Hi Belinda:
I'm sorry to hear about your husband. My husband was diagnosed with the same cancer in January, 2004. He had stomach surgery and underwent a series of chemotherapy treatments. On June 24, 2004 he passed away. It has been very hard on the family but God has given us the strength we need. He did not have a lot of pain but was very weak. The doctors said it was a very rare type of cancer.
I will be praying for you that your husband gets through all of this.
My prayers are with you.
Donna
My brother (45) was diagnosed with stage 4 duodenal cancer last week. We live in Alabama, and they say there is no cure or help for him here. They have suggested chemo, which is experimental, because the cancer is so rare. If you have treated for this with good results, please let me know where and by who. We are desperate.
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
Hello All,
I am so sorry I have not responded for some time. We just got back from a much needed holiday. My husband is on a 10 day health retreat at the moment, it is part of the Gawler Foundation, in Victoria, Australia. Ian Gawler had bone cancer some 20 years ago, it returned and they thought that it was terminal,the medical profession could no longer help so he turned to holistic treatment, meditation, diet, juicing etc and he has been cancer free for many years since. I am sure you can get a copy of his most popular book through amazon. The book is called "You Can Conquer Cancer". We read this before he went into have the whipples last year. Ever since reading this my hubby has 3 fresh vegetable juices a day, meditates and now since completing chemo takes quite a number of supplements, vitamins and minerals.
Janet it is so good to hear you are well, reini's next tests are in November, but he will have more blood tests next week. I am not sure if I asked you before what you tumour marker number was? Reini never had one, I think it was about 0.6 but he is low in iron and I am not sure what that means.
LisaI am sorry to hear about your brother, I know that they said they would not operate if they found cancer elsewhere with my hubby prior to doing the PET scan, but I think they use radiotherapy first with chemotherapy to reduce the tumour size prior to operating. Because we are in Australia I cannot really offer advice in Medical Centres. I do think it is worthwhile reading the book above, another good book is by Patrick Quillin which we have started reading called Beating Cancer with nutrition. We are sure the juices helped my hubby through chemo.
Thankyou very much for your kind words of support Donna, I am so sorry to hear of your loss.Did your husband have a whipple's aswell? What chemo did they try. I am sorry if this makes you too upset to remember it all.
The oncologist did tell us that duodenal cancer is very rare but she has seen it in a number of HNPCC syndrome patients. Because this cancer is so rare she used a colon cancer protocol. SHe said that colon cancers are mostly adenocarcinoma's which is what his was and that it was part of the small colon rather than treating it like a stomach cancer which would be different again.
My hubby had 6 mths irinotecan, 5fu and leucovorin intravenously every fortnight with a 49hr 5fu infusion that he would take home. I think its called the folfiri regimin
Sorry once again for taking so long to reply
You are all in our prayers
Belinda
Hello Joyce,
Sorry to hear about your father. I must admit I am very impressed in how he pulled through the whipples. I have been told that it is one of the biggest ops in terms of what the body has to go through. Take Care Belinda
Hi Janet, I am sorry I replied to you on another message thread but I thought I best reply to this message so that Cancer Compass will send you an email that I responded (Please refer to the message to Lisa). Hope all is well. Belinda
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
Hi janet hope you are well, just thought id let you know the good news that all of reinis scans were clear. if we dont speak before christmas have a wonderful holiday and a happy new year take care , Belinda
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
Hi,
My husband was diagnosed about a month ago with
duodenal.Last week he went in for the whipple and the duodenal
cancer had gone into his pancreas and spread to the lining of his
abdomen. They only bypassed his tumor and told us to do
Chemo. The fact that it is duodenal cancer in the ancreas is better
than the opposite. I am praying through chemo th tumor will
shrink and the lining will go away as well. They say the lining
cancer he can survive. Where did you go for chemo, do you know
a surgeion who would possibly go bac in. Do you think we have a
chance? He is the greatest guy and is willing to fight this thing.
Any info you have wold greatly be appreciated
thanks darcy