October 6, 2010 at 4:03 pm #40833lainyParticipant
Sallypa wishing your Sister the best of luck!! I love April…my Birthday and Spring…new beginnings!October 6, 2010 at 3:35 pm #40832
after some problems at the hospital last week in which nothing got done because of scheduling errors. monday my sister started chemo. no problems so far except for being tired. we just keep our eyes on april 2011 when the chemo, radiation will be done and hopefully the cancer will be gone forever.September 24, 2010 at 6:56 am #40831marionsModerator
sallypa….there is some satisfaction in knowing to have tapped all the resources. Good luck with the upcoming treatment. Your sister may just have an easier time than anticipated.
That is what I wish for,
MarionSeptember 24, 2010 at 4:29 am #40830
havent been writing lately as we hoped to find a second opinion that wouldnt call for six months of chemo and radiation. unfortunately there was no better news. my sister will begin the chemo on monday. hopefully the side effects will be minimal and God willing at the end of the six months she will be cured.September 12, 2010 at 2:44 am #40829
thank you tom for your support. i pray that your chemo treatment will continue to shrink your tumor so that maybe surgery could be performed. we are going to seek some other opininons about the post surgery chemo-radiation. we know that she is going to have to do some chemo/radiation. we were just hoping it would be shorter than a six month process. but if thats what it has to be than we will go ahead with it.September 10, 2010 at 6:48 am #40828
Sallypa, your sisterSeptember 9, 2010 at 4:40 am #40827kentuckyjackMember
Having now been through chemotherapy and radiation because my big tumor is unresectable, I envy the problem your sister has now. Thank God she was able to have the surgery. I don’t have any guidance to offer on the specific protocol your sister has planned for her, but if it is through a facility that has a lot of experience in dealing with bile duct cancers, that would reassure me. I will say that the Gemzar/Oxaliplatin/Xeloda combination shrank my big tumor by 1/3 to 1/2, so one or more of those drugs in combination worked for me. The jury’s still out on the success or failure of the radiation for me yet. Had I been lucky enough to qualify for surgery, I would have asked for adjuvant chemo/radiation, and Praise God she’s getting a shot at it!
Sounds like you sister has a wonderful advocate in you.
God bless you both.
-TomSeptember 9, 2010 at 1:07 am #40826
we had 3 appointments today with surgeon, radiologist and oncologist. the good news was the dr said the entire tumor was removed and the lymph nodes he removed all tested negative. he also said there was no other visible signs of spread. the bad news was he said while he wanted to get a 2 cm margin he was only able to get a 2mm margin meaning my sister will need chemo/radiation. the schedule seems grueling. one cycle (3 weeks on 1 off) of gemzar followed by 5 weeks of daily radiation followed by three more cycles of gemzar. i am hoping some of you may have some advise or knowledge of this schedule that you could share. the drs say this will all take about six months to complete. the kept saying the good news is that her resection surgery was successful and they believe with the chemo/radiation she has chance at being cured. the problem i have is there is no test to see if the cancer is there right now. she could be going thru all of this for nothing plus there is no guarantee if she does it that she will be cured. drs also had no explanation for the pain she is feeling in her shoulder as well as her arms and hands except to say they dont think it has anything to do with the cancer.September 4, 2010 at 5:53 am #40825
dale, thank you for the link toyour blog. it helped me develop some questions for my sisters appointments on wednesday. i am just so glad to see that you are doing well.September 3, 2010 at 10:08 pm #40824
sallypa, thank you and I hope the best for your sister next week when they discuss chemo & radiation. I agree with Linda, the first part in fighting this cancer is surgery, which your sister had.
Also, I had forgotten (but Linda’s post reminded me), about a month out of my surgery, I had a fluid buildup inside my abdomen area, near the surgery site. It was called “seroma”. At the time, they told me this was not unusual to occur. They placed a drainage bag near there, and in about 1-2 weeks the fluid all drained out.
Also, I have a blog which chronicles my entire cancer story. Beginning with surgery, and then all my checkups. In case you wanted to see it, it has more detailed info on my recovery and all.
Here’s link: http://dalescancerblog.blogspot.com/
Please keep us posted on your sister. God bless.
DaleSeptember 3, 2010 at 8:06 pm #40823
thank you linda for your help. i am so appreciative to everyone for the help and encouragement. we are going to see the surgeon, radiologist and oncologist on wednesday and i am trying to study as much as i can to ask the right questions. if you or anyone else could assist me it would be helpful. i am not really sure what to ask them other than is chemo and radiation really necessary right now or can we wait and see if anything comes back. thank you again and i hope you find a treatment that will work for you. take care.September 3, 2010 at 7:57 pm #40822linda-zParticipant
Just getting caught up on postings here. Sorry it took so long to reply.
When I had my surgery, I spent 5 days in the hospital and actually did very well with recovery. I have about a 12″ scar across my abdomen which is no where as noticable as it was. Just a little pink. I developed an abscess about a week after surgery and had a drain put in for a week, but handled that well too. I lost about 30 pounds overall due to not being able to eat the “bigger” meals that I was accustomed to. AND I actually needed to lose weight too. However, I gained it back when I began chemo.
More than a year later, I do feel like there isn’t anything wrong with me, although the chemotherapy did not work. I know that’s not the same for everyone, so don’t feel nervous about that. Chemo may work for your sister even though it didn’t for me. Looking back, my surgeons made errors in judgement that probably caused my cancer to return. The best chance though is that your sister had surgery to begin with. That is at least the first fight to getting this cancer.
The chemos that I was on was first Gemcitabine with Cisplatin; then Oxaliplatin with Xeloda, and finally a clinical trial of Irinotecan. I tolerated all of these very, very well compared to what I’ve heard others say about them. Whether that means my age was a factor, or probably why they weren’t working, I don’t know. I’m in the process of finding another doctor to seek other treatment options. Don’t give up….don’t ever give up. There is always something new popping up out there.
I wish you both the best.
LindaSeptember 2, 2010 at 4:56 am #40821
dale, thank you so much for sharing. you give us hope that my sister can beat this disease. she goes to the surgeon, radiologist and oncologist on september 8 to see where we go from here. the drs exact words after surgery were a little radiation and chemo will be necessary. not sure what a little means and we really didnt question him at the time, we were just relieved that she had a successful surgery. i am trying to study so much before next week so i can ask the proper questions. thank you again for your help!September 1, 2010 at 11:20 pm #40820
sallypa, thank you. I hope and pray the best for your sister too. My surgery and recovery went pretty well. IAugust 31, 2010 at 4:43 am #40819
dale, thank you for writing. it is so good to hear from all of the people on this site and it feels great to hear when someone is getting the better of this cancer.i hope you dont mind but i would really like to know how your recovery went. my sister will be happy to hear that the scar will fade over time. did you have to go thru chemo and radiation as well and if so were there any side effects? my sister is still waiting to hear what the chemo regimen will be and we still are worried about the 2cm mass they saw on her lung in the chest scan prior to surgery. it is too small for a biopsy so we have to wait and hope it doesnt ever get bigger and no more show up. we had hoped surgery would be the end of this but now chemo and radiation. this disease really beats up a person. finally today she was able to eat something without it coming back up. we will take another small victory. hopefully every day she will get stronger and stronger. congratulations on your six year success story i pray it will be many many more.
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