Delia,

Our MO told us right off that it is not a genetically linked cancer...I hate to say it but its the smoking that is the the most common cause for oral cancers. That is why I urge you to get Charlie some help. You guys don't want to have a reoccurrance after you've fought the battle of your life. I pray that Charlie finds the strength. It's a powerful addiction. I don't mean to preach, I just want you guys to have a long happy life together(with lots of babies!)

God Bless...Let us know on your scans. Just another week to wait, we have to wait till August for Stephens scans..it's like waiting for your fate to be decided - pure torture.

All my best, Kerry

I too would like like to know where he got that information, Brian has said it is not genetic and he is on top of this stuff.

Here's a link to what MSKCCC has to say about it and genetics is not mentioned
http://www.mskcc.org/mskcc/html/9984.cfm

And MDACCC weighs in:

http://www2.mdanderson.org/depts/oncolog/articles/04/10-oct/10-04-1.html

Here's some more info for you:

Genetic progression model for head and neck cancer: implications for field cancerization.

Califano J, van der Riet P, Westra W, Nawroz H, Clayman G, Piantadosi S, Corio R, Lee D, Greenberg B, Koch W, Sidransky D.

Department of Otolaryngology-Head and Neck Surgery, Johns Hopkins Hospital (this one's for you Gail), Baltimore, Maryland 21205-2195, USA.

A genetic progression model of head and neck squamous cell carcinoma has not yet been elucidated, and the genetic basis for "field cancerization" of the aerodigestive tract has also remained obscure. Eighty-seven lesions of the head and neck, including preinvasive lesions and benign lesions associated with carcinogen exposure, were tested using microsatellite analysis for allelic loss at 10 major chromosomal loci which have been defined previously. The spectrum of chromosomal loss progressively increased at each histopathological step from benign hyperplasia to dysplasia to carcinoma in situ to invasive cancer. Adjacent areas of tissue with different histopathological appearance shared common genetic changes, but the more histopathologically advanced areas exhibited additional genetic alterations. Abnormal mucosal cells surrounding preinvasive and microinvasive lesions shared common genetic alterations with those lesions and thus appear to arise from a single progenitor clone. Based on these findings, the local clinical phenomenon of field cancerization seems to involve the expansion and migration of clonally related preneoplastic cells.

If you can get through this article you will see that all cancer is related in some respects to genetics. For that matter so is all life. But when we talk of a genetic link to a particular cancer such as one that would transfer a specific disease from generation to generation oral cancer does not fit the bill. Genetic susceptibility to diseases, or to particular toxins (such as those found in tobacco) is something that we can explore through genetics. Some individuals have a genetic predisposition to certain protections or susceptibilities. But oral cancer is not, except in the most general terms as in all cancers, a genetically caused disease. It is lifestyle related in the largest sense, and viral related in a secondary sense.
http://www.oralcancerfoundation.org/facts/cancer_genetics.htm

According to one of our doctors (the senior author on that paper Gary cites) there are some oral cancers that are related to a (human) gene which suppresses the cellular repair mechanism. People with this genetic mutation are more suspectible to oral cancer, it is rather like the women who are pre-disposed to breast or ovarian cancer -- and is a small minority. Whether it is sufficent in and of itself to cause oral cancer, or just makes one more susceptible, I am not sure.

Most of the genetic changes leading to cancer arise from mutations at the cellular level which reduce the ability of the cell to repair itself, and are often preceded by inflammation. A Hopkins doctor studying prostate cancer, Bill Nelson, is elucidating the cascade of events starting with local infection and inflammation and leading to pre-cancerous changes (the "genetic progression model" the article refers to). Nelson has found that at some point in this progression the normal cell loses the ability to repair damage to its genetic material and also, its naturally programmed cell death.

The genetic changes found in oral canacer may come from exposure to carcinogens (e.g. smoking) or in many cases, viral infection. In the latter case the viral genome may be actually incorporated into that of the cell (although not always).

