26 replies to this topic

[CallMeLucky]

Just got back my PCR results and I am not thrilled.  They are not terrible and I am not worried about progression or anything like that at this point, but it's not what I want, basically it looks like I may have slightly lost my MMR.  To aggravate the issue I am really not doing great with side effects, I am quite miserable most of the time with muscle pain and overall just feeling lousy.  Things are not going well in my life and I was at least hoping to maintain CMR and justify that it was worth it because I was getting an optimal response.  I left a message for my doctor that I want to switch drugs.  Obviously there is something a bit stubborn about my CML which was the last thing I wanted.  I guess I'll switch to Tasigna.  Hopefully it won't do more harm than good, maybe I will get lucky and my side effects will lessen and maybe I will be able to get a sustained CMR.  This really sucks, talk about a way to ruin an already lousy day.

PCR History

07/10     1.2%

10/10     0.25%

12/10     0.367%

03/11     0.0081%

06/11     0.0%

09/11     0.00084%

12/11     0.0%

03/12     0.004%

Clearly this is a step in the wrong direction, I don't like the way things keep bouncing around.  I would have accepted 3 zeros, but only 2 zeros is not acceptable to me at this point.  This disease is not relenting at the low level, it is still fighting trying to grow and spread.

[CallMeLucky]

I just got off the phone with my doctor.  She insists this is not something to worry about and that it is not a justification to switch drugs.  She says that she will switch me to Tasigna if I ask her to because of my side effects, but from a disease standpoint, there is no justification.  She says she knows it is hard to get test results like this but that there is a considerable amount of variability in the test and this is not bad.  She said it would not be something to worry about until it went to 0.4%.  Unfortunately they are not on IS and it makes it very difficult to compare.  She says these results are still MMR and everything is fine.  She says I can switch for side effects but there are no guarantees anything is going to be any better and I would just be trading some side effects for some others.  She knows about all the tragedy I have had in my life lately and she said I should take some time to think this through.

So what would you do?

[jrsboo]

Dear Lucky,

I am so sorry that you keep having so much happen.  I wish things were easier for you, and a clear path would open up.

What would I do?  I would go somewhere very quiet and still (for me this is usually out in nature, next to moving water surrounded by trees).  Quiet all my thoughts.  And ask myself what is the best course of action.  Can I live with these side effects?  For how long?  I would probably give myself an end date, i.e., I will try to live with these side effects for 2 more weeks, but then if I am not better, I will ask to switch.  And then monitor the situation.

I know from reading this site there are all sorts of side effects from each of the drugs.  I also know that we are so individual in our reactions to the drugs, that it is hard to see into the future how you will do.  But you can also always go back to what you are on now if the other drug is worse.

Again, I am so sorry that your journey is experiencing such road blocks.

Warm Hugs,

Caroline

[Tedsey]

Dear Luck,

Sorry you are having such a crappy day.  Very understandable.  Although the PCR is the only thing we have, and any flux upward is exasperating, it is not a completely accurate test.  The bounce is probably normal like your doc said.  However, I think that you are right about a drug switch.  You could always go back to Gleevec if the results are similar and the side-effects on T are too much.  I am not sure what your onc meant (a while back) when she said she didn't want you to blow through all of your options.  If the CML is going to progress what would the drug matter?  The hope is that the drugs slow down progression so much (or stop it) that we will outlive the disease.  Not quite sure about her logic on that one.  Nevertheless, I can totally relate to the anxiety of an upward tick (been there, done that).  It couldn't hurt to change drugs to see if you could get a better response.

Hope something wonderful happens to you today to blow this all away.

Hugs to you and your fam,

Tedsey

[Lizzybee]

I haven't been in this fight as long as you, but your response looks great to me.  But my pcr was considerably higher at 3 months than 2 months, so I know how disappointing it is to not get the results you want.

I am on Tasigna, but my onc has offered to change meds because of the side effects.  But I know from reading here that all the TKIs have side effects, so I'm not ready to switch yet.  I am going to give it one year (my 9-month pcr is coming up next month).  If I don't achieve MMR, I will definitely want to switch, no questions asked.  If I do achieve MMR, I can switch to a different med knowing that Tasigna works for me and I can come back to it if the alternative is worse instead of better.  So I guess if I were in your shoes, I'd consider switching, knowing that your current med works and you can come back to it if the side effects of Tasigna are worse for you. 

