Dinah, you know better than to ask me that!! Anything that helps our members is OK with me... especially from you. My personal experience with person to person groups of support teams were that they varied in value wildly depending on who was running the meeting that night and who showed up. Some were really helpful, and some were a waste of my time. This was true no matter what organization was running them. Hence OCF opted for the message board. Some seemed to be commercials for products or the organization itself, and some wanted donations for the organization in order to participate. If you find a great leader and a good group they can really ease the anxiety.

Yes, Brian you are right I should know better. I was trying to remember (sometimes the elevator doesn't go all the way to the top floor) what was the overall thoughts on links.

Obviously I didn't remember right or I wouldn't have asked. As usual you put the needs of the board first.


Dinah

Bobbie,
Fortunately or unfortunately we head and neck cancer folks are a small group compared to, say, prostate or breast cancer and it is hard to find support groups. A local guy in my town tried to run a SPHONC support group but gave it up due to lack of interest. I had to settle for a men's only group that had mostly issues that were quite different from mine. The best support that I was able to find was right here.

Regarding swallowing. Not only could I not swallow for months, I also wore a pain patch 24/7 for months. If your throat is hurting too much you should definitely contact your doctor and see about pain management either through a skin patch or by shooting liquid or dissolved hydrocodone through your feeding tube. I know of no medication to stop the mucous, but in time it goes away. I had a Yankauer suction machine that I kept by the easy chair and bed at night and it was an improvement over just using tissue.
Hang in there, things will get better.

Danny G.

Hi everyone out there!

I think I am finally beginning to see the light at the end of the tunnel!! I am really feeling better than a few days ago. Yesterday I was rinsing my throat out and when I was done it felt as tho the soreness didn't go quite as far down as before. Maybe it is healing from the bottom up??

I have been told there is a support group for throat cancer in Arlington at Arlington Cancer Center. I haven't called yet as the Holidays are coming and I won't be able to do anything til after. Sure hope I can eat Turkey and dressing!!! I have also been able to tolerate a few more foods. Had some fried squash the other night.

Thanks again for your help.

Bobbie

Hi, Bobbie. I'm new here, but I saw your post and wanted to suggest something that might help your dry mouth problem if you are still having trouble. My husband had 33 radiation treatments to his right neck/jaw a year ago for a squamous cell carcinoma in his mouth, and he suffered terrible side-effects of the radiation--dry mouth, sores, thrush, even bland foods burned his mouth. Finally, after we discovered the cancer was back, a new doc told my husband it was very important to get his pain and discomfort under control before starting treatments (chemo) and preparing for surgery to remove hard palate and tonsil cancer. He gave my husband a saltwater spray called Salivart. It is better than those Salagen pills which merely gave him hot sweats. You can ask your pharmacist to order it or I can send you the website if you want to order it yourself. You just squirt it in your mouth any time you need to and you feel instant relief. It's about 12 dollars a can but it lasts a while and is a handy size.

And since my husband still had some lingering oral thrush from radiation several months previous (we did not realize that he could have a yeast infection for so long after radiation was over!), he gave him a "Stomotitis coctail" made of Nistatin, Lydocaine, and Maalox (he had to have a prescription for this one). Before the doctor gave my husband these things, even simple things like talking or sipping a vanilla milkshake burned his mouth. Although he still cannot eat spicy foods, he is not constantly aware of mouth pain either.