Preliminary Evaluation at the Mayo Clinic

I got a call from the Mayo Clinic a few days after my last appt. with my oncologist.  They scheduled a preliminary evaluation for July 26th  with Dr. Brian Costello.  He is the primary oncologist overseeing the clinical study.

The Mayo Clinic Main Entrance

Janet and I had used the online Mapquest to determine the quickest route to Rochester, Minnesota. Even so, we left about an hour or so early just in case we ran into difficulties getting there or other unforeseen problems.  I am so glad we did because the way we took ended up taking us over 3 hours to get there.  Not only did it take that long but the road we traveled, once passing over the Mississippi River and through Wabasha, was unbelieveable.  It was up and down steep hills, with narrow winding roads.  Janet was in Heaven at first.  She kept comparing it to roads she had traveled in North Carolina, but when I started having nausea and car sickness, her favorable comments stopped! ;)

We arrived in time for my appointment.  Though nervous, it helped to be caught up in the impressive architecture, decor/art, and the size of Mayo.  I had to go through several checkin's before actually meeting with the oncologist.

Me, at The Mayo Clinic

Rochester, Minnesota

Before meeting Dr. Costello, we met with his associate, Dr. Mithun V. Shah.  He was very personable, polite, and spent a lot of time asking questions about my initial symptoms continuing all the way through my surgery.  He discussed the medical records he had rceived from my surgery but informed me that he had not gotten all of the records associated with my chemo treatments, nor all of the pathology reports. (This really upset me considering all the time I had spent on the phone making sure that all my records had been requested and received!)  He continued by giving me a physical exam and then left the room to get Dr. Costello.

Dr. Brian Costello

Dr. Costello was very formal when first entering the exam room, and gave us information concerning the clinical trial.  The trial is only for those patients having other than clear cell carcinoma.  He said if I was accepted, I would be recieving Pazopanib, a pill form of chemo.  It has been used on other cancers, having positive results in slowing down the growth of the cancer and in some cases, stopping the growth all together.  He made it clear that it has never been used in a study for the Metastatic Sarcomatoid Renal Cell Carcinoma, so they do not know what effect, if any, it will have on me.  He asked many questions pertaining to my overall physical and emotional well being.

After all the formal questions and answers, Dr. Costello became very personable sharing that he too was from Wisconsin.  We talked about Wisconsinite topics and I began feeling more relaxed with him.

As our appointment ended, he explained that he would have to wait for the rest of my medical reports to come in before he knew if I could be considered for the trial.  If I did, he would have me come back for 2 days of imaging and serum studies.  The results of those tests would determine if I would be included into the trial.

It was a LONG day and we left feeling weary. Once again I will have to wait to find out if, when, and what the next step would be.

Looking For The Next Step

After my release from St. Joseph's, I spent about 2 weeks recovering from surgery at home before my first follow-up appointment.  It was with my oncologist, Dr. Delmastro, here in Eau Claire.  I had not seen him since before my surgery, and I was anxious to find out what the next step might be.

It felt so good to see his expression when he came into the room.  He had a huge smile on his face, clenched his fist in the air and exclaimed, "You made it!!"   I loved his enthusiasm and it made me feel like I had done something miraculous!  He kept saying how good I looked.

After the initial moments of "atta girl" we got down to business.  He went through all the findings from the surgery and explained that the cancer remaining showed primary cells of the Sarcomatoid variant. (The most aggressive of Renal Cell Carcinoma)  Since this type of cancer has little response to chemo, or even radiation, he felt like my best hope would be to enter into a clinical trial.

He actually began searching on his lap top for a possible trial as we sat in the examination room.  At first, he could not see anything within driving distance, so he began looking in the Baltimore, Maryland region.  He knew that Janet was from that region and we had both lived there for several years.  There was nothing that dealt with my type of RCC.  As he searched, many trials were over seas: China, Germany, France.  He finally ran across a trial that had just opened up at the Mayo Clinic, in Rochester, Minnesota.  BINGO! (2 1/2 hours away)

He said he would first have to contact the head oncologist overseeing the trial to see if I would possibly qualify and I would also have to be 100% healed from the surgery.

Janet and I left the appointment with great hope.  Dr. Delmastro said he would either call me, or have the oncologist from Mayo call within a week.

In the meantime, we traveled back to Marshfield on July 17th for a followup appointment with my surgeon, Dr. Wernberg.  Her expression was similar to Dr. Delmastro's. She went out of her way to congratulate me on my speedy recovery.

It's funny, everyone was making such a deal about my recovery, yet I felt like it was taking forever!  I had no energy, little appetite, and everything seemed like a big deal to accomplish.  Even though Janet had kept telling me how great I was doing, I didn't feel like it.

It finally sunk in when Dr. Wernberg said, "Cindy, what you went through in that surgery was massive.
It's only been a little over 4 weeks.  Believe me when I say, you are recovering in lightning speed!"

I told her about the trial Dr. Delmastro was looking into and her response was positive.  She felt like within 2 weeks, I would be 100% capable of entering a trial.

It was shocking when she actually released me from her care that day.  I thought I would have at least a couple more visits with her to make sure I was completely healed.  I understood they were looking into further treatment for the existing cancer and I could not continue any treatment until I was released from her care.  I guess I was having a hard time accepting the fact that I needed to move onto the next step right away.