116 replies to this topic

[Trey]

Does not look like borderline accelerated, but issue is whether it is upper chronic phase.  But that is not a big deal.  The real issue is how well you respond to drug therapy.

[scuba]

I had a CBC done today.  I am two weeks on Gleevec.  My WBC's fell from 33,000 the week before to 6,000 today - which is in the middle of the normal range.

My other white blood cell counts (basophils) were normal too.

Only the red blood cells showed little change from the week before (mildly anemic) and platelets just outside the upper range.

I don't know if this kind of response to Gleevec is typical after two weeks.  I did not see the Oncologist today - just the blood test.

Does this mean I am at Hematologic response?

[Trey]

Looks like a CHR response.  Everything does not need to absolutely perfect, but having the WBC return to normal is the big issue.

[MACELPatient]

I agree with Trey.  Looks like you have achieved a complete hematological response.  Not uncommon for Gleevec to work this fast.  I recall heading to the Onc. after only 2 days and my WBC went from like 46K to 22K.  I was flabergasted but the doctors were not completely shocked.  I can't wait for next weeks first FISH test.  I can't belive my bodies response to the medication.  I am no longer having any bone pain.  About the only noticable side effect that I can see is the mild fatigue.  This has not stopped me from doing my normal activites around the house.  I just take a few rests and I am back on my mery way.  I am now coming up on 3 months on Gleevec for CEL and hope to continue with the positive results.

[scuba]

... of course I wonder if my WBC's will stay normal or continue to go down (low 2's) as many people report.  We'll see.

I feel fine except for the Scotch I had last night with friends on Memorial day.  He brought out the really good stuff - so I couldn't say no.

(http://www.drinkupny...rge_p/s0414.htm)

It's great to try and live normal.  This board has been terrific. 

[MACELPatient]

They may drop a bit lower.  I know mine did a bit for one week and I just watched who I was around.  i want to say my counts dropped to the 4's.  It's been a couple weeks since i looked at my results so I am not 100% certain.  I avoided kids and the public as much as I could.  I am a healthy individual but I just did not want to risk infection.  It was more precautionary on mine and the doctor's part.  Best of luck to you.

[MACELPatient]

To add to this.  I am avoiding all alcohol at this point.  I don't want any setbacks as far as my health.  I want to achieve some benchmarks with my bloodwork before I decide to have a drink.  And it will most likely be just beer and an occasional glass of wine.

[scuba]

On alcohol:

My wife and I have a bottle of wine every night (two glasses - 3 if I steal one of hers).  I was bottle fed wine since birth.

I was drinking wine all through the pre-diagnosis and during the initiation of Gleevec two weeks ago.  It seems the wine has no affect.

I drink wine for heart health to keep my arteries clear.  My family has a history of high cholesterol.  Those that drank wine lived to be in their 90's - those that didn't - didn't.

The 'Scotch' was a rare event since I am not a Scotch drinker - but it was nice to join our friends and "be normal".  No one knows I have CML.

I took the advice on this board to heart and it is so nice not to have my friends know any different.

I do take the Gleevec in the morning with breakfast.  The wine does not hit my system for a full 12 hours later - so I do keep the two separated in time and maybe that helps.

I also take a garlic pill in the morning to assist in fighting infections.  Like you, I do expect my WBC's to drop further - and if they get below normal, then the garlic, zinc and vitamin C I take should help.

[Goldfinger]

I agree with the ban on alcohol,esp the hard stuff like whiskey,bourbon,etc. One of the first things my onc warned me about was to avoid any type of hard liquor. He said an occasional beer would be OK. But I'm not  drinker anymore compared to the old days of yore so I never had anything to worry about.

Steve

[scuba]

I am thinking of taking up running again to get back into shape.

I am concerned about what I read on Gleevec affecting the heart (ventricle) - an whether I should start a strong workout (3 mile runs) to get the heart pumping and sweat pouring again.

Anyone running now for exercise?

[BethG]

Hi Michael,

Not running, but I started training and walked a half marathon in the months after my diagnosis (diagnosed in June '08; completed the half marathon in October)...the exercise really helps not only physically, but mentally!

Beth

[cryjohn]

Michael,

I was wondering the same thing about exercise.  I asked my doc yesterday about my activity level and he said I could do whatever I could tolerate.  That being said I don't think I have enough energy to start running, but do plan on walking daily and hopefully getting back on the bike soon. 

