Ohio State Update

I have been too exhausted and confused to post to my Blog. The travel was harder on me than we anticipated -- yet another indication of how the leukemia is marching forward. We were blessed to share the days with our middle daughter who traveled with us.

The OSU team felt that, indeed, the CLL had progressed since my fall visit. My spleen is full of disease and extremely large and painful. I am battling neutropenia and platelets and hemoglobin are declining. Fatigue has worsened as have the infection numbers and severity.

Last fall the OSU doctor had recommended my doing the Revlimid (experimental, not FDA approved treatment) trial at OSU - and I made this trip thinking that I would leave OSU, most likely enrolled in this trial, if he had not changed his mind.

I first met with one doctor, he spent over an hour with me and answered all my questions. He told me I was going to have to increase all prophylactic attempts to avoid infection - -including NEVER being able to discontinue the Posaconazole ($6000 per month antifungal I am now taking). He also recommended that I double the Acyclovir I am taking to prevent shingles and add Bactrim (which I will discuss tomorrow when I travel to Indianapolis to consult with my infectious disease doctor). To begin Bactrim, I will have to first be desensitized.

I looked the first doctor straight in the eye and asked him if I was his Mother, what he would tell me to do and without blinking an eye, he said high dose Rituxan. He even went as far as to discussing with me how they would hospitalize me for the first week at OSU, etc. I totally (wrongly) assumed that he and my primary OSU oncologist had a new plan for me. He left the room and I was sitting there, pretty confident I knew what the treatment plan was going to be (so confident that I even had my date book out, making plans).

The primary oncologist came in and he (like his assistant) said my disease had really progressed and we needed to move forward with treatment. He then dropped the bomb - said he had been on the phone with the NIH and he would like me to consider going to the NIH in a Washington, DC suburb for their Revlimid trial. Not only was I shocked that it was not going to be high dose Rituxan, but also very confused and upset to consider all of the travel involved with NIH trial participation (I traveled in the past for several years to the NIH).

I asked about the chemotherapy Treanda and they told me absolutely NOT. The chemotherapy Fludarabine is ruled out. Campath is not an option.

I personally know the investigator of the NIH Revlimid trial from my travels there in the past. He is a wonderful physician and his research nurse has already e-mailed me the information on the trial. Unless something drastically changes, I feel no peace about this plan and I will never follow a plan without God's peace ruling.

I am so confused, upset, exhausted and perplexed, I can barely think straight. As a patient, to not have any of your consulting physicians be able to agree upon a treatment plan is absolutely maddening.

I appreciate your e-mails and prayers. Keep looking UP!