116 replies to this topic

[Tedsey]

I have had at least 3 in my lifetime.  I had to have one at diagnosis too.  Great.

[Goldfinger]

I am not convinced at all ct scans are responsible for cml. Maybe - Maybe not. My brother has had numerous ct and xray scans for years due to his medical condition and never got cml. I think there's a lot more to it then that. I myself have never had a ct scan and only one xray from 30 years ago so I simply don't buy that arguement. There's a lot we simply do not know.

[Tedsey]

I agree.  I am sure it is not as easy as just having a few CT scans.  It would be almost impossible to pin down what someone is or was exposed to.  50% of smokers do not get cancer.  Not that they don't get other problems as a result, but some escape free from anything.  All I can think of is that there is some sort of genetic predisposition for CML or it is a result of that and/or epigenetic factors (what we can and cannot control for--like what our mothers' did while we were in the womb).  I just hope researchers find out soon how to cure it.  Most upset to read recently that a 4-year-old has been diagnosed.  The odds of him having a CT scan before dx are slim.  All the best.

[scuba]

Yeah ... you're all probably correct - I just had to reach for something.  I told my Oncologist today about CT-scans

http://online.wsj.co...8582691047.html

and he didn't think they were that significant.  Although the article I link below describes how many CT-scanners are not calibrated/maintained well in order to keep dosage low.

Who knows ...

[scuba]

I had an unscheduled blood test today.

WBC:  2.3

NEU:   41.3

Mon:   5.9

Lym:  50.2

EOS:  1.5

BAS:  1.1

RBC:  4.43

HGB:  13.0

HCT:   39.6

PLT:   363

It has been 5 weeks since I started Gleevec.  It seems my WBC's are below normal now, but expected for CML.  No one seems concerned

Platelets have fallen back from the increase noted two weeks ago.

Comments welcome!

[Tedsey]

Take if from me.  This looks pretty good.  What was your ANC or absolute neutrophil count?  I take it the 41.3 is in percent.  It is a little different than ANC unless you meant 4.13, which would be good.  Here's hoping your bloods get back to normal soon.

[scuba]

Tedsey - yes, the NEU is in percent.

There is no ANC on the report (??).

No worries about the WBC level half of normal? 

[CallMeLucky]

I'm also thinking about exercise.  I was diagnosed this week and waiting to go for my second opinion before starting Gleevec.  Local onc wants me to start now, but my consult is at Memorial Sloan and nothing against my local Dr, he seems real nice and knowledgable, but I don't want to start Gleevec and find out one of the world leading Dr's at Sloan would have done something different.  I wasn't encouraged when I said to my doctor's nurse "what if they want to put me on Tasigna instead" and her response was "what is Tasigna".

Back to the exercise; I'm on the younger side for this disease, I'm only 37.  I am in excellent health besides the disease growing in me and I had just finished doing the P90X training program.  That is why I went for my physical, to see how far down I had gotten my cholestrol.  That was a shocking phone call, "you're cholestrol is down to 174, which is awesome, but your WBC is 35000, I think you have Leukemia".  Talk about ruining good news, I really would have prefered to see my Cholestrol stay up, but I guess we don't get to make those choices.  Anyway, while a small piece of me wonders if the intense training I did and drastic change to my diet somehow kicked this thing off (I figure I had it, but wonder if I moved things along) now that I am looking at what I am looking at, I am wanting to start exercising again to try and fight this as best I can.  Just not sure if overdoing it is going to work against me.  Questions I will be asking the Dr.  I may also be optimistic to think that once I start Gleevec I will have the energy to exercise hard.  I still have two little boys to keep up with and a full time job.  I've barely made a dent in my mortgage and property values declining didn't help, working part time is not an option for me, so I may find I have to reserve all my energy to get into the office and get my work done.  Hopefully it won't be that bad and maybe the exercise will help.  I found when training that even though it made me tired, it was a good tired, and I had more energy in aggregate.  Hoping I can achieve the same during treatment.

Hope everyone is doing well.

