33 replies to this topic

[Badger]

I realize that many people do great on Sprycel, but that crap almost killed me. I had pleural effusion even on a half dose, and felt like garbage the whole time I was on it. I've been off it for three months now and am finally feeling normal again. I switched to Tasigna and, of course, my lipase levels went south. I've been on a half dose for two months now, my lipase is normal, and just got my best pcr in two years. (Yeeha!)

[hannibellemo]

So glad you are doing so much better, Vicki!

I was off until my x-rays were clear - 7 weeks! The prednisone really took care of the pleuritic inflammatory pain that I, for some reason had. I've not heard from anyone else who had the pain, too, just the shortness of breath.

I was really so grateful to hear about the experiences of others, the great strength of this board, and was able to be a full partner with my onc on this. He only has a handful of patients on Sprycel and I was his first. He has many on Tasigna and most on Gleevec (I refer to them as his "boring" patients). Has never had a PE until now.

I've been on 50 mg a little over 2 months, will have my first PCR since the PE the end of this month. Hope I've regained MMR but I won't be too surprised if I haven't since I seem to be a slower responder than some.  Feel pretty good but the heat has gotten to me this summer - I'm sure many of us are suffering.

Take care, keep us posted! Don't go back on too soon; give this a chance to be at least all but gone.

Pat

[VickiW]

I have the chest and back pain over the ribcage too.  Or more accurately, I did have the rib pain for quite a while (since last winter til mid June) but we couldn't figure out what it was because all the labs etc. looked good and the original xray last August showed so little fluid I wasn't even told about it.  I could make the pain go away when I pushed on my ribcage so actually I just wrote it off as another "glitch" possible bone/muscle pain from the Sprycel, Leukemia, or?  Onc wasn't worried so I wasn't.  Chest pain has been mostly just a "nag" with an occasional sharp pain (nagging ache right now).  Thank you for sharing what you have went thru, gives me a better idea of what I might be facing.  I'm not sure, guess I will ask him, but I might be my Onc's first Dasatinib patient too.  I think I may be his first PE too.  Well, at least this should help others behind me.  It was caught and is now being dealt with, that's what matters.

Made my chickens happy too I got out there and cleaned their coop yesterday.  Wasn't nearly as bad as I thought it would be (good chickies) Just have 4 hens that I got last spring and have 3 more coming in a couple weeks.  They are just "eggs and entertainment" no body is going into the stew pot any time soon although I did give them good names just to keep them in line.  Their names are as follows; Stirfry, Crockpot, Fricassee and Soup   Of course I don't have much "steam" today but at least I got my onions harvested, chickens cleaned and enough toms & peppers picked to start canning my salsa tomorrow.

Chris~how come you "assumed" I was over 50 btw?  Not nice thing to do to a lady you know! hehehe.  Actually, made me feel good as I just turned 61.    I know a lady usually never tells but I figure with what we are all dealing with, every BD is a reason to celebrate!

Vicki

[ChrisC]

Great work, Vicki! Carry on, in good health, it sounds like you're enjoying things very well.

But when, and what, did I say about being "over 50"? I read back what I wrote above and ?? Anyway, . . . I too turned 61 a few months ago and perhaps I speak for plenty of Boomers when I say, "What do you mean, you haven't cured old age yet?."

Belated HBD, yes each new deserves to be celebrated in ever greater appreciation,especially with our challenges (not only CML)!

Love your care of the chickens and other growing things )

ChrisC

[pamsouth]

Thanks Badger, for sharing your experience on Sprycel.

Been on Gleevec for 7 years, Onc wants me to try Sprycel.  Onc see patients on Monday and Thursday and does research on the other days.  I think he is looking for some live human guinea pigs, as they probably don't have that many patients on Sprycel.  I should check and see how long Sprycel was in clinical trials and had many people participated.  It is obvious to me that Sprycel is a bad one for the PE.  I talked to my primary doc about that too and she was in agreement with me, stay with the Gleevec and at least wait several years when a new drug comes out, unless you have no choice.  Like when I was diagnosed in 2007 the only choice was Gleevec.  Not in the mood to switch just because Sprycel is suppose to be newer and better.   Newer doesn't always mean better, time and data will tell.  I think sometimes the drug companies and onc downplay the side effects and the toxicity and dealing with low CBC counts and all.

Wondering how long you have been on Tasigna,  and  >just got my best pcr in two years.< was wondering what your PCR was, and also you CBC labs were?

Thanks Pam

[Badger]

I was on Gleevec for 18 months and was at a 3.99 log reduction, and then switched to Sprycel because Gleevec became ineffective. While on Sprycel I went from a 2.33 to a 2.96 reduction (I don't receive the international number). After the side effects became too bad, I stopped treatment for five weeks and then started Tasigna a couple months ago. I've been on a half dose and I went from a 2.96 to a 3.34 reduction. I've had no side effects at all and feel the best I have since I was diagnosed. (Hopefully this will continue.)

