4 replies to this topic

[Gene]

I want to thank you all for your contribution to this discussion board.  I have been reading religiously since I was diagnosed with CML in August of 2009 and your advice, jokes and knowledge have gotten me through some terrifying moments, especially early on.

A little bit about me, I am 36 years-old, mother of three children ages 10 to 6.  I did not have any symptoms when I was diagnosed although in retrospect I was a little tired.  I see two oncologists at the Seattle Cancer Care Alliance (Fred Hutchinson/University of Washington Medical Center/Children's).  Here are some of my tests results when I was diagnosed:

WBC:  92.76 thousand

Ph+ (q34;q11.2)

Blasts:  1.5%

Fish:  15/20

Fish:  198/200

PCR:  This is being monitored but I don't know the numbers

I was put on 400 mg of Gleevec and reached a complete hematologic response within two months.  Unfortunately, my white counts kept falling and I was neutropenic (neutrophils of 300). My doctors reduced my Gleevec prescription to 300 mg and I was monitored weekly with CBC draws.  My numbers rebounded and have been steady at 3 thousand WBC and neutrophils (ANC) around 1.7 thousand.  Although I was a little discouraged at the time, I read other experiences on this board and felt relieved. 

This past week, I had my second (six month) bone marrow biopsy or rather aspiration and can't help but feel a little discouraged again.  My fish test is 38/200 (19% with the bcr-abl gene).  There were no blasts or further mutations in my marrow and my blood counts remain the same (slightly below normal range).  I asked my doctor if we should consider increasing my dose to 400mg again.  They both agreed the drawbacks outweighed the benefits. They felt I was heading in the right direction.  I do feel very good physically.  But to me, nineteen percent seems awful high.  I was hoping to hear from some of you about your experience at 6 month mark and how you are doing now.

Also, I have a mental hurdle with exercise.  I use to run almost daily.  Do hot yoga twice a week.  Since I was diagnosed, I stopped running and doing hot yoga.  It was first to give my body rest and time to adjust to Gleevec. Then, I began to think the increased heat through exercise caused CML (told you it was mental).  I know this is NOT true but here I sit--inactive and I've gained 10 lbs.  I was hoping to hear about your experiences with exercise.  What form?  How often?  Hoping this will help me get over this hump.

Thanks.

[HPL]

Hi Gene,

I can share my experience, but more from what you don't want it to look like. I was also diagnosed with 198/200 and at the 6 months my Fish had gone down to 150/200. At the time, I thought it was good to go atleast in the right direction, but it wasn't good enough. They swithed me to Sprycel at the time.

What is your Cytogenetic Metaphase ? That is equally important, I was diagnosed with 20/20, and only went to 19/20 at my 6 month. That was very telling that Gleevec wasn't doing it for me. I learned later that I have the T315I mutation, so there was atleast an explanation.

As for dosage, I would say the higher you can tolerate, the better. At least be at 400 to be optimal.

Personally I got back to playing soccer as soon as I could, it was something that allowed me to feel normal again. The more you can do to get life back to normal, the better I think it is. Of course, 'normal' will never be the same.

Oh, and it looks like we're in the same area, I live in Woodinville.

Hans

[PhilB]

Hi Gene and welcome aboard.

There's a lot of variation in how quickly people's numbers drop, from the fastest of hares (some lucky people have hit PCRU in 6 months) to the slowest of turtles.  I know someone who took 14 years to reach complete cytological response - note that means that even with such a slow response they are still here and still going in the right direction 14 years after dx.   The most important thing is not the speed, but the direction of travel.  In your case not only are your numbers heading in the right direction, but they are going nearly twice as fast as the standard deinition of 'optimal response' which is to have less than 35% positive at 6 months -  so whilst your not Speedy Gonzales it's nothing to worry about at this point.

Regarding your reduced dosage, have they done a Gleevec blood level test on you at all?  If not I'd probably ask my onc about getting one done if I were in your position.  It probably won't change the treatment they're giving you at the moment as it sounds like they've found the right balance at the moment between effects and side effects, but it may help set your mind at rest and / or shape thinking about what you should be aiming to do in the future.  If it shows your blood levels are in the normal therapeutic range then you can basically ignore the fact that you're on a 'reduced' dose.  If not, then maybe they need to think a little more on if there's a way to get your counts up to tolerate a higher dosage.