[Judy2]

Hi Lucky,

I am so sorry you are having such a hard time. I have said many times it is not just about living but living well. If you do decide to switch meds and find the side efffects are worse with the new med then you could always go back to Gleevec. Lucky, why would you switch to Tasigna and not Sprycel? I thought Gleevec and Tasigna took a similar pathway and that Sprycel was more potent. I could not tolerate the side effects of both Gleevec and Tasigna yet I am able to manage them quite nicely, with the help of a little prednisone, on Sprycel. As Caroline said, give yourself some time to think things over but know that if you decide to switch you do have the option of switching back. You have been through a very rough time but I hope you know we are all here for you and you will not go through this  journey alone. Wishing you better days from now on.

Judy

[Rissa]

I think your results look good, but I do understand your frustration.  I guess if the side effects are bad, then maybe you should switch.  Are you going through a cycle of pain, or is it constant? 

[pammartin]

Lucky,

You have had more than your share, I have no words that will make you feel better, wish I did.  I hope the sun shines on your face today.

Take care

Pam

[Skittles]

Hi Lucky,   I'm sorry you have had this disappointment but wanted to let you know that I actually bounced out of MMR and then 2 PCR's later I came up  PCRU till now (2 years now) so hang in there and don't give up.  These test results do bounce around and even though I know in my heart that I would flip if my PCR came up even a tad I also know the doctors like to wait and see before changing TKI's.  I am on Gleevec too and often wonder if I had to switch which I would chose. It seems to me that all of the TKI's carry side effects and the severity varies from one person to another.   I'm rooting for Super Good News on your next PCR.!!   Skittles

[scuba]

Hi Gary,

You are in the "noise" region of the testing. Absolutely nothing to worry about.

But the side affects issue is a different concern. If Gleevec is causing you that much problem, perhaps a switch is in order.

Tasigna is designed similarly to Gleevec but fits the ATP pocket better. Sprycel works differently than the other two as well as works higher up the cell chain.

It is possible, Gary, that you could re-achieve CMR with low dose Sprycel since you are already at PCRu for the most part. There is a distinct chance that 20 - 40 mg. Sprycel for you would alieveate the side affects (I have none that I feel) and keep you undetectable. And if it did - you would have found a good regimen. As of February I was at 0.06% PCR and that was achieved solely on 20mg. Sprycel (I do take the Curcumin, however). I will be curious at my next PCR test (May) if I drop another 1/2 to 1 log.

The risk is that low dose doesn't work for you and you have to either take a higher dose or switch to Tasigna... or just resume Gleevec.

The good news is you have options - and can experiment if you want since your CML is very much under control.

[CallMeLucky]

Thanks everyone for the support and comments, I think it is very hard right now with the stuff I have going on in my personal life and I was just really counting on things staying at CMR so I had that "one less thing to worry about".  It also doesn't help that I have a respiratory infection going on for about 10 days now and it is taking its time clearing up.  It weighs on you more when you actually feel "sick".

I have to really give this some thought.  In one sense I am practical and figure I should just stay where I am.  I also know that I haven't honestly done all I can to try and make myself deal with my side effects.  Gleevec has curbed my appetite something fierce and I know I am not eating enough.  It is bad and it can be contributing to the fatigue and muscle pain.  I know I have to try and get back on a regimen.  I am not eating poorly, I'm just not eating much at all.  From a caloric intake, I am lucky if I am hitting 1000 calories a day.  I am into fitness and I know how bad this is.  I just don't feel like eating and then I don't feel well and it all just snow balls.  There are things I need to do and I feel like if I jump to Tasigna and I have problems, I will continuously kick myself.  I know I can go back to Gleevec, but I have to keep in mind the very real issues I have going on in my life.  I really can't afford to miss anymore time at work and if I go to my wife and tell her I am switching drugs in the middle of everything we have going on, I know she will support me but it will be an additional stress on us and right now we don't need anymore stress.  To be honest, the strain on my marriage has been very real with everything going on.

