On 2/28/2008 babeelover wrote:
My mother in law was given a year after her whipple in April of 2007. She has had sporadic treatment of gemzar/Tarceva since late August. She decided she wanted to take a break from treatment so they agreed and had 6 weeks off. Her Ca-125 had been around 34 but after the break it doubled. the oncologist scared her into getting back on the treatment or she would be dead in 4 weeks. So is the marker that informative of cancer activity? She felt so much better off the gemzar, she never stopped the Tarceva which Dr told us does nothing without Gemzar. So now its back to weight loss, fatigue, chemo brain, not wanting to eat much. I just think she should feel as good as she can for what time she has left which Dr says could be years, which I doubt since it is metastic. He said feeling bad is better than being dead. I had a long talk with him with my mother in law present and he ignored her when she told him she needed to think more about it. So after the marker test doubled the nurse called and convinced her to come in Wed(yesterday) and resume chemo infusion. I get the impression that Doctors are so excited when they get a patient that shows any response to the regimen they lose sight of the patient and what they are going through and want them to continue so they have some trophy patient to hold up and say it works. Out of 100's of patients she is the only pancreatic patient to show response which makes me think this. Anyone ??
If the TM is going back up, it is best to go on with treatment. With my husband after a while the gemzar quit working,theTM started going back up --slowly tho. The dr let him take a short break then go on 5-FU which he took until the TM came back down and at the last CA19-9 was at 8 so they took the PICC line out. He has to go back the 19 for blood work and will probably monthly for a whilt to make sure the cancer is inactive. His cat scan (lymph glands in the abdomen where the cancer had metastesized to before diagnosis))showed nothing also.
The fatigue is almost unbearable, a couple times he almost quit. I'm so glad he didn't. He started out with treatments once aweek 2 weeks in a row, then skip a week. When the fatigue got so horrific the dr changed to every other week.,then it quit working. Withthe 5-FU it was 13 weeks streight. no break.
I am so glad he continued with treatment. He is too, but it is hard and he still has some fatigue and the chemo brain hasn't gone away yet.
Hang in there, it is rough for the caregiver too. If I can suggest anyone reading this post to get connected with PANCAN. We have gained so much support from them and were put in touch with survivors with similar testimonies(by the way a survivor is anyone alive who has been diagnosed with cancer!) www.pancan.org
hiswayc