I wasen't sure where to post after the Introduction, Under Treatment and posted a rather long message.

Have been reading alot so many things, I didn't know why losing weight happens even if you are eating fairly well.

I assumed that it was that food didn't appeal or the treatment made you ill to eat.

From what I have read, it is the tumor itself is taking the nutrients to grow as it is part of your DNA, meaning it is part of your body. That is why you lose weight. Am I wrong in this?

Sometimes I wonder if reading is a good thing or something that just scares you to death. I go back and forth on this, is it better to Know or just to have hope and not know? How do others feel about this? I am going to try to move this message to another area in the forum as I think it is not an introduction matter. Thanks all, Darbi,

Tom's wife/caregiver, Photodynamic treatment of the buccol mucosa right side, December 8, 2010, Roswell Cancer Institute.

Darby,

Reading good information from proven sources is always a good thing. Scary, sure, but in my humble opinion it is always better to be informed and seek understanding. Without all of the information how can you make the best decisions for you?

Losing weight is a multifaceted effect of what's happening to the body during treatment. Side effects from Chemo, radiation, opiate pain medication are culprits along with what is happening metabolically in the body as it's trying to heal and recover. Stress is also another culprit to weight loss.

I went through treatment and surgery before I found OCF. I read like a madman before cancer, after being diagnosed I read even more. At first it was scary...I couldn't believe this stuff was a possibility for me. I found a ton of really bad information on the internet that scared me even more. When I found this site however and realized that people could and did survive what I was going through it gave me hope.

The more educated I became about what I was going through helped me be more actively involved in the treatment and recovery. Knowledge gave me an understanding and eventually peace once I got my head wrapped around things. I sincerely hope that others can find the peace that I've found in life despite what they are going through.

One of my favorite verses from a song is "I wish you freedom, I wish you peace." (Marc Broussard)

Eric

Thanks, Eric, I was just picturing this ugly thing taking on all the nutrition that it can so it can keep on.

Then I started to think that if he wasen't losing weight, that might mean that the PDT got the whole thing out in December. So many things, but I am a reader and I feel, as you said, the good information and being informed and unstanding what you are dealing with makes sense. You have to be your own advocate, as sometimes even the very best don't have all answers at times. I think this is the best place to post messages - as I had been posting in the introduction thread, too.

To David and Charm, Thank you for your messages and Charm, you are so right - who said that they had candy bars and pop and pretzels while sitting in a waiting room. I had to smile when I read that as it is so true, human nature protects itself even when fighting a battle - honesty is so important when you are asking for help and especially from the one who is trying to help you.

Tom didn't have radiation or any chemo treatments as yet, and we don't know if he will.

The Photodynamic treatment that he had in December is one that disentigrates the cancer cells with a light treatment after being infused with a chemical which makes you light sensitive for a week or so. The procedure is done one time.

Then there is a 3 month period a biopsy is done.

Waiting is so hard, you are hopeful some days and others are such sad days - the winter here is long.

I was never one to eat snacks or junk food and I still lost appx 30% of my total body weight. I was one that didn't get the PEG and I was a very bad patient.

Darby - I think it is definitely better to get the information and to know where you stand even if it is scary so that you can start fighting it rather than wait for things to get worse and immobilizing panic to set in. For me, as a caregiver, right after the Dr said "Squamous Cell Cancer and before I found OCF, it scared me so much, I found myself sitting at my laptop searching for "Squamous Cell Cancer" and paralized at the thought of what I would discover. I couldn't believe how scared I was to take one finger and hit the key that would tell me if my son would live or die. I could NOT hit that key and it took several tries and several prayers and talks with myself and remembering the positive aspects of what the surgeon had to say about my son's upcoming surgery before I had the courage to hit that key on my laptop. It was really rough and I was only the caregiver. I can only imagine how much scarier it is for a cancer survivor. Once you start taking action and getting into fight mode, you feel more in control and it gets a lot easier. My son and I found OCF after he had started Rad Tx and the wealth of information as well as the compassion and knowledgeable help and experience of others here is what got us through and on the way to recovery and being cancer-free!

He was stunned with the diagnosis, having gone for a 6 month cleaning and the hygenist went to get the dentist immediately and then to the oral surgeon for a biopsy..

I remember thinking he had lost weight and asked the doctor about it as he had been there in February for his annual physical.

Wouldn't blood work have shown any cancer cells if they were there in February?

No blood test available for Oral SCC.

Thanks, David. I guess I thought that blood work would show unusual levels if things were off - like the white count or something.

When our sweet dog was 12, he developed nasal cancer and was gone in 2 weeks, this was last March. His last blood work showed that he was anemic.

This is why I wondered if Tom's blood work showed that and be a sign that something is not right in February. The doctor would have notified him I would think.

I am trying to pinpoint when this all started - we have been so careful with removing or checking moles and going to doctor/dentist for regular appointments.

There is no direct blood test (yet) but there are plently of markers that they look for in the CBC, WBC and other blood work. That's why staying on top of the labs in critical. The numbers will fluctuate considerably from the baseline tests taken before Tx. They are really looking for trends. Anemia is perfectly normal as radiation zaps the red blood cells passing through the carotid during RT. The body replaces the red blood cells every 120 days or so. Your blood chemistry may never be quite the same as pre-Tx and that's pretty typical.

Anemia, without RT (or ceertain chemo drugs) typically is indicative of lymphoma. bone cancer or other etiology.