Hello everyone. My name is shawna and my dad has just been diagnosed recently with stage 4 throat cancer. It is in his lymph nodes as well. He is a vet and has been going to the VA hospital here in Washington state for 3.5 years complaining of swollen lymph node and they brushed him off 4 times!!!! Finally it was discovered when he went to the ER sick. I am so angry. He is not a smoker ever....but he was exposed to agent orange in vietnam. He has no insurance and is on limited disability, so we feel like our only option is to get his cancer care through the VA :*( I feel like they are terrible and I would give anything for him to be able to get good care somewhere else! Does anyone know of any programs or trials?? The VA told him that he will start treatment in october. They said it will be 6 weeks of chemo and radiation.

They said he would only have up to 5 years even with the treatment?! They told him he needs to choose his treatment which is crazy because my dad is 68 and doesnt even know anything about cancer....he doesnt even know how to turn on a computer let alone use it. They said he needs to choose between cetuximab and cisplatin. They didn't tell him anything except that cisplatin will make him sicker and he will need someone with him. I have 2 kids so I cant be with him (its a 5 hour drive to where they are sending him) but we want him to get whats going to work best regaurdless! cetuximab or cisplatin??!! I tried googling but I am not finding much on the cetuximab. Can anyone help??? Offer insight and such??? Also, they told him 6 weeks of treatment.....and didn't mention any other treatments with him. Is 6 weeks it???! I am so lost, as is he. If anyone can help us it would be such a blessing and VERY much appreciated by us both! God Bless!

Try searching with the word Erbitux. I finished my treatments 8 weeks ago and had Radiation and Chemo with Erbitux. Erbitux is in a final trial and has less side effects than Cisplatin. Typical is a rash on face and chest much like teenage acne. It is worst at week 2 and 3 and then eases after with topical a moisturizing. They do give you Benedryl with each treatment to reduce reaction to the drug.First treatment they include a steroid.The six week treatments will be radiation daily twice one day each week. Chemo is 3 times with Cisplatin and 8 times with Erbitux. One time the week before radiation and one time the after and once a week during the 6 weeks of radiation. Sorry to hear about your father but you have found a great support group. Concentration a year on preparation right now. Your father will need his strength and some extra weight through good nutrition. You will get more ad v ice from others.

Tell them he wants a combination of cisplatin and Erbitux along with radiation. Hugs.

I had a friend that had the same problem you are running into at the VA in Miami. They just do not seem to have any sense of urgency to get people into treatment. It is a tragedy in my opinion because time is important. That tumor can grow 3 or 4 times the size it is now in 5 weeks. I would push them for starting treatment earlier. Erbitux is a relatively new drug but has been pretty effective. You will have to be his eyes and ears and do the research for him. There is a lot out there on the web. Cisplatin I have had and will cause lots of nausea and vomiting but if it helps it is worth it. Try eating potatoes when you can't keep anything down. That is the only thing I could keep down when undergoing that treatment. Best of luck. Keeping you and your father in my prayers.

I don't know why the doctor said he will only have up to 5 years? If they are going by statistics, yes, it's less than 50% 5 year survival rate with smoking related oropharyngeal and oral cancer, but is 85% with HPV positive cancer. Statistics are not crystal balls, and there are many other factors involved, like the size, thickness, depth of the tumor, the numbet of lymph nodes involved, ipsilateral or bi-lateral, their size, other negative factors like extracapsular spread or extension, perineural or lymphovascular invasion, distant metastases, a persons age, health, other comorbitities.

Chemoradiation is common with oropharyngeal cancer as organ preservation instead of surgery. You may want to find out if its HPV related, which has good prognosis, and 90% of orpharynx cancer is HPV related, and rarely occurs in the oral mouth, but basically is the same treatment, except for some clinical trials.

I had Cisplatin with a combination of two other chemo's, and then another time Erbitux with Taxotere. Erbitux was easier, but not without toxicities, and the trial with Erbitux vs Cisplatin is not completed yet to determine which has better outcome.

Good luck.

I understand how difficult this is being thrown into the mix not having any info. Luckily you have found this site. We have correct, up to date medical info and moral support as well. We will help get you and your father thru this! Educate yourself, read the main forum pages and learn about this horrible disease. An informed patient and caregiver are the best advocates for the patient. You can even print out pages to give to your father to read. Of course, come back to the forum frequently for questions and support.

The doctor was not able to read your fathers expiration date and place it to be prior to 5 years. That is just not logical medical practicing. Of course I am NOT a doctor or medical professional and I do not have your father or his full medical chart in front of me, but it makes no sense to me.

I suggest attempting to call some of the countrys top cancer centers and explain the situation. Some places will take on charity cases, so wont but you need to call to ask. I always say if you dont ask, you dont get.

Radiation will kill the cancerous cells, chemo helps to make the radiation work better. Ask for the smaller weekly doses, its easier for patient to tolerate with less of the major side effects.

Best wishes!