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paularae's Message Board Messages

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Your thoughts on SSD

by paularae - November 29, 2018

I am a nine year survivor of NPC. I have been on SSD but now they feel I am phyically and emotionally able to work. I have no saliva and talking, eating and normal living is problematic. I have had late side effects of trismus in my neck and arthritis to top it off. I have had infections in my face due to adcesses. I would like to know your thoughts and if anyone has a suggestion on what kind of work I could do with my modalities. I will lose my medical insurance and that is what scares me the most. Thank you all for letting me rant. Any suggestions are welcome.

Paula

What type of radiation is he having? I was told proton radiation is more precise and could help not kill good cells. This may help with the side effects. I had IMRT. I had it once a day for five weeks. 

Paula

It is a prescription lotion. I used it every day and I had more than i could use. The radiation nurses gave me lotions that did not help and even caused me irritation. I was told by my freind who was a nurse to get silvadine lotion. Once I started to use it, my neck healed very quickly.

Paula

I used silvadine lotion. It is used for burn patients. Has it been recommened that he get a peg tube inserted? I had this put in before my raditation and it saved my life because my throat was too sore to eat. I have heard others have drinked aloe vera juice. It is good to keep swollowing to keep those muscles working. I also got home health care who got my liquid nutrition and a food pump covered by insurance. A nutritionist may be able to help with that also.

I am a seven year survivor of NPC. I have had the normal dry mouth from the beginning, but this year, I have peripheral neuropathy in my fingers and toes. My neck muscles are now tightening up and causing me dizziness. I had chemo and radiation. I have asked the doctors if this is late stage side effects. They have said that it is to long from my treatment, but hearing everyone, it has to be from my treatment. So far my speach and swollowing are fine, but I have to drink down foods.  I keep telling myself that I should be happy to be alive.

Paula

RE: Nasopharyngeal cancer

by paularae - March 04, 2016

Please let me know what you decide. My only hope is a gene therapy clinacle trial for one parotid gland. My quality of life is bad. It effects talking, breathing hard, eating, and lack of taste. I used to be an active person. Now if I do anything, I end up with a very soar throat. I would see if your friend is a candiadte for the salivary gland procedure. It will save their quality of life.

Paula

RE: Nasopharyngeal cancer

by paularae - February 26, 2016

 The phone number to GBMC Head and Neck Center is 443-849-8940. This is the only place that does the salivary gland transfer to get out of the radiation rays.

Paula

RE: Nasopharyngeal cancer

by paularae - February 26, 2016

I am am six year survivor of NPC. I would goo to Baltimore MD. for treatment. They do salivary gland transfer so you don't end up with dry mouth. I am on another cancer website called Inspire. I can get the phone number there. Life without saliva is not a picnic. If I had known this, I would have gone there. I will post again once I have that phone number.

Paula

I am a six year survivor of nasopharygeal carcinoma. I had 3 cisplatin chemos three weeks apart and then 39 radiation treatment. I would get chemo on the Monday of each week of radiation. I had to have the peg tub, but was able to get it out a few months after treatment. I suffer from severe dry mouth. This is my worst side effect. I also have TMJ problems. I continue to have dental checkups and dental work. I am to be part of a clinicle trial for gene therapy for one parotid salivary gland. This is to be this February or March. If you have any question please ask.

Paula

I started losing my hair after m6 second chemo. I decided that I did not want to have it come out in clumps in the drain. I has my head shaved. Go to the Look Good Feel Good from the American cancer society. They will give you some money for a wig. I would use a small cotton cap under the wig. Also, get a cap when you sleep. Your head gets cold with no hair. The good thing is that it comes back. I liked when I did not have to shave my legs. Hang in there.

Paula

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About paularae

Survivor
Head and Neck Cancer
Acupuncture, After Treatment, Alternative Treatments, Clinical Trials and Research, Recipes, Emotional Support, Lifestyle

I am a five year survivor of Nasophayngeal carcinoma stage 3. I still suffer from dry mouth and talking,eating and physical work cause me great discomfort. My jaw and jaw joint have been affected, so that opening my mouth causes pain. The skin on my chin and neck is burnt with scar tissue. I am looking for answers on alternative treatments for dry mouth, and or clinical trials.

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