23 replies to this topic

[ruag8tr2]

I am feeling a lot scared.  I was originally diagnosed with CML in June 2007.  I, like so many others in our group became religious about my treatment plan, this board and any information I could find.  Again, like many others I became complacent about things after some time.  I had been going along in my life like nothing was wrong.  I went from Gleevec (600 mg) to Tasigna 800 in 2011 because Doc recommended.  By that time I was completely confident in my Doc and felt like he knew his business and I still believe he does know his stuff.  Stronger TKI= no leukemia (I hoped forever). 

My BCR- ABL was .000 in September.  Doc told me things were great.  Had another test in January and doc told me that it was .0200 (not sure if this is correct number but he basically told me that it was back.  He recommended a BMB and aspiration (coming Monday) and a trip back to Shands where I had previously seen Dr. John Wingard.  I am really scared.  I know that Ponatinib is out there but am I heading toward Accelerated/blast crisis/T315I mutation?  I am feeling symptoms I had never even paid attention to like little red bumps and itchy skin/scalp.  He is also going to re-check BCR-ABL in one month.  What do you think???

Thanks,

Dennis

[ruag8tr2]

Correction- The recent BCR-ABL test was not in January but rather this past week.  Dont know why I posted January.  Blame it on chemo brain

Thanks, 

Dennis

[jjg]

Hi Dennis, On thing about your PCR results is that 0.000 does not mean that "it" is gone it just means that it is not detectable. The best labs have a resolution of -4.5 log meaning that they can't detect below 0.003 so undetectable actually means less than 0.003. It's kinda picking on words but if you only became undetectable (PCRU) in september it's not that it is back, it never actually left. At the point when you drop below 0.003 you still have approx 1 million dodgy cells left. Once your numbers get so low it's quite normal for them to bounce around a bit - quite a few on this board have had their first PCRU only to have the next test in the detectable range. So if your Feb test was 0.02 then you've gone from < 0.003 to 0.02 which is within the accuracy of the test and not so much to be too worried about, and still a lovely low number. Sure we all hate seeing any increase but some mean more than others.

Wrt feeling symptoms they are most likely side effects of the drug not CML. I recently was off treatment for 4 months (long story) under a lot of monitoring and I got to watch my PCR come up from <0.003 to 24. Only when it got above 10 did I feel anything - slightly elevated heart rate while running (normal resting HR) so something most people would never notice, also a couple of fevers and aching all of which most people would have passed off as a virus or two but were consistent with dx. My cell counts stayed within the normal range even at a PCR of 24 although they were edging high.

You asked what I think (& of course I'm just a totally unqualified person) so, I think that your doc is being nice and cautious. I don't entirely understand why the BMB because if your PCR is 0.02 you wouldn't expect to see anything in the bone marrow. Is your PCR standardized (IS)? I believe (somebody correct me if I'm wrong) that the point at which the marrow is clean (CCyR) generally corresponds to a PCR of 1. Somebody else might know what a doc would be looking for in the marrow (other than running a  BM PCR) when the PCR is so low.

[jjg]

Just had a thought while hanging out the washing (one of those hot summer days where the washing drys almost as quick as you can hang it out) - it wasn't clear how long you have been PCRU. If it has been a long time then I guess it is more disturbing to suddenly have a positive pop up. Still you don't know where your numbers were below the undetectable point. They may have been hanging out at 0.002 the whole time or they may have been much lower.

Hope it all goes well.

[ruag8tr2]

Thanks jjg.  I have been leukemia undetectable since 2008 (I think) and have been .000 for as many times as I have tracked.  This time, not true.  This is why I am worried.  Thanks for responding. 

[Sneezy12]

These numbers are essentially unchanged. Regards, Frank

[Trey]

If you had a mutation, and especially T315i, it would very likely have shown up within the first couple years.  So although not impossible, it would be very rare to have a mutation pop up now.  It could be from a PCR variation (change in lab, or lab changed equipment or reageants, faster shipping time and testing, etc).  I would repeat the test right away and see what happens.  Generally, the kinase mutation tests do not work below CCyR, so that would probably not be worth doing at this time.  Overall you are likely still MMR, so no reason to be overly concerned.

[ruag8tr2]

Thanks for the response.  It certainly makes me feel a lot better. 

Dennis

[ruag8tr2]

Update-

I had the BMB and BMA yesterday.  I found out from my onc. that I had gone from .000 to .291 between September and February.  Is this still not a concern?  Please answer. 

Thanks,

BTW- the doc couldnt get in my bone to do the procedure so they had to do it as a spinal tap procedure.  Boy am I sore today!

[CallMeLucky]

It is possible that you developed some resistance to treatment.  You said you were on Gleevec and then changed to Tasigna, was that change an elective one just because the doctor thought Tasigna would be nice to try?  Seems odd to change if you were PCRU and not complaining of side effects.  Also why were you on 600mg of Gleevec, standard dosage is 400mg.  Why 800 of Tasigna if you were PCRU when you switched, why not 600?  Was there anything high risk about your diagnosis?  Were you in chronic phase when diagnosed?

You said something in your post about becoming complacent, did that mean you stopped worrying about CML or were you saying that you were not being good about always taking your meds?  Not trying to read into it, just clarifying, obviously if you were not taking meds all the time that could have some impact.

The upside is that you have three other drugs in the arsenal that will likely work.  You could even potentially wonder if Gleevec would work since it was working and your problem only started after switching to Tasigna.  While most would expect that if Tasigna was not working that Gleevec would not either, in your case that is not so clear.

