Back to Boston

Last Thursday, just over a week ago, I was all set to start the Velcade/dex/Rituxan treatment.  I just wanted to have my local hematologist finalize how he would work with Dr. Treon.  For whatever reason, they weren't able to get in touch right away.  Dr. Treon was away on Thursday, but he always has his cell phone, so it seemed strange that, by Tuesday, they still hadn't talked.  So the hematologist called me on Tuesday to say he hadn't heard anything.  He emphasized that it was important to get some treatment started, whether it was the Velcade or the RAD001 trial.  This was after I had decided, with his concurrence, that the Velcade treatment was probably the best bet.  So now I was confused again: why did he mention the trial option?  But after thinking about it, I decided to stick with my decision.  After all, Dr. Treon, the expert, seemed to be leaning in that direction.

Meanwhile, I started seeing all kinds of scary side-effect reports about Dexamethasone on the IWMF-TALK mailing list.

By Thursday, they still hadn't been able to talk, and then Dr. Treon called me on Thursday afternoon.  He reminded me that he had been leaning away from the RAD001 trial because of the level of invasion in my marrow (95%), the low hemoglobin (8.5), the fact that he had seen hemoglobin (HGB) drop even further in other patients, and that he hadn't yet seen if the RAD001 had an effect on the marrow.  But now, another patient with a similar age and disease profile to mine just passed the 3 month mark, and he found in a bone marrow biopsy that this patient's level of invasion had dropped significantly.  Now he leans more toward enrolling me.  What to do, what to do, what to do?  I told Dr. Treon I thought the trial would be a good idea, but wanted to discuss it with my family and with my doctor.  Thursday night, I left a message at the hematologist's office to please call!


So this morning, Friday, I heard once more from the hematologist.  Finally, he had spoken to Dr. Treon.  He said that he was fine with the trial, and that he would be glad to take care of my local care.  I'll be taking the RAD001 orally, and my blood counts will have to be monitored regularly.  Since the HGB could well drop, I may need transfusions to bring it back up.

And now it's back to Boston to get the trial started.  Dr. Treon will be taking a bone marrow biopsy (BMB), both to get a baseline and to put it into a data base he intends to use to investigate whether there is a genetic basis to the disease.  He's got close to a thousand samples in it already.  They'll give me my first month's supply of pills and a diary to keep track of my compliance and any side effects.  I'll also need to find out exactly how often I'll need to get blood work and other lab work done, and what sorts of side effects might constitute an emergency.  I'll take the train up next Wednesday morning, and be back late in the evening.  Easy as pie.

After that, I need to go to Boston once a month for complete blood work, and for a BMB at the end of the third month.  With luck, that will be the next decision point; with more luck, the drug will be working and the decision will be to stay on the trial.