Thursday, July 12, 2012

A Mostly Stable Disease

Mom, Pat, and I had an uneventful trip to Houston on Tuesday afternoon. Mom's PET Scan was yesterday at noon with a blood draw at 10 a.m. After the blood draw, we walked down to the Radiation Department so Mom could see Danna and Travis. They seemed pretty happy to see Mom, and I know Mom was equally (if not more) happy to see them. Also- we have changed the blog so you can leave comments under the 'Anonymous' tag  :)  Just leave your name so Mom knows who you are.

During her PET Scan, the radiologists allowed Mom to put her hands at her sides (instead of above her head), since she is having such severe shoulder/arm/back pain. After the PET, we rested for a bit, and then Mike Sullivan picked us up for dinner at a tapas bar and restaurant near Rice Village. It was fabulous, and we had loads of good food and conversation.

Mom's appointment with Dr. Javle was at 8:30 this morning. Her cancer is mostly stable. The size of the tumor is the same as when she got her last scan in March. The SUV of the tumor is the same. There is no metastasis. There is a new nodule that's lighting up in the lower right portion of her liver, but Dr. Javle does not seem concerned about it. The nodules in her lung that were previously thought to be potentially cancerous are gone. The lymph nodes near her liver may still be cancerous, but Dr. Javle doesn't seem concerned about them. 


Mom will start on a new chemo regimen in two weeks. She will get irinotecan once every other week. In a perfect world, irinotecan is part of the Folfiri regimen, which also includes a 5-FU chemo pump. However, Mom's at such a high risk of complications due to her hyper-coagulable blood, that Dr. Goswami doesn't think she should get a pump, PICC line, or anything similar unless it's absolutely necessary. Cancer doesn't matter much if Mom gets a blood clot that moves and kills her instantly, so she will do without the other type of chemo.

Dr. Javle recommends that Mom start physical therapy to help with her shoulder pain. She will consult a pain specialist if the pain doesn't subside. He also wants Mom to start exercising more, as patients who exercise regularly have tumors with improved response to chemotherapy. She will also have more energy if she starts exercising more often.

Mom's been really worried about her platelets, but Dr. Javle doesn't think they're an issue. Her hemoglobin is great, and as long as her platelets don't drop below 75,000 she will be able to receive chemo. If her platelet count drops to near 50,000 then she will likely receive a platelet transfusion. 

Because her platelets are only 88,000 right now, Mom will receive 60% of the normal dose of Irinotecan. If she tolerates it well and her platelets don't drop, then a higher dose will be attemped. A potentially serious symptom of the chemo is diarrhea, which can usually be controlled with medication. The other side effect commonly experienced by patients receiving irinotecan is immunosuppression. Please be diligent when you're in her presence. Cover your mouth when you sneeze or cough. Wash your hands. Resist going to visit her if you're ill or feeling under the weather. Doing your part to keep her healthy is very much appreciated (by her - and all of us :). 

Mom will return to MD Anderson for another PET Scan in two months. 

Though we all hope that the tumor will shrink, many people pray for a stable disease and do not get it. It's been 16 months since Mom's diagnosis. She's doing really well and has so much to be thankful for. In answer to Mom's standard question, "Do you think I'll be here one year from now?" Dr. Javle responded with a confident "Yes". 

Please pray that Mom will tolerate the chemo well, and that the tumor responds quickly. Please also pray for another cholangiocarcinoma patient, Lauren. She is 26 and needs all the prayers we've got.  

As always, thank you so much for your prayers and good thoughts/vibes. 

Written/Posted by Jenn.


  1. HOORAY!!! We have some celebrating to do!

  2. YES WE DO! Bring on the Outer Banks!

  3. Whoot, Whoot!!!!! Thanks for the update:) Mary Combs

  4. Been thinking about you and the "familia" all this week. Glad the news was positive.

    Much love, Joann, John & Lisa


  6. I am glad you are doing well, Patty. If that is my Lauren you are talking about, thank you so much. That was really sweet of you and Jenn. Many hugs and prayers being sent your way.

    Love, -Pam Kunklier

    1. Yes, Pam. That's your Lauren we're referring to. Thinking about and praying for you guys!

  7. What great news nw u can celebrate on vacation so happy for u all!!!! Love the Baker Family

  8. HOLY COW!! So many comments!! I love it and I know mom appreciates seeing who has visited her blog and left comments! Keep them coming on the posts to come! :)

  9. Great news! Praying that this next round of chemo will get rid of all the cancerous cells. God bless you, Patty.
    Carol H

  10. Prayers and positive attitude are working. Keep up the good work Patty. Miss seeing your mom on Tues nights, tell her hi for me. God is good
    Kathy Miller

  11. Praying for you each and every day, Patty!.... I know God hears our prayers. So many wonderful people praying for you, our special angel!.... Keep up the good work, know that it's so difficult. You are so very brave and such a fighter!..... Megan says to let you know she is praying for you also. You were kind of like a second Mom to her in those young years. Just talking about all those good times the other day. .... we miss you, love you and continue to pray for you and your family. Hang in there girl!

    Keitha VanBlaricum