Cancer Unknown Primary

Hi Jodi, In Feb. 2005 my mom was diagnosed with CUP - Adenocarcinoma and was told she only had a few months to live. The doctor told my mom to go home and finalize all her papers. My family was devastated as we are very close. At the time we did not realize the doctor was only giving us an approximate time based on previous CUP cases. This does not mean that the doctor knows exactly how long your mother is going to live. My mom went through chemo and tolerated it well. She was told she was remission in June 2004 and is still in remission today!!! We live in northern Michigan and she sees Dr. Ervin Hire who is a great oncologist. I didn't like him at first because he was the one who gave the devastating news. He then recommended a treatment plan. My mom then went to UofM for a second opinion. She saw Dr. Gregory Kalemkerian at UofM who gave the same horrible diagnosis and recommended the exact same treatment plan. When she came home I sent an email to Dr. John D. Hainsworth (who has done a tremendous amount of CUP research)to confirm the treatment plan for my mother's diagnosis. He was great. He emailed me back right away and confirmed the treatment plan was accurate. It was hard for my mom and everyone else to accept the diagnosis. But you have to move forward and do everything that you can to make sure that your mom is receiving the best treatment available. What chemo is your mom receiving? Remember that just because a doctor gives you a few months to live, he is not God. He can't tell you when you are going to die. I have heard of quite a few CUP cases where the patient lives for many many years. It has been almost 2 years since my mom received her diagnosis and she feels great. I attribute this to my mom's great attitude and a wonderful oncologist (Dr. Hire). Debbie

Message: Hi Jodi, In Feb. 2005 my mom was diagnosed with CUP - Adenocarcinoma and was told she only had a few months to live. The doctor told my mom to go home and finalize all her papers. My family was devastated as we are very close. At the time we did not realize the doctor was only giving us an approximate time based on previous CUP cases. This does not mean that the doctor knows exactly how long your mother is going to live. My mom went through chemo and tolerated it well. She was told she was remission in June 2004 and is still in remission today!!! We live in northern Michigan and she sees Dr. Ervin Hire who is a great oncologist. I didn't like him at first because he was the one who gave the devastating news. He then recommended a treatment plan. My mom then went to UofM for a second opinion. She saw Dr. Gregory Kalemkerian at UofM who gave the same horrible diagnosis and recommended the exact same treatment plan. When she came home I sent an email to Dr. John D. Hainsworth (who has done a tremendous amount of CUP research)to confirm the treatment plan for my mother's diagnosis. He was great. He emailed me back right away and confirmed the treatment plan was accurate. It was hard for my mom and everyone else to accept the diagnosis. But you have to move forward and do everything that you can to make sure that your mom is receiving the best treatment available. What chemo is your mom receiving? Remember that just because a doctor gives you a few months to live, he is not God. He can't tell you when you are going to die. I have heard of quite a few CUP cases where the patient lives for many many years. It has been almost 2 years since my mom received her diagnosis and she feels great. I attribute this to my mom's great attitude and a wonderful oncologist (Dr. Hire). Debbie

 

On 11/11/2006 Jodi Lynn wrote:

My mother was diagnosed with CUP (Cancer Unknown Primary) in July 2006. It is now November and it's not looking good. She has mentally given up, but we have not. She has had 5 chemotherapy treatments and the last one took a very heavy toll on her. The Doctor gave her 3 options: 1.) go home and get hospice 2.) milder chemotherapy 3.)get another opinion. We are at a loss for where to go. She is so weak. We are not sure if she can make a distant car ride. We live in Michigan. Does anyone have any suggestions as to the best & closest place for her? We have heard of Cleveland, OH and Detroit. Thank you. Jodi Lynn

 

 

On 11/11/2006 Jodi Lynn wrote:

My mother was diagnosed with CUP (Cancer Unknown Primary) in July 2006. It is now November and it's not looking good. She has mentally given up, but we have not. She has had 5 chemotherapy treatments and the last one took a very heavy toll on her. The Doctor gave her 3 options: 1.) go home and get hospice 2.) milder chemotherapy 3.)get another opinion. We are at a loss for where to go. She is so weak. We are not sure if she can make a distant car ride. We live in Michigan. Does anyone have any suggestions as to the best & closest place for her? We have heard of Cleveland, OH and Detroit. Thank you. Jodi Lynn

I assume that they have not found the primary site as of yet.

If they have not please contact me privately I have researched and found a tool (not yet FDA approved) that has I high probability of finding the primary site.  If they can do that, it may be possible to change the treatment to drugs more targeted to the specific tumor type, thay might yield better results.