Jun 06, 2013 - 8:10 pm
I'm sorry I'm not the best at staying connected and responding to everyone. I respect you all so much, I appreciate the shared wisdom, and I really think you are all a wonderful, caring, and brave group of people. I just run out of time for checking posts and responding. So I occasionally read the posts. and then rarely respond, although I often would like to.Others usually say what I would have said anyway. Great minds think a like.
As to my update. After 6 rounds of R-Chop, 2 rounds of RICE, and 2 Rounds of RDHAP, the cancer contnuied to progress. The R-CHOP was manageable but the RICE and RDHAP wiped me out. So I've been recommended for a clinical trial at STanford, which sounds really promising, but it's taking forever to get me there. MY doc was too slow in making the referral and following up. My last RDHAP was Aprl 10th. I became very symptomatic May 10th and ended up in the ER and getting a round of Gemzar and Oxiplatinin. That helped with the symptoms. So now I'm another 4 and 1/2 weeks out from any treatment. I see my new doc for the new treatment next monday June 10th. I pray they start my treatment on the17th. I am so symptomatic, and they are giving my drugs to deal with the symptoms until treatmen can start.
If the cancer responds to the new treatment, and i'm sure it will, we may have potential match for the bone marrow donor, yay!
This is a crazy ride wer'er all on. If any one else has had primary mediastinal large b cell lymphoma and experienced anything like I have please share!
Nathan, would love to hear how you're doing. I hope your well and finding a treatment that works for you!
Love, Light, and hugs to all,