Relapsing.....

Well it's only two months since my last blog (feels like confession) but so much has happened with this nasty cancer. As my numbers increase my regular oncologist pretty much said to wait and see what Dr. Talamo at Hershey wants to do. So my followup May 7th at Hershey seemed hopeful only to have him say I need to go get in a trail or try to get the new drug that is not out yet, carfilzomid....and referring me to another doctor in Philadelphia, Dr. Stadtmaur. He was booked for some time time so I took an appointment the following week with his counter part Dr. Weiss at University of Pennsylvania. So Dr. Weiss spoke with us but did not have all the lab work and files to determine how much the myeloma has progressed over the last month. I will have the lab work Monday from May 7th but the new tests were done in PHL and we will return on May 31 and get those results. He gave me information regarding some trails I could sign up for and we decided that I would discontinue all medication I was currently on to give my system a break. I have been experiencing difficulty breathing for two months and after ct scans showing clots around both lungs the answer was more drugs warfarin which I should have been on since the transplant....??? Any way my last velcade injection was may 7th after the 7 inoculations to get me up to date and I missed my revlimid the day before my appointment in Hershey so the last revlimid was May 5th. Its amazing, after not being able to breathe right for two months I finally started to feel better just 2 days ago and passed a clot or something that looks like an alien thru my nose (I will take it to the doctor Monday). So back to the trails, one drug Acy-125 has only been given to dogs, not doing that one, and the carfilzomid which is the new velcade, the one they want me on, I think I might have to wait until the FDA approves as I don't know if I can go thru the trail at this point. Reading the paperwork they have supplied I could have every symptom I have just have over the past year and don't know if I have the will power for much more. I may just opt to be drug free for a few months depending on the recent lab work and take my chances and just take a break. Not sure if there are any other options right now but we will discuss it further on the 31st before I make a final decision. So I will update again after the next train ride to PHL and until then focus on the new house......hopefully we are breaking ground next Tuesday and it will be done in two months.....now that would be progress!!!!