So much has happened…(part 2)

October 27, 2013 in Lymphoma by Reta Reed

Heading to Houston on the 21st, Jeff again was getting backed up, having not pooped since the previous Thursday, so the ride was very uncomfortable. Even with pain medication, he struggled to get comfortable in the car and groaned with every bump.

We made it and met his mom and dad there to give them the “tour”. Jeff was still in so much pain. He had already had an EKG and blood work and Dr. Hagemeister’s nurse said he would probably be admitted because he was not doing well. We waited until 1:00 to see Dr. Hagemeister who read the report of the CT scan from last week and said the tumor may have grown yet again, even being on the clinical trial drugs. They would submit the CD we brought so that the scan could be compared to more recent scans done at MDA. Dr. Hagemeister examined Jeff and lay him back on the exam table. That caused so much pain it put Jeff in tears! So he was admitted to get his pain under control and to get his bowels moving. He also needed more blood as his hemoglobin had dropped from Friday.

It took several measures to get his bowels to move, but that provided quite a bit of relief and he was finally able to eat and keep food down. Dr. Hagemeister had his radiologist friend compare the scan from last week to one of MDA’s scans and she saw the tumor has grown. This alone excludes Jeff from the clinical trial. So what now? A new chemo recipe. Good news is that the new recipe consists of standard drugs which can be administered in Fort Worth so we don’t have to make trips to Houston. So we would transfer care back to our local oncologist. And Baylor in Dallas can handle the stem cell transplant. We still have the option of getting the transplant in Houston, though.

Jeff had to stay for three units of blood to get his hemoglobin over 9.0, since MDA won’t discharge below 9. We left at 4 a.m. Thursday morning with his hemoglobin at 10.0. THAT was a long drive home! My poor, wonderful mother had been taking care of the kids all week and I had to ask her again to get the kids to school Thursday because we just wouldn’t make it home in time. Bless her heart. We don’t know what we’d do without her!

We again chatted with our favorite oncologist, Dr. Oommen, and he got Jeff admitted Friday morning to start chemo. He again needed some pain control. We figure the pain and blood loss is likely coming from the tumor. They got the new recipe, rituximab, ifosfamide and etoposide, started Friday at 3 pm. They also did an abdominal ultrasound yesterday to check out Jeff’s feeling of fluid in his belly. The report showed bowel gas and not much else as the gas and tumors obscured other organs. His blood work is already looking better – the chemo seems to be working!

Since Jeff had progression on the clinical trial after one cycle, the plan is to scan Jeff after EACH cycle to monitor progress. Jeff’s brother was not a match for stem cell transplant, so they are looking for an unrelated donor. As soon as Jeff’s scan shows good response, he’ll go straight to transplant, assuming a donor has been found. I have to get records from the stem cell transplant team at MDA sent to Dr. Agura at Baylor ASAP!

You may not be a match for Jeff, but please register and get tested to see if you can help SOMEONE!! Get answers to your questions at