[pamsouth]

Badger,

Interesting number, no I don't always believe the PCR numbers, I have 7 years of history with PCR labs and they made not sense, long story, but even the new onc didn't understand them either.

Interesting reading your numbers, you are sort of back where you where on Gleevec at 18 months, and doing well controlling the side effects.

>>I was on Gleevec for 18 months and was at a 3.99 log reduction.

started Tasigna a couple months ago. I've been on a half dose and I went from a 2.96 to a 3.34 reduction. I've had no side effects at all and feel the best I have since I was diagnosed. (Hopefully this will continue<<

So considering all of the above, do you think it would have been better to have stayed on Gleevec even though you plateaued?  Just wondering?  Or did I read something wrong?

PamSouth

[hannibellemo]

Pam,

Badger said he lost response to Gleevec. As I understand it, he went from 3.99 to 2.33 eventually on G and then Sprycel got him back to 2.96. With Tasigna he is back to 3.34. So, no, staying on G wasn't an option.

Pat.

[pamsouth]

Oh, I was thinking backwards, get confused looking at these numbers.

Thanks Pat

PS

[VickiW]

Morning everyone!

just posting and update as promised   Nothing really to report yet.  Saw my Onc yesterday and I still have some fluid on the lungs (don't know about the pericardial~next week) so he put me back on the Prednisone 4 more days @ 20mg and then back next week for another check, chest xray & echo. (Lost 3 /12 lbs. overnight so I guess I did still have fluid!)  Got a feeling there was something he wasn't telling me or maybe he was just not in the right mood from a not so good patient before me.  Did see him at the end of the day, so?  It's just I've gotten to know him so well over these past 5 years I've gotten pretty good at reading him.  Oh, we did do the CBC & chem panel of course and the only thing that shot up was the Eosophils which figures since I have been "cold turkey" on sprycel for over a week now.

Speaking of turkeys, hehehe, I have to scoot now and go take care of the chickies!  Then I have to go talk to my big farmer neighbor.  Ever been woken up at 5:30 in the morning by a crop dusting plane flying literally just above your rooftop?   NOT BEFORE MY COFFEE PEOPLE, PLEASE! 

Have a great day all!!!

[VickiW]

Hi everyone!

sorry, didn't realize it has been so long since I posted a follow-up.  Guess I didn't think of it when I was "cruisin'" along.  Ok, update.  was off the Sprycel for 6 weeks, everything, but a couple of tiny pockets of fluid in the heart, cleared up and I went back on 1/2 dose (50 ml) Sprycel.  My first PCR (6 wks off then 6 wks @1/2 sprycel) came back still with the big"O"

  HAPPY DANCE , whew...... BUT, (don't you just love the "buts" ?) now it's been 4 weeks since the PCR and I am starting to have, very mild mind you breathing problems and tight chest again.  Called my Onc's office yesterday just to give him a "head's up" so has time to think about a "plan B" before my next appointment in 2 weeks.  Didn't get a call back after talking with the triage nurse so I guess that means I am good to go for waiting the 2 weeks.

The worst part of the whole thing is I was off the Sprycel just long enough for all the old side effects to come roaring back full steam when I started back up INCLUDING my hair falling out!!!  Right before the holidays, whoopeee.  I think the worst thing was I got a few weeks taste of what life would be like NOT on the drugs.  No pains, little fatigue, no stomach issues, neuropathy almost non-existant, it was HEAVEN!!!  Only now I know what at 61 I am supposed to be feeling like

I will post what my onc has to say in 2 weeks, promise.  I asked him the last time I saw him what is the "plan B" if this doesn't work to get the paricardial effusion handled and his only response was "all the drugs work pretty much the same way so" and didn't finish.

[Trey]

So your Onc says "all the drugs work pretty much the same way".  Not exactly.  All these drugs inhibit the ABL in BCR-ABL, and also other "off-target" kinases such as c-Kit and PDGFR.  But Sprycel is also a SRC kinase inhibitor, but Gleevec and Tasigna are not.  The most serious pleural effusion comes from the SRC inhibition, although the other drugs can cause lesser amounts of fluid build-ups and edemas through their mechanisms.  But switching to Tasigna could relieve the pleural effusion problem.  Also, reducing to 20mg Sprycel might work given your PCRU status, and could reduce other side effects at the same time. 

I would be curious what your Onc would consider as Plan B.  Probably something medieval.

[hannibellemo]

Damn, Vicki,

Sorry to hear you might still be having problems - of course, that gave me an anxiety attack and all day I've convinced myself that I'm experiencing shortness of breath, too. For some reason, talking about PEs  really pushes my buttons. - I dont' think I've ever felt so bad in my life right before I had the thoracentisis. I love the fact that you can be so upbeat about it. Even though I realize that worrying about something does not make it go away or cause it not to happen, I still feel like it's my job to worry! Drives my DH nuts!

Please keep us informed and I hope you have a grat weekend!

Pat