Gail

When Charlie was first diagnosed, we sat in the ENT waiting room and he said that Charlie probally would have developed it sooner or later, but becasue of his smoking it metastisized early- this he said was because it was genentic.
But truthfully- I DID NOT feel comfortable with this doctor. He was somewhat of a "hot shot", he called Charlie on his cell phone on a FRIDAY at 5pm to tell him that he has "really aggressive larnyx cancer" and he would give him an appointment the next tuesday at 10. I dont think either of us remember a moment of that weekend.

One question- I guess larynx cancer isnt oral cancer- it is head and neck. I really love this site- can i still post or is it not approprite because of the different cancers? They all require the some of the same treatment, PEG Tubes, pain meds, eating issues- I think that I can offer really good avice- I would still like to contribure and keep everyone posted. Im sorry.

Laryngeal cancer has the same risk factors and causes as oral cancers and is part of our family of diseases. More than 85% of all head and neck cancers are oral cancers. Thyroid cancer is an endocrine cancer caused differently and falls into different treatment protocols. You are welcome to be part of our family. We all have to stick together when it comes to this disease. Oral, head and neck, whatever you call it.... we are in the same boat for the most part.

Hi Delia,

There is nothing like a great project to looking for...especially a wedding. I am so happy for you and Charlie.

The emotional ups and downs are totally understandable and to a certain extend "healthy". I know it is not easy for the caregiver/soul mate/wife/husband simply because often we are now dealing with a "new" partner and as much as we want to help and support we seem not to have it right. It is a constant reajustment. Let your love lead you!!!

Regarding the f-up PET scan. I thought I would share this info with you as I just found it myself this week. I made a "field trip" to the school of medecine's library looking for info the PET scans and its efficacy etc.... I have found a journal article ( which I gave to our RT) in the Head and Neck Journal dated 2001 ( I know it is not the most updated one). It basically said that a PET scan should be done after RT and chemo in no less then 4 months. Again according to the article it seems that there is a high false positive rate within the first 1 to 3 month. My husband finished the Rt on 13th of April. We have discussed it with our RT and he will have it in September.

The last thing I want is to worry you but I thought it would be helpful to you as well as it is for us.

ciao Bella!

The trembling hands are very familiar. There are several chemo drugs that adversely effect the nerve endings in fingers, hands, toes, and feet - and more. This condition, called neuropathy is a general condition that identifies damage to nerves and nerve groups - inhibiting their ability both to function and to function smoothly together.

The trembling is nerves firing and stimulating muscles that are opposed to each other (loss of tone). My hands shook for nearly two years after treatment. The neurologists here believe there is little or nothing that can be done to restore tone but time. The nerve tissues, which grow very very slowly, will eventually regenerate and smooth function will be restored.

Consider finding a drug other than the Ativan for anxiety. Like all drugs of its type, it does develop both tolerance and some dependence. Anti-depressants can accomplish this anti-anxiety function and are NOT accompanied by the constant fatigue and sleeping. They also help with evening out the highs and lows. Good luck. Be strong, Tom

Hi Delia,
The dose of Ativan he's taking is really high and that may not be helping the situation. Many people experience stress anxiety which is better treated with a longer acting drug like zoloft. There are less side effects as Tom said and it's good for both anxiety and depression. Best of luck with the scan on the 2nd, I hope Charlie is feeling better soon.
Regards JoAnne

Thank you to everyone.
It is a really high dose- the RO prescribed it and he has been taking it for the past 4 months. 3mgs every 3hours. And how it is 3mgs every 5-6 hours because he was having withdraw symptoms. The medical oncologist didnt believe me when I told him the dosage and the time, he has to confirm with the RO and then came back and said "Charlie-how can you speak right now?"
There is so much to worry about- the results, coming off the many many many addictive meds, the new lifestyle, my very low paying job, if we can have children. Phew- I just needed to vent that out- thanks for everyone who listened!
Brian- Thank you for making me feel welcome and teaching me new things.
We are going to try welbutrin- it is good for the smoking sensation and depression.
Right now Charlie is getting his PET and CT scan done. Thank you for the good lucks and prayers.
But a wedding is fun- I cant wait to get the that church!