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New, Need Answers, Afraid

Carolinagal's picture
Carolinagal
Posts: 90
Joined: May 2010

Hi everyone and thank you for all of your help. I've been lurking here for about two months and the info. you all provide is so great. We've been going through this pretty much on our own and I'm at a loss at how to handle it all. Any advice would be so appreciated. My dad was diagosed in Oct. 2009 with squamous cell carcinoma of the maxillary sinus. In Dec. he had surgery to remove the tumor (7 cm) and lymph nodes were removed from his neck. They reconstructed his face- cheekbone and palate by doing a fibula free flap. The surgery took 15 hours. The margins were negative and the lymph nodes were cancer free. He was in the hospital(MUSC) 11 days. Origionally, he was supposed to have radiation for 6 weeks but due to several interuptions due to infection they added a few more treatments. My dad did really well throughout the radiation until the infection. He is the strong quiet type so it has always been difficult to know how he really feels. He finished radiation April 9th and has gone downhill since. He has a lot of pain in his head and he is most comfortable laying down. His ENT saw him 3 times last week. He put a tube in his ear to help with the fluid. He is on a round of antibiotics for yet another infection. We went back to MUSC yesterday and were told that the CT scan shows a growth the size of a grape. They said it is either and abscess or cancer. If it is an abscess it will swell up, burst and go away. If it is cancer, it won't go away. He said the pain is because of his parotid (saliva) gland. ( My dad has gone from 276 lbs. to 196 lbs.,he's 6 ft) The doctor said the infections normally cause it to die, they don't know why it hasn't. The ENT mentioned removing it but the Dr. yesterday said they hope they don't have to. He also implied that no one would want to mess with the "abscess". Really, we went for hope and left deflated. We've gone from one step forward and two back to what feels like back to the beginning. I'm so afraid, I don't know how much more he can stand. I apologize for the length of this post but thank you for your time and any encouragement and or knowledge you can share with me.

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hello Carolinagal, I'm sorry your dad has sufferered a series of setbacks due, for the most part, from infections. From what you've said, it sounds like you will have to do what is hardest for a bit longer, that is, wait. Until the mass, or abcess, is identified, until the infection cycle is under control, until the parotid has stabilized, it sounds like the doctors are afraid to commit, or commence. Just hang in a bit longer and all of us here will be hoping or praying that a turn for the better will allow a better diagnosis and treatment as soon as possible. My hopes, and prayers, for your father, you, and your family.

Hal

Carolinagal's picture
Carolinagal
Posts: 90
Joined: May 2010

Hal,
You are so right about the waiting, it is hard. I can't stand seeing my dad suffer. Thank you so much for your thoughts,prayers and kind words.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi C'Girl,

Sorry to hear of your Dads situation. While the Doctors may disagree, the radiation has probably weakened his immunity. He most likely had a compromised immune system to start with as well. What is happening now is that his body is struggling to fight off infections in his weakened state. The only advice I can offer is to try to to get nutrition and immune building supplements into him and to start ASAP.

He has been through a heck of a time with the surgery and radiation so just recovering from that will take a lot. You may want to seek alternative advice to find the best combinations of supplements and diet to get him on. I received IM shots of Vitamin C and B Complex for 7 days straight, then a week off, then 7 more days. There is also Zinc & Magnesium, and L Glutamine for healing and recovery.

I am not sure if he is eating or being fed via tube (PEG) but also coenzymes (CoQ10) for the gut to assist in getting every bit of nutrition he can get. I used a high nutrition shake by Sunrider*TM called Vitashake. All these things will help but he is obviously quite ill so as I said, you may need to seek further advice and also ensure none of such supplements interfere with his ongoing treatment. Please note, much of my view may be against 'conventional wisdom' (your doctors), so you have to decide if you view this path as valid. Personally I have no doubt whatsoever.

Keep us posted.

Wishing you & your dad well.
Scambuster

Carolinagal's picture
Carolinagal
Posts: 90
Joined: May 2010

Scambuster,

Thank you for sharing. You are absolutely right about nutrition. My dad does not have a PEG. He tries to drink 4 Ensures a day. My mom tries to make soft, moist food for him but he just doesn't feel like eating. He has no teeth, the flap takes up a lot of space in his mouth, and he is in pain. The parotid gland causes pain when he even thinks about food. The ENT said he needs to be well hydrated so he tries to drink more, mostly tea and water.
My parents are only 59 years old. For the past 20 years or so eating out has been their source of fun. Now food is more like a chore. The doctors are aware of his weight loss and have not suggested a PEG. Thanks for your advice- I'll share it with my mom. We are clueless about alternatives. Who am I kidding, we are pretty clueless about the standard. We are grateful for your help.

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