Rare forms of cancer

On 8/22/2006 Susanlyn wrote:

Dear Marie, I hope your mom is doing well. It can not be easy for her with crohn's as well as the cancer. I have just finished with my first bout of surgery. I had a 29cm mass from the adrenal gland. It surrounded my kidney, and they had to take it, my gall bladder with stone, a scrapping on my liver, and they restructured my vena cava. Now I face chemo, but my oncologist doesn't seem to be in a rush to start as there is no protocol for this type of cancer. I wish I knew more and had the ability to ask the right questions. Have you had any luck with nutritional aids? I do best emotionally with prayers. I hope your mom is getting tons and tons of them. This must be very hard on you and your family. I know the other side too, as my mom died of Signet ring cell cancer 2 years ago and my son in law has Salivary gland cancer. I guess I just wanted you to know you are not alone, and bless you and your family, susan

Dear Susan,

Thank you for getting back to me. This is the first time I got to look at it, my mom passed away 12/23/06.  She was a fighter, it was fast, she had little pain.  Mom couldn't do the treatments, the side effects would have been worse because of the crohns. She wanted quality of life and that is what she got.  This cancer sucks, I did find a web page T-GENE. Look into it. If you can't find the site please let me know, I will find it for you. Mom's last onoclogist tried thalidamide, but it was too late for her because it was to far gone the cancer,  but he has a patient on it and it slowed it down, also Sutent was another medication he was looking at. The problem is these medicatins are not for adreanal cancer, so insurances make it hard to get them.  We fought and did get the thalidamide she used it for a short time. Having crohns limited her, but for you it may not, don't give up try something, the side effects may not be bad. Please keep in touch and thank you for your reply.  I will prayer for you, God Bless.  Marie

Hi there,

I am living with my family in Ireland. My wife has cancer and the primary was never found. She started with a pain in her lower back, left side and sometimes the pain moved under her chest area. To make a long story short she was operated on on the 8th May and the surgeon said to me when he came out of the theatre "sorry the news is not good". He said she had a large tumor sitting on the pancreas, left kidney, adrenal gland, spleen, aorta, and the bone. He said how he had samples sent off to the lab during the operation and that the lymph of the bowel was also malignant. He said he could do no more only to close her up again. He said the cancer was very aggressive and invasive. At first my wife was diagnosed with adrenal cortex neoplasm. Then there was a difference of opinion between pathologists. Two pathologists thought it was renal cancer and two thought it was adrenal cancer.  I had slides sent to an adrenal clinic in Michigan and to the National Cancer Institute in Maryland. The diagnosis was that it was not adrenal. The cancer was diagnosed as CUP, cancer of unknown primary. Again I heard the word "sorry" coming from both institutes. One pathologist said "Get your support system in place", the other said "Your wife has an incurable cancer". My wife at the moment is very low and has lost all her weight. She has been in bed for three months and has no energy. She has stopped eating but is still taking alternative medicine, drops and spring water. I feel now that she needs something to kill those cancer cells. My question is has anybody used cessium chloride or anything that might help me save my wife. We have a lot of faith and a lot of prayers are been said. Looking for divine inspiration.

On 9/5/2001 Patti I. wrote:

When I was a baby, my Dad died of a rare form of cancer, the physicians involved have since died, and medical records have been destroyed. Is there anyone out there that may be able to help me to track down the info I am looking for???

Darcy,

I too have protein c and protein s deficiency. I was recently diagnosed with colon cancer but I have never heard of a link between the blood disorder and cancer. Where can I find this information? I am very curious to see if there is any link. Please let me know.

Thanks, Sheryl