47 replies to this topic

[Marnie]

The good news is that the pleural effusion is cleared up.  We're holding off meds 2 more weeks until PCR results come back and then deciding on dosage.

 

The bad news is that I blew out my back again yesterday afternoon (right before parents and students showed up for the "meet and greet").  From 1:00 a.m. until 6 a.m this morning were the most excrutiating hours of my life!  Took a vicodin and it didn't do squat.  Did not know if I would be able to drive to my onc appt this morning (painful).  Did not know if I'd be able to show up for the first day of school (I think I'll make it). 

 

My onc says that I am no longer his "easy" patient. 

[kimw]

Marnie,
Thanks for the info. Do you have the link to the study at MDA that you read? My Dr. is fairly new there (about 2 years I think) and I would like to have my facts straight when I talk to her about it this time.
Thanks,
Kim

[Marnie]

I printed out a paper copy and this is at the top.  Don't know if it will get you there or not:

 

http://jco.ascopubs....25/25/3908.long

 

(Just tested it and it got me there.  Copy and paste to your browser).

 

m

[Marnie]

Actually, don't copy and paste. . . when I posted, it shortened it, rather than printing what I had typed.  However, clicking on the link works.  Let me know if you can't get there.

 

m

[KayJ]

Similar story, Marnie.  If your PCR is holding, you can go down to 20 mg.  I am still at 50 mg because of PE after dropping down from 100mg.  And, if my next 2 PCRs continue to be holding at greater than 4 logs, we're going down to 20 mg.

[kimw]

Marnie,
That worked. Took me right to it. Thanks a bunch. I think my Dr. had me start back on the Sprycel too soon. Hope your back gets better.
Kim

[Marnie]

Update, if you're interested (if not, just skip this)

 

Most importantly, I got the new motorcycle.  It's great.  Need to sell the old one.

 

Additionally, still off Sprycel (getting nervous because it's been 25 days (actually, I cheated and took 50 milligrams for a couple of days earlier this week, when I got really uptight.  Wonder if my doc will be annoyed when I tell him. . . have I said that I am NOT a rule-follower?).

 

Called to get PCR results . . .the nurse read the report, and though I'm not sure she understood what she was reading, I think it sounded like I'm back down to PCRu. . .pretty cool after being off Sprycel for almost a month.

 

Echocardiogram. . annoying.  Cardiologist apparently still hasn't sent the report to my onc.  It's been a week.  How long can it take in a freaking metropolitan area!!??!  This is ridiculous!  The tech who did the echo commented that my atria (um?) was slightly enlarged and that the pressure was a bit high.  That makes me nervous, but I'll wait for the cardiologist's report.

 

Anyway.  Eventually, when all of the results make their way to my oncologist, he will call me and let me know what he wants me to do.  I'm betting on lowering dosage to 40 mg, and staying on Sprycel.  Anyone else want to place their bets?

 

Marnie

[pammartin]

Hi,  You are correct, the results should be ready.  Each time I have had my echo, I was told pressures almost immediately.  Either that or there were so many people standing around talking about them because Presby is studying my case I overheard before I was told. 

 

I know this is easy to say and harder to do, but I have been off TKI since May, still holding till heart cath next Friday (what a way to start the labor day weekend) and as of two weeks ago I am still in total response.  Each of us is different but try not to let the lack of drug start another symptom of nerves or anxiety. 

 

Sorry about your back, that is awful.  We always seem to have one or another side 'thing' we have to deal with including the CML. 

 

Congrats on the bike!!  Photos please when you get time. 

 

I won't take your bet about reduction of med, but I will agree with you that is probably what they are going to do.  I asked, just because I was curious and I have several bottles of Sprycel unopened and sitting in my cupboard, if I could continue taking it but lowering the dose dramatically.  You would have thought I asked to have my left hand removed.  I was just asking.  I guess once it is clear the Sprycel is causing side effects that are beyond the ones we are forced to live with it is not safe to take it in any dose.  I am still struggling with choices, everyone wants me to go on one of the latest TKI drugs and I was leaning toward one of the first generation drugs.  I would not look forward to yet another fight for the med, the co pays, and the hassle to get newer drug but that is what is recommended.  I have 3 more weeks before next oncologist app. then it's decision time.  I know next to  nothing about this process but what I have lived and read here, but is there a chance they might want you to change drugs completely?  Just thinking out loud.

 

Hope this school year is peaceful. 

Pam

[Trey]

Marnie,

 

Pleural effusion and right atrium enlargement can be caused by Sprycel in some people, but should be reversible.  It is a very good idea to reduce dosage in this case.  If it continues on low dosage I would switch drugs and take a low dosage of another drug as a maintenance therapy since you are PCRU.

 

http://erj.ersjourna.../1/218.full.pdf

[Marnie]

Trey, thanks.  That was a helpful article. 