[PhilB]

Hi Michael,

To get the ANC (absolute neutrophil count) you just multiply the WBC (number of white blood cells) by the neutrophil percentage - so just under 1 in your case Nothing much to worry about at that level, although the docs will want to check it regularly to be sure it doesn't go much lower.

Counts at these levels are very much par for the course in the early days.  The Gleevec is zapping the leukaemic cells faster than your healthy stem cells (which will be feeling lazy after their extended vacation) can take up the slack.  For an unfortunate minority these lazy cells may need a good kick up the backside before they get their act together {Tedsey can tell you all about it!), but for most of us the cells get back to business without outside help.

Keep a close eye on the counts, but no need to worry unduly yet or to change your lifestyle.

Phil

[PhilB]

Garycris,

It's a balancing act, but it definitely should help if you can continue to exercise.  You may well need to ease off a bit at first, depending on the side effects you experience, so don't go in expecting to be able to do huge workouts every day, but keeping fit is one of the best ways to combat the fatigue caused by the Glivec (and by the small children).  Personally I'd see how you go and what you feel comfortable with, don't overdo it and work out over time what's the best level of exercise for the new you.

Phil

[scuba]

Thanks Phil -

Should I have blood work done more often?  CBC is so simple and takes minutes - in and out.

I don't want to waste their or my time though in any event.

I'm thinking I should go every two weeks until the 3 month mark so I can track the good cells progress to make sure I am not getting blind sided (i.e. low ANC, etc.)

and risk infection.

It helps knowing from the folks here what is a kind of "normal" path in the early months.  I have detected that my RBC's, hemoglobin, etc. have ticked up from last time

so maybe the stem cells (good ones) are indeed waking up.  Of course my WBC's are dropping below normal - but my Lymphocytes are way up just above max and that reflects

a viral cold I had which came and went just now....so the good news is that my immune system is working.

[scuba]

Nurse not knowing is o.k. - doc not knowing is not o.k.

I am exercising now (running) - so go for it.  Let your body tell you when enough is enough.

And - I'm not a doctor, but in your shoes - start the Gleevec RIGHT away.  Start zapping the suckers now.  It's a population control thing.  The sooner you start, the sooner you get your counts down and get ahead of the disease

and keep your good system working. You can always switch to Tasigna at later time.  Gleevec, in my view, is much easier on the body - none of this Qt prolongation issue and not eating at the wrong time or you face bad things.

Trey has posted a lot of good reference material on this site (search for Trey's name)  you can read to catch up on what is going on inside of you.  A good cell biology textbook helps also (or just google stuff - it's all there).

[simone4]

Michael, I had blood work done every week for the first two months, then

every other week for five months. Now, at 18 months out, I see my onc

every 6 weeks.Standard protocol from what I understand, or maybe

because I had high wbc at dx. I just felt better, knowing I would

be seeing my doctor every week.  He stayed on top of things and

I needed that those first difficult months.

Simone

[CallMeLucky]

I don't actually have the Gleevec in hand yet, if I did I would probably be too tempted to take it rather than wait for the second opinion.  Given the holiday weekend it is unlikely I will actually get it until next week, unless they give me a week's worth of samples at my consult tomorrow with the local Onc.  I'll see what my CBC looks like tomorrow, they told me I am definitely chronic stage but now I am getting anxious.

[Trey]

GC,

Did the local Onc do a Bone Marrow Biopsy to confirm the presence of the CML Philadelphia Chromosome?  If so, there is not much choice in treatment except Gleevec vs Tasigna.  Most Oncs would still start with Gleevec just because that is what they have done for several years.  Some will start with Tasigna now that it has been approved for initial use.  With your relatively low WBC it probably does not make much difference.

