Tour de Cancer Centers

I have been doing pretty well since getting out of the hospital on Jan 2nd. We stayed in Richmond after my discharge to make sure my cold was improving. If I went home I knew I would be exposed to more things and wouldn't be able to sit still. Remember how I said those IV antibiotic balls were so cool? Well they got old really quickly since I had to do 5 of them a day. It seemed like something was always needing to be taken out of the fridge, hooked up, disconnected and flushed, and if I needed to go somewhere....packing up was a task! It kind of reminded me of when you have a newborn and there is so much to do all the time and you aren't 100% sure of what you are doing! I finished those off on Wednesday and was switched to just a pill antibiotic for prevention purposes. So far my cold symptoms have continued somewhat, but no fevers or sinusitis.

This past week Brant and I went to both Johns Hopkins and Duke. It was a lot of driving and two nights in hotels that didn't help with getting rid of my cold. Brant is a great driver and we were blessed with little traffic and good weather (but cold!!!). Both facilities were new and very attractive (sad there is so much money in cancer.....). Both doctors we met with were very good and spent a good deal of time talking with us. It was good to do this type of investigation while I am still under a treatment plan (Vidaza). Both doctors said that Vidaza with DLIs is what I would be doing at their institutions. It is not uncommon for the blood counts to remain very low for quite a while and still end up having positive results. The 4-6 month range on this treatment plan is where they start making some decisions if it is working.

So our discussions were more based around what are the next options if Vidaza doesn't work. Both docs agreed that more toxic chemo isn't the best option for me even though that is what is readily available. Leukemia research is focusing on more targeted therapies and interrupting the cellular pathways of specific leukemia cells. It is very cool stuff, but unfortunately, most of it is in early development with mostly Phase 1 trials and maybe a few Phase 2 trials. It is nice to know we have some options for down the road, but we didn't hear anything that would have us change course right now.

In between days at the cancer centers I was at clinic or at home. Ruth took me up one day, and Dad did another. Mom decided to share my cold with me and took the week off to stay home and rest. It was nice to be home a few nights and to see the kids. Ruth moved in as Aunt Nanny and made sure there was some stability for the kids as we came and went. It helped a lot. Thanks!!! This morning Mom & I packed up for a week in Richmond. I started Round 4 of Vidaza today and will have a bone marrow biopsy in early February to see how things are going. I am hoping I can spend most of the three week Vidaza-recovery time at home, but I know better than to plan on it! We are just taking it one day at a time and trying to be as healthy & germ-free as possible.