On the exercise question, YES DO SOME!  It will do wonders for your mental health and the fitter you are the better you will cope with stress, with treatments, with side effects and with small children (mine are 4 and 6)  My key weapon in overcoming that mental hurdle was my wife bullying me mercilessly to get out for a walk if I didn't go off my own bat.  You may wish to rope in your family likewise.  Walking works for me, running is probably even better.  I'd always go for something that gets you out in the fresh air as well as giving you some exercise.  Take care with anything like weights as G does seem to make some of us more prone to muscle strains so take it carefully.

All the best

Phil

[Trey]

Gene,

A fitting name for having CML.  I assume that you were not translocated to Washington, but live there by choice.

You started off with a low risk profile -- low blasts, average WBC, apparently no other higher risk factors, and achieved CHR in a good timeframe which shows that you can respond to Gleevec.  So that is all good news.

300mg is not enough for most people to achieve treatment goals on a "normal" schedule.  Your 3 month FISH shows that you have responded to some degree, but also reflects that the low dosage does not work quickly.  Also, for someone on low dose Gleevec so early after diagnosis should probably have more frequent BCR-ABL monitoring.  Two data points 3 months apart do not show trends well enough when treatment does not follow the minimum recommended dosage.  So closer BCR-ABL monitoring would be a better approach if low dosage continues to be required, since if problems are going to show up, they normally show up during the first couple years.  Also, the recommended approach for low blood counts is a Gleevec break to try to reset stem cell responses, but you did not mention taking a break before going to the low dosage.  But that is probably beside the point now.

Your counts have come up high enough to no longer be an immediate concern, but there is concern that going to a higher dosage might cause a replay of low counts.  That may or may not be an issue.  If it were me, I would talk to the Onc about alternating 300/400mg every other day for a couple weeks to see what happens, and split the 400mg into twice a day doses.  This slow work-up to full dosage can train the body to accept the increased dosage.  I would not want to stay at 300mg any longer than necessary during the first couple years of treatment.  But if it remains necessary, I would increase the monitoring.

[Tedsey]

Since we are on the subject, got a call from my nurse this morning.  Wasn't surprised because I have been getting "sick" since Wed. night (terrible headaches and light headedness--knew platelets were dropping because this is what happened last time).  Only seem to get symptoms at night, however.  Weird.  So, I am tanking again and need to get another CBC quick.  Onc wanted me to send a list of any other meds I am on (which is weird, because she knows all this and had spoken to my other doctors).   As my onc. did not answer my question of what the PCR results were and if they did them at 3 months, I am wondering, since I read (Trey?) that platelets are some of the last to "normalize", if 50s and below is "normal" for someone to get this low only 3 months in.  I already had a 9 day Gleevec holiday.  Does low platelets mean Gleevec isn't working or just signs of intolerance?  Well, I suppose the only way to really know if it is working is the PCR or FISH, but not getting any answers.  Just a lot of wondering here.  This all seems to happen right after menstruating.  Doc has never asked me about menstruation even after I had a crazy bleeding up my back episode last month.  I think there may be some connection.  Has anyone experienced this?  I know it is rare, but Zoloft (just the other medication I am on) can cause platelets to drop, but it is very rare (but so is CML, so why not this?).

Hang in there GENE!  Hope you continue to do well!   I also have little kids (1 & 3).  Fresh air is the ticket!  It always makes me feel so good, even in this cold Chicago winter.  I am a Chicago native, but I grew up in Bellevue (moved back to Chicago years ago).  Couldn't help but laugh at Trey's comment about Washington State.  I moved away because I couldn't handle the dim days, (but some say they cannot handle the extreme cold of the Midwest).  However, Fred Hutchinson and the UW I know are great institutions.  Go Huskies!  My apologies if you root for the other team.  Go Cougs, then!  I have never been loyal to one or the other and wish them both well.  Hope the sun is shining where you are.  When the weather is fair, man, the Northwest can be sooooo beautiful!  I miss Pikes Place Market, the Puget Sound, Ivar's on Lake Union and the fir trees and mountains!  Take care!