Michael - with regard to Sprycel, in order to do what you suggest I would probably have to jump on a plane and go to see Cortes at MD Anderson and there is no guarantee he would dose me that way.  There is a difference between low dosing someone with cytopenia and low dosing someone with fatigue and muscle pain.  My doctor was clear in no uncertain terms she would not prescribe low dose for me based on where I am today.  I can go find another doctor, but sometimes you have to be careful about kicking down doors, there may not be a floor on the other side.  If this is intolerable, I have a course of action to follow and I would have to go through that before playing around with off label dosing.  As far as Tasigna vs. Sprycel, my doctor said she has been seeing a lot of PE with Sprycel (maybe because they are dosing too high) but she would rather I go on Tasigna.  We actually had an interesting conversation today where I said to her "a year ago when I first came to you to talk about switching for side effects, I asked you how other people did when they switched and you told me "they tell me they got their life back when they switched"."  She responded "yes I did say that a year ago and having seen what I have seen over the last year as I prescribe nilotinib and dasatinib as first line treatments, I no longer feel it would be in your best interest to take that chance unless it is absolutely unbearable."  So obviously she is seeing things as more people switch to the other drugs that makes her think - as she put it "it's not going to be a better bowl of cherries".  I don't know what to do at this moment other than just go home and sleep.  Unfortunately I can't do that because starting on Friday's I pretty much become a single parent for the day and it tends to carry through the weekend.  Oh well at least I am alive to complain about these problems - I could have acute leukemia!

[scuba]

Gary - You write very well. As I read your reply I felt your passion around the issues CML brings into our lives. You are quite correct when you say "at least I am alive to complain about these problems ...".

The key for you is the side affects. There is a solution for that but it will involve more "collaboration" with your doctor (or other doctors) to find the right mix. It is worth it for you to focus on that (and not so much on response - you have the response!).

You should feel free to e-mail Dr. Cortes and ask him about low dose Sprycel as a side affects management device and whether he prescribes lower dose as a potential solution. Also - he may even be willing to e-mail your doctor and "collaborate". He did that with my Primary doctor when it came time to decide on low dose vs. normal dose with stim shots. You know how that turned out.

My point is to not just accept what is - and become master of your care.

Of course you have to follow what you feel is best and everyone here can only share their experiences (and that is all to the good!).

p.s by the way - I do take a lot more Magnesium now and that took care of my muscle cramps (that I had on Gleevec). 400mg. a day. I continue to take it (more or less, not every day) whenever I feel cramping coming on and it usually resolves. It may work for you.

[Happycat]

Lucky,

Since you asked, I will reply. I agree with your doctor that this is just statistical noise in the PCR. I wouldn't worry about losing response from these numbers.  The PCR is a way to amplify the number of cells (or the DNA really), just so they can get enough to do a decent count. The amplification creates more distortion (noise) in the baseline, so the numbers tend to bounce around more. Think of your PCR numbers as having big error bars.

You'll have to decide if the side effects are bothersome enough to switch drugs. It's a crapshoot to me. Could be better, could be worse.

I'm sorry to hear that all the upset in your life is making things tough for you and your wife. You've both had a hard time. 

Traci

[Marnie]

Hey, Lucky. . .wish I could say something to help.  Sounds like you've got a lot going on and a heavy load to carry.  Sprycel has been great for me. . .though my numbers are still not where I want them to be, which is disappointing.    Your doc sounds pretty knowledgeable and thorough, so that's good.  Ultimately, though, you are the one that needs to make the calls that are right for you.  Good luck as you work through things, and I hope that life will get better for you soon.

Marnie

[Lori's okay]

HI Lucky,

I have so appreciated all your posts on this board.

And, have felt for you in the challenging family losses you've been through lately.  I do wonder, when we deal with this illness long term how much stress affects our level of response.  Could it be that this stressful time, which will pass, is part of the reason for the uptick in PCR?  Seems that would be a hopeful thing, hoping it will go back down as things settle down a little.  Just a newbie wondering.  And hoping this all gets  very much better! 

On switching drugs, I am sensitive to almost everything a person can be sensitive to, and the regular dose of Tasigna was very hard for me, but I'm tolerating the 450mg a day dose quite well....one more data point for you.  Will get my first FISH/PCR in a few weeks!

