Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Whoa! It's incredible the stories that some memebers have live through. Thank God your children are older now. But I do know that you still mother them as adults & it's still stages you want to enjoy. I trully hope that Cytoxan ( never heard that one) IS the one. Is it an injectable or infusion?What does it depends on , if you can get on it tom?. You're very young & have many yrs. of health to be enjoyed still. I'ts unbeliebable that in this age & age it can still be so dificult to get this diagnosed. & treated! At least you are familiar wt. this field, & still had all that dificulty ( like Nissa is a surgical nurse) getting the right Dr's & Dx. I guess it doesn't matter . I used to think It was mostly cause I was doing all the leg work & finding the Dr " s. muyself , why was so dificult. No any more. How did those 3 Dr's happened to get to be together? wish you luck tommorrow! VIVI **************Make your life easier with all your friends, email, and favorite sites in one place. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Hey Vivien, The Cytoxan is not widely used for Still's, only occasionally..,But it is used to treat B-Cell lymphoma, so we are going to try 2 kill 2 birds with one stone. It will be given by IV, so I hope by tomorrow they have the dosing worked out. Oh forgot to mention and maybe I did the Cytoxan is a chemotherapy drug and we are going to use it at the chemotherapy dosing I think. Factors of why I may not start tomorrow if my fever goes back up or my WBC goes back up, keep your fingers crossed that when I go in the morning that everything will be just right. All the Drs got together by recommendations, I first saw Dr. Baltz he is my Hematology/Oncology guy, he recommended Dr. Trigg my Rheumy, and she recommended Dr. Silvoso, the GI guy. So I thought that was kinda neat that they thought that much about each other professionally and had worked together in one combo or another before. When I had all my abdominal surgeries, Dr. Silvoso was going to refer me to a surgeon and I asked him, if I was your daughter who would you want to operate on her. And I got a wonderful surgeon named Dr Rowen and from time to time he is still part of my team. I think I am going to get a port put in before the first of the year, I have been stuck so many times for IV's my arms look terrible and I used to have pretty good viens. But, also due to no stomach issue I don't absorb meds, so I either get injections or IV;s for a lot of my medicines. My pain meds are liquid which is gross!! You know that they call Still's the diagnosis of exclusion. I sincerely hope you get answers soon, I know it can be very frustrating, but hang in there, I will be here to support and listen(or read). I take my laptop when I have to get IV's, so stay in touch tomorrow. Right now I am having trouble getting to sleep, so I am playing on the computer for a while, this is usually a good time for me to research stuff. Lots of Hugs and Well Wishes, ________________________________ To: Stillsdisease Sent: Monday, December 8, 2008 9:54:09 PM Subject: Re: Re: new begining Whoa! It's incredible the stories that some memebers have live through. Thank God your children are older now. But I do know that you still mother them as adults & it's still stages you want to enjoy. I trully hope that Cytoxan ( never heard that one) IS the one. Is it an injectable or infusion?What does it depends on , if you can get on it tom?. You're very young & have many yrs. of health to be enjoyed still.. I'ts unbeliebable that in this age & age it can still be so dificult to get this diagnosed. & treated! At least you are familiar wt. this field, & still had all that dificulty ( like Nissa is a surgical nurse) getting the right Dr's & Dx. I guess it doesn't matter . I used to think It was mostly cause I was doing all the leg work & finding the Dr " s. muyself , why was so dificult. No any more. How did those 3 Dr's happened to get to be together? wish you luck tommorrow! VIVI ************ **Make your life easier with all your friends, email, and favorite sites in one place. Try it now. (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000010) Quote Link to comment Share on other sites More sharing options...
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