By the way, our journey is tracking the same path.  After two weeks on Gleevec my WBC is a 8000 (was at 35000 at BMB) and platelets almost within normal range.  My doc is going to do another CBC on Friday just to make sure I don't drop to far and then again next Tuesday.  I'm verging on anemia so he wants to monitor that closely as well.

Glad to hear your feeling up to running, enjoy!

Crystal

[scuba]

Hi Crystal,

I'm borderline anemia currently - good blood levels are pretty much the same as just before Gleevec.  I want to start running to force the body to adapt and perhaps push my good blood levels into the normal range.  As we all know in exercise - we have to push just a bit beyond what we can do to force the body to adapt -whether making muscle or in our case more red blood cells.

My main concern is if Gleevec is doing any heart damage (ventricle) - I don't want to find that limit.  I'll start jogging slowly at first to make sure I can finish the 3 miles - then just increase over time.

Should work.

If I can get back to running 3 miles - then life will be normal.  CML will fade as something debilitating.  Only taking Gleevec will remind me.  I feel fortunate and blessed that Gleevec is working as well as it seems to be ... but I certainly want it to stop sending my good counts lower.  I think the exercise can counteract.

(When I talk exercise, I mean the sweat pouring, lung panting, bend over grab your knees when your done kind - a good 30 minute aerobic workout)

[Goldfinger]

It seems like a lot of people who have cml are anemic. I have been anemic for years prior to me getting cml. I wonder if  there's any correlation between being anemic and getting cml or does Gleevec make people anemic? Or is it just a coincidence?

[scuba]

Goldfinger - How would you describe your activity level (prior to CML)?  Did you exercise regularly and aerobically? or were you more sedentary.

For about 18 months prior to CML dx I stopped exercising because of two big projects I was on and a hip problem.  It was the first time in years that I stopped my running and other activity completely (exercising).

I let myself get out of shape.  Personally - I think that is what caused my anemia.  My body didn't need any blood !  Heart rate increased.  I didn't gain any weight because I always watched what I ate and even fasted from time to time, but I certainly was more sedentary.

Then comes CML.  And now I am motivated to get back in shape to counteract what I think will be even more pressure on my blood to go further anemic.  It's not scientific - just a hunch.

Trey may have some additional information or insights.

It would be interesting to learn from people on this site who exercises aerobically (heart pumping, sweat producing activity) and who doesn't and their respective red blood counts?

[Trey]

There is a connection to CML, since the leukemic stem cells produce red blood cells as well as white blood cells and platelet precursor cells.

[Goldfinger]

I was diagnosed with anemia back in 85 when I was being treated in a hospital for a broken leg. I was very active back then walking perhaps 10-15 miles per day as part of my job. Never felt tired or exhausted or anything like that. I became more sedentary in 2000 when I changed jobs. Was diagnosed with cml in Dec 2009 w/a count of 240,000. By the way, my mom passed away from leukemia back in 93 but I have been unable to find out when type it was. Looks like I may have had a number of things working against me......

[cryjohn]

Michael, keep me updated on how the running goes.  I to am ready to feel like I've had a workout.  But at this point I do find my breathing is very labored when I do anything remotely close to calling exercise (compared to pre-diagnosis), so it's slow going for me.  I have been monitoring my heart rate and it is up, not sure if its all the CML stuff or just the fact that I haven't really done any exercise for about 3 months now, probably a little of both.

[scuba]

Well - I did it.  Exercised like I used to ...  This is the first time I did a full workout.

I noticed that my heart pounded harder than I have ever felt.  It did not slow me down - just noticeable.  At the end of the workout, my skin was red in a spot like pattern.  I never had that before.  I can get red when exercising, but not like this.  I felt odd - not so much out of shape (which I am) - but kind of airy.  After about 5 minutes, my whole body cooled down almost like a switch was thrown - and I felt terrific.

Since Gleevec I notice two things when exercising - heart intensity and sweat come on strong and sudden.  And they return to normal almost as sudden when exercise stops.  That is not normal for me - it's probably a new normal.

My goal is to test the idea that I can induce my body to make more red blood cells (I am mildly anemic since CML) and counteract what may be a Gleevec induced anemia over time.

If anyone else exercises intensely and notices a difference before and after Gleevec, please let me know. 

[scuba]

Now it makes sense:  I had 3 Cat scans about 9 years ago - all in the hip region for a check-up.

Isn't the hip where most of our blood is made?

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