20 replies to this topic

[LivingWellWithCML]

Hi everyone,

Thanks to everyone who provides such amazing knowledge and support on this board.  I think about y'all quite often and continue to say prayers for our brothers & sisters who are facing a more challenging journey ... several of those situations have popped up lately and you all are on my mind.

I am on Gleevec 400mg and my 6-month draw is coming up later this week, literally "to the day" that the first Gleevec pill went down the hatch, and the CML specialist appointment is ~ 2 weeks after the draw, because I want to have the FISH/PCR results back in time for my appointment.  My treatment has been going fine so far, but anxiety now reigns as the date nears - ugh.

Question......

• They will be checking FISH/PCR on peripheral blood (PB) only, but should I expect them to analyze the blood further for things like blast cells or other potential abnormalities?  For example, is it possible to have a good CBC, low or 0% FISH (I was 5% FISH @ 3 months), a down-trending PCR, but the presence of blasts in PB [which would indicate an issue]?  If you had blasts, wouldn't FISH be up?
  

Thoughts?

BTW, any others deal with anxiety leading up to an important milestone like this?  How do you all deal with it?  I've tried the Rescue Remedy bit, and I find that heavy exercise calms me quite a bit (I'm a low 7-minute miler since starting treatment, and am so thankful for that!), but the anxiety is definitely rearing its ugly head regardless ... having some trouble concentrating at times and sleeping.  I soooo want to avoid taking any anti-anxiety medications (although they are there for an emergency); what works well for the rest of you all?

Thanks so much for your feedback and advice. :-)

[GerryL]

Hi Dan,

I think most of us suffer from the anxiety of what our results will be, even those that have been PCRU for a number of years.

Some of the others are probably better at answering your question, but I would think they would only investigate further if something showed up. I'm about to have my blood drawn, then have a wait of about a month to see the specialist. I'll get a copy of the results before I see him from my GP, so I'm never too surprised by what he says.

All I can say to you is good luck with your results and try to keep yourself busy doing things you like.

Take care

Gerry

[PhilB]

Hi Dan,

There's no sure-fire cure for the anxiety around results time.  Many people seek chemical assistance, be it pills or a large gin and tonic.  For others distraction is the way to go - find something else that takes your mind off it, whether that is exercise, loud music, visiting friends or reading a good book.  Personally I find I do a lot better if I jst try to forget about CML entriely as much as possible around results time - which is why I always disappear entirely from this place!  If you can't help but think about it then this is a great place to come and seek re-assurance or knowledge.  If you are trying not to think about it at all then it can be rather less helpful.

Phil

[cfroncz1]

Dan,

When I read your post, I felt like I could've written it exactly!!! I am also coming up on my 6 month checkup after taking 400mg gleevec. I just had my 2 week pre-visit blood draw today. I am a nervous wreck as well. I can't think straight, can't sleep good, can't stay focused... I have thought about the anti-anxiety medications, but I am just trying to make it thru without them. I wish I had an answer for you....as to when this gets easier, I just know that it is not easy right now. I called this afternoon to get my blood  test results and they said my AST is slightly high - 55.  Now I have that to worry about, too. Anyway, fingers crossed that we both get thru this fine!!!

Cheryl

[LivingWellWithCML]

Thanks for the feedback, everyone -- so supportive and helpful as always.  Anxiety is simply something I need to deal with ... bummer.  I never knew it was such a problem for me until this diagnosis!  Thanks a lot, CML.

Anyway.....

Cheryl,

Good to hear from you as well.  My AST/ALT levels also zipped up a few months in ... I was totally freaked out (AST in particular was > 150!), but they returned to normal by the next panel.  I did a ton of research on it; for my case, I believe it was directly related to upper body weight training, because I had started a routine from scratch within a week of the panel.  There was a study that showed a spike in AST/ALT (primarily AST) within 7-10 days of starting a new weight training regimen ... also, there are many factors that affect AST levels other than liver (e.g., weight training induces muscle damage, and those toxins from the damage temporarily raise your AST).  That's a very mild elevation on your part; and I'm sure they will check it again soon just to make sure everything's cool.