[CallMeLucky]

They did do a BMB and I did test Ph+ (something I was actually thankful for, was hoping it wasn't atypical and I was really screwed).  So far I have only gotten "results" over the phone, the Ph+ confirmation was actually given to my wife when she called to confirm my test results would be available for my appt at Sloan on Wed 7/7.  I spoke with the nurse today who said I should expect to hear from my insurance company regarding the Gleevec Rx they called in.  I don't think I can get it at a drug store, my insurance has a specialty division that handles this kind of drug and I think I have to get it mail order.  When I spoke to the nurse I started asking her some information, armed with stuff I learned in some of your posts.  I probably shouldn't have becuase she didn't really know what she was telling me and only made me worry more.  She couldn't give me an answer on my PCR number and she told me my FISH was 200/200, I guess that is not great, but also not uncommon.  Tomorrow I go sit down with the local Onc.  I'll do a CBC and get the full details of my results.  If they have a Gleevec in the office, at this point I'm willing to take it, but I will probably have to wait until my insurance company sends it to me.  Hopefully my CBC won't be too out of control, my last WBC was 61000.  I have tenderness in my lower left side, but I wonder if I would feel that if I didn't know I was sick.  Up until last week I was feeling great, I think the stress is taking its toll.  As soon as I get home I am taking a Xanax and see if that can calm me down.  I think I will have all my answers tomorrow and then Wed they will be confirmed, doesn't seem like there is anything too extraordinary about my case, except of course to me.......

Thanks Trey

[Tedsey]

Michael,

I have hope your numbers will start to normalize because most people's usually do.  Although low, I wouldn't worry about your WBC right now.  We should never feel worry anyway, right?  Even if there is cause.  I have been going over that in my mind about all the times I felt I had no worries, but there was something a brewing and all the times I panicked and didn't have to.  Wish I could control this.  I think with real hard work, it could be done.

Anyway, sorry for the tangent.  Regarding ANC, it could be reported on your CBC as ABS Neutrophil.  For example, normal range for my lab is 1.8-7.7 k / mm cu.   I venture a guess, your ANC is OK.  Otherwise, your onc would be talking about "shots" (Neupogen or Neulasta) or putting you on a Gleevec "holiday" (taking you off Gleevec until counts get a little higher).  Trying to stay positive for you!  Here is a good read Trey turned me on to through Wikepidia about neutrophil counts: http://en.wikipedia....eutrophil_count  My onc doesn't bother with shots until I get to .5  (500) and below.  The other onc took me off Gleevec (package directions) until she emailed Dr Druker who said not to take me off Gleevec despite low counts to best fight this disease.  That is still my plan with my new onc.

I have never seen a CBC that lists ANC or ABS Neutrophil as AGC, but AGC means Absolute Granulocyte Count, which means the same thing as Absolute Neutrophil Count.  Maybe this is how it is reported (AGC) on your report.  Granulocyte is another word for neutrophil.  It only gets more complicated from here with all the different names for the same thing, redefining what was once thought to be a protein, but still called a protein because, I could only guess, that name changes are hard for everyone, even scientists, plus the new numbering system for the breakpoints!   All the best!  I am a willing student with you.

[Trey]

Tedsey and Michael,

The CBC only shows the absolute neutrophil count (ANC) if it is done "with differentials".  If they are not being done that way, you should ask for it.

http://www.cc.nih.gov/ccc/patient_education/pepubs/cbc97.pdf

[Susan61]

Hi Gary:  You do sound very anxious, and that is so normal.  Gleevec is a very expensive pill, and not something they have samples of at the doctors office.

I also get mine through mailorder specialty pharmacy.  They deliver it to me overnight through Fed Ex.  I used to use UPS, but I like Fed Ex better.  I get a 90 day supply with my insurance plan of all my meds including the Gleevec.

     Just take one day at a time, and just eat a full meal when you take your Gleevec so you do not get any nausea.  I have tolerated it very well.  Some people like to take it in the evening with a nice dinner.  I like to take all my medication first thing in the morning to get it all over with.  I am not a morning eater, therefore, I do more of a brunch with my pills and no problems.  I have been taking Gleevec since Oct. of 2000, so maybe that will help you ease your anxiety.

    Just post any questions you have about anything.  Someone will always have a answer for you.  Glad you joined our group.

Susan

[starlago]

My opinion:  good to wait until Sloan consult.  Ask about all three main-stream drugs - Gleevec, Sprycel, and Tasigna.  Gleevec and Tasigna based on similar science; Sprycel, a bit different.

In the meantime, did your doctor recommend Hydrea to initiate reducing white blood cells?