Where we stand

We did not receive the news we wanted at Joe’s CT scan on Friday. There was no change to the metastatic tumor in his lungs. Both the U of M and Cleveland Clinic doctors want to have him checked again in 6 weeks on the chance that he has a late response to the treatment.

Thank you all for your prayers and support.

Many more people are following Joe’s story now. Here is a recap.

3/20/11 Joe decides the night before to run the Churchill’s Half-Marathon instead of the 5K. He develops of cold that leads to more and he is prescribed antibiotics (something I’m not sure he really needed).

3/30/11 Joe tries first ReadyCare for constipation from the antibiotics then Wood County Hospital (WCH). The staff ordered a CT scan looking for bowel obstruction or appendicitis (from what we know now his complaints and symptoms were not at all related to his appendix and therefore there was no need for a CT scan). He was told there was something on his kidney, when I got there they were admitting him for the night. After meeting with the doctors at WCH they were almost sure it was cancerous and said the Cleveland Clinic (CC) is where he needed to be. They worked on contacting the doctors at CC and, for a while, were planning on a transport to the Cleveland Clinic. We got the info on the surgeon at CC and made an appointment for a meeting with him. They determined there was no reason for him to continue his hospital stay. Discharged 4/1/11.

4/5/11 Met with Dr. K. at the Cleveland Clinic. Surgery scheduled for 4/11/11. CC opted to do their own pre op scans. Results showed some spots in his lungs, but we were unsure of what they were.

4/11/11 Removed right kidney, adrenal, and 10 lymph nodes. Adrenal and lymph nodes were clear. Discharged 4/16/11.

4/19/11 Pathology report confirmed renal cell carcinoma. Tumor was 7.5 cm, Fuhrman nuclear grade 4, stage 3 at surgery (stage 4 at spread year later)

4/26/11 Staples removed at WCH.

4/28/11 Pain in groin begins; thought it was a muscle pull or hernia.

5/1/11 Woke at 2am with left leg swelling. Went to WCH ER. Blood clot (Deep Vein Thrombosis (DVT)) suspected and Heparin started.  6:45am transfer to Cleveland Clinic with Dad B in ambulance with him. It was the day of Ellie’s First Communion. We kept the family gathering planned to celebrate Ellie. When Joe arrived at the Cleveland Clinic. Coumadin started.

5/8/11 Discharged.

6/6/11 Got the call that Joe was accepted into a trial at the Cleveland Clinic for a drug called Pazopanib. It is already used for metastatic tumors, but the trial is to see if patients are given it before metastatic tumors form if it will keep the tumors from growing.

6/15/11 Trial drug started Pazopanib 800mg.

8/26/11 Stopped Pazopanib because Creatintine (kidney function indicator) was 1.9. The high end of normal is 1.3.

9/1/11 Started back on Pazopanib at 600mg.

9/12/11 Taken off Pazopanib again because Creatintine was 2.1, blood work scheduled for 9/19/11.

9/19/11 Ultrasound in Toledo to check DVT. Local staff doing the ultrasound may have overreacted when they saw there was still a clot.  Not knowing how bad it was to begin with, they did not know how much better it was. He went back to Cleveland Clinic for an overnight. It was decided that he would be moved to Lovenox subcutaneous injections because it would keep him at a more therapeutic level.

11/3/11 CT scans show he was “clean enough.” the spots  were still on his lungs; still not sure what they are. Dr. R said he is paid to be cautious so he is.

2/24/12 CT scans shows no change in areas of concern.

6/8/12 The Pazopanib year long trial ended. CT scans show the spots on his lungs have grown and now are called metastatic tumors*. Plans made to have Joe unblinded from the study so doctors know what the options are. Starting process of contacting doctor at University of Michigan for Interleukin-2.

*Important to note this is still renal cell carcinoma not lung cancer. The tumors are made of renal cells that have spread to the lungs.

6/12/12 Shocked to learn Joe was on the placebo. Contact made with doctors at University of Michigan for next treatment. Cleveland Clinic staff gets info to UM staff including part of the original tumor that was removed in April for their staff to confirm original diagnoses.

7/5/12 Meeting with Dr. R on IL-2, blood work, doppler on leg, still some blockage in upper thigh.

7/10/12 UM CT scans.

7/17/12 All systems go meeting for IL2.

7/30/12-8/4/12 Joe at UM for IL treatment. 8 doses administered. Very low blood pressure and dopamine used. Day after retuning home spoke with doctor about water weight and wet cough. Diuretic prescribed.

8/9/12 Blood work and physical check at UM. Creatintine levels bounce back.

8/13/12-8/18/12 Joe at UM for IL treatment. 7 doses administered. Very low blood pressure and dopamine used. Prescription for diuretic.

8/31/12 Blood work and physical check at UM. Creatintine levels bounce back. Still some water retention.

9/14/12 CT scans show no chance in the metastatic tumors. Recheck in 6 weeks for possible late response.