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In Remission

Many things have happened since my last post....... 1: Several weeks ago I found an over the counter product for cold sores called Anbesol that I started putting on the side of my very sore tongue. The anesthetic in the Anbesol would numb my tongue long enough to eat (or drink a bottle of ensure). It also helped me to talk better since it no longer hurt to move my tongue. Was very tired of trying to talk without moving my tongue. Anyway I believe it also helped my tongue heal because it began getting better almost immediately. A better feeling tongue led me to 2 below. 2: Sent an email to my Oncologist asking if I could remove my feeding tube. He agreed so my feeding tube and chemo port are now gone. Although left with a gun shot looking wound in my gut it is very awesome to be rid of that extra six inches dangling from my belly. I hated that thing more than my daughters 1st boyfriend. Because my throat was restricted and so dry from not being able to drink for several hours before surgery the Dr told me they did a "fair amount of damage" to my throat putting in and removing the breathing tube. For several days afterward my voice was back to a whisper and I was back to a 100% liquid diet but the healing was quick. 3: Had a PT Scan done last week and after many sleepless nights hoping for the best but mentally preparing for the worst the Dr. told me my cancer was "in remission". I guess that makes me NED. He doesn't wanna see me again for 3 months. I found it strange that he didn't think I would need any more PT scans but that I should let them or my ENT know how I was feeling in order to determine if I needed another PT scan. Can I get some opinions on this. I would be much more comfortable with at least one a year......right? Anyway happy to be where I am and looking forward to a good nights rest.
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My ENT saw me once a month for a year and did a second PT scan. Now after 1 year and 2 scans - I see him 1 time every 3 months....his numbers were that this cancer - if coming back - is 85% in the first year that is why the monthly visits....Don't hesitate to ask....you deserve every possible mind easing answer.
I saw a doc every month for the first year. My ENT and rad onc rotated (every other month). Scope with each visit to ENT. Medical onc every six months. After first year every 2-3 months. CT's every three months until clear scan then every six for a couple. PET three months and one year post treatment. What a relief to get rid of the PEG. Relied on it for life but felt so good to be with out it. Just an FYI- I'm 10 months out and can now eat a filet mignon medium rare bacon wrapped 5 ounces. I missed steak the most. My throat gets tired but I make it though. It's gotta be medium rare-anymore done and I can't get it down. Glad you are doing well. Angie
Hi James, This is wonderful news! I am seeing my ENT every 6 - 8 weeks for follow up:) He doesn't do very many PET's. I am going to have the 3 mos PET on 8/23. Glad your throat has healed after the breathing tube incident! Hugs, Karen
glad to hear youre makin progress! i wuz gettin nervous and worried for a while..but if your on the upswing i'll put you on the looking good list..God bless..Glenn
Great news. No more feeling tube!! and remission!! My feeding tube also left a shotgun wound or larger 2nd belly button! I had PET scans every three months for 3 scans, then a CT scan. Then they went to 6 months which is next month. I don't know when the next will be. I see one of my doctors every 3 months.
PS - I am going to try the ambisol!!
Great news James glad to hear that. You may want to ask though if remission means they didn't see anything or the cancer is just reduced to microscopic size. My mother was told she was in remission with her lung cancer and she thought it meant her tumor was gone. later found out that it meant the tumor reduced in size from a 4 to a 1. She will continue to take an oral chemo probably for the rest of her life. I was told that my PET came back negative for cancer and they also said that nothing was visible in my scan. Great feeling getting the tube removed huh. It only gets better from there. You continue to be in our prayers. Take care and congrats. May you be in remission for life.
i have been told the same thing about my pet scans...i have had 3 and my oncologist says i really don't need to have and more radiation stuff in me...he said because of where my cancer was(tonsil primary) that i woulld know if i had a recurrence before they would
Awesome news! I had mine done and had the same result. My doctor indicated that the result of the first one usually dictates the results of the next ones (although not always true). He said that the first one meant a lot. God Bless
Glad to hear you got rid of the tube! I hated that more than anything. PET Scans, I had one and will likely never have another. My radiologist explained that when a PET scan lights up, they immediately order a CT scan. So at my cancer center, they just do CT scans to check for disease. If you are going to have a recurrence of the disease its gonna happen in the head/neck region and the CT scan will pick it up. Also, PET scans will likely miss any tumor smaller than 1 cm. That being said I will have CT scans every 3-6 months until I'm in the clear. I am still praying for you, James! Take care and congratulations on the NED! Scottie
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Vital Info

Posts

February 24, 2012

Skiatook, Oklahoma 74070

October 27, 1964

Cancer Fighter

Cancer Info

Tonsil Cancer

February 22, 2012

Stage 3

Yes

Oklahoma Oncology

May 10, 2012

Swollen lymph node beside that I feel great.

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