Guest guest Posted December 8, 2008 Report 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
Guest guest Posted December 8, 2008 Report 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
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