Carina and Retuximab.....

Hello everyone....I just need to you all how carina is doing...she had the retuximab treatment about 7-8 weeks ago.....the first treatment but finished it a little over 3 weeks...closer to 4 weeks...and she has been getting her blood checkd every week....well today she went in and her platelets were at 207k and her hemoglobin was at 10 and her immune syste is holding its own....they even decided to hold off on getting her blood checked again until THREE WEEKS...now that is some awesome news to me....she seems to be responding well to the treatment and seems to be going into remission....thank God....i read the book Joan wrote...wow...helped me so much to truely understand what she was feeling....i just wanted to share this with you all....please all you....never give up....fight fight fight.....tina

Ta-Da! So glad to hear Carina's platelets are giving her a grand performance! Now, no more steroids...soon: or CBC's...or doctor appts...or bruises...or worry. Well, LESS worry! To infinity and beyond! Ann, Caitlin's (24) Mom

Been thinking about you and Carina. So glad she is doing well. Keep up the good work. Joan, mom to Matt , Evans Syndrome 22 years

hi joan...i have another situation now....carina is complaining of back pain which radiates to her stomach and i have been doing some research and i read that post retuximab treatments can reactivate the hepatitis virus...now she was tested before for the hepatitis virus and it came back negative but the doctor said that with her lupus diagnosis it could sometimes be a false negative....so maybe she does have the hepatitis virus.....now i am starting to freak out again.....i feel so bad for her...she is in pain...i took her to her pediatrician yesterday and we are still trying to get in to see a rheumatologist....it is such a stupid medical system here....you have to be referred by the doctor....and then you have to wait for them to get all the info from the other doctors and then you have to wait till the doctor can see you because he is a "specialist" and all the mean time she is suffering....we had it all planned out to see the rheumatalogist but then the hemotoligist schedules the retuximab treatments and then the rheumatologist was put on hold and then school and now this.....im sorry i didnt mean to vent like this.....do you or anyone have any advice or experience is this type of situation.....thank you tina

Hi Tina, I'm sorry to hear Carina is not feeling well. Matt developed abdominal pain and rapidly lost 10 pounds three years after getting retuximab. Several MDs, scans and an upper scope later they decided it must have been another autoimmune process as in autoimmune hepatitis. By then the pain was gone. They did find he had gastritis even though he had been off prednisone for 2 years. The GI doctor was the most helpful but only because he actually cares about his patients. Do you mind if I ask a couple of questions? Is the pain on the right side or left? Does it get worse when she moves or after eating? Has she had any x rays or scans? IF she has a CT scan and it shows enlarged lymph nodes and spleen try not to freak out. This is common in ES. Anyway feel free to vent. Even after all these years and my son on his own at 30 I am still afraid that I did something wrong or should be doing something else for him. Hope Carina is better by now. Joan

Hi Joan...thanks for your kind words....she is barely going through testing...they do plan to do more exams...xrays...then cat scan and so forth...the pain she has is on her right side in her stomach...and she complains of pain in her low back and it radiates UP her back to her neck....we finally saw the rheumatologist last week..and he says she definitely has fibromyalgia and drew more blood to do more exams....so that is where we are right now....she is still in pain but tolerating it...I just feel at times that i am missing something that is so obvious....i know i am not a doctor but i just cant put my finger on it....tina

Hi Tina, Sorry, I don't have any ideas what is causing Carina's pain. I hope you are getting some answers. You are doing everything you can. You are listening to your daughter and researching and reaching out to others by asking questions. Advice I can offer is to write down dates and symptoms and get copies of test results. When Matt saw a new doctor I brought anything I thought might be relevant hoping someone could make sense of it. If the pain persists you might consider acupuncture.....Good luck Joan

Hi Joan, thank you for your kind words and advise. she seems to dealing with it better although she has good days and bad days. We are waiting for results from tests ran by the rheumatolosist. so we shall see...again thank you..