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5 Years "Remission"...seems to be coming to an end

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12 years 3 months ago #34648 by jeffrey71
Rob,

I think you will make an excellent choice! Here we are on the PDSA Minnow! LOL

Jeffrey
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12 years 3 months ago #34649 by jeffrey71

Vdeutsch85 wrote: Aww :( I'm sorry that she is off the market!


Me Too! :)
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 3 months ago #34653 by Sandi
You guys are funny. :P
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12 years 3 months ago #34660 by Rob16
I look more like the skipper than Gilligan. But I'd rather be Thurston Howell III.
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12 years 3 months ago #34668 by jeffrey71
I agree on all fronts! LOL
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12 years 3 months ago #34678 by Kim081
Natalie, how was your doctors appointment?
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12 years 3 months ago #34703 by jeffrey71
Natalie,

What did the doc tell you? You doing ok?

Jeffrey
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12 years 3 months ago #34711 by Vdeutsch85
I remember a few weeks ago on here talking about Johnny Depp! I forgot about the movie chocolat.....such a sweet story and he's in it! It's a must see if you haven't!
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12 years 3 months ago #34714 by jeffrey71
The Willy Wonka remake? He was good in that. I like that story too. I need me a gold coupon for something, I don't care what just something! LOL I would also like the chocolate bar.... I can't get Winifred to make me a cheesecake! Life tough! LOL
12 years 3 months ago - 12 years 3 months ago #34734 by

The Willy Wonka remake? He was good in that. I like that story too.

Nope, 'Chocolat' was a romance flick that Depp did in 2000.

Sorry.....Gene Wilder had already established himself as THE Willy Wonka 34 years before Depp attempted his rendition.

I did forget the one movie that I really liked Johnny Depp in; 'Ed Wood'. He was great as Ed Wood.

I think Disney is currently regretting how much they paid Depp to star in 'The Bombed Ranger'.
Where is Jay Silverheels when you really need him?
.
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12 years 3 months ago #34737 by Kjenkinsap
Hi Dru, I am an OT in a school too. I usually see home care patients in the summer for extra savings and keep experience. But I'm spending my summer at drs and hospitals with my soon to be 17 year old who was diagnosed in June. I am sending you many positive thoughts. Grateful it is summer and he isn't missing school and I'm not missing work. Kim
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 3 months ago #34740 by dru
Hi Kim

Nice to be in touch with a fellow school OT. I used to work in our districts summer program but now lucky to have a great COTA who does it and I can take a nice break. Hope your son is doing okay. Positive thoughts sent your way as well.
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12 years 3 months ago #34754 by jeffrey71
Dru!

If you are on the prednisone again, I have large list of things that I have not done or finished! hehehehehehehehehe.

Jeffrey
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 3 months ago #34762 by dru
Haha, I will keep you in mind if I can get myself out of my chair. Maybe my doc will increase my prednisone so I can get some cleaning done :)
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12 years 3 months ago #34822 by NatalieM
Hey Everyone,
I posted 1.5 weeks ago upset about my count of 103. After that five year remission, hearing that number was like a kick in the stomach! I recently returned for another weekly count and they have risen to 110,000. I know it isn't a huge improvement, but I will take it! I am hoping and crossing my fingers that the dramatic drop was from a bad case of food poisoning. For now, I am praying and hoping that they will stabilize in a safe range. My hematologist has told me that they want to try and keep them above 100. If they begin to go in the 70s, they want me to consider Rituxan again. Ugh...I don't want to think about! They're reasoning is that they think I will definitely respond again to the treatment and they don't want me getting extremely low before the treatment ...I guess the higher they are when I start, the higher they will rise--which means the longer they will stay high. For now, I am praying that I won't have to cross that bridge for a while! I am also reading up on research about autoimmune diseases and am making some life changes to improve my overall health. I posted about a recent book I purchased under the topc General ITP Questions. It explores how to restore the immune system by eating right and possibly encouraging a remission. Thanks for your continued support and positivity!
~Natalie

*Here's to high platelets!*
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 3 months ago #34832 by Sandi

NatalieM wrote: I guess the higher they are when I start, the higher they will rise--which means the longer they will stay high. ~Natalie


Natalie - that is great news! Logically though, the above doesn't quite make sense. You seem to have a bit of an aggressive doctor which can be good on some ways, but not so good in other ways. Hopefully you will stay up and not have to worry about it!
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12 years 3 months ago #34836 by NatalieM
Sandi,
I really do hope I don't have to make those hard decisions! I thought my hema was a little aggressive as well--she admitted that it might seem rushed but has confidence that it will work again and she "doesn't want them to get out of control again." With my last bout it took a really long time to get them above the 70s, what with prednisone tapering and waiting for the Rituxan to kick in, which took some time. However, she is one of the most respected hematologist/oncologists in the Charleston area and I have a great relationship with her. I trust her decisions. However, I may try to hold them off in the even that they start to get close to 70. In my past experience, Prednisone worked wonders (for my blood...nothing else!) so if she puts me on that if they drop below 100, I respond well to it and it should raise them. I warned my parents that this will probably be on-going saga for months...up, down, up, down. Hopefully, I won't have to experience it, but I am fully prepared if I have to! Thanks for your comments! I always enjoy hearing your opinion!

*Here's to high platelets!*
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 3 months ago #34842 by Sandi
I hope it all goes well and I hope you are enjoying the rest of your summer! :)