rhonda and Sandila

September 29, 2009 at 7:29 am

thanks rhonda for your kind words… i’d hug you if i could. good luck and i might suggest that you make personal contact with some of our members who have done a high dose protocol of chemo without stem cells– like pam h, emily and perhaps a few others. it might be helpful to have some idea of what their exact treatments were– i know in the case of pam, she has written on her course of treatment, with dosages, etc. more than once. part of patient advocacy– try to know as much as possible about what you will discuss before you get to your probably very short appointment. medical talk is often greek to us ๐Ÿ˜‰ so the more you can converse about, the better. plus, i think it shows the doctor your determination and seriousness. my 1st neuro blew me off every time i tried talking about it… i did this stem cell thing on my own, or i should say– directly with other doctors, those at northwestern. i bypassed my conservative, naysayer neuro, and eventually left him. we were ideologically too polorarized. i actually had a frank and respectful discussion with him– told him the direction i planned to take, hoped for his support but was heading there anyway… you see, he thought i was doing great… i did not! very old ladies walking down the street made better time than me… i used to always point them out to soph– i’d say, “hey look at her, she’s doing better than me.” ๐Ÿ˜‰

Sandila– i don’t know the answer to your question. i think it is not chemo and that it is something used in conjunction with chemo in some cases– but that’s from a 5 second search i did before answering you. however, we have a wonderful member by the name of allaug. she lives in scandinavia and has an excellent success story using rituxan. she is in a sustained remission and in her case, it was the only thing that worked. i don’t think she ever went the chemo route. if you have an interest in rituxan, i would review her posts, look specifically for one she posted when she first signed on where she tells of her long journey with cidp and eventual remission with rituxan. also, she’s a lovely person and am sure would be open to talking with you about it. her english is better than most of ours :rolleyes:

moving along. i have 2 days left of neupogen shots– today and tomorrow. and thursday is a big day for me. at 7am i give myself my shots and then head over to the hospital for pic line placement and harvesting… i’m 99% sure i can have my mac with me– if so, i’ll post– or sophie will…

i have to say, while i have found neupogen pretty easy to tolerate, i did begin experiencing some of the predicted bone pain. nothing special, it feels like my back needs a chiropractic adjustment ๐Ÿ˜‰ it will be nice to pass this part of the process– then i can focus the final bang ๐Ÿ˜‰

yesterday i had routine labs– then sophie and i took a taxi to a highly reviewed italian restaurant where we had a wonderful lunch. i even had one small glass of wine ๐Ÿ˜Ž then we walked about 30 minutes, returned to the hotel and i did my daily stair walk– i start at the 17th floor and walked down to the 6th floor where we reside. each floor has 2 sets of stairs so they are doubles… going down stairs works the top of the thigh muscles in amazing ways… i call it, “physical therapy alice style.” ๐Ÿ˜‰

warmth and well wishes to all,