7 replies to this topic

[CallMeLucky]

Unfortunately it appears I am not one of the lucky people who can go on low dose Sprycel and maintain a stable response.  This is extremely frustrating and I don't understand why I am having this issue.  I was on Gleevec for about 2 years, was PCRu within the first year and maintained it.  SIde effects were very difficult so switched to Sprycel at 100mg.  Stayed PCRu but started having lots of chest pains.  Lowered dose down to 50mg and stayed PCRu for a little bit.  Hospital changed labs and suddenly I wasn't PCRu anymore (by an entire log).  Repeated tests and numbers continued to trend upwards by 6/13 I was at .02, barely 4 log reduction.  went to 70 mg and 7/13 was .01 then 8/13 .0034 (lab shows that .0032 is their cut off and considered CMR anything less than that).  Assumed I was back on track and 70mg would do it.  SIde effects are manageable.  10/13 results were .005 and now 1/14 results are .009.  Dr has been very clear that technically I am fine, I am still MMR and at this point 4log reduction.  But even though I am in the area of noise with PCR, the trend is clearly on the upward slope for last three results (.003, .005, .009).  He is going to increase my dose to 80mg and see how I feel and if I can tolerate it try to go back to 100mg.

On one hand I know I am in a decent place, but on the other this doesn't seem to make sense, why suddenly does it seem like the CML is fighting back so much.  I was on 50 and everything was fine then it started to climb, we went to 70 it knocked it down temporarily and now it is climbing again.  They did a mutation test a few months ago but could not find anything.  Why would Gleevec, which is a weaker drug have held me in CMR with no problem but Sprycel which is a stronger drug have an issue even as I come back up on dosage.  I hear of so many people on low dose of Sprycel at CMR, it frustrates me and makes me worry.

I have really tried to put CML on the back burner and not make it the focus of my life, but it seems no matter how hard I try to do that, it insists on being front and center to make me miserable.  I have had such a better attitude over the last year but this just keeps rearing its head.  I was on track to be a cessation candidate and now it seems pretty clear that will never happen.

[Trey]

Although some prominent Oncs have said Sprycel is "stronger" than Gleevec, the reality is that it is simply "different".  In many people it works better, but for some it does not.  Where it works better, it overcomes deficiencies of Gleevec such as using a different binding location which avoids the impact of certain kinase mutations, avoids the low hOct1 pump (cellular uptake engine) issue, works in both the active and inactive BCR-ABL configurations, etc.  But Gleevec may have advantages in some people which are not even understood by drug researchers.  The reality is that there is much unknown about these drugs and the details about how they work inside the body.  So using the word "stronger" may not be accurate terminology.

[Marnie]

Hey, Lucky. . .keep your chin up.  Easier said than done, I know.  Sending good thoughts your way. 

Marnie

[Skittles]

Just a thought (and perhaps not a good one but) would you consider going back on Gleevec to see if you could tolerate the side effects and get back to PCRU?  I do remember that you had issues with the side effects but am just wondering if the way Gleevec works is better for your numbers.  Hang there Lucky and hopefully you will soon see a decrease either way.  Skittles

[Tedsey]

Lucky,

I cannot begin to tell you how much I empathize with what you are going through.  A few weeks before I am due for my 3-month check up, I start having panic attacks all night long.  I think my heart will give out long before the CML has a chance to get me.  I know you know this, but sometimes it feels better hearing someone say it.  .003, .005, and .009 are basically the same.  Those are stable numbers and may not be an increase.  As for the going back on Gleevec, mentioned by Skittles, with the new lab, you may have the same PCR values (i.e. slightly detectable) on Gleevec too.  Often I feel like I am playing "head games" with CML (so to speak).  I just want it to go away.  But I feel confident that I will never be a candidate for drug cessation, so it is not something I grapple with.  The thought of reducing my dose from 100g Sprycel seems daunting.  I guess I will just wait for my 1st PE to decide that for me (sadly, I feel it is inevitable--but that is me, I naturally choose catastrophic thinking over the best-case scenario). 

Anyway, I feel OK being on this drug the rest of my life.  Little secret, and maybe I am taking a risk putting this out there publicly--I destroy the Sprycel label (anything distinguishable, i.e. drug company, dose, etc.) with each shipment (and I shred, with delight, the paperwork that comes with it).  I harness my hatred for the disease and anger at getting it by taking it out on the outside of the little plastic bottle (that contains the life-extending gems inside).  I don't suggest anyone do this, but it is a ritual I go through when I get the 3 bottles every 3 months (thank God).  It makes me feel a little better, (like I have some control, heh, heh).  I am still so greatly embarrassed my body got this disease.  Living a "healthy lifestyle" is somewhat of a myth, if not totally ambiguous, as far as cancer is concerned.  I feel I was duped into thinking I was entitled to old age--so angry.  Now, I eat what I want.  I wish so hard for the day that we all can destroy our pills.  But it's not today.   

