed it.

I had slightly over a litre drained from my lung and it was still only able to expand about 3/4 of the way. It is not a good thing to drain all the fluid as that can lead to a pneumothorax which is a totally collapsed lung. I know you said you had one but you probably didn't. That is incredibly painful when the lung expands again, one of my colleagues was in a construction accident and had one.

I was able to feel the fluid moving when I would lay down and when I would sit up for a couple more weeks (imagine your lungs on a water bed) I was started on steroids, 40 mg. for 4-5 days and then I was weaned off for 3-4 days. I still crashed the day after I took my last one (felt like shit) but I felt fine the second day. As Trey would say, your mileage may vary. I would request the steroids.

I've been on 50mg. for 18 months and so far, so good (knock wood).

Ok, I need to go study my flight manual so I can second guess the pilot on my way to Cabo San Lucas next week!  Have I mentioned I have a teeny,weeny control issue?

Pat

[Marnie]

Thanks, Pat.  That is really helpful. 

When I think back on how the situation played out, it really does start to look like the circus of the clowns.  My PCP took and read the x-rays.  Frustrating that while I mentioned my concern that it might be a pe due to sprycel, neither she nor my onc pursued that line of thought.  Only after the second x-ray showed no change after a week of antibiotics, did my PCP decide that it was a pe.  She set up the hospital appointment (wanted me to go directly there, but the hospital radiologist who would do the procedure was gone for the day).  I asked if I should bring the x-rays with me, but she said no, they would do their own tests. 

Then when I got to the hospital the next day, the radiologist looked at the notes he'd been given and said he really didn't know what they wanted him to do.  So I explained the situation, explained what I had seen in the x-rays, told him that pe was a known side effect of sprycel.  After the procedure, he didn't know if my doc wanted him to send the fluid in for testing since the paperwork didn't mention it, but said since it was my first pe, he felt it should be analyzed and I agreed. 

It was pretty fascinating to see the ultra sound.  This guy was good. . . he knew his stuff.  The entire left lung area showed dark, which meant fluid.  He showed me the actual lung, which was a flattened pancake looking thing that was sticking out to the side. . .he said it was collapsed and had been pushed into the pleural area (or something like that, can't remember the exact wording).  Somewhere into the second bottle, they had to stop the procedure for 5 minutes or so because it got extremely painful.  For the rest of the day I had very sharp pains in my left shoulder area, which was pretty weird.  So my guess is that the lung may not have been totally collapsed, but was in pretty bad shape. 

Yesterday was pretty rough, but today I'm feeling pretty close to normal, though the constant cough is annoying.  I do think that my many years of distance running with pretty extreme training in my high school and college years had an affect on the difficulty of diagnosis.  My body seems to compensate extremely well.  All of my vital signs were perfectly normal.. 98% oxygen to the body.. .pretty amazing with only one lung.  Also, my midwestern "suck it up and don't complain" attitude didn't help.  And the fact that I think we sort of get used to not feeling fabulous but getting on with life anyway. 

I am disappointed that my oncologist didn't pursue my complaints of my lungs not feeling right in the last two visits.  but that said, I wasn't as insistant (I guess) as I should have been.  I will have to consider how our next conversation will go. 

One good thing to come out of this.. .I'd been pretty frustrated about my weight.  My normal weight has been around 122, typically.  Lately I'd been up to 129 or so, and just couldn't seem to get it down.  The night of the thoracentesis, my weight dropped to 124.  5 pounds lower instantly.  Husband says that 1.6 liters equals 3 pounds. . .but even so. . .no wonder I couldn't keep up with folks at boot camp! 

Thanks again for your information.  That will help me out tremendously on Monday.  Doesn't seem like I should have to be the one doing research to know how my treatment should go, but that seems to be the best way to get things done right. 

Have a great time in Cabo!  Makes me want summer vacation to get here.  Well, actually, I always want summer vacation to be here.  I simply need to be retired.

Marnie

[Marnie]

Ugh.  I was not prepared for the Sprycel headache when I re-started meds!  I was only off for 9 days, but got slammed with a headache early this morning, after getting back on Sprycel last night.

And I have the additional headache of dealing with insurance.  Gah!  Unfortunately, just before the p.e. was diagnosed correctly, I had gotten a 90-day supply of 100 mg.  Doc has decided he wants me on 70 mg.  His nurse called BMS to see if they had an exchange program, but they do not.  Insurance will certainly not cover the cost of additional Sprycel.  I do have a bottle of 50mg from the month before when I was (barely) able to convince the doc to write a script for that just in case my PCR numbers were undetectlble. . .my hope was that I could talk him into trying a lower dose.  PCR numbers had come up just a tad, so that conversation didn't go anywhere.

So, his nurse is hoping that insurance might cover a month's supply of 20 mg (lucky thing I'm a math teacher 50 + 20 = 70) so that I can take the lowered dose.  Doc was adamant he was NOT interested in 50 mg, or even alternating 50 and 100 every other day. 

I am tired of dealing with this stuff.  I am also tired of the frigid weather, tired of grading papers, tired of painting the house. . . .o.k.  enough whining for the day.  Oh, yeah. . .and I'm tired of this headache.  O.k.  I'm done. 

[Trey]

Your new theme song:  "I'm Tired" by Lillie von Shtupp:

http://www.youtube.c...h?v=Uai7M4RpoLU

[pamsouth]

That was a belly laugh.  She was Tired!!!! 

Wonder the chair didn't break when she kicked it, that is tired. 

Yea, don't think we could say it anybetter.  Odd Comparison  but funny!!! 

I don't think she had any PE but she definitley got her point across. 

Wonder if that would work with the docs. 

[Badger]

I have quite the pneumonia saga. I have a pressure sore that got infected and later found that the underlying bone was also infected. So, I was put on IV antibiotics. A couple weeks later I told my wife that I had pleural effusion (I had it when on Sprycel, so I knew the symptoms). I went to the hospital and was admitted with, what they thought, was typical pneumonia. It turned out that one of the antibiotics caused a very rare form of pneumonia called acute eosinophilic pneumonia (AEP). They tapped my lungs twice, took me off the drug, and treated the pneumonia with steroids. Within a few days I was doing much better.

[Marnie]

That sounds AWFUL!  I'm pretty much recovered and back on reduced dosage. 

Happy Holidays!

Marnie