October 2, 2013 in Lymphoma by Reta Reed

As Jeff says – “I tell yew whut”. This has been quite an initiation into the MD Anderson fraternity. It’s almost like we’re being hazed or someone is pulling some cruel pranks on us. We were prepared for Jeff to get his first chemo last Thursday. We drove all the way down there, visited with Dr. Hagemeister who, by the way, is quickly growing on me – he even gave Jeff a hug. Got blood work done, had yet another EKG because apparently the EKG must be done within seven days of starting chemo and the one last week had “expired”. We were sitting in the infusion area to get an IV line started when we got a call from the research nurse. She said that since Jeff had taken a Protonix the night before, he would have to wait four days to start chemo. Why the hell weren’t we told he couldn’t have Protonix? While the nurse didn’t know Jeff was taking the Protonix, his history of reflux and ulcers is in his chart. It would also be nice if they would just double-check that kind of stuff. A printed list of things you can and cannot do would be good.

So, essentially a wasted trip. He did get the EKG and a pre-procedure interview to go ahead and have the port-a-cath replaced on Monday, but it was still such a let-down to have yet another delay. I’m sure we’ll look back on this and think “Wow, things moved so fast” but it sure doesn’t seem fast at the moment.

Our trip to Houston Monday was productive. Yet more blood work, visit with a lymphoma clinic nurse practitioner, removal of the port and placement of the central venous catheter, chest x-ray, training on taking care of the CVC, and, FINALLY, chemo. He takes pills orally days one through seven and gets chemo infusion on days one and eight. The infusion takes four hours so we didn’t leave Houston until 10:30. We got home at about 3:15 yesterday morning. We’re still pretty tired.

Today is only Wednesday and the treatment already hit Jeff pretty hard yesterday. He feels fluish, nauseated, doesn’t have much appetite. We were told that since part of this treatment is made up of biologic drugs he the side effects may be less severe. So far, we’re not seeing it. Maybe the side effects will be shorter in duration. They also said his hair may grow back. Since he has been off chemo for more than a month, he already has a peach-fuzz beard and mustache. Pretty cute 🙂

We go back next Monday for the second infusion and blood work, blood and/or platelet infusion if necessary, and we’ll stay overnight as he has another biopsy on Tuesday to check initial response.

What is biological therapy?

Romidepsin is the infusion drug: