11 replies to this topic

[JoshLee]

Hi All,

      Thanks in advance for your words of wisdom. I seem to find myself in a "grey area". I am doing relatively well on treatment, but my PCR hasn't really moved since July. If I were at a low level, I wouldn't be complaining. I do have CCyR, which I achieved around 11 months, and through bone marrow biopsy at 14 months post dx, I have continued to hold on to it. My log reduction has been around a 1.0...Which I am SO CONFUSED BY. Most studies I read tell me that I am at a higher risk for losing this response because I have been on a plateau for 9 months basically and haven't really had a 2 log or even 1.5 log reduction along with it. My doctor is only now starting to look into this and a few of the experts I have emailed directly have told me very vague things like: PCR doesn't really correlate to CCyR, but I have read papers they have written that have stated otherwise. I don't want to be paranoid, but I do want to be on top of this as I want to live with this disease for as long as I can. Do you all think I should be very aggressive about switching to Sprycel and how should I go about it? My onc. doesn't see me as doing poorly, but he doesn't think that I am "typical". It makes me feel a little uneasy and I don't really know what I as a patient should do to help or advocate for myself in this particular situation. Thanks, Josh

[Trey]

It could be that the control gene (G6PDH) used by your local lab doesn't work for you.  The other lab had better results.  G6PDH is not used much any more for CML PCRs, and ABL is now the standard.  See if your Onc can use a different lab. 

We previously discussed switching to Sprycel, and I believe it is a reasonable choice in your situation, although not an absolute necessity.  I mainly think it is a good idea in your case because you stress over this so much that a switch would let you exert some control over the situation.  Sometimes the right reason is not always in the numbers.

[Happycat]

Josh,

Trey has some wise words there for you. It's not always the lab numbers that matter most. Sometimes it's more important how YOU feel, whether it is quality of life,, or peace of mind.

Traci

[Marnie]

Peace of mind is worth a lot.  Srycel has worked well for me. . .I stalled out on Gleevec (with lower numbers than yours) and felt a lot of what you are feeling, I think. 

Marnie

[JoshLee]

Thanks for your responses. I guess at the end of the day all of this boils down to that fact that I am AFRAID. I of course don't like admitting these things, but doctors seem to be reactive instead of proactive. I really wish my oncologist just agreed with me right away and said, "Okay, it's been 9 months, nothing has changed, lets try something new." Instead I feel like he wants to wait for my disease to progress before he'll do anything in terms of, well....TRYING TO SAVE MY LIFE. Believe me, I am grateful that I have responded at all, it's just that I've done enough research to know when something is durable and when it's not likely to be. I can't imagine going into my next PCR off of a 9 month plateau and having my onc say..."You dropped a log!" I just don't think that's realistic. If it was going to work, it seems like I would be seeing some steady and small improvements in my PCR....Correct me if I am wrong. I am a control freak, but it's mainly because I love my family, I love my job, I love my girlfriend, and I love my friends. I want to be here for all of those things and not let this "dumb" type of cancer snuff me out because my oncologist wasn't proactive in his approach to treating me. I wish I was one of those people that just blindly followed there doctor, but I am treated in bumble bram Northern Wisconsin and I have been on high alert with this stuff since this nightmare began. It's just very confusing.....While my Cytogenetics have improved, my PCR has flatlined and even ticked back a little. If I was at .007 or something I wouldn't care, but I am 0.22. No zeros and no improvement over a long period of time. There are people posting all the time that have that PCR after 3 months. I am just not going to rest until I get some solid answers from some professionals about what it going on with my CML.

[Marnie]

Josh, your story feels similar to mine.  I was a very slow responder to Gleevec.  After 2 years, my PCR flatlined and then started rising.  I had slowly gotten down to .059, but then rose to .100 and bounced up and down for a bit.  My doc wasn't too concerned, but I (control freak like yourself) got pretty stressed about it. It's difficult not to, when you keep reading about all of the people who reach PCRU so quickly on this board.  You DO need to keep in mind that there are a lot of people out there not posting their results, because their results are slow. 

