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.

Anemia can also be as simple as an iron deficiency which is the leading cause of Anemia (according to the all knowing and always correct WW). I had nose bleeds as a kid once and my parents made me take these HUGE UGLY HORRIBLY TASTING iron pills.

You would have been much better off taking vitamin K for the nose bleeds, I have had them since I was 6 and still do.

http://www.nlm.nih.gov/medlineplus/ency/article/002407.htm

More about anemia

http://www.nhlbi.nih.gov/health/dci/Diseases/anemia/anemia_causes.html

blood work done February, evidentally there was nothing to indicate things were different enough to check further. I guess what scares me is how fast things can change - there was a weight loss but we all thought it was from more activity from winter to summer, although the doctor wanted to know how much and if it continued

Gary,

They probably hadn't discovered vitamin K back when I was 7.

One of the 'markers' in my blood when I was diagnosed with lymphoma was super low cholesterol. I think it was around 120 and was flagged in pre-op blood work for being off-the-charts low. No idea what the correlation was but the oncologists said it can be a symptom.

Vitamin K has been used to enhance clotting for decades. I was getting it when I was 6 and I'm 7 years older than you.

That's interesting Margaret about the cholestrol marker. I assumed that is was something showing on the White count - as all was normal in February, at least no follow ups were made by our primary.

Yeah but I grew up in Short Pump, Va! Actually the suburbs of Short Pump.

Thanks, Gary,

I guess we have alot to learn, but thought that if the blood work was clear, all was fine. Evidentally that is not the case.

That's what happened to our beloved dog in March, he got nasal cancer, became anemic and could not get treatment without a transfusion first. Was gone in 2 weeks. It was a terrible year, as that was my husbands best buddy and spent 12 years together and now he has cancer.

We had to go back to Roswell on Tuesday as the cells are growing back over the top of my husband's back tooth and causing pain - he has a brush to abrade them 2 x's a day which he does, but they are still winning. They won't pull the tooth although it needs to come out as he had the PDT and it is all so open in there they don't want another avenue to infection - but we will see the doctor on Thursday and he may say to go ahead. Still cannot open his mouth far and is doing exercises.

How do you make a signature below the line? On our profile - I didn't see where to do it -

If he has had radiation, pulling a tooth can have serious side effects, such as osteoradionecrosis. He would need to take about 30 "dives" in an HBO chamber before they can pull the tooth, especially if the tooth was in the radiation beam path.

I have lost 2 dogs to cancer as well (since I was treated) and it sucks. I am sorry to hear about your dog.

Signature: Go to "mystuff", then click on profile and scroll down to the botton of the page. The signature block is down there.

Gary, he didn't have radiation, unless the Photodynamic Therapy would be considered radiation, although it is a light applied to an area after being infused with a light sensitive drug being taken the day before. So, I think the problem is that the area is healing and very open and this would just lead another open path for infection?

We will see the surgeon Thursday for our January 1 month visit. He will make the determination whether to pull the tooth or leave it. It is very painful to Tom and right now, he is on antibiodics.

Evidentally, the PDT can also affects the teeth and a dentist from the trial team is there during the procedure to protect them.

You know, seems that one thing leads to another and another - like you can't just have something clear up without another phase to it.

Life and cancer are not simple, are they.

Gary, you are a wealth of information and I thank you. I thank All on this forum, and you are all wonderful and very kind.

We will read all the things you have linked for us.

It is funny, some days, I don't want to know anything - and other days, I want to know it all. Like the ostrich in the sand - maybe it will go away.

The other side of it, at least for me, is if I don't know, I can think good thoughts and have hope. Sometimes if I read one little thing that is not good - even if it is a rare thing that doesn't often happen, it will put me in a slump.

Anyhow, overall, I still feel knowledge is a good thing and you have to be your own advocate and to do that, you have to have the information.

The Stage of this tumor is somewhat confusing.

The oral surgeon/MD, who we originally were sent to Nov. 1 for a biopsy - this right from the dental hygienst chair - told our dentist he felt it was a Stage 2.

From reading, a Stage 2 indicates Lymph node involvement and he doesn't have that, was tested two times - the latest the day of the procedure. Although they had talked of taking the sentinal node.

We realized that the PDT will only be successful at a certain depth - which is Stage 1 tumor and to a certain depth that the light can get to.

When we were in recovery waiting room, we were told the tumor was deeper than they thought and might have to be re-done in March. This is when he will have a biopsy done, the three month appointment.

I was not feeling too optomistic after hearing that, and my sister in law was with me and heard it too.

The question would be as it is a Clinical trial and has to meet certain parameters, and he did,so maybe the Oral Surgeon was thinking it looked larger?

However, since the tumor was deeper than they thought, does that mean it was a Stage 2? Could it have grown deeper since the biopsy done in November - the PDT was done December 8th.

Seems that Stage 2 has two descriptons - one involving size/depth and one regarding lymph nodes.

I am sorry to hear of your sweet dogs, always in your heart.

Gary - Just as an aside to this thread and your mention of having nose bleeds since age 6, I too, had nosebleeds since around age 5 which were profuse and lasting an hour or more until the age of 20 when I had the veins in my nose cauterized. The Doctor explained that the veins in my nose were too close to the surface of the skin and that even the slightest trauma to the area (blowing the nose, etc.) could cause the bleeding. After the cauterization, no more nose bleeds.

Has anyone had experience with Trismus - or where you cannot open your jaw very wide? Thanks alot - Darbi

A lot of us have this issue. I still do and the doctors don't think it will get any better. I was given a therabite which is a device used to help stretch the mouth and there are other excercises that different ones have used. The important thing is to do some form of excercise and definately keep it monitored so it doesn't get worse. I can just barely get two fingers in my mouth now. Is he doing regular excercises?

Sharon

Darbi

Look at the upper right hand of your screen. There is a Search box. type in Trimus and all the prior posts on this will pop up. I'm still using a Therabite 3 years after DX and it keeps my trismus down to about 27 mm. Rule of thumb: if you can't fit three fingers in easily, you have trismus.
Charm

Thanks, Charm2017,

I forgot about the Search feature thank you.

Nothing was said about exercising your jaw after your procedure that I remember.

I'll have to look into the Therabite - maybe on Amazon. He was finally told to use the popcycle sticks when he brought it up at an appointment 2 weeks ago.

They did an MRI a week ago - as he has a small hard lump in the area of the trimingle nerve. He felt it and the doctor sent for the MRI - with contrast dye. We will meet with him in 2 weeks to go over the results of that.

It just is so much, and some days you feel better than others.
Guess that's true of everyone in this forum - Bless you All, you are wonderful - supportive and caring.