Unexpected News

We were called back to a room in the GI department at 9 this morning. Jackie (Dr. Javle's P.A.) came in 40 minutes later with news we haven't heard before: Mom's tumor is growing. It has increased FDG-avidness (it's brighter) indicating more metabolic activity in the tumor. There are also a few lymph nodes near her liver that have increased in size since October. There is a small spot in her lung that has increased in size and is now FDG-avid. Increase in size of the lymph nodes and brightness in the spot in her lung likely indicate cancer.

Dr. Javle thinks that Mom is no longer stable due to the two-month chemotherapy hiatus she had from September to November, and because her chemo regimen has included only Gemzar and Tarceva (no Xeloda (FU-5) or Cisplatin) since the first week of January. Gemzar and Cisplatin/FU-5 are thought to be the best combo of drugs for intrahepatic cholangiocarcinoma.  Mom had an allergic reaction to Cisplatin in August and an allergic reaction to Xeloda in January. Dr. Javle is recommending that Mom be desensitized to Cisplatin and/or FU-5 in order to resume that regimen. Desensitization would involve additional medications before administering IV Cisplatin/FU-5 and administering the chemo over about six hours (instead of one hour). These precautions would hopefully ensure that she doesn't have another reaction. Mom will stop taking Tarceva and all its related antibiotics now, since the tumor has grown, and it's obviously not working.

Depending on how comfortable Dr. Dy  at Crossroads Cancer Center in Effingham is with handing the desensitization and a potentially serious allergic reaction Mom may go to Barnes-Jewish Hospital in St. Louis to get chemo (one day, every other week). Dr. Javle seems very confident that resuming the Cisplatin/FU-5 will force Mom's tumor to become stable again and effectively treat the lymph nodes and nodule in her lung.

In addition, Mom will return to MD Anderson late next week for a biopsy of her tumor. The last biopsy she had was at Mayo Clinic just after she was dianosed. Dr. Javle would like to send the tissue to two labs to undergo genetic testing. The biopsy at Mayo was a thin-needle biopsy and was pretty painful. The biopsy occuring next week will involve a bigger needle in order to get more tissue. It's definitely not something Mom's looking forward to, but the testing will allow Dr. Javle to cater her treatment to her tumor and potentially enter new clinical trials.

Though not the news we were hoping for, Dr. Javle assured Mom that she is doing much better than she was when she first came to MD Anderson one year ago. She is still very healthy, and Dr. Javle thinks that is indicative of Mom's good prognosis. When Mom asked him if she would still be here in six months or a year, he replied, "You will definitely be here in one year. You're in good shape. I expect you to be here for a long time."

Please pray that Dr. Javle formulates a chemo regimen that keeps Mom's cancer under control. And pray for Mom. Hearing that the tumor has grown and that there are a few new spots is understandably very difficult for her. The next few weeks as she gets used to the new treatment plan and comes to grips with a 'new normal' may be even more difficult.

We have much to be thankful for, as the PET scan could have revealed much worse than was reported today. Thank you for your prayers and good thoughts/vibes. Please keep them coming.

Written/Posted by Jenn.