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#1 Tedsey

Tedsey

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Posted 31 July 2011 - 03:30 AM

Could anyone out there recommend a good source or sources for learning about PLT?  I have been living with very low PLT for a year now.  I seem to be OK, but since I have been attacked by extremely vicious mosquitoes this summer, I have noticed much petichiae around my golfball-sized bites.  Of course, it comes from scratching (I am in misery----and use bug spray!).  I didn't notice this extra bleeding when I was their nourishment last summer.  And all I need is the West Nile Virus...  Lucky once wrote that all the mosquitoes that bit him now have CML.  And hah, hah!  Take that!  And all that jazz.  Too bad they don't live long enough to suffer the effects of the disease and TKIs.  But on a positive note, they will die before the disease would ever get them (that's a bad joke, I don't believe any organism can get CML from ingesting CML blood).

I remember Hannibellemo mentioned a while back that she had a similar issue with bleeding.  If I remember correctly, she mentioned that her PLT were not functioning properly.  I have not been bruising (except when I wacked my arm the other night on the door frame--and sustained a little blue dot; the punishment did not seem to fit the crime, thus, I escaped with much less damage than I expected).

Just wondering,

Teds



#2 hannibellemo

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Posted 31 July 2011 - 10:17 AM

Hi, Teds,

Here is an interesting article addressing TKIs and platelet dysfunction. I still get petechiae from scratching and from doing nothing at all sometimes! My purpura on my toes was caused from that. Glad to say that has not returned. I mentioned to my onc the last timeI saw him that I was surprised that it only involved my toes and he said it was normal to show up on extremeties only.

I've also noticed that upon healing they will leave a brown spot that takes a while to go away. My toes are just now beginning to look normal in color.

If this is the worst that happen to me I have absolutely no complaints! My platelets have been in the low normal range for over a year now. (160-180)

Hope you are enjoying your summer!

Pat

http://bloodjournal....2/261.full.html


Pat

 

"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>


#3 CallMeLucky

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Posted 01 August 2011 - 08:16 AM

Hey Tedsey,

Here's another theory to throw into the mix, perhaps it has nothing to do with platelets.  I have some similar issues and my platelets are fine.  In my case I believe it is a skin issue.  My skin feels irritated a lot of the time, I rash easily, bleed very easily (it clots right away, but the smallest abbrasion bleeds).  I went to the ER a few weeks back because I had large bruises on my back and thought my platelets bottomed out.  My platelets were fine and they weren't actually bruises, even though they looked like they were, they were skin abbrasions slightly below the surface (skin actually felt smooth).

Anyway, your issue may very well be platelets, but I wouldn't rule out skin issues.  The TKI's seem to do a number on skin, especailly Gleevec and Tasigna, not sure about Sprycel in comparison.  Just some food for thought.  I am supposed to have an annual dermatology appointment in the next month or two and I plan on discussing these issues in detail and see what the doctor can come up with.

Everyone laughs about the mosquitos, they love me and none of us understand why, makes me question Darwin's theory, these mosquitos are clearly stupid

I actually have a theory about it - it's not that they are biting me more but rather they are able to get in and get out faster because my skin is less "durable".  I may be completely wrong but it seems like in the time it takes a mosquito to bite someone else they can do a real number on me and hit me multiple times.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 





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