I like life and if that means I have to take this pill, so be it.  I hate CML (and cancer, in general), just as much as anyone here.  As I see it, you have failed nothing.  You have always been strong and will continue to be no matter what.  The only golden ticket is to "outlive" CML, (to coin the term from Roald Dahl since my kids and I just read Charlie and the Chocolate Factory).  I would love to make it to 78 (avg. US female lifespan)!  What a miracle it will be if that comes true after being on TKIs for decades.  I will have won.  If this is your fate, and I feel it will be, you will win too.  (Realistically, all humans lose, but some of us are lucky to have a longer go at it.  I'd like to be one of those.  I want you and all of us to be "one of those".)

Take care.  My thoughts are with you.  No one wants to see numbers go up no matter how small.  For many, it invites additional, unwanted, abusing, mocking, torturing, mental demons (as it is, it is extremely hard to live with the ones who reside full-time).  Hence, my anxiety attacks.  As awesome as a negative PCR is, it opens up another whole can of worms.  The fear of becoming detectable again and dying as a result of this cruddy disease is always there, (and I continue to make this situation worse as I torture myself with the doubt that I was ever really CMR in the first place).

I wish you peace (or at least a  longer trip to the middle ground where one is less vulnerable to catastrophic thinking),

Teds 

[CallMeLucky]

I'm just really frustrated, I don't understand why things are going the way they are, seems to be the opposite of everyone else.  All I hear about with CML is people lowering their dosage and stopping the drug.  I try to lower my dosage and my numbers keep creeping up.  I used to come to this site for support, but now many of the posts leave me feeling frustrated.  I know that sounds selfish, I'm happy for everyone that is doing well and able to go that path, just not clear why it is not going that way for me.  I have this other chronic pain condition that has developed over the last two years and it has really taken a lot out of me.  I go from Dr to Dr but no one offers anything, they say if I'm lucky it won't turn into prostate cancer, but even that they have no idea about.  I tried to put it all behind me, I tried to move on, but it just sucks me back in.  I feel like lowering my dose was a mistake, sometimes I feel like switching was a mistake.  I feel like I have set myself up to develop resistance by only using a lower dose and now even though I am increasing, even if it works it may only work for a short time, then what?  Switch to something else and hope for the best.  Go back to Gleevec?  What if Gleevec doesn't work anymore?  These are all the things my first Dr warned me about but she was non-caring about the pain and side effects that I couldn't trust her judgement.  She said "don't switch" then she said "don't lower dose".  I thought I was educated based on what "everyone else" was doing and now I realize I had no idea what I was doing.  Sometimes it just doesn't seem worth it.....

[Marnie]

Hey, Lucky. . .

Lots of people post their good results here, but there are many more out there who don't post anything.  I've been a slow responder to TKIs, and I've felt the same frustrations that you are feeling.  I'm off Sprycel right now, due to a second pleural effusion, and I'm getting really paranoid about my upcoming bloodwork. 

From all that I've heard, there's no reason that you couldn't go back to Gleevec if you wanted to.  I also don't believe there's any research to support the idea that lower dosage causes resistance.  Hang in there and try not to get discouraged.  Those of us who are turtles seem to be doing well, even though we don't have the awesome numbers that the rabbits have. 

Do something nice for yourself in the next couple of days.  Sounds like you need it.  Hmmm. . .maybe a new motorcycle?  Or at least a nice dinner out. . .

Marnie

[Tedsey]

Dear Lucky,

Some people have to go off TKIs for quite a while for many reasons.  They don't have a choice.  I have not read where their numbers do not bounce back, hence the mention of your first doctor.  Don't doubt yourself.  You are very knowledgeable.  You have taught me much.  If your numbers are going up, it has nothing to do with the decisions you made (and they were not all yours anyway--your oncs had a say).  It is always nice to hear good news, but it can be very difficult when we are struggling.  I struggled for years (I still do--don't write about everything).  I think I can understand.  Only time will reveal what is ahead.  I think Marnie is right.  You need to treat yourself to something nice. 

All the best,

Teds