CancerCompass message board discussion started by Iris1 on 7/13/2008 http://www.cancercompass.com/message-board/message/all,26026,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ In December my domestic partner, who is 49 years old had radical neck dissection. At the time, the cancer was unknown primary. After surgery, we were told he was at stage 4, tonsil cancer and he would need radiation. All of his teeth were extracted, as he didn't have time for dental work, as he was told radiation could make them fall out. Along with the radiation, he was given weekly injections of Erbitux, which supposedly would keep the cancer from spreading, as we were told cells could escape. So, from January to March he went through the rest of this misery. Last week he had the CT checkup scan and was told that two soft tissue nodules are in his lungs. The doctor said that there isn't much that can be done treatment wise. Chemo might help but he didn't seem very positive. My boyfriend said that he is not going to do anything further. He's had enough. He is thin as a rail and won't wear the dentures, which he can't get used to. He also didn't have insurance but luckily was awarded Medicaid a few months ago but that also provides for limited choices. Anyone have an experience with this cancer spreading? Thank you. Iris1 Sun, 13 Jul 2008 00:00:00 GMT My husband had prostae cancer got rid of that, then he got sick and we found out he has squamous cell cancer in a lymph node in his neck. We found a tumor in his lung also which was not the same kind of cancer. My husband had part of his lung removed and now the lung cancer is gone. He just had his tonsils removed and several biopsies done to try and find the primary source. Don't give up!!! It is normal to go through stages where you are anrgry, tired, mad and just want to give up. You didn't mention where you live, but My daughter is in the medical field and she says that teaching hospitals have studies that save people every day. Also I was told, the Natioinal Institute of health has studies in Bethesda Maryland and they pay for all transportation costs and everything that is involved. Why didn't they check the tonsils before they did a neck disection? The neck disection is after you try and find the primary. I read on thus site about a drink called cytogainer that really helps. A feeding tube would help him feel better also. It is temporary and gives extra nutrition while they are in treatment and don't feel like eating. Please write back and let me know how you are doing. Rodswife Fri, 18 Jul 2008 00:00:00 GMT Rod's Wife: Thanks for responding. Sounds like there has been a lot going on at your end too. Good that your husband was able to have surgery. I was told not everyone is a candidate. Dennis has 2 soft tissue nodules on both right & left lower lobes.I am in Minnesota, he is in Ohio. I lost my job there but spent months helping him get Medicaid (he is only 49), as no insurance and thru treatment.  I'm trying to get Ohio house leased out so I can get him here. Of course, we'd have to go thru whole Medicaid application mess again. I called University of Minnesota. They do have clinical trials. They did corroborate that the size is too small to biopsy yet. They suggest a PET scan in 2 months. They said it would have been better to get it all the first time, of course. I don't know why the doctors did what they did. The cancer couldn't be found from Sept-Dec, after ever scan imaginable, including PET. That's why the surgery was done. Said cancer was "hiding" behind tonsil & couldn't be found. Was Sqaumous cell so can't help but feel that is what is now in his lungs. He just had feeding tube removed, after months and was excited about dentures 'til he found he couldn't wear them easily. I ordered him some Mangosteen-an immune builder waiting for it to arrive. Will check out your other suggestion. How is your husband now? Iris1 Fri, 18 Jul 2008 00:00:00 GMT