Good LUCK with it all,

Lori

[Susan61]

Hi Lucky:  I feel so bad that your upset, because you have had so much to deal with lately.  I hope reading Skittles post to you made you feel better.  Sometimes these blood tests are not accurate, and then later  you get a real good one.

Its hard for me to talk about any of the other drugs, because Gleevec did it for me.  I still get anxious everytime I have to get that PCR test, which is coming up in July.  I have to go get my routine blood work in 2 weeks, and I worry about that also.  Everything your feeling is so normal.

     I am going through a lot of stress myself, and stress is the bigger killer than anything else.  Lets try to relax somehow, and just trust that everything will be looking better real soon. 

    I hope your wife is doing better since all she just went through also. 

    Just think that your fortunate that there is something else for you to switch to if you have to.  Your not eating, could be stress related too.  I know because it happens to me.  I know I have to eat a decent meal when I take that Gleevec or I get the nausea. 

   Your still holding with your numbers, so just try to wait for your next PCR to see what is going on.  I think you will get a good result.

[ChrisC]

Hey Lucky,

May I quote a family-friendly string of curse words I memorized from MAD magazine when I was young: "Dad-blast the gosh-darn blankety-heck!!"

Or the always sincere term, "Buuuummmmmer."

Hang in there, fume about it here, and know that you have lots of invisible friends rooting for you everyday.

Wishing you all the strength and resources needed to get through this tough time,

ChrisC

[jjg]

Hi Lucky,

Sorry things suck at the moment!!!

I've just gone through a period of high dose gleevec which was really unpleasant.  The whole time I had all my doctors telling me I must put on weight and it was just so hard to eat. Although I have failed miserably with putting on weight I have maintained which given all the foods I really didn't want to look at it is not a bad effort. Maybe some of the following might help: some times in the day are always worse than others, for me it was the 6-8 hours after glivec, I just gave up on these times for eating so one less thing to stress about. By mid afternoon I wasn't hungry but if I slipped a little snack in or sometimes just a drink I could often get started  and eat much more than expected. Snacking can help you avoid getting to the point of being too low on energy to eat. I've never been a chocolate person but in the last few months I've had a little square of chocolate quite often for that reason. I also needed to organize my afternoon snacks before taking glivec with breakfast, post glivec it was just too hard/yucky. I also often ate dinner in two bits but never by putting the full plate in front of me. The other thing that took a while to catch on to was that some foods suddenly become no good and you just shouldn't fight it as you will just become more negative about food in general. Finally these things are always cyclic, if you have a good day eat as much as you can.

The other thing is have  you be come deficient in anything (Michael mentioned Magnesium)? I've found it really hard to eat dairy recently and my last bloods showed low calcium which apparently can also cause cramps.

I also asked to change drugs but was told no. My situation is different both because the high dose is only so we can stop treatment to try for a pregnancy not for response reasons and also the regulatory situation in Australia (BTW Gerry/Pin if you are reading, word from the doc at Peter Mac is that there is good news on 2nd gen TKIs coming April 1st). One thing the doc discussed is that each drug has rare but potentially life threatening side effects. For me and for you we have already established that we don't get these really serious side effects on gleevec but of course we could still get them on the other drugs. Personally I was only on 800 for 3 months so it was just a suck it up princess situation but long term I would have jumped ship and taken the risk once more. We all took that risk when it was unavoidable, the first time we swallowed a TKI. I guess the point to weigh up now is that we don't take avoidable risks lightly. When we have a stable response the docs seem to consider us as low risk patients, which kinda says they expect good outcomes for us and don't want to stuff that up.

Hope something good happens to you soon.

Josie

[Trey]

I would give it one more PCR then review the issue again.

[luvmybees24]

I am sorry to hear that. Your last PCR is the # I have right now but I am only 4 months out from DX. I am on Tasigna and I have very mild side effects. My hair seems to fall out a little more than it used to ( but i can't notice it by looking). My leg hair is almost non-existent (Can't complain about THAT one!) and I have dry skin. That's it. If you decide to go with Tasigna you may luck out and have less side effects than what you are on now. (I assume Gleevec?)

Laura.