Tonsil Cancer - 4 months post treatment
I am finally hopeful and confident about my future, along the way though I can say that it was an emotional and mentally draining time. With all things time heals, it heals the physical scars and emotional scars. It is good to wake up and my stomach doesn't turn with anxiety, and I have goals and plans once again. I am so thankful to have found this forum to just put words down on a screen and know that one of you reading them, knows EXACTLY what I am feeling. Very comforting.
Comments
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Welcome Aboard
Hi Pascotty,
Glad you found your way to our group. And it is a great group. I'm very similar to you. 4 1/2 months post treatment of right tonsil SCC. Rad neck dissection and tonsillectomy followed by 35 rad with 3 Cisplatin (only made it thru 2 Cisplatin due to hearing loss). Sounds like you're doing well and on the way to recovery but keep posting. We have some sad days, some celebration days and even some humor sometimes. It's a great site with the best people!
Let me take a guess and say you're from "down under"? Calling Scam.
Positive thougths coming at ya!
Greg0 -
Welcome Aboard
Similar to you and Greg in diagnosis and treatment.
Right tonsil, one lymph node, STG III, SCC HPV+. Nine weeks of chemo in three week cycles (Cisplatin, Taxotere, and 5FU via a pump for four days each cycle). That followed with seven weekly doses of Carboplatin, and 35 daily rads.
I am 14 months out of treatment, and have regained around 75 - 80% of taste and salivary function.
Most of the things that originally faded after the first bite now stay flavorful, exception is similarly, being sweets.
I do know EXACTLY what you are feeling and have gone through.
Best,
John0 -
Glad you found us
Hi Pascotty, welcome! Change gender, age, and location, and your story is pretty much my story. I'm closing on five months out of 3 rads, 3 cisplatin treatments. I still rely more on my gastic tube than some others. My taste has come back a lot, but eating is still much more of a chore than a pleasure. Like you I have tinnitus, and some permanent hearing loss. I still can't taste Vegemite, but that's only because I've never had any to taste--I've heard it though. I'm in central California--not the glamorous part--and here we eat grapes. Keep posting and keep getting better.
Hal0 -
Just wanted to say HI!Hal61 said:Glad you found us
Hi Pascotty, welcome! Change gender, age, and location, and your story is pretty much my story. I'm closing on five months out of 3 rads, 3 cisplatin treatments. I still rely more on my gastic tube than some others. My taste has come back a lot, but eating is still much more of a chore than a pleasure. Like you I have tinnitus, and some permanent hearing loss. I still can't taste Vegemite, but that's only because I've never had any to taste--I've heard it though. I'm in central California--not the glamorous part--and here we eat grapes. Keep posting and keep getting better.
Hal
Hi, Sorry you had to join our ever growing fraternity; but glad you found us. I am 2 months post treatment with similar diagnosis and treatment. I know how you feel it was definitely a mental roller coaster for me; Yes, I still have bad days; but everyday I get stronger both physically and mentally and I know that I still have a lot of life left in me. The future looks brighter everyday; yes it's different but still a future.
Charles0 -
Oy !
Welcome Pascotty.
Glad to hear you are doing well and on the road to getting your life back on track.
Curious as to where you had yr treatment. Did you have any surgery first ?? Were they good ??
I had similar Dx SCC left tonsil W/ surgery first IMRT + Erbitux now almost 11 months out and doing fine. Still short on Saliva but Acupuncture has helped.
Good to have you here and yr welcome to help & support any newcomers along their journey.
Regds
Scambuster (NSW but PR or China)0 -
Welcome Pascotty!Scambuster said:Oy !
Welcome Pascotty.
Glad to hear you are doing well and on the road to getting your life back on track.
Curious as to where you had yr treatment. Did you have any surgery first ?? Were they good ??
I had similar Dx SCC left tonsil W/ surgery first IMRT + Erbitux now almost 11 months out and doing fine. Still short on Saliva but Acupuncture has helped.
Good to have you here and yr welcome to help & support any newcomers along their journey.