There is a very good chance Sprycel could work.  Sprycel attacks the CML differently then Gleevec and Tasigna, so that is a realistic option.  In addition there is bosutinib which works similar to Sprycel and could very well work.  Lastly there is ponatinib, which is the big gun and would very very likely work.  So while this sucks and it is not what you would ever want to see after years of being PCRU, there is very good chance that this will not turn into something really bad.  Another drug will likely return you to a controlled MMR, possibly PCRU and things should hopefully get back to normal.

Best of luck, please keep us up to date on how things are going......

P.S. Did anything change in your routine with regard to things you ingest?  Any new supplements or changes in diet?  Just something to consider in case you are inadvertently taking something that is blocking the Tasigna.

[ruag8tr2]

Call Me Lucky (first of all- cool name- CML)

Thanks for your response.  I did not reach (to my knowledge) PCRU on the Gleevec.  He started me on 400, then went to 600 and then the Tasigna 800.  I have had no real side effects on any of the drugs.  There was nthing risky about me at diagnosis and it was done in the chronic phase. 

As far as the complacency- I took my meds.  I missed the meds for a few days in January (in the hospital- unrelated).  I think it was four days.  I had a blocked small bowel from a previous surgery adhesion.  Then I missed again in late January for 2 days because I was again in the hospital.  This time was what they called vertigo but I thought had been an interaction between cipro and the Tasigna.  Other than that I have been good with the meds.  Occasionally I will miss a dose from forgetfulness but not a lot.  I have a pretty good routine. 

I havent made any lifestyle changes and really havent taken any other meds that would change things.  Hoping it was from missing those days while in the hospital but my doc said that should not happen.  I dont know. 

Thanks,

Dennis

[Susan61]

Hi Dennis:  I wish you well, as they find something to get you back to PCRU.  The one thing I want to tell you is that even when your in the hospital you should take your TKI.  I have been in the hospital a few times, not related to my CML.  They would have charged me an enormous amount on my bill if I had let them supply my Gleevec.  Both times I had my husband bring my Gleevec to the hospital, and they labeled it Belongs To Patient I made sure they gave me what was left to take back home with me at discharge.. They gave me my pill everyday out of my own supply.  I write this for anyone who may ever have this problem.  Also get in the habit of taking your medication at the same time everyday.  I take my Gleevec with all my other medications with my breakfast every morning, and then I know I am done for the day.

Susan

[ruag8tr2]

Susan,

Thanks.  I also have a routine.  But- when I was in the hospital I was NPO (nothing by mouth) and had an NG tube in my nose to remove stuff from my stomach.  There just wasnt any way I could take.  The second time, I had my wife bring the meds and I took them on bmy own so I only missed a dose at night and one the next morning.  

Thanks,

Dennis

[CallMeLucky]

Dennis,

The reality is that missing a few doses here and there really should not result in any type of resistance or rapid change in status.  It seems that if the test is accurate - they should probably rerun to be sure - then you have likely developed a resistance to the drug you are taking.  A mutation test would be a good idea to determine if there is a known mutation.  Aside from that a switch to Sprycel is likely your next logical step.  Very reasonable to believe that the Sprycel will work and again, things should get back under control.

Wishing you the best!!

[ruag8tr2]

CML- Thanks for being there.  I am hoping the test was just a bad sample.  We will know soon enough with the results of the marrow come back.  Either way- I am so tired.  I want to be normal again.  I feel myself slipping into a depression and that cant happen.  I have to win the battle.

Thanks

[Barb@Anderson]

ruag8tr2, I feel you when you say you are just so tired and want to be normal again.  I wonder if there is ever a normal post dx of CML.  Somedays I feel alright but never the energy I had before.  Somedays I just don't want to get out of bed.  So normal??  guess those days are a thing of the past.  I just take each day as it comes and make the best of it.  Good days I do get out and try to go places and get exercise and visit my family or just go walking at the mall.  And thank God for those days for I never know when a bad day is coming.  So don't get into a depressed state.  Get up and go out somewhere if ony to Walmart and walk around.  You can use the Cart to hang onto.  Hang in and God Bless.  Hope your test turn out well.

[Susan61]

Hi Barb:  I was reading your response to Dennis, and Oh how I can relate to some of what you said about just getting out.  I do have my usual side effects with the CML, and I get so tired that I do not want to do anything.  I have other problems with bad Arthritis etc.  I do exactly what you said.  I go to stores where I can lean on a shopping cart to walk around.  I used to love to go to a Mall, but I find it hard to walk and carry packages at the same time.  My life has truly changed through the years since my diagnosis.  It can be frustrating, but you do have to keep moving and try to be positive as much as you can.  I am also 14 years older than when I was diagnosed with the CML, therefore, a little bit of old age has set in which I hate to admit.  God Bless Everyone.

[Elizablest]

It's my understanding that Cipro interferes with TKI absorption. But, I doubt just a few days would have such an effect. Perhaps it is the Tasigna. Just read something the other day that Sprycel is 400 times more effective than Gleevec, as well as it working in a slightly different way in the body.

I am surprised about the tiredness. I had been so exhausted and in such terrible bone pain before my diagnosis. I have been feeling so much better since treatment began 18 months ago. I thought everyone who had a good response to the TKIs also did better. I guess I was wrong.

I hope things will improve for you, soon!

[Sneezy12]

Cipro does not interfere with Gleevec absorption. Regards, Frank

[ruag8tr2]

All,

My bone marrow results came in today.  According to my local oncologist the BCR/ABL is 0.162.  He recommends going to Shands to see if I should stay on Tasigna or go to another drug (Sprycel, Ponatinib, Bosutinib).  Any thoughts on the bone marrow results?  What level of concern should I have?  Thanks for all the responses up to now and going forward. 

Dennis