Latest on the anxiety front: Truth be told, after trying to grind it out over the past three weeks or so, I finally caved today at the advice of my wife and tried a small dose of anti-anxiety med this morning .......... and remarkably, I feel like a completely different human being.  Unfortunately, I appear to be one of those folks who has other issues surface when anxiety reigns - for me (a man thing, BTW), I was having excruciating pelvic pain that started around the time that I wrapped up a red-eye flight and another sleepless night on the road a few weeks ago .... the stress of no sleep+CML (i.e., OMG, I have CML -- I have to get plenty of sleep ... no sleep ... OMG -> repeat vicious cycle) seemed to cause the pain to start, and the pain caused more stress and less sleep, which then made the pain worse, etc etc.  Ibuprofen didn't help, nor did antibiotics from the urologist.  Intense exercise (a long, rigorous outdoor run) got rid of it temporarily, but what really seemed to make a difference was the anti-anxiety med today.  I absolutely cannot believe it - the pain disappeared!

I will be thinking of you over the next couple of weeks as we get through this important milestone!

[hannibellemo]

Dan,

You made me laugh with your OMG cycle - it's so true. It just takes a very small dose of xanax to quell my occasional OMGs. Glad its working for you.

Good luck on your results!

Pat

[jjg]

Hi Dan,

I sailed through the 3 month PCR results, maybe because it was so much less stressful than what I had going on around dx. Between 3-6 months was emotionally harder even though there was nothing going on. I'm thinking that my brain was coming out of survival mode and processing everything, both good and bad. Also I think that 6 months of side effects does wear you down, even though around 6 months I started to get some real improvements.

I felt I might struggle with the 6 month PCR wait from about month 4 onwards so I planned a holiday. I had the blood test and then a few days later my husband I hopped on a plane from Melbourne to sunny far north Queensland for 10 days - the equivalent of going from Atlanta in March to Hawaii. We went on a 3 day hike on hinchinbrook island where we had to share a tropical island about 40km long with 6 other people!!! It was awesome and it was amazing how much better the tiredness, cramps and nausea were when I could take my time and not struggle off to work after taking glivec. Anyway we got back from the holiday and got the PCR the next morning. Emotionally I only just made it on the plane but once there we managed to pretty much forget about the PCR.

The month since getting back has been sh**ty with multiple infections, fevers and other weird things which fortunately have turned out not to be serious. I've been poked and scanned in more ways then I'd like to discuss and really we just should have stayed in Queensland!!

So I reckon the solution is that CMLers should spend the 2 week PCR wait period on holidays in a beautiful location. My 9 month test is in 5 wks. I wonder how my boss would feel about another couple of weeks off and maybe my health insurance could pay the airfare! Hmmm...back to work.

J

[jjg]

Hi Cheryl,

My AST has been in the 50-70 range since starting treatment. They tell me not to worry about it...so I don't. They don't tell me not to worry about the PCR - I guess they realize there is no point telling you not to worry about the PCR. Good luck with your results.

J

[LivingWellWithCML]

heh heh jjg -- it's true, and it's a vicious cycle.  Although I actually slept really well last night for a change.  Imagine that!

The first part of my 6-month check is now complete:

Just got back from Emory Winship after doing my blood draw.  It still amazes me how some nurses give you the stick and literally don't even feel it, but today I got one of those "ouch, that actually HURT" nurses -- fun fun.  But hey, at least it's just a blood draw, so you won't hear any complaints from me.   As soon as I walked back into my office about an hour later, my fax machine buzzed in the results of the CBC/CMP.  FISH/PCR results should be ready in a week, and my appointment with the CML specialist is the following week.

Something interesting that I noticed - it looks like Emory's accurately recalibrated their CBC checker, because I was consistently showing 6.x WBC at Emory, but 3.x at my local oncologist, which made no sense at all ... and oh by the way, it caused me a bunch of anxiety at my 6-week check-up at Emory after getting 3.x figures every week from the local onc -- OMG, WBC doubled in a week, OMG -- etc.  Shame on Emory.  Anyway, it looks like they are calibrated correctly, because now I'm seeing consistent figures between the two offices.

Some questions for the gracious folks who know the CBC and CMP stuff like the back of their hands (which is probably all of us!):

• My WBC really hasn't changed at all since I started on Gleevec 400mg six months ago.  It has fluctuated between 3.1 and 3.9 throughout ... today it was 3.7.  Does it matter, or is this just the new normal?  Neutrophils are 65% (ANC = 2.4), so I don't appear to be very suppressed.
  
• Although I still have a couple of minor swollen lymph nodes in my neck, my lymphocytes are 24%, which is showing as the low end of normal range.  I assume that if something really bad were going on with my lymph nodes, then this %-age would be a lot higher, yes?
  
