5 replies to this topic

[mikefromillinois]

I knew all that high school Latin would someday pay off!

 

Thought I would provide an update on my participation in the "LAST" clinical trial that I joined in the spring of this year.  By the way, LAST stands for Life After Stopping TKI's.

 

Background: diagnosed in July of 2011.  Sprycel August 2011 onward.  Reached and maintained PCRU in about nine months.  Stopped taking Sprycel (in the trial) the beginning of June 2015.  Have been tested monthly since then and just completed my fifth month of treatment free remission with my fifth PCRU result.  Really starting to feel like my new "no Sprycel" life is going to be permanent.

 

The main reason I'm writing this is to share my Sprycel experience with regard to fluid retention and breathing issues.

 

On Sprycel I gained 40 pounds - and on my frame that is a LOT.  Lugging around the extra weight caused other problems.  One problem I had for a long time was shortness of breath (and fatigue).  I blamed the breathing problem on the extra weight.  Within about a week of stopping the Sprycel the shortness of breath COMPLETELY disappeared and has not returned in five months.  Right now I have NO DOUBT that because of some Sprycel fluid-related dynamic in my body my heart/lung function was being severely compromised.  I never would have figured this out if I did not join the 'quit' trial.

 

Because I blamed the short-windedness on the weight I did not mention this to my onc.  Hindsight now tells me I should have.  My advice to everyone is that if you have heart or lung related symptomology and you are taking a TKI, do yourself a favor and report it to your doc.  And if you are not 100% confident in his/her course of treatment get another opinion.  Heart and lung stuff is serious business.

 

Please don't interpret this post as Sprycel bashing.  Quite the opposite - obvoiusly Sprycel did a tredendous job controlling my CML.  I just wanted to point out a risk I was blind to while taking the drug, (mainly because I 'played doctor' and diagnosed my short windedness myself without reporting it to my doc).

 

If anyone has any questions about quitting or about the inner-workings of the trial feel free to post here or send a private message.

 

Happy Halloween!

 

 

[scuba]

Mike - Great note. Concerns about Sprycel is the main reason I decided to try stopping as soon as I could reasonably expect success.

But the other idea is drug reduction. Many patients could have the same success without having to take so much Sprycel as they are prescribed now (100mg full dose). A so-called maintenance dose at 1/2 to 1/5 the normal level might avoid a lot of the pleural issues and still keep CML in check. It's unfortunate that many doctors don't "customize" treatment for their patients that balance response with side effects. 

[Marnie]

There are doctors out there who are willing to work with patients with regard to reduced dosage.  Patients need to be informed and make their own decisions, rather than assuming that their doctor is "God" and knows everything. 

 

I had 2 pleural effusions on 100 mg Sprycel.  I talked with my doc about reducing dosage.  At that time, there wasn't much out there about reducing dose, but he was willing to give it a try.  We've been working together to find the right balance.  High enough dose to keep the cml at an acceptable level, low enough dose to keep the pleural effusions at bay.  Right now, 50 mg seems to be the right balance.  If my numbers drop. . .they are at a slow crawl. . .we'll consider less.

 

Maybe I'm lucky and have a doctor who stays abreast of what's going on.  My point is that patients need to be active in their treatment, rather than assuming that the doctor always knows best.  People who are active on this site, whether it's posting or just following, are equipped with a lot of information.  Talk with your doctor.  If he/she isn't a doctor that you can have a good conversation with, then it's time to find a different doctor.

 

Marnie

[Kali]

Mike, your trial success is providing great hope for you and others. I hope your good results continue.
That is good info you shared about Sprycel.
Marnie, you are a great encourager for us to be proactive with our doctors! Good stuff!

[Trey]

Mike,

Your breathing issues were classic signs of pleural effusion.  The fluid compresses the lower lung area and reduces lung expansion and air intake resulting in lack of oxygen.  You also probably had some pericardial effusion (fluid around the heart) which can be even more serious.  Your fluid retention issues were pretty severe and a drug holiday was required anyway.  So your cessation timing was correct along with being PCRU for about 2 years.  These trials will provide much needed data about cessation. 

[mikefromillinois]

One lesson learned for me on this was that these issues are often not like a light switch where you either have the "condition" or you don't.  They can be incremental, slowly getting worse over time so they aren't as noticable.  After about a week off Sprycel I really felt as if my lung capacity had doubled.