 

Now can you tell me why I have to take an annual leave day from work to track down my test results, see if I can talk to or e-mail the cardiologist to actually get his perspective on the echo results, since I haven't yet had access to them???  Arrgh! 

 

I got a message from my onc's nurse.  Very helpful: " Hi, Marnie.  Dr. J says that the pleural effusion was caused by your medication."

 

No duh.  No comments about the cardiologist's report, no comment about if I should continue off Sprycel, or start back on lower dose, or switch meds. 

 

So I will take a day off to see if I can actually get a copy of the PCR results, the echo  results, and the cardiologist's report.  Then I will try to contact the cardiologist, because I am quite sure that he had no idea of my background or of what he should have been looking for. 

 

WHY do I pay the $200+ for the appointment with a specialist when I am the one who tracks things down, makes the diagnosis, and gets things rolling!!??!  Geez, I am frustrated. 

 

Maybe I'm just tired.  Yesterday was another typical day ride turned into a 12-hour saga.  We seem to have a knack for making a boring day turn into an adventure.  Between the torrential downpour, 250+ mile ride up the mountain pass encountering torrential winds, turning around twice before reaching the goal (and finally giving up on the goal), then in the middle of downtown Boulder traffic having hubby's motorcycle die, so hubby cut me off, took the bus lane, jumped the curb into the grocery store parking lot while I tried to figure out what the heck was going on.  Ended up riding 2-up on a little 250 back to Denver, hooking up the trailer, driving back to Boulder to retrieve the dead bike, and finally getting home way later than the day was supposed to be. . .  yep, maybe I'm just cranky. 

 

Anyway. . thanks for your perspective.  It helped me consider my options, and make my plan of attack. 

[Trey]

Not a very good ad for BMW bikes.

 

Most docs don't know anything about drug side effects except what the package insert says.  And that is not very helpful for TKI drugs.

[Marnie]

Important note. . .these were not the BMWs.  BMWs do not fail.  BMWs are the cadillacs of motorcycles.  Even the Harley riders know that.  These were little 250 trail bikes (my brand new Yamaha XT250 and hubby's top of the line [or so he says] WR250).  Riding 2-up on the beemer would have been fine.  On the 250, it was torture.  I could have put my butt on the metal rack and been comfortable, but then I would have had rack-shaped bruises on my posterior.  It seemed better to scrunch myself into the itty-bitty little space between hubby's butt and the metal rack.  "Snuggle up," he said. .   yeah right.  Next time, I'll ride in front and he can be the "bitch."

[pammartin]

I used to say I ride my own or don't go, not riding 'bitch' with anyone. Ate my words few times one summer, dropped bike on hot tar after stopping at red light. Embarrassed would not define my presence, broke throttle cable picking it back up. I was riding bitch that day.Two more incidents that summer, ate humble pie each time. My companions were quick to remind me of my former denial to ride bitch. Chewed my words.

[Marnie]

We have a very good friend (Harley rider), who really, really wanted his wife to learn to ride.  She was quite obese, so not agile.  Anyway, he bought her a bike and taught her to ride.  They were riding one day, and stopped at his favorite biker bar.  She dropped her bike in front of the bar.  He was so embarrassed, he RODE OFF WITHOUT HER!!  Needless to say. . .she sold her bike and never rode again.  Not sure she ever spoke to him again, either.

 

Now, my hubby is a gentleman.  When we're trail riding and I drop my bike, I get on the radio and say, "I need a little help back here, honey!"  He comes back and picks the bike up for me.  What a guy.  Of course there was that time that he took me up a steep trail (black diamond?).  I got stuck.  I cried.  Then there was that other time. . .hmmm. . .actually, maybe he's not such a gentleman. 

[Marnie]

O.k., Trey. . .here's some info. . .tell me what you think (sorry, but you know more than my doc. . .though actually after all the chasing around today, maybe I'm not quite so irritated with him. . .).

 

During lunch (forgot my lunch today, so might as well just spend the time on the phone), made many calls about recent tests.  Should call back and apologize to one lady that I was short with).  After school, drove all over town picking up reports.  Here's what the cardiologist report says. . .what do you think?

 

Most stuff was normal.

Left atrium mildly dilated

Mitral valve - mild to moderate regurgitation

Right ventricle - systolic pressure mildly increased.  Estimated peak pressure was in the range of 37 mmHg to 42 mmHg.

Tricuspid valve:  mild regurgitation

Inferior vena cava, hepatic veins:  resphirophasic changes were blunted (less than 50% variation)

 

Left ventricle:  normal size, systolic function normal, ejection fraction 67%. 

 

Left atrium pressures increased, atrium mildly dilated.

Right ventricle:  size normal, systolic function normal systolic pressure mildly increased.  Mild to moderate regurgitation.