Regds
Scambuster (NSW but PR or China)
You are looking at a picture of my partner, Mark. He is 5 weeks post treatment for SCC left tonsil: tonsilectomy+, radical neck dissection, 30 rads, 1 cisplatin, 4 carboplatin-taxol.
He is regaining taste and has thick saliva. Scope yesterdays says he is doing just fine.
He too is doing future planning and rejoining life.
It is great to have you on these boards. Everybody's story has information to help and/or ecourage others.
Stay with us for a while and become part of the family.
Kim0 -
WelcomeKimba1505 said:Welcome Pascotty!
You are looking at a picture of my partner, Mark. He is 5 weeks post treatment for SCC left tonsil: tonsilectomy+, radical neck dissection, 30 rads, 1 cisplatin, 4 carboplatin-taxol.
He is regaining taste and has thick saliva. Scope yesterdays says he is doing just fine.
He too is doing future planning and rejoining life.
It is great to have you on these boards. Everybody's story has information to help and/or ecourage others.
Stay with us for a while and become part of the family.
Kim
13 years post treatment....welcome0 -
Sorry you had to join our club
Welcome Pascotty, I'm sorry you have reason to join our club because of the membership requirements but it is a wonderful site for caregivers and survivors. There are many members here who have been through the same or similar treatment that you have and can help you with any post treatment questions or if you just need to vent.
I don't have tonsil cancer, I have NSCLC in left lung and SCC laryngeal (T3N0M0)but had the same treatment - cisplatin and 35 radiation.
It's wonderful to read that you now have goals and plans again and it sounds like you have a great attitude.
Again, welcome aboard,
Glenna0 -
GoodGlenna M said:Sorry you had to join our club
Welcome Pascotty, I'm sorry you have reason to join our club because of the membership requirements but it is a wonderful site for caregivers and survivors. There are many members here who have been through the same or similar treatment that you have and can help you with any post treatment questions or if you just need to vent.
I don't have tonsil cancer, I have NSCLC in left lung and SCC laryngeal (T3N0M0)but had the same treatment - cisplatin and 35 radiation.
It's wonderful to read that you now have goals and plans again and it sounds like you have a great attitude.
Again, welcome aboard,
Glenna
Hi Pascoty,
You are right this a great place with alot of great people to help you if you need it. I was also SCC Right tonsil and I am 4 1/2 months out. Check in with us if you need anything.
Best,
Steve0 -
Yes Down UnderGreg53 said:Welcome Aboard
Hi Pascotty,
Glad you found your way to our group. And it is a great group. I'm very similar to you. 4 1/2 months post treatment of right tonsil SCC. Rad neck dissection and tonsillectomy followed by 35 rad with 3 Cisplatin (only made it thru 2 Cisplatin due to hearing loss). Sounds like you're doing well and on the way to recovery but keep posting. We have some sad days, some celebration days and even some humor sometimes. It's a great site with the best people!
Let me take a guess and say you're from "down under"? Calling Scam.
Positive thougths coming at ya!
Greg
Hi Greg, yes I am from Down Under, Western Australia, Thanks for the reply, so nice to know someone out there knows what you're going through. I'll keep posting.
Cheers Jen0 -
GratefulSkiffin16 said:Welcome Aboard
Similar to you and Greg in diagnosis and treatment.
Right tonsil, one lymph node, STG III, SCC HPV+. Nine weeks of chemo in three week cycles (Cisplatin, Taxotere, and 5FU via a pump for four days each cycle). That followed with seven weekly doses of Carboplatin, and 35 daily rads.
I am 14 months out of treatment, and have regained around 75 - 80% of taste and salivary function.
Most of the things that originally faded after the first bite now stay flavorful, exception is similarly, being sweets.
I do know EXACTLY what you are feeling and have gone through.
Best,
John
Hi John, this is starting sound like an epidemic. Before diagnosis I didn't even know such a thing existed. We're you a smoker, I am interested only because, I have met 3 ladies around my age in Western Australia that have the same thing and have never smoked. They don't test here for HPV but my radiologist said he is 98% sure that is what I had. It seems most people have proved positive, but, becuase they don't test you never know. ANyway will keep posting Cheers Jen0 -
Oy back at yaScambuster said:Oy !
