6-11-13

It has been five days since I received my first SCH727965 iv dose, and I am just now eating normal food and being able to think straight (although things are still foggy, so please forgive me if this post isn’t a smooth read). The nurses were not kidding or exaggerating when they said that I would be sick from the SCH drug!


This past Thursday's appointment began at 7am with the nurses trying to find a vein that they could place an iv in; because the infusion would be administered through the port and they needed a peripheral iv to draw the 20 vials of blood from. After many attempts and even more bruises, the peripheral iv was placed (it lasted almost the whole day!). Labs were taken, hunks of skin were taken, and lots of fluids and pre-meds were given – not a very fair quid pro quo as far as I’m concerned. Approximately an hour into the SCH infusion (which runs over two hours), I began feeling dizzy, nauseous, and we’ll just say etc., because it’s a long list of side effects that escalated quickly. It’s a good thing that John and I were staying at the Longwood Inn that night; as it was John had to push me in a wheelchair (because I was unstable) from DFCI one block to the hotel, which I couldn’t even make without throwing up. I continued to take medications to help prevent and stop all of the side effects; we also spent Friday and Saturday at DFCI where they gave me fluids and more meds. The SCH dose also threw off several of my blood counts. A normal SGOT should be between 9 and 30, mine was 365 on Friday and 96 on Saturday. A normal SGPT should be between 7 and 52, mine was 228 on Friday and 131 on Saturday (SGOT AND SGPT are both liver function tests). A normal LDH should be between 107 and 231, mine was 1512 on Friday and 1181 on Saturday…. These are just examples of how intense this dose affected me. Even after five days my glands are still swollen, my entire body hurts and I find it hard to focus or retain information.

I would like to decrease the potency of the SCH drug that I am receiving; however, I am not sure that this is a possibility. Dr. G says that they will give me more pre-medications next iv dose and that should help; but I have to say, if the second iv dose causes me to be just as “sick” as this time, this might not be the clinical trial for me.

The oral ABT dose was held Thursday night, both doses on Friday, and Saturday morning due to the effects of the SCH dose. I have since continued with the oral dose. We go back into DFCI tomorrow for more blood work, and the oral dose. After the DFCI appointment we have to go to BI for blood work to “close out” the clinical trial that I ended just over a month ago (I think the people running these trials are a secret cult of vampires! - this is a joke).

I have to say that even with all of the warnings I didn’t think I’d be that sick; but I can only assume that the SCH drug packed a powerful punch and hopefully did some good while it was tormenting my entire insides.