Hi Everyone, I have not posted for awhile have been going through alot with my husband lately. We went to the doctor yesterday and she was horrified to see the weight loss in him. It was 12 lbs since the end of December when they did another Biopsy that ONO had asked for. He can not eat he swallows then it hurts he is back on Pain Pills. He was hospitalized last week for low oxygen levels and fever of 102 and he is so malnutritioned that he has no strength. He sleeps alot and is just not coming on the up side that they had expected by now. She is sending him to a ENT at the Mayo Clinc and is unsure that the other ENT took the right Biopsy, she is confused on what is going on with him because he seems to be going downhill instead of up. He finished treatment in the end of September and looks worse than when he was diagnosed with StageIV mast to Lymphnodes and on bothsides of his neck. We are concerned that some of the readings are just not right and he has somemore cancer or problems somewhere else if anyone including you Brian why this can be happening please let me no I really am scared and so is he. Thank you all for your posts and please help me understand this. Bobbie

Bobbie,

So sorry to hear your husband isn't doing well...I know I can't answer your questions, but I wish you well and you should get answers atthe Mayo Clinic.
Has anyone ordered CT Scans of other parts of his body? Such as chest, abdomen, and pelvis?

Take care,
Dinah

I am posting from a remote computer since my system is down ( I am moving all this week and have no computer access) Since your husband had mets to the lymph system, there is always the possibility that some cancer cells migrated to a distant location at that point. It would be prudent to do a PET test to take an overall look at things, and to be sure that the most likely location for metastasis, the lungs and the rest of the aero digestive tract, are looked at with a scanning technology as well. In his weakend post treatment state, he is a candidate for numerous types of infections ( high temperature). If he has not been eatng well and his immune system is compromized by poor nutrition and the treatments this could be a cause. But please have them check out possible metastasis sites, don't panic, don't expect the worst, just be sure that you have looked at everything.

Brian thank you for your information, I did have the Pet Scan done and the MRI and CT Scans done at the end of November and they did a Biopsy on Dec 27th and said it had SCC cells in it but was not malignant. The new ENT was asked to see him by his ONO because she does not know why he keeps losing weight and his throat feels like it does. I had the MRI and Scan done on neck to Pelvis. She just wants a second opinion is not sure we got the right results. Still scares me seems like this is such a mess with the fungus, and all. She also put him on a appetite enhancer hoping it will make him want to eat for the time being till he gets into the other ENT and they can colaborate. Thanks for all your support and thanks to the members that answer my questions,just feeling really scared right now.

Does your husband have a peg tube? I cannot imagine John's being able to eat or maintain any weigh without it. He finished his radiation and chemo in August and had surgery in Oct of 2002 and the peg is his main source of eating. He does not gain weigh but neither does n he lose.
We have had several very bad scares from doctors who were not cancer specialists. If they are not, they do not seem to know the answers. This may not make sense but what I am trying to say is get with the experts and find the answer.
Our prayers are with you both.
Meredith

Meredith,
Is John's swallowing improving? I had another swallow study last week and we discovered why food gets stuck in my throat. I have a stricture or blockage in my espophagus. I will have to see a gastro/enterologist who will do the balloon dilation I am sure. Unfortunately the results are not permanent from what I hear. At least we defined the problem and maybe one day soon I will actually be eating! Best wishes for you and John.

Danny G.

Danny......That is GREAT news! Finally an answer to your problem! Don't forget to post when you have your first full meal. From the sounds of it, it may be just around the corner. Hope so. Sincerely, Donna

Thanks Donna,
My procedure is scheduled for tomorrow, Friday, Feb 7th. I am hoping for success.
Also I have changed from the compliant patient to one who now asks a lot of questions. I am unhappy that I have had a blocked throat for two months and with all my doctors and staff at what is supposed to be the number one cancer hospital in America, nobody bothered to diagnose it until my last swallow study a week ago.

Danny