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Disease progression

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#1 Widgeonus


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Posted 13 August 2014 - 08:50 AM

What are the chances of going from .2% PCR and CCyR to disease progression in 3 months? I am one year from diagnosis and I notice that ever since I started having 3 month checkups, I become very anxious in the 3 weeks prior to my next checkup. My one year blood work is next week.


Is it even possible for the meds to completely stop working in 3 months? Will I show up at my next appointment and be in an advance stage? I find myself freaking out over any little twinge or pain on my left side thinking the meds have stopped working and my spleen is swollen. I lay in bed at night pushing on my abdomen to see if I can feel anything.


My doctor hasn't been very good at communicating what to expect. What should I expect from the meds (Gleevec)? What are side effects from the disease? What symptoms should be reported and what symptoms are from the meds/disease?


Driving myself nuts!!!!!!!!!

#2 LivingWellWithCML


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Posted 13 August 2014 - 11:28 AM

This is such a timely topic, because I am awaiting my latest FISH/PCR results as well.  I used to drive myself into a total panic!  Over the first year of treatment, I was looking for signs of progression leading up to each round of bloodwork, and my mind was expecting the sky to fall on top of me - I know exactly how you feel right now!


Other experts on the board will chime in, but I'll start with some advice from my own journey after 3-1/2 years on Gleevec 400mg:


1. First off, take a deeeeep breath and RELAX.  What you are feeling are likely the symptoms of anxiety, and not Gleevec side effects and not CML progression.  I go through the very same situation about 2 weeks before my blood draw, and then it gets worse while I wait the one-week+ for the results to come back.  It's taken me time to learn how to control my own anxiety, but even after 3+ years, it's still tough.  One of my symptoms at diagnosis was a "whoosh, whoosh" sound in my head/ears from the thick, WBC-laden blood.  And how interesting is it that I get that same sound in my ears a couple of weeks before every round of bloodwork, then it goes away after I get the results and see that everything's okay.


2. Find something to get your mind off of it, even if it's temporary.  Exercise is what works for me - I go for a bike ride, a swim, a run, a brisk walk, or something to calm myself down.  If you are physically able to exercise, try it and see how much it calms you down (both during and after your workout).  I would get these crazy pains like you're describing, think that I'm progressing/dying, but then I'd lace up the shoes and go for a one-hour run, and wouldn't you know ... the pains would completely vanish.  But then they'd return as my mind started thinking worst case again.  Crazy, isn't it?  Also, moderate exercise gets your heart pumping, controls fatigue, and releases chemicals in your brain that will calm you down.  It absolutely works for me.


3. It's okay to consider some short-term, low-dose medication to help control anxiety at testing milestones, just to get you through these periods.  Check with your oncologist about this.  I had to do that for the first 18 months, and it helped me out a lot.  Wellness therapy is a better option that doesn't involve medication; most cancer centers provide wellness doctors that can help.  I had a one-time wellness appointment at the facility where I'm treated, and it helped me out immensely.  It helped get my mind in the right place.


3. You reached CCyR within a year of diagnosis, and your 9-month PCR showed you on the edge of reaching MMR, which is another significant treatment milestone.  This is a very good response to Gleevec (pretty close to what my response was after 9 months), and there's no reason not to expect a good result at the one-year point.


4. If your doc is close by (mine is a 30 minute drive from my home), then heck -- call and ask to come in for a CBC.  Most facilities can get CBC results in 15 - 30 minutes, so you can get a blood draw, wait, and get the results.  I did that one time in my first year of treatment; I was in a panic, called, and they happily let me come in and get a quick CBC - and of course, everything looked fine. :)  Then I went in a couple of weeks later to get my full round of bloodwork (CBC/FISH/PCR).  The first year is tough on all of us mentally and emotionally, so it's not an unreasonable request.


I hope this helps a little bit ... hang in there!

Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg

#3 Trey


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Posted 13 August 2014 - 03:44 PM

It is rare to lose CCyR, but if a patient does the PCR interval (3 months during the first year or so, and 6 months after that) gives enough time to switch drugs and regain control in most cases.  And there is almost no way you would "sense" or "feel" progression in the body, whether spleen or twinges or bunions or hemorrhoidal flare-ups or whatever.  That is why you must rely on PCR.  The only other potential mid-interval indicator is a CBC showing an extreme rise in WBC above 15K.

#4 Marnie


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Posted 13 August 2014 - 06:05 PM

I think that most of us go through that phase.  For my first year or two, I lived from PCR to PCR.  I always got pretty freaked out in the weeks leading up to PCR testing, and then waiting for the results was excrutiating. 


If it helps you feel better. . .now I'm pretty casual about testing and results.  I've even been off meds for more than two weeks now, because of pleural effusion, and I'm not nearly as concerned as I would have been before. 


No advice on how to control the anxiety. . I sure couldn't. . .but hopefully you have a little peace of mind hearing that the longer you are on this journey, the more relaxed you get, or at least I think a lot of us do.   I passed year 5 in June.


Good luck!


#5 Antilogical


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Posted 13 August 2014 - 06:55 PM

It's been 2-1/2 years since my diagnosis, and to my surprise, I no longer obsess about having cancer.  UNTIL the blood draw.  Then I have 10 days of anxiety.  You - my friend - are N O R M A L.

Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.

#6 hannibellemo


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Posted 15 August 2014 - 06:01 AM

I have to agree! If you go back and search the threads practically everyone on here over 3-5 years will have had posts about how anxiety ridden we were waiting for the test, waiting for results, twinges, aches,etc.,etc.,you get the picture.? As Marnie and Antilogical said, "Welcome to the world of CML normal". In a little while you will be just as blase. 


I remember when they first told me I could go a month between my CBCs. I held out for two weeks before the anxiety about rising WBCs and platelets drove me to call and see if I could come in early! They let me - I probably wasn't the first patient to ever request that!   :D


It won't help to tell you to relax, but you really can!


Good luck,





"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#7 pammartin


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Posted 15 August 2014 - 11:57 AM

Nothing new to add but I wanted to share I spent the first year or so obsessing with test results. Like the others noted, my obsession diminished and in time I didn't give them much thought. I usually become a bit anxious when I have the BCR/ABL pulled, but when I see my labs are all great I usually do not worry about my response. Each one of us is different so we will handle the pre-stress from pending test results in various ways, but I believe your response is a normal reaction to an abnormal situation. Controlling the anxiety....sometimes I am still learning how to do that about life in general. Best of luck!

#8 tiredblood


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Posted 16 August 2014 - 02:58 PM

I decided early on that I wouldn't stress over waiting for lab results.  I have tried to get my labs drawn about one week before the appointment, so the pcr results are ready by my doctor's appointment rather than having them drawn the same day as the appointment.  I don't like having CML nor having blood drawn so frequently, but I do like the idea of being able to monitor the state of my blood counts.  Of course, that may be because I didn't know my WBC count had been elevated for a few years and my PCP had not caught it.  It was when I changed to a new PCP that it was noticed, which led to being diagnosed with CML.


I think I read on Trey's blog something about having PCR drawn early in the week so the blood sample didn't set around over the weekend waiting to be examined.

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