That said. . .  my doc wanted to wait for another 3 months to see if my PCR would drop, but I told him that I wanted to switch to Sprycel.  He suggested Tasigna, because he had patients on Tasigna, but none on Sprycel.  I was pretty adamant about trying Sprycel for a couple of reasons.  It works "more differently" and I didn't like the dosing/meal schedule of Tasigna.  My doc agreed to write a script for me.  My PCR numbers dropped significantly after 3 months on Sprycel.  My first Sprycel PCR was .002.  I've had some ups and downs on Sprycel (numbers bouncing around a bit), but finally reached PCRU a week ago (almost 3 years since diagnosis).  I'll feel a lot better when I get a second PCR result at zero.  I've had some test validity issues, because I've been bouncing around on insurance plans since November, and haven't had my PCR sent to a consistent lab since then.  That stresses me out, but nothing I can do about that.

You seem like you are well-informed and that you have done your homework.  You are wise to take charge of your own treatment, and I know the frustration of not quite trusting in your doc.  I'm on my 4th oncologist.  I need an oncologist where I come out of the office feeling like he knows AT LEAST as much, and hopefully more, than I do about current cml treatment and what's happening in reserarch/trials right now.  I'm lucky that Denver is a pretty big place with lots of doctors to choose from. 

It might make you feel better if you heard from a cml specialist.  I e-mailed both Dr. Druker and Dr. Shah and got an immediate response from both of them.  They seemed quite happy to discuss my concerns.  You might give that a try.  It would at least help with your frame of mind.

All the best,

Marnie

[Happycat]

Josh,

Just a quick comment. I see a difference in the perception of risk, or willingness to assume risk, between you and your doctor. To him, the risk might not seem as great, because he's seen it before, or has a greater base of knowledge he's working from.  The risk for him is "I lose a patient". To you, the risk is "hey, I could lose my life!". Quite a bit of difference there.

Plus, you have to factor in how comfortable each of you are about risk in general. For all you know, your onc may be very accepting of risk. Or he might actually be risk averse, and sees sprycel as likely to cause more side effects for you, hence the safer option to him is wait and see how your numbers trend.

It's really a matter of how you see the risk. Your onc might see if one way, but in the end, it is your life and health, so go with the level of risk that is acceptable to you. You need to be able to sleep at night.

My two cents,

Traci

[hannibellemo]

Traci,

I liken that to the chicken and the pig when it comes to my breakfast of bacon and eggs. The chicken (doctor) is involved, the pig (me), on the other hand,

is completely committed!

Pat

[JoshLee]

Thanks for all the responses. I think for me it is all of the "watching and waiting" which is just starting to get to me. I would be okay if I were stalled out at a low level, but how do I know if this isn't just delayed primary resistance or something like that, but just at a molecular level? I feel like if my PCR were to move it would've moved by now. It just makes sense to me that the Tasigna isn't able to attach itself and kill. It has been able to to some extent, but jeez, why so pokey? Is it just that I am not metabolizing it properly or what? I don't want the next move it makes to be one that throws me into accelerated phase or even blast crisis. Just typing those words is scary. Honestly, has anyone seen a patient stall out for this long? Honest answer are accepted, not matter how frightening or blunt you have to be.

[Marnie]

Josh . . .your mailbox is full!!  I sent you a p.m.  but it bounced.

Marnie

[JoshLee]

emptied!!!

[Trey]

Yes, I have seen many people stall out.  Most begin the downward trek again on the same drug with no changes.  Some switch drugs and do better.  A few have to wait years to see MMR.  A tiny fraction do not respond to any type of drug therapy.  Your response does not fit the profile of the "tiny fraction" that I have seen over the years. 

There is a very good reason for the stalling phase during drug response.  The drugs kill off the lower level leukemic cells fairly easily.  Then the higher level cells can be more difficult, which is where the stall occurs.  Uptake issues can also impact this.  But Sprycel is the best killer of higher level leukemic cells.  Take charge and try it.