Hello, I would like you to know that you are not alone in this tough battle. those of us on Cancer Compass are here to comfort and support you both. This cancer is very tough, and I don't feel we get too much help from the doctors. Quite frankly i've learned more about the Klatskin tumor through this web site. My husband, Brian just celebrated his one year anniversary from surgery. He was stage 1A. It has been a tough year..... Minor things like sinus infections, to major problems of bleeding ulcers, which brought us to the hospital 3 seperate timesl the ulcer nearly killed him as it took a long time to diagnose, despite the fact he was presenting classic symptoms. The first two times the doctors were very concerned that the artery feeding the ulcer was the only one feeding his liver and they were reluctant to fool with it. Finally the last time he went into the hospital with a bleeding ulcer, the doctors decided that IR could coil the artery that was feeding the ulcer. Brian was in the hospital for about twenty days and was released in June. Since he was released, my husband rested, ate as well as he could, and built up the determination to get physically stronger. He started by swimming, with only half a lap (didn't even make one way up the pool!) as his first effort. He's been able to bring this to thirty laps and now the weather has gotten a bit colder. So, he's beginning to work out and has been going to PT; laying around in bed at the hospital and recovering from both the surgery and the ulcer battles caused his muscles to decondition quite a bit. His platelete counts reached a low point of 40 and the doctors put him on Ursodiol to improve the flow of bile from his liver. During his bouts with the ulcer he received many transfusions of blood, plateletes and plasma. He had serious reactions to plateletes and plasma (which we were finally told was not uncommone) and taking Benedril before the transfusion helped immensely. He did have to speak up a few times to remind the doctor/nurse to give him the Benedril, or he'd break out (one time it was so bad his eye shut and it was quite nerveracking for us all). Since the ulcer his platelet count is around 50 to 55, which is much lower than when he went thru chemo. The doctors do not know why this is, though his spleen became enlarged (very likely from the radiation) and he has a narrowed portal vein (leading from the spleen to the liver). We're told the portal vein will likely resolve itself and allow the spleen to reduce in size. One theory is the enlarged spleen is trapping his platelets, so we're hoping as time goes on his spleen will reduce in size and the platelet count will go up. He is on Ursodiol for his bile flow and that is helping to keep his AST's and ALT's somewhat normal. One has to be one's own advacate. The doctor had told Brian he didn't need to stay on the Ursodiol, so Brian went off of it, and within 2 weeks his AST's and ALT's skyrockedted, so did his alkaline phosphotates. When we went back to the oncologist she said, lets wait a month and redo the blood work and see what happens. I said no, let's not do that, lets repeat blood work in 2 weeks, and I asked "can't he go back on the Ursodiol???" (since it has no down side) she said sure... WHAT... who is the dr. here?? Listen to your inner voice and have faith, this is what will guide you.
Take care,
With a smile and a prayer,
Cindy O.
On 9/19/2009
Solutions wrote:
On 9/19/2009 nanlou wrote:
Leonard, Thank you for your encourageing words. Just knowing we are not alone in this fight helps. My husband is off chemo at the moment as his platelets fell to 64 two weeks ago. We go back to Dr, this week and hope to start again. All the Drs. we have seen feel this is our only hope in slowing the cancer. Nanlou
Hello Nanlou,
Thank you...Sorry to hear about chemo rescheduling due to the WBC count dropping. Maybe you should suggest to his doctor to have your husband take an RBC injection at the time of the chemo session and a WBC control injection each day for 5 days after his chemo session. This is what my wife does. He original chemo session was planned for 2 weeks chemo and on one week off. This proved to be too much, so her Oncologist rescheduled the chemo session to every other week. She does blood work the day before the chemo. the day of the chemo she gets an injection to keep her RBC count up. And each day for 5 days she gets an injection to keep her WBC count up. And after that 5th day she does another blood work to see if the RBC and WBC count is being maintained. Karen is finished with her Chemo sessions. On the 25th on this month she does a PET/CT scan. This will tell us if the 6 session of Chemo handled the tumor.
Hope all the best for your husband. Take Care,
Leonard