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I'm posting my first question

Started by kat73 , Jul 27 2015 05:59 PM

private messages computer problems

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3 replies to this topic

#1 kat73

Advanced Member

Members
884 posts

LocationWashington, DC area

Posted 27 July 2015 - 05:59 PM

I only just discovered that three lovely people private messaged me WEEKS ago and I didn't know it. I was looking for something else and came upon the two teeny weeny icons for that and lo and behold, there they were. I quickly and remorsefully wrote back, but one button said "post" and another "fast reply" and I think I did one way for one and another for the other. Or something. I really don't think they went, because they still show up in my "inbox" (my own replies, I mean. What are they doing THERE? Shouldn't there be an Outbox?) I also don't understand "notification ON/OFF" Notifying me? Notifying them? Yes, I did go to the instructions section and the settings section and I still don't understand. This actually is what kept me lurking in the shadows for 6 years instead of posting - I knew I'd run into trouble. Anyway, I am mortified that someone wrote to me and they think I didn't write back. Please somebody straighten me out. In the meantime, is it ethical if I do a shout-out here with their names and say, please check your private messages and if my answers are not there, let me know? They are:

janne - mlk210 - tazdad08

Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

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#2 Trey

Advanced Member

PS Beta Group
1,705 posts

LocationSan Antonio, Texas

Posted 27 July 2015 - 09:02 PM

If your response shows up in a new window immediately under their message to you, it was sent.

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#3 mlk210

Advanced Member

Members
158 posts

LocationIllinois

Posted 27 July 2015 - 11:10 PM

I got mine, Kat73! Thank you!

7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

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#4 kat73

Advanced Member

Members
884 posts

LocationWashington, DC area

Posted 28 July 2015 - 09:14 AM

Thank you, Trey and mlk! And again, apologies for being so hapless. I see I even posted my question twice. I wish the "machine" had a nice "ding" sound, like when I text - then I'd know it went. Also, what about the notification question?

Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.