[Al's Wife]

Thank you, Patti and Sally, for the hugs and support. We got home about 8:00 p.m. last night. It seemed like a really long week and Al and I are both exhausted. If I'm this tired and I don't have MDS, I can't imagine how he must feel. But, as usual, he was a real trouper. He began taking the Eltrombopag (Promacta) last night. He takes two 75mg pills at the same time every day for a total of 150 mg. We are hoping to get our labs done locally every week and will only have to travel to Tampa once a month. He will get a bone marrow biopsy after the first month, second month and fourth month.
And of course we got a letter from the insurance company today telling us that since we have decided to go Out of Network for treatment that we would be responsible for additional charges, blah, blah, blah. But you know at this point, I have other things to worry about.

Dr. Komrokji and Dr. List work together at Moffitt. Before coming in to see us Dr. Komrokji had discussed Al's case with Dr. List and they concurred over our options. We decided to go with the clinical trial now and IF there is no improvement to perhaps try Dacogen. Dr. K also mentioned some other things that are coming along over the next six months. He said we are just buying time now, hoping to get the platelets up and the blasts down.

He did say that other than having MDS, he felt Al was in very good shape for his age and that he would probably recommend induction/consolidation down the road if things go south and Al goes into AML which he thinks is a strong possibility. He also mentioned that transplant is not totally out of the question even at Al's age. But he cautioned that it would be a last resort and better than the alternative. There was also discussion about quality of life and risks versus benefit, but overall it was a good discussion and we really liked Dr. Komrokji. In fact we found H. Lee Moffitt Cancer Center to be probably our favorite of all the treatment centers we've been to (NIH in Bethesda, MD; Emory Winship Cancer Center in Atlanta, GA; and M. D. Anderson in Houston, TX). Most of the people seemed friendly and caring and the wait times (with one exception) were much better than other hospitals.

When they did the labs on Wednesday, we learned that Al's platelets were down to 6,000 (they had been stable at 16,000 for the last two months) and they told us he would have to have a transfusion and that they would place the order and we were to go to the Infusion Center at 4:00 p.m. So we saw the doctor, had to go back to have more blood drawn, and then went to the cafeteria. At 4:00 we went to the Infusion Center and that's when we learned that they didn't order the platelets until you checked in at the Infusion Center. Grrrrrr We had wasted a couple of hours, which meant by the time we signed in, the platelets were ordered by the Infusion Center, and delivered two and a half hours later, it was 7:30 p.m. before they finished administering the platelets and we left the hospital. The next time we'll know - go check into the Infusion Center before you do anything else when you learn you have to have a transfusion!!!!

We stayed overnight in Tampa because the clinical trial coordinator for this particular trial was not there Wednesday afternoon when we saw Dr. Komrokji. So we had to be back at the hospital on Thursday to meet with her, sign the consent, go over all the other "stuff," have an EKG, another blood draw (transfusion only brought the platelets back up to 16,000), and get the drug to bring back home.

We might be entering a new norm and might have to get more platelet transfusions. The doctor seemed very surprised that the only time Al has needed blood or platelets was during the Sapacitabine trial last year. It makes me nervous because they really cautioned us about the dangers of his platelets getting so low - bruising, bleeding, bumping his head causing hemorrhaging, etc. We really needed something else to worry about; right?
And of course my husband, despite his illness, tries to maintain a fairly active lifestyle albeit different than before MDS. He loves antique cars and loves to work on them and still spends a good bit of time in his shop when he feels like it. I think this hobby has been a wonderful way for him to keep his mind off his illness. He gets in that shop and is in his own zone, thank goodness.

He's had to rest a lot this week. In fact this afternoon he lay down on the sofa and napped, something he seldom does.

I'm so hoping this trial will work some wonders for him. I'm sorry if I've rambled. I guess you can tell I'm really tired.

Thanks again for the support.