Tricuspid valve - structure normal.  doppler:  mild regurgitation. 

Respirophasic changes were blunted (less than 50% variation).

 

Everything else pretty much was normal.  There's a bunch of other stuff below that, but I don't have a clue what it means.  Actually I don't know what any of it means.

 

Called and left LONG message for onc nurse.  She called back after talking to doc.  He is setting up full pulmonary system testing, since I'm still feeling tightness in chest.  Still off Sprycel until all testing is complete.

 

In looking at the study that you referenced earlier, it looks like my elevated numbers are far lower than that mentioned, just don't know if that means that they are high enough to be of a concern or not.  I need to go online to see what regurgitation means. . I assume blood flow has some backwash..??  will find out.

 

Too much work to do.  Thanks for any information you might have. . .

 

m

[Trey]

Does not look worth worrying about.  The regurgitation is a leaky valve where blood flows backward a wee bit at the end of the pumping cycle due to lack of full valve closure.  Appears yours is mild but it could add to shortness of breath.  All in all not bad, but when added to pleural effusion it could enhance breathing issues.  Many people live with much worse.

 

This stuff is due to that Sprycel SRC inhibition thingy.  Gleevec and Tasigna do not inhibit SRC, but Bosulif does.  But these issues should clear up with lower Sprycel dosage.  If not maybe low dose Tasigna would be better longer term.

 

Remember to take your lunch tomorrow.  Eet mooooooooor chikin.

 

http://www.mayoclini...on/con-20022644

[hannibellemo]

Marnie, Trey,

 

I'm so intrigued by the humor of your posts that I almost forget to read for content!

 

Now I want to go back and pull out my echo info. I think I have had it done at both Mayo and here. It might be interesting to compare notes. Mine also said things were basically normal but I'd like to see if there was anything about enlarged right atrium.

 

 

Pat

[sunshineC]

Hello!  I have never been involved in posting, replying, or most anything else on the internet before.  I don't even have a Facebook page, or want one.  So please forgive me, I am very new at this.  I tried to post a topic yesterday "New Kid" and I guess I was in the right church, wrong pew.  Anyway, I am 57 yrs old was diagnosed with CML in early March and have been on 100mg Sprycel ever since.  I had some concerns about some side effects I have/had, mostly just wondering if they're normal, permanent, the CML, the Sprycel and haven't gotten much satisfaction from my doc.  I just started back to work part time (as an Admin. Asst. - desk job) the middle of July.  I was sooo tired and slept so much in the beginning.  Then headaches, dizziness, upset stomach... When I called my doc about these things back in May, I was told by one of his nurses (after just mentioning how tired I was) that "There is no reason you shouldn't be back to work by now.  Your blood levels are fine.  If anyone looked at them, they wouldn't even know you were sick."  Luckily I had very understanding people where I work who did not want me to come back until I felt I was ready, and certainly not driving an hour each way tired or dizzy.  But now I'm so confused about the things I've felt and still feel.  I just want to know if others have felt this way.  I figure who knows better than others who have or are going thru the same thing.  Does anybody still get real tired on some days, and I mean tired, like weighted down and don't do anything but sleep?  My legs ache and I'm out of breath when I walk from the parking lot to work - anyone?  I still have bouts of dizziness, headaches, some worse than others.  I've been trying to read some on here to learn.  I haven't even learned some of the abbreviations I've seen on here.  Then I read about PE and PAH - Yikes!  That sounds scary. I keep wondering how long before it's the way I was before, and then I read where someone was told it's never going to be like what it was.  I feel guilty because I know how blessed I am that I can just take a pill every day instead of what I know others have to go thru.  I wonder if I'm a hypochondriac sometimes.  I know I can certainly be a whiner!  I have a very supportive family, yet still feel alone in this.  Anybody else out there as crazy as me??!! 

[Trey]

Your story sounds perfectly normal to us.  Headaches, dizziness, tired beyond normal tiredness, etc, etc.  That nurse was very wrong.  Others will comment, but what you are experiencing are all side effects of the drug, especially during the early stages (first few months or more).  After several months some of the side effects go away, but some remain, possibly at lower levels.  Things will get better over time, so just be patient a bit while your body adjusts.  But definitely watch for the pleural effusion if breathing becomes hard.  Often a short drug break is needed. 

 

Welcome. 

 

By the way your previous post was lost on a "black hole" page I wish the L&LS would shut down.  No one looks there.  Here is the link to it:

http://community.lls...id/#entry163111

Edited by Trey, 26 August 2014 - 03:46 PM.

[sunshineC]

Thanks so much for replying Trey - to BOTH places.  My daughter showed me your blog after the docs diagnosis.  I've read, and re-read.  It was there I got the link to here.  Thank you!!