Giving Vidaza Another Go...

Hey everyone, I know many people are wondering how this admission is going, if the HUP team was able to determine the source of Mom's pain, and when they will begin treatment. I decided to stay in Virginia for now, but when I spoke with Mom last evening on the phone, I took a few notes that she asked I share with you.

During the first few days of the admission they gave Mom whopping doses of Hydrea to help knock down the white count. By whopping, I mean she was taking three or four pills a day for the last few weeks during which the HUP team told her sometimes people took up to eight. The doctors ordered a dosage equivalent to twenty-four pills which she took for two consecutive days. This got the white count down to a more reasonable number (from 77 to 25 in three days) to prepare mom for the chemotherapy. Unfortunately, her white count and platelets continue to drop, and she's now back on neutropenic precautions as her white count is 2 and her ANC is less than 1000.

In a preemptive measure, they tweaked Mom's antibiotics again to include Voraconazole to help combat fungal infection as Mom's sinuses continue to worsen. They also added Tobramycin, which fights against the gram negative infections Mom has suffered with previously. The big concern with Tobramycin is more hearing loss and vertigo. Mom immediately brought this up but at this point the benefit outweighs the risk. Mom was also concerned since Tobramycin is toxic for the kidneys and with her elevated BUN and Creatinine, this of course causes her some worry.

The doctors had ordered CT scans, MRIs, and X-Rays in an effort to determine the source of Mom's debilitating pain. At first they thought Mom may have a chloroma (pocket of leukemia cells) in her hip and discussed a short course of targeted radiation therapy which would shrink the affected site and hopefully reduce the pain. What they found after more testing, however, is that there is leukemia infiltrated throughout her hip and spine. In the spine, the leukemia is causing discs to bulge and compressing nerves, which explains Mom's agonizing pain. Due to the severe pain in Mom's heels, they suspect the inflammation that appeared on the X-Ray is also likely leukemia as well. The doctors decided it was time to begin the chemotherapy due to the widespread presentation of the leukemia. They are hopeful the treatment will reduce the instance of leukemia throughout her bones and Mom will experience a significant reduction in pain.

They begun the chemotherapy Thursday evening. She's back on Vidaza but this time it will be administered via IV. The doctors chose a five day course of treatment as opposed to the previous plan of seven days. If mom tolerates the chemotherapy well, they will opt for a seven day course in about another month. At this point they want to watch mom closely to see how she tolerates the chemo and get her pain under control.

Up until yesterday, Mom was continuing her heroics and trying not to 'overdue' it with the pain medication. Mom always fears she will end up at the Betty Ford clinic. What we've all been trying to tell her these last three and a half years, is that these drugs were invented for times like these. The pain team has been visiting with Mom a few times a day and they told her yesterday she may need to get used to the idea of being on some form of pain medication for the rest of her life.

When I spoke with Mom on the phone in the morning, she was in such severe pain she said she couldn't move. The pain team came in and had a long talk with her and doubled the amount of pain medication she is on. Because of Mom's previous use of the pain medication, she needs A LOT for it to have an effect. For now, they've got her on 40 mg of oxycotin twice daily. She also has the pain pump that administers 100 mcg of Fentanyl with each hit of the button. She bragged to me last night she only hit the button three times yesterday. Her pain levels were much better and she said she was able to do seven laps in the hallway with the walker. This is quite a feat as she likely hasn't moved that much in weeks. She knows that she needs the pain medication to help keep her moving, and she knows she must keep moving to prevent complications such as pneumonia and bed sores.

Mom's had some fevers already, the highest being 101.6. She's still on 40 mg of prednisone which can mask infection by keeping those fevers lower. No one is willing to chance reducing the amount of steroids Mom is taking at this point. The steroids do provide some pain relief and keep Mom's appetite up - I believe yesterday was the first day she refused to eat the hospital food. Since she's neutropenic, many of the foods she enjoys are off-limits for now. The Teklits men seem to have Mom's cravings down to a science, and keep her room well stocked between their visits.

I'm still home with my family in Virginia as Mom has urged me to 'wait' and see what happens. If all goes well she'll be home in a few more days and laying low until her counts return to normal. We will keep you posted as we learn more. Thanks to all for your prayers, posts, cards, and calls. We all appreciate it more than you may know!

Love,

Jessie