Hello everyone,

I am writing this post on behalf of my father. I heard of this website through a friend, and after reading some of the forums, I admire everyone's positiveness and willingness to help each other through these tough times that everyone is experiencing. I am writing this to see if any one can assist me with comforting my father during this extremely difficult time.

To give everyone some background of my father's condition, my father was first diagnosed with Squamous Cell Carcinoma in November of 2014, which was originally discovered in his tongue. After becoming informed of my father's diagnosis, he underwent surgery January 22, 2015.

The surgery consisted of removing approximately one-third of his tongue, the majority coming from the left side of his tongue. Then, the surgeon removed arteries in his wrist to reconstruct his tongue, followed by taking a skin graph from his thigh to reconstruct his wrist. Also, he had all of the lymph nodes on the left side of his neck removed as well.

After this surgery, my father's doctors recommended that he complete a 6 week session of radiation, directed at the area of his tongue where the cancer was removed. The doctors decided against doing chemotherapy after this first surgery.

Within a month's time after my father finished his six weeks of radiation, a lump erected near his lymph nodes on the right side of his neck. The lump was unfortunately determined to be squamous cell carcinoma again.

As a result of this news, my father underwent a second surgery on September 18th, 2015. This surgery consisted of removing all of my father's lymph nodes on the right side of his neck, where the cancer was located. While the doctors were operating, they also noticed that the cancer was also in the his right jaw. The doctor's removed all the cancer that they could see, and at the conclusion of this surgery, he was deemed to be cancer free.

The doctors informed us that we could expect that his cancer would return due to its aggressive nature. Thus, after this second surgery, my father underwent another 6 weeks of radiation treatment. In addition, my father had a 6 week session of chemotherapy. During those six weeks, which concluded the first week of December of 2015, my father's cancer had not returned.

However, another lump popped up around the third week of December of 2015. The doctors did a biopsy and concluded that the cancer returned again. By the first or second week of January of 2016, the lump grew approximately to the size of a golf ball. The doctors have informed us that surgery cannot be performed due to all of the previous treatment my father underwent. My father also has been using a feeding tube to eat for the last four to five months due to the horrible pain he experiences in his tongue and jaw on a daily basis. Also, my father currently coughs continuously and also vomits from time to time due to him swallowing flem build up in his mouth.

At this moment in time, my father has a total of 5 lumps around the area of his head, neck, and chest. These lumps get bigger as every day passes. Also, they continue to drain this substance that omits a strong odor. My father starts "opdivo," which is a type of chemotherapy that has recently been approved by the FDA to assist patients with cancers such as my fathers.

I am reaching out to everyone on this forum because I was curious as to whether any one has any general knowledge of the type of situation my father finds himself in.

Some questions I have include:
1.) Are there any other treatment options available?
2.) Did anyone ever deal with squamous cell carcinoma tumors that are on the outside of the skin, those of which continuously drain a odd substance?
3.) Does anyone know of how to reduce the generation of flem in one's mouth?
4.) Has anyone ever heard of situation like my fathers?

There are so many other questions that I would like to ask but I am reaching out because I want to do everything in my power to become fully informed of any and all courses of action I can pursue to assist my father. My father's health declines daily and I feel helpless at this moment in time.

If any one has any advice for me with respect to anything concerning my father's condition please let me know. I am desperate son trying to do anything I possibly can to assist my father during this rough time.

Thank you to every one ahead of time for considering my father's situation. I greatly appreciate it.

Welcome to OCF. Im so sorry to read everything your father has been thru in such a short amount of time.

Im wondering if your father has been treated at a Comprehensive Cancer Center (CCC)? What about if he has gone for a second opinion? If not then I would advise you to make appointments ASAP at one of the countrys top CCCs. Those facilities have a team based approach which means all the specialists work together as a team on each case (patient).

Ive seen individuals who have been thru round after round of this. Some have battled their illness for over 5 years. Every time they eliminated the cancer, it returned each time with a renewed vengeance.

In response to your questions.....

#1) Unfortunately the only treatments to eliminate this type of cancer are surgery and radiation with or without chemo. Alone chemo can only shrink the tumors but not eliminate them entirely. There may be some trials going on that would help your father. Ive seen a couple patients post about this on here.


#2) Ive heard of this happening before but cant remember much about it. Im sorry I have the worlds worst memory sometimes.

#3) Ask for the nurses to use a suction machine on your father. The doctor can also write a prescription for a portable suction machine so your father can use this at home. Rinsing his mouth at least 4 times daily with a mixture of 16 oz warm water, 1 tsp baking soda and 1 tsp salt might help with the phlegm. A water pik used on its lowest setting can also help get rid of the gunk.

#4) As mentioned above, I have seen a few patients in similar situations. Its unusual which is why its so important to be treated at a CCC.

I want you to know you are not alone with this. Our family here understands how terrible oral cancer can be and how difficult the treatments and recover are.

Wishing you, your father and family all the very best with everything.

Welcome to the group though I am sorry you have to join our circle of friends,

I second Christine's suggestion to get a second opinion at a comprehensive cancer center where the doctors have seen many different cases of cancer and where they use a team approach to treatment.

Do you know how much radiation you father has had -- 12 weeks in all sounds like an awful lot. Opdivo is a new drug and it is a kind of immunotherapy where they try to marshall the body's immune system to fight the cancer. We have a couple of members who are on it/or it has been suggested to them. You can find their posts under the recurrence thread.

Ask your father to carry a spit cup. My husband had one for months and carried it with him everywhere. It was just a disposable plastic cup. Being able to spit helped to keep the amount of phlegm in his mouth to a minimum. The waterpik is very effective for cleaning out dried phlegm and keeping the mouth fresh. If you dad has the magic mouthwash, adding a capful of that to the water helps too. Use the tongue scraper attachment on the lowest setting.