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Tonsil Cancer - 4 months post treatment

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

Hi all, what an awesome site, I am so happy to have found you all. I am 4 months out of treatment 35 radiation, 3 cisplatin, I had SCC right tonsil T1N1M0, 44 year old female, smoker and light drinker, although that does not seem to matter to much. I had IMRT treatment with great success and very little side effects, I lost saliva and tastebuds. The cisplatin has caused tinnitus and slight deafness. I lost 25 kilos (Originally 82kg now 62kg, have put back on 5 kilos now tastebuds have returned). Tastebuds started to return 3 weeks post treatment, could taste Vegemite, only for one mouthful, but that was something, I can now taste most things, sweet is a little dodgy, and saliva comes and goes.
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.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

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

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

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 Jen

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

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

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

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 Jen

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

I have never smoked or used tobacco in my life. I posted on your thread on commonalities...

HPV is greatly on the rise, and especially in the H&N cancer for adults within the 40 - 50 year old range. To the point of overtaking tobacco related H&N Cancers.

The thought within the medical community (from what I've read) is mainly from two common practices;

Less tobacco users due to education and awareness of the dangers of tobacco use.
Greater acceptance and practice of oral sex within the last few decades.

Best,
John

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

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

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

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

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

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 Jen

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

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 Jen

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Welcome, Pascotty.

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

Thank you Pam Cheers Jen

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Welcome, Pascotty.

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

I too just want to say welcome to our CSM faimily, hope you plan to stay and help help others who are just starting.

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

Very cool name by the way, thank you for posting Cheers Jen

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

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)

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

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

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

13 years post treatment....welcome

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

13 years, wow, that is so inspirational, thank you for posting, Cheers Jen

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

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 Jen

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

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

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

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

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

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 Under

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

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 Jen

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

Hi Jen,

I am 11 mths out for same deal as you though I was given Erbitux + IMRT and had the left Tonsil (SCC) removed (again). I actually had a tonsillectomy as a kid.

I also went through with Naturopaths and still do. I also started Acupuncture about 2 months out to restore my saliva. I have had some improvement but it still goes up and down. One of the girls posted an Acupuncture technique here done by a US Acupuncturist/Dr. I sent it to my lady in HK and she ran that technique with me 2 weeks ago. I had immediate results so it has improved but I still would like a bunch more. I reckon I am producing 10-15% now which is OK. You have 3 main sets of Salivary glands and you, like me, had them blasted. We also a myriad of tiny ones all through out mouth so that most likely where the most recovery is from.

Anyway I can PM or email you the paper if you are interested and thanks to whoever posted that information a couple of months back.

Scam
PS I am East coast 3 hrs North of Sydney but live in China. Had my Tx in HK. Bunbury and Bussletown are beautiful towns !

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