lovemymom
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Hi Tony. I hope you’re feeling better. What chemo are you on? Could that be related to your discomfort? My mom is having pretty severe gas pains with 3000 mg Xeloda. Only started during her 3rd cycle. Don’t know if it’s the drugs or, God forbid, the cancer. Best of luck. Kathleen
Thank you all for your kind and insightful thoughts. We did get the enthusiastic support of my mom’s oncologist. I am taking her records and scans (just in case and because I am NEUROTIC!!) and, of course, am praying a lot. We have tickets to see the Pope on Ash Wednesday. If anyone is reading this and if they pray, please say a little prayer for my mom (Josephine) that she may travel well and safely and enjoy her time in England and Rome. Again, thank you, thank you, thank you. Kathleen
Don’t know if this is any comfort, but we were basically told the same thing. First, there is little reason to continue chemo regimen once the tumor starts to grow and the CA19-9 rise. In my mom’s case, she had a very, very slight increase in size on CT scan and a rise in the CA19-9 and the doc thought there was no point in continuing the same treatment. Second, cisplatin and oxy work in the same way and the doc didn’t think switching from the cis to the oxy would help. Therefore, my mom is on Xeloda. He wasn’t very optimistic about it shrinking the tumors, but her CA19-9 has gone down after each three week cycle (2 wks on/1 off). We just pray it continues. Hope you get some good news from the scan. Good Luck and God Bless.
Thank you all for your kind words and thoughtful responses. I am trying to get a second opinion. I’ve gathered the records and, if I get anyone willing to explore my mom’s case further, will at least give her the option. Again, thank you all very much. Kathleen
Hi Suzanne. Thank YOU for the encouragement. IAnd yes, you were very helpful. It is nice to hear you are at a place that encourages you and fights right along side you. I hate to even think of moving my mom to a foreign place away from many of the people she loves, particularly when her prognosis is so grave. Can you tell me what regimen you were on immediately after Gemzar/Cis? Was that the spheres? Our doc said no way to that. In fact, he said no to everything. If the spheres came after the Gem/cis, what was the next chemo regimen you used — Folfox? Sorry to be so dense. Hope you are feeling well, by the way. Best, Kathleen
Hi snowlady. I’m in Buffalo so you might call me blizzardlady…My mom has stage iv biliary cancer. Doc hasn’t been able to say whether bile duct or gallbladder, but it’s definitely in the gallbladder and portacaval area. She is now on xeloda after gem/cisplatin worked a bit, then failed. She’s had her first 14 day round and feels better than she has since month before initial diagnosis (august 2009). She had one bout of diarhea, which was after she took curcumin so can’t say whether it was xeloda, curcumin or both. She had numbness in 2 fingers for 1 day. Her energy level is up. She had far more fatigue with infusions. We start second round on Monday, so I will let you know how it goes. I hope your dad is starting to feel better. Can you (or anyone else) tell me how you feel or what you know about using xeloda alone or as second line treatment? Thanks so much and good luck and God bless. k
Hi Suzanne and congratulations on your strength and perseverance. I don’t know if this is any help, but my BIL has stage iv pancreatic cancer and he stops and starts chemo (Gemzar/capecitabine) when his body needs a break and his ca19-9 levels remain stable (below 100). This has worked for him physically and mentally. From what I can tell from your previous posts, you’ve been battling this dreaded disease for some time now, so you deserve, at the very least, kudos for your strength, endurance, strong will and continuing willingness to reach out and help others. I don’t know if you can give me any direction, but thought it was worth a shot…my mom was diagnosed with stage iv biliary cancer in Sept. Her doc hasn’t been able to say whether its bile duct or gallbladder ca. She had gemzar/cisplatin, which worked initially. Tumors shrunk, ca19-9 dropped from 1600 to 400. Now that it stopped (some tumors increased in size, some stayed stable, ca19-9 went to 900), doctor said that all is left is Capecitabine (xeloda). He referred her to hospice. This may be just me refusing to accept this, but I’ve read about lots of people persevering in the face of terrible news, and I am frustrated that the off-label use of numerous other regimens (i.e., folfox, gtx, adding avastin or tarceva) has been completely cut-off from her. My mom’s ca19-9 has not surpassed base-line and, in fact, is 600 points lower. The supraclavicular tumors and the gallbladder mass are stable. Can you (or anyone for that matter) offer any advise on second opinions or similar experiences. The funny thing is, my mom feels soooo much better than she has since initial diagnosis. Her energy is way up and pain level is way down. Her use of pain medications is far less than it was. Even her doc says the tumor in her clavicle area seems to have shrunk. I will give up the fight if I must, but my gut tells me that it’s not okay for the doc to put my mom in the loss column while she’s still living and willing to fight. Any thoughts? Any idea on where I can turn?
Thank you all so much! I have been so lost these past four weeks; finding this board and your incredibly kind encouragement quite literally made me cry. To answer some of your questions, my mom is 73. She has significant lymph node involvement, which is why the docs precluded resection and radiation. She was initially diagnosed with squamus anal cell cancer following a colonoscopy. CT and PET scans revealed extensive metastasis into the lymph nodes; the docs didn’t think a small squamus cell carcinoma (smaller than a pea) could be responsible for such extensive lymph node involvement. A biopsy of a lymph node in the neck lead them to conclude it was gallbladder cancer. My mom had significant abdominal pain prior to chemo and was put on a 72 hr patch, which has helped significantly. She is trying to stay active and is eating very well. No weight loss, or nausea; she restarted regular bowel movements (thanks to lactolose syrup and a stool softener rx by doc). She takes increased amounts of vit. d and curcumin. I also got her avemar, but have not yet cleared it with the doc. My BIL was dx with stage iv pancreatic cancer in Nov.’08, and I learned about curcumin and avemar from him. We will talk to the doc about milk thistle tomorrow. Treatment is at Roswell Park Cancer Institute in Buffalo, NY. Thanks again for your support. God Bless you and yours! Kathleen
