Platelet Disorder Support Association

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My profile keeps getting deleted...

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14 years 6 months ago #13313 by donnaingold
My profile keeps getting deleted... was created by donnaingold
My username and password have been deleted twice now. This is Timothy's mom. Its very irritating:angry:
Anyway, so an update on Tim-he has been on 1mc per kilogram for months now (each week). He has skipped a week here and there with seeminly no effect. We are moving to another state, and since he's been so stable on such a small dose the hemonc is going to try to wean him off before we go...to see how he responds. Funny thing is, though he's been in the 200k's for a few months on this dose, the day we decide to wean...he's at 76k, haha. We are still gonna give it a try. Interesting.

I sure would like to use my old profile, but though it says my username does not exist, it says my email is being used. What the...:blink:
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 6 months ago #13316 by Sandi
Replied by Sandi on topic Re: My profile keeps getting deleted...
Post your problem in the Social Section under "Jeff please read". That is where the web guy looks for problems people are having.
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14 years 6 months ago #13343 by alisonp
Replied by alisonp on topic Re: My profile keeps getting deleted...
Hi Donna,

Long time, no speak! Its great to hear that Tim has been doing good with the platelets - its strange that missing doses doesn't seem to make that much difference. I hope that he manages to get off the n-plate successfully anyway.

Are you moving anywhere nice?

Ali
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14 years 6 months ago #13350 by lucidawn
Replied by lucidawn on topic Re: My profile keeps getting deleted...
Hi Ali,
This is Donna again, with my old profile. It keeps changing the pasword, but I was able to get a new one. I hope he gets off too, though as the hemonc said, he goes through periods where he's fine then it gets worse. He thinks he might be in a partial remission. I've been thinking this for a few months.

We are moving the Kansas City MO on May 1! I'm sooooooooooooooooooooo ready. Half my kids are ready, the other half want to stay here. I can't live here any longer. Not sure what I'll find in KC, but I'm sure I don't want to be here.

How are your boys?
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
Moderators: jaycharness
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