We've Had a Few Set-Backs

azoyizes · 08-05-2010, 07:20 PM

Hi Everybody,

As to Arnie's health, Friday he took his 10th Sutent pill and looked and felt awful. He had terrible fatigue, shortness of breath, was sleepy but couldn't sleep, hungry but couldn't eat, mouth ulcers, plus a few more side effects that I won't go into here. I told him to stop taking Sutent (which is what his oncology nurse told him to do) until he could talk to her Monday. Daily, his symptoms have been improving. However, he's not back to normal yet. He talked to another oncology nurse at UVA (his was out of the office), who talked to the doctor and then called him back. She said to stop taking the drug for a week, and that she would have his nurse call at the end of this week. They will lower the dose; he wants to take the 25 mg dose instead of the 37.5 mg dose. I now question why they start their patients on the 50 mg doses first instead of the 25 mg and work up from there. He has to get blood tests done Monday, because his liver enzymes were high.

I got into an MS flare, probably due to stress and the heat. I called my neuro and he ordered a 3-day course of IV SoluMedrol, given by home health RNs. This afternoon, I'll receive my 3rd and last dose. As soon as the nurse leaves, I'm taking a long shower and washing my hair. I've been taking sponge baths because I'm not allowed to get the port site wet. It's located just above my left wrist, and so far hasn't caused any discomfort. The nurse said that she would like to call my neuro about setting up home physical therapy twice a week to help me with my balance problems. I asked her to please find out what my co-pay would be, as I only have Medicare. She promised to do so. Maybe if I do this, it will help.