End of Week 2

Boy, what a week it's been. My plan was to update mid week and get everyone apprised on what was going on, but as you'll soon find out things kept me from doing so.

As you might recall, Week 1 went relatively pleasant. The day after my last update, I started developing a rash. It began on my chest. Each day after, it slowly spread and continued to get worse. By Friday, it had fully covered my body. My skin was literally covered with red spots, to the point you could almost not even see where the bumps were separated. Fortunately, there was no itching involved, but I was advised to take some Benadryl if needed.

The rash wasn't the only issue. The joint pain intensified and became much more consistent and concentrated, mainly in my hands/wrist and feet/ankles. In addition, my whole body would become stiff when I was sedentary. The longer I remained still, the more I ached when I tried to move again. I felt like a tin man without oil. This made getting up in the mornings a chore. Any time I got up from the computer or couch was a hassle. But because my feet ached, it was hard to continually move around and stay active.

I have a week at the end of my Vem cycle for what is called a "wash-out" period, where the medicine still in my body can be naturally flushed out before the second treatment (the Ipi) can be introduced. So for the full brunt of the side effects to not hit me until after a week makes sense, giving it time to ramp up and get to full strength.

Luckily, this was as bad as it was going to get. Over the weekend, my body started adjusting itself. The rash started reducing and I felt less lethargic. While I still have a rash, stiffness, and a bit of joint pain... it's calmed down to manageable levels again. The rash is mostly on my arms and legs. My face doesn't quite burn as much as it did before and my eyes aren't as dried out.  I get occasional headaches, but nothing major.

The one thing to note is I experienced a shortness of breath during some exertion. I could feel my heart beating in my chest, my head pounded and throbbed like I just got done running a race when I hardly did anything out of the ordinary. I felt it was worth mentioned when we visited Emory this past Tuesday for my two week checkup.

The doctors deemed much of my side effects unremarkable and not to be too concerned with. When I mentioned the overexertion effects I felt, they decided to test my pulse and oxygen levels when walking and ordered an x-ray so they could see if something was affecting my lungs. After they noticed what was (to them) a considerable drop in O2 levels and an increased heart rate while walking normally, they immediately ordered a CT scan of my chest.

They told me not to worry, but wanted to make sure I didn't have a blood clot in my lungs and the CT scan would show them more than an x-ray would. But just scheduling me for a CT the day of would mean some patience on my part and a lot of playing the waiting game. In all, it took about 5 hours to wait, get scanned and get the results back.

Now according to my trial schedule, my next CT wouldn't have been done until the first day of my Ipi infusion began. So not only were the doctors concerned about the blood clot, but they would get a sneak peek at how the drugs were acting on my tumors. So when we got the results back we were a little shocked.

As it would turn out, there was no blood clot in either of my lungs. However, there was a change in my tumors. All three had gotten... smaller! They were able to note the 3 tumors had actually decreased in size! This was great news on a very long and weary day. The change wasn't considerable, but to see the effects working after two weeks is good news indeed. We'll see where we are at again in a little more than a month.