• I have seen a slow climb in RBC and Hemoglobin levels over the past 6 months.  I was at ~ 3.5/11.3 when I started Gleevec, and I'm now at 4.0/12.5 - still anemic though.  Marrow healing/recovering I guess/hope?  I'm planning to run the Emory Winship Cancer Institute's "Win the Fight" 5K on Saturday morning, and my anemic CML-stricken body should be able to push a low 7 minute mile pace throughout.  I am totally ecstatic about this (and continue to be so thankful for Dr. Druker and targeted therapy), but I am baffled that my body can run at that level of performance, even with anemia.  Our bodies just adapt I assume?
  
• Metabolics seem to be holding up nicely.  6-months in and my AST/ALT levels look fine (32/18 respectively), even though I just wrapped up a 10 day dual antibiotic stretch in parallel with Gleevec (and red wine!) consumption.  I also did a pretty intense upper body workout on Monday, which could easily explain why the AST is a tad bit higher.  My Bilirubin appears to hover on the top end of the range (today = 1.3), but it's been up at 1.2-ish for a few months now.  Any reason for concern here?
  

Feeling thankful for holding the CHR at 6-months, and hoping for encouraging FISH/PCR results in the next week or so.

[cfroncz1]

Hi Dan, I hope you are doing good. Wish I had an answer to some of your questions, but I don't have a clue about any of them!!  Glad that they recalibrated their CBC machine...I would've passed out if they told me my WBC doubled!! Mine has been in the 5's for a couple of months now. I am still waiting for the PCR to come back, but it looks like I will have to wait until my appt next Monday. I called them this Monday, but they said it takes 2 weeks. I thought it was faster last time, but I guess not. Anyway...still waiting and hoping that all the numbers are good. I am still a bit worried about the AST being at 55, but I am trying not to panic. I had a high Alkaline Phosphate reading just after starting Gleevec which eventually went to down. Of course, now I have a pain in my right side and I'm worried it is my liver. I think I pulled a muscle, but of course it had to be on the right side!!!  I am surprised you are able to do so much running, I am having a hell of a time with any stairs lately and I don't think I am that out of shape!!! Well, I hope you are doing good. Let us know how your results turned out.

Cheryl

[Susan61]

Hi Dan:  I am just catching up on the posts, and what your saying about the anxiety is what we all go through.  I just had my 3 month blood test, and will get my results back this week.  I do my regular CBC, CMP every 3 months, and then I do it all with the PCR every 6 months which is due in January.

You never get over that feeling even after 12 years like me.  My WBC is always in the range of 3's, and once in awhile it goes to 4.  I have the low RBC due to anemia etc.  It does sound like your doing good.  Let us know after your appointment what the doctor says.

Susan

[Susan61]

Hi Cheryl:  I wish you well on everything also.  Let us know how your visit goes on Monday.

Susan

[LivingWellWithCML]

Thanks Susan - your encouraging words really do help out a lot.  Still waiting on FISH/PCR results, and still apparently have a couple of minor swollen lymph nodes in my neck that just won't seem to go away.  However, I don't feel sick at all.  In fact, I ran the Emory Winship "Win the Fight" 5K on Saturday morning and I actually won overall first place in the cancer survivor category with a pretty fast time.  Gleevec really is remarkable treatment and has allowed me to resume a pretty strong running form, and I am very thankful for that.  But now I just want good FISH/PCR results and normal sized lymph nodes, LOL, then life will be good for another three months.  This is the new normal........

[Susan61]

Congratulations on your win.  I think you are just fine, and I will pray you get good results.

Susan

[LivingWellWithCML]

Thanks Susan -- you are always an inspiration!  And Cheryl - let us know your results as well.....

[cfroncz1]

The doctor's office called me today to say that my results were back early. That was nice of them because I really didn't want to wait until Monday! Anyway she said my PCR was .015% down from .109% 3 months ago. She said it is good because it dropped. I don't know much about the numbers, but if they are going down I am happy. I will have to get a copy of the report to see the rest of the details like the log reduction etc... but for now I am a bit relieved! Hope you are all well, too.

Cheryl

[grannyd]

Happy for your good results---now you can relax I hope!!!!! The waiting is the worst!!!!!!!

[jjg]

Hi Cheryl,

I was 0.015 at six months too....assuming that you are also on the international scale. Do you know what your number was at dx? In any case you've had just under a 1 log reduction in the last 3 months which is very nice....enjoy!

J

[LivingWellWithCML]

Congrats.  Your PCR is definitely moving in the right direction.   Go have a glass of wine!

[cfroncz1]

Thanks everyone!!

Jig --- to answer your question -- my PCR at diagnosis was 56.67%.

Cheryl