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I believe there are some treatment facility/dr. suggestions on this website:

www.duodenalcancer.com

A lot of people with duodenal cancer have the whipple surgery and this website has collected some references for treatment in different parts of the country.

I pray you find what you need.

Janet 

 

 

 

 

I had the same chemo that your husband is having.  I had stage IV duodenal cancer and they treat it with colon cancer chemo because that is all there is!  (It's a rare cancer.)  Anyway, the cold sensitivity got worse for me the longer I was on the chemo.  It was frustrating not to be able to drink a milk shake and even going outside in the cold wind bothered my hands.  But it went away fairly quickly when I finished the chemo.  I went every other week and had 8 rounds, so it was a total of four months.  I also got the neuropathy in my hands and feet, and that actually got a little worse when I had completed the chemo, but it too went away after a few months.  My worst side effect was having no appetite and everything tasting like shoe leather!  They checked my blood every week and I only had to have the shot to boost my white blood cells once and for the red blood cells once.  My hair thinned but never fell out completely.  They gave me lots of steroids when I got the chemo to combat the side effects.  I had one bad reaction during a chemo treatment when my blood pressure sky rocketed and my hands and feet got really red and itchy.  They gave me a shot of Benadryl and it went away fairly quickly and I resumed my treatment that same day.  My chemo was from August 2004 until Dec. 2004 and I have been cancer free ever since!!  So, don't give up hope and try to make the best of the situation.  I think it is so much harder for the caregiver - you feel so helpless.  Just let your husband eat whatever sounds good to him - don't worry about the nutrition right now.  Your body needs lots of calories to replace the cells that are destroyed by the chemo.  There is a good website (chemocare.com) that explains the side effects of the drugs.  Everyone reacts differently.  I wish your husband the best!

I just wanted to let you know that my CEA was checked when I was anemic and they couldn't figure out what was wrong with me. The test was inconclusive - my CEA was high, but not out of range. After 2 years they finally figured out I had duodenal cancer and after surgery and chemo, my CEA is now .7. My oncologist now uses the CEA test to make sure it isn't going up, as now she has a benchmark, so to speak. So, what I am trying to say is sometimes the CEA will not indicate cancer, even when it is present, as the "normal" range is different depending on the individual.

Belinda: That is wonderful news about your husband, and just in time for the holidays!! I also saw your message on the Yahoo site about the blood tests. That is very interesting! I have been going in every 3 months and having the liver function test, the CEA and several others (CBC panel, I think). Since this cancer usually spreads to the liver, sometimes the liver function test can spot it early. BUT, the blood tests are certainly not a guarantee that there is NO cancer in your body. I personally feel better having the tests. Especially since my cancer didn't show up on the CT scan at first. The other interesting thing is I have never had a PET scan; my dr. said there were no benchmarks for this type of cancer (or something to that effect). I guess it just goes to show how different each dr. is! I will continue to pray for Reini to remain cancer free!! I have a CT scan in Jan.; it will be my first one in a year. I will let you know the results. Happy Holidays to you and your family!! Janet

Dear Brenda: I had colon cancer chemo for my duodenal adenocarcinoma and they gave me Nuelasta AFTER my white blood cell count went down, to bring it back up. (They would test my white blood cell count before each chemo treatment.) It is not very painful at all, and it worked very well. I only had to have the one shot during 4 months of chemo. Good luck! Janet

Belinda: Sorry I am so slow to write back. I was waiting to see my dr. today to ask her about the CEA levels (tumor marker) that you had asked me about. My CEA at this checkup was .9 and my dr. said that when I was diagnosed, it was 2.4. But, there was a note on my lab report about the different "assay methods" used to measure the CEA. So, you may hear other people talk about much higher numbers, and that must mean that different assay methods were used. Also, the normal range indicated on the lab report is less than 2.5, so I was actually within the normal range when I was diagnosed. But my dr. thinks that since it is so low now, then a rise in the number could be a flag. Anyway, I am feeling well and all of my tests were good, so I have another 3 months before I have to go back! I did have a few days of nausea a few weeks ago and I was thinking it might be scar tissue in my intestine. I have not found anyone else who only had a resection; everyone I hear from has had the whipple, so their after surgery symptoms might be different. I hope that Reini is feeling well and enjoyed his retreat. I would like to read that book you talked about; it sounds interesting! I would also like to make others aware of the cancer center that someone mentioned in the Yahoo group. It's the Massey Cancer Center in Richmond, Virginia. They specialize in GI cancers and treat hundreds of duodenal cancers a year. It sounds like a good resource! Blessings to all, Janet

Lisa: I am so sorry to hear about your brother. Please don't give up! There is a website - usnews.com - where you can find a listing of cancer hospitals. There is one at the University of Alabama in Birmingham. I suggest you contact at least one, as they will know the latest treatments for this cancer. I was diagnosed last year at the age of 46. I had a resection and then chemo (5FU which is a colon cancer regimen) and I have been cancer free since then. Mine was stage 4, as it was in a lymph node in my neck; but that went away with the chemo. My surgeon was Dr. Fischer at Hermann Hospital in Houston. He was recommended by my GI dr. I tried to get in to MD Anderson, but I started the process too late and decided to do something different. I had also contacted Sloan-Kettering in New York and got a very quick response from them. There is a Yahoo group that you can join and read some interesting info. on treatments that other people have gotten. It's a health group titled Duodenal Cancer that you can find on yahoo.com. There is also another website - rare-cancer.org - it has info. and a forum. I wish you luck, and please write and update us on your brother's progress. Janet

Belinda: I have been wondering how your husband is doing? I have been praying for him and your family. I hope all is well! Blessings, Janet

Joyce: There is good staging info. on the National Cancer Institute website. I was a stage 4, as mine had gone to a lymph node in my neck. But now, 8 months after my chemo ended, I am doing well and there is no sign of recurrence. I hope your father is recuperating well from his Whipple. I did not have the Whipple, only a resection. I am surprised they aren't doing chemo if he had local lymph node involvement. I had 4 out of 22 that were positive and they said I needed chemo, even before it showed up in my neck. Take care and keep us posted! Janet

I recommend your mother do the chemo. I had stage 4 small intestine cancer, which is so rare that they give you colon cancer chemo. I had 5FU and leukovoran and it was not too bad, compared to most chemos. My hair only thinned (did not fall out completely) and I was nauseous, but they have good drugs (Zofran) for that. I had some neuropathy in my hands and feet, but it did not inhibit my activity. I also had cold sensitivity and couldn't eat or drink anything cold. I went for chemo 3 days a week every other week for 4 motnhs and wore a pump home 2 nights. I finished my chemo Dec. 4 and so far I am cancer free! It's good that you have your faith - it will help you to get through this! God doesn't leave us or forsake us - He is always with us! Blessings, Janet