Cancer Of Unknown Primary

My niece was diagnosed with cancer at the end of June 2001. Her surgery was in July, they did a complete hysterectomy and removed two tumors. They cannot seem to find the primary source of the cancer. In the meantime the cancer has spread to her liver (two tumors inside and multiple outside) and more recently a 5cm tumor on the top of her vagina. She will start chemo next week and we want to make sure we are doing the right thing. Any comments and advice would be appreciated.

Thanks, Auntie

Without diagnosis of a primary cancer site, it is difficult to determine what
the most effective treatment for your niece should be. I'd be happy to send
you some general cancer treatment guidelines that might help you get started
in your "quest for the best"; then if you do pinpoint a primary site, I can
send you more specific information relating to the type of cancer your niece
has. Regardless of diagnosis, your niece needs to be on a strong nutritional
program to help her recover from surgery, tolerate her treatments and support
her immune system. Let me know if you'd like any information about nutrition
or my telephone consultation service. I'm here to help and welcome the opportunity
to work with you and your niece!

Please call Cancer Resource Center, 800 940-2822 and specifically request the
information I mentioned above.

Kim Dalzell, PhD, RD, LD
Clinical/Oncology Nutritionist

In April of 2000, I started having back pain. On Dec. 11, 2000, I was diagnosed with C.U.P. (cancer of unknown primary). It is Adenocarcinoma. They found the cancer in the lining of my right lung. Starting in Jan. 2001, I rec'd. 3 mos. of Taxol & Carboplatin. No help. Starting in April I rec'd. 3 mos. of Taxotere, Gemzar, and CPT11. Signs looked good. Took off the month of July and started back on the latter of the 3 and had new CT scans and such done, but the cancer had started to spread again.
So on Jan. 23 of 2002, they tried to radiate (just for the pain). They also started me on Thalomid (Thalidomide). My appt. last week (after CTs) showed no improvement.
So here I am a 37 year old mother of 3 teenage boys with nowhere to turn. We have discussed clinical trials but only 3 look worthy of checking into, (then I have to be accepted) and 2 of these are phase 1 which doesn't sound promising to me. Through all the chemo, medication, radiation, etc. I have never been sick. I don't feel bad (other than the pain in my back) To begin with in Dec. 2000, they told me I only had 10 mo. to live. Then in Feb. of this year, I was told if the Thalomid didn't work, I had less than a year. I'm still here. Does anyone have any information on this type of cancer? I have good insurance, am willing to travel, have many supportive family members, and I'll do whatever it takes to beat this. Please let me know (I live in Indiana.)

Cheryl,

Cancer Treatment Centers of America, sounds different from all the others. They are extremely friendly and willing to work with you, to make YOU happy. They will send you a boat load of information, as well as a video and a little book.

I am currently making plans to visit CTCA, MDAnderson and JHU. Have already been to Duke. Call each one up, and ask if they have anything to offer you, in your particular case.

Please don't listen to the doctor's who tell you "how much time" you have left. They are all guessing, anyways, as everyone is different. I believe that most of their estimates, are based on overall averages, anyways. I have a really great list of those kinds of words, with excellent definitions, if you'd like me to email it to you.

Have you found any good sites on the internet for CUP ??? Let me know if I can be of any help there, also.

Anne

My mother experienced back pain for over a year.-- She was diagnosed with Cancer of the unknown primary. She had 8 treatments of Taxol & Carboplatin which did not shrink the tumor in her stomach.-- I then took her to Sloan Kettering in NY and they diagnoised her with large cell neuroendorcrine tumor perhaps arising within the uterus.(Her uterus has expanded to four times its normal size)-- She is now going to try Irinotecan-- I will let you know if this works.

 

On 8/20/2002 Anne G. wrote:

Cheryl, Cancer Treatment Centers of America, sounds different from all the others. They are extremely friendly and willing to work with you, to make YOU happy. They will send you a boat load of information, as well as a video and a little book. I am currently making plans to visit CTCA, MDAnderson and JHU. Have already been to Duke. Call each one up, and ask if they have anything to offer you, in your particular case. Please don't listen to the doctor's who tell you "how much time" you have left. They are all guessing, anyways, as everyone is different. I believe that most of their estimates, are based on overall averages, anyways. I have a really great list of those kinds of words, with excellent definitions, if you'd like me to email it to you. Have you found any good sites on the internet for CUP ??? Let me know if I can be of any help there, also. Anne

Hello, Anne ...

I'm new to the Boards and was interested in your message since I am now looking for the best place to go for evaluation.  How did your visits go at Johns Hopkins, MD Anderson, and Cancer Centers of America?  Are there any others that you have visited? 

Thanks for any info, and I wish you the best.

~Victoria 

 

 

 

On 3/17/2003 Tony L. wrote:

My mother experienced back pain for over a year.-- She was diagnosed with Cancer of the unknown primary. She had 8 treatments of Taxol & Carboplatin which did not shrink the tumor in her stomach.-- I then took her to Sloan Kettering in NY and they diagnoised her with large cell neuroendorcrine tumor perhaps arising within the uterus.(Her uterus has expanded to four times its normal size)-- She is now going to try Irinotecan-- I will let you know if this works.

Hello ...

I'm new to the Boards and was interested in your message since I'm also considering Sloan-Kettering.  How was your experience there? 

Any information on Sloan-Kettering or other cancer centers would be greatly appreciated.

Thanks, and I wish you the best.

~Victoria

 

 

On 6/2/2007 Desert Mermaid wrote:

 

On 3/17/2003 Tony L. wrote:

My mother experienced back pain for over a year.-- She was diagnosed with Cancer of the unknown primary. She had 8 treatments of Taxol & Carboplatin which did not shrink the tumor in her stomach.-- I then took her to Sloan Kettering in NY and they diagnoised her with large cell neuroendorcrine tumor perhaps arising within the uterus.(Her uterus has expanded to four times its normal size)-- She is now going to try Irinotecan-- I will let you know if this works.

Hello ...

I'm new to the Boards and was interested in your message since I'm also considering Sloan-Kettering.  How was your experience there? 

Any information on Sloan-Kettering or other cancer centers would be greatly appreciated.

Thanks, and I wish you the best.

~Victoria

Dear Victoria,

Sorry to hear about your mother.

I came to this website because my brother in law has cancer. he is taking original LIMU with the highest concentration of fucoidan - it is liquid, and he is improving slowly.

Wishing you Mum get better.

Please send me an email and we can discuss further.

If you want more information

Guadalupe

 

 

 

Cheryl L-

I am not sure you are still with us.  To all others with unknown primary- I have researched this extensively- and am an MD- there is one world expert in carcinoma of the unknown primary (CUP)- his name is F. Anthony Greco and is in Nashville Tenn- I have seen him- he is wonderful- everyone with this cancer should go see him for an opinion- I have had surgery, radiation, and extensive chemo- but am still here and feeling well 1 1/2 years from diagnosis.  Please go see this man if you have CUP.

Keith

My mom was diagnosed with squamous cell carcinoma of unknown primary metastisized in her lymph nodes February of this year.  Thus far her doctors have not given her much hope but we are actually in Nashville....so I am going to look him up.  I have been looking for a doctor that specializes in this type of cancer.