Welcome Pascotty.
Glad to hear you are doing well and on the road to getting your life back on track.
Curious as to where you had yr treatment. Did you have any surgery first ?? Were they good ??
I had similar Dx SCC left tonsil W/ surgery first IMRT + Erbitux now almost 11 months out and doing fine. Still short on Saliva but Acupuncture has helped.
Good to have you here and yr welcome to help & support any newcomers along their journey.
Regds
Scambuster (NSW but PR or China)
Hi Scambuster, I had my treatment at Royal Perth Hopsital, I live in Bunbury 2 hours south of Perth WA, so there was a lot of travel, the only surgery I had was to remove my tonsils, and 9 back teeth. I deferred my treatment for 1 month after original start date, as I wanted to understand what was actually wrong with me. I did a juice detox and went under the guidance of a Naturopath (who was always for me having orthodox treatment, which I am grateful, because I didn't want to have it) So I got my body as healthy as I could before I started and my radiologist believes this is why my recovery has been so great. I didn't get a sore throat at all, but, obviously lost my saliva glands and taste buds. Tastebuds are virtually normal except for the impact saliva has at helping food taste REALLY good.
Will keep posting and am really enjoying this site.
Cheers Jen0 -
Hey thereGlenna M said:Sorry you had to join our club
Welcome Pascotty, I'm sorry you have reason to join our club because of the membership requirements but it is a wonderful site for caregivers and survivors. There are many members here who have been through the same or similar treatment that you have and can help you with any post treatment questions or if you just need to vent.
I don't have tonsil cancer, I have NSCLC in left lung and SCC laryngeal (T3N0M0)but had the same treatment - cisplatin and 35 radiation.
It's wonderful to read that you now have goals and plans again and it sounds like you have a great attitude.
Again, welcome aboard,
Glenna
Hi Glenna, thank you for posting a comment, it is really comforting to know that someone you don't even know would take the time to say hello, I wish you all the best for your treatment and I find you a total inspiration. Love and happiness to you always Cheers Jen0 -
Hey Therestevenl said:Good
Hi Pascoty,
You are right this a great place with alot of great people to help you if you need it. I was also SCC Right tonsil and I am 4 1/2 months out. Check in with us if you need anything.
Best,
Steve
Thanks for posting a comment Steve, It's a pooh disease and the treatment seems so brutal, but, I have managed to find this sort of happy place and it is amazing how time heals. Good luck and I will keep posting Cheers Jen from Down Under0 -
Hey ThereHal61 said:Glad you found us
Hi Pascotty, welcome! Change gender, age, and location, and your story is pretty much my story. I'm closing on five months out of 3 rads, 3 cisplatin treatments. I still rely more on my gastic tube than some others. My taste has come back a lot, but eating is still much more of a chore than a pleasure. Like you I have tinnitus, and some permanent hearing loss. I still can't taste Vegemite, but that's only because I've never had any to taste--I've heard it though. I'm in central California--not the glamorous part--and here we eat grapes. Keep posting and keep getting better.
Hal
Hi Hal, you don't know what you are missing out on, Vegemite is awesome, it's like salty thick black tar, I know that doesn't sound great, but, it's adictive and yuuuuummmmmy. I could send you some to try if you like. Thanks for posting Cheers Jen0 -
Hey ThereIrishgypsie said:Just wanted to say HI!
Hi, Sorry you had to join our ever growing fraternity; but glad you found us. I am 2 months post treatment with similar diagnosis and treatment. I know how you feel it was definitely a mental roller coaster for me; Yes, I still have bad days; but everyday I get stronger both physically and mentally and I know that I still have a lot of life left in me. The future looks brighter everyday; yes it's different but still a future.
Charles
Hi Charles, Thanks for posting, and yes everyday does get better and I am starting to feel like the old me, I don't want to be Jenny with Cancer (actually don't have it anymore) I just want to be Jenny, Mum, wife and florist. Will keep posting. Cheers Jen0
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