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Diagnosis Specific CML
Re:CML - My story (1 viewing) (1) Guest
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TOPIC: Re:CML - My story
#7614
hottuna (User)
Posts: 18
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Gender: Male Birthdate: 1958-08-07
Re:CML - My story 1 Month, 1 Week ago  
Hi Graham and Ian,
You might find the following links informative, hope you have broadband for the download.
http://www.youtube.com/watch?v=d6xU3bgBLIw&feature=player_embedded

http://www.patientpower.info/p2tv.asp?video=12339147&autoplay=1
http://www.youtube.com/watch?v=gRkZKI7kvsM

If you have any questions, don't hesitate to ask.

Peter
 
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#7622
Jdoug34 (User)
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Gender: Female Location: Rockhampton, QLD Birthdate: 1958-06-11
Re:CML - My story 1 Month, 1 Week ago  
Hi Graham and Ian
Sorry to hear of your diagnosis but keep your spirits high as the medication available gives us generally great quality of life. Remember to try and stay as healthy as you can apart from the CML as your energy levels may fluctuate with treatment. Good luck with your treatment and test results. Keep talking to us on the forum.
Jeanette
 
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Cheers
Jeanette
Dx CML Christmas 2008
22/12/08 PCR 58.86%
15/04/09 PCR 1.45%
14/08/09 PCR 0.09%
14/10/09 PCR 0.11%
7/12/09 PCR 0.05%
15/02/10 PCR 0.07%
04/05/10 PCR 0.06%
*1271 in Zaive zero club
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#7623
jodi43 (User)
dx in April 2010
Posts: 13
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Gender: Female Location: Melbourne Birthdate: 1967-05-11
Re:CML - My story 1 Month, 1 Week ago  
Hi Graham Fancy seeing you here it's a small world hey! hahahaha
Yes this is a great site i have learnt so much I got my daughter to download and print me a Food Salicylate Content List. You'll be suprised on what food's cause pain's in your joints (thanks again Silvana....xx) She's been a great help. Here's the link if you want to have a look...
http://www.zipworld.com.au/~ataraxy/Salicylates_list.html

catch ya another day
Jodi
 
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#7635
gpod63 (User)
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Re:CML - My story 1 Month, 1 Week ago  
Hi , Started on Glevic today ( 31/07/2010 ) feeling good today , I guess it will take a couple of days to go through my system, so I hope the side affects are minimal

I truly hope everyone is well & staying strong.

I would like to thank everbody for their support & feedback, it makes me feel that I'm not alone and that I can speack to people with CML who understand how I feel

The information that is available is great, very helpfull.

Thanks again.

Graham
 
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Last Edit: 2010/08/02 21:46 By gpod63. Reason: spelling mistakes
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#7644
gpod63 (User)
Posts: 10
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Re:CML - My story 1 Month ago  
Hi , results are in from blood test yesterday, FBC is normal, Didn't sleep all that well last night

4th day on Glevic, no issues to report - yet ! , so lets hope that all go's well. Will report in a few more days how I'm going . I'm on 400mg , 1 tablet aday,

Can anyone advise me about what is best to take for headache's, the leaflet in the box sugests that you don't take anything with Paracetmol in it.

Hope all is well in your world !

Regards

Graham
 
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#7646
kamak (User)
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Gender: Male Location: sydney Birthdate: 1970-08-07
Re:CML - My story 1 Month ago  
Hi Graham

Did your Dr offer you to join Clinical trial? If not you may ask her in the next visit to see if you're eligible. My Dr asked me to join the CML Tidel II trial. I found it's useful as you are closely monitored by a team of Drs / researchers & get more tests done eg liver & kidney functions, bcrabl, marrow, glivec level. I'm on 600mg since Dec09. So far all results are heading in the right direction.

Let us know how you cope with the golden bullet.

Kamak
 
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