How long have you survived

rotecdave said:

Three years this February
I was told I had tongue cancer stage IV on February 12,2008 and after seeing two doctors I was operated
on February 14. I had a trak for 6 months and a feeding tube for 9 months and was glad to have it. I did
32 rads and 6 chemo at the same time right after the operation. They removed part of my tongue and
lymph nodes from both sides of my neck. I just finished 60 HB Treatments for rad damage in order to
get my teeth removed because of damage in my mouth. My wife has been the rock I lean on and don't
know what I would have done without her. I was 63 when I got sick and was out of work total for a year but
I'm back to work now and feeling great. I read the discussion board almost everyday. BEST WISHES TO EVERYONE.


rotecdaves

Welcome
Welcome rotecdaves...

Congrats on the 3 years. Hoping you hang around and participate. I'm sure with being out and about for 3 years, you have a lot to offer the group.

Best,
John

Dragons7-7-2010 said:

Survivorship starts the day you are told "you have cancer."
Someone posted this and I'm quoting:
"So everyone knows Survivorship starts the day you are told "you have cancer."

if this is true then I was disgnosed 7-7-2010 and have been a survivor 6 months.

SCC right tonsil which metastasized to neck right lymph nodes. Stage 3 HPV+

Completed treatment December 3, 2010 - treatment consisted of Chemotherapy 3 rounds: Cisplatin, Doxetaxel & FFU followed by 6 weeks of Radiation (30 rads) 55 grys to left side / 70 grys to right side with concurrent chemotherapy of Cetuximab.

Side effects: mouth sores, mucosititus, stomatitis, thrush, acne like rash caused by Cetuximab on my tongue, head, back and face. Cisplatin caused hearing loss to right ear along with hair loss. Thank you God that hair is growing back, acne like rash is gone. I do still have mouth sores, issues swallowing and cannot eat the spicy food I used to enjoy but it cured me of my addiction to caffeine and sugar. Positive I lost 50_ lbs and I am not at a healthy weight for a 5'6" female. I do have peripherial neuropathy in my left arm which the doctor thinks is temporary. Anyone else experience peripheral neuropathy in your arms? This is the feeling that your arm has falled asleep like when you sleep in a position which cuts off circulation but I have not its a chemo side affect according to my medical oncologist. But I wondered did anyone else have this issue with your arm or hand falling asleep?

here's to all the survivors out there!

Since the day I was told ?????
Well that would have been two years ago today. January 26th, 2009. In a real fast method, my ENT says, "Well Larry. According to the biopsy, you have tonsil cancer...BUT... we've already got you lined up with the best Cancer team in the state, and we will begin the process of getting rid of this thing in 3 days." "It's not going to be easy, but we're going to see that you get through this ordeal, and in two/two and a half years you will almost never know it was there." I believe this date is suppose to be some type of benchmark in the recovery process, if I remember reading on here correctly. If so..........then HOORAY !!

Larry

4 years
Diagnosed with solitary extramedullary plasmacytoma in y maxillary area back in 2007 did 33 sessions of 3d-conformal RT. last december I was diagnosed with an intracranial extension (doctors missed the small hair-like tumor in the CT scan) and my last RT will be on monday... Tumor shrunk to half it's size after 12 sessions and im pretty confident that it shrunk even more after the last few sessions.

let's keep fighting

Almost 9 months now
1 month past treatment and 9 since diagnosis. Did my first real hike since treatment ended yesterday (6 miles). Slept a perfect 8 hours last night. Taste buds coming in more each day and didn't wake up once to take a drink last night. Saliva is better each day. Haven't used the tube in almost a week now. It's starting to smell like life around here.

Bob

Survivor
I was diagnosed with cancer in February 2010. My last day of treatment was on June 23, 2010.

I won the trifecta - surgery, chemo and radiation. I met "NED" in early December 2010.

My taste is about 90% of what it used to be. Sweets still fade pretty quick. Saliva function is about 50% of what it was before treatment, but steadily improving.

Life is good...

Rush

ktjt said:

I'm not sure how to do this
I'm not sure how to do this I'm trying to post to the whole thread...
My husband had scc in nasopharynx met to one side of his neck 6 months later met to the other side. He's had a bi-lateral radical neck dissection and rad. That was 31 years ago. Since, we've had two sons and we now have a grandson. He does have really dry mouth due to rad to the salivary glands. He has also had a scc removed from his check growing in from the skin, that was 10 years ago, and just last week had a bcc removed from his neck. The thing about his neck is that it has been radiated and was tight so they couldn't pull the skin together to stitch it, so they had to graft it with pig cells, a sense of humor is essential to get through. Oh the jokes that came out of that... My hubs is now 55 yo. He does still have pain and tingling numbness referral of pain to strange areas.
Keep on fighting the good fight!

Tough times
Congrats on surviving all the tough times. Your an inspiration to all of us out there fighting the fight daily.

Just amazing 31 years.

John

10 Years
It's so wonderful to read all of these postings about long-term cancer survivors. It's been 10 years for me now; so hard to believe. After my 2nd diagnosis, I never thought I'd live to see 2007 - much less 2011!

In Feb 01, I had a sore spot on my tongue that wouldn't go away; turned out to be SCC. I had a partial removal of the left side of my tongue. Since margins were clear, no additional treatment was received.

In mid-July 03,I had a reoccurrance of SCC. It is thought the primary source was the original site on the tongue. I had a radical left neck dissection and my tonsils removed in Aug 03; along with almost 80 lymph nodes in my neck. That was followed by 30 IMRT radiation treatments which ended in Dec 03. I received no chemo treatments. I recovered pretty well from the effects of surgery and radiation and overall, I am doing very well. I've had to have my throat dilated twice since 2003 because it has become constricted and I was having problems with choking. Some saliva production has returned and my teeth are holding up OK (I do use a prescription fluoride toothpaste and rinse). I do have what my oncologist calls a "woody neck" on the left side; it is very hard to the touch. Have some numbness in left neck and upper chest and can't raise my left arm above my head. But trust me, I am not complaining.

With my 2nd cancer occurrence, statistically it did not look too good. But as my doctor kept reminding me, he treats people - not statistics. I don't post a lot here anymore but I still read a lot of the postings. I'm grateful to all of you who share so freely of yourselves. Thank you!

I'll be 60 this year and so grateful to God for the life I am living. Even a "bad" day is good to me!

connieprice1 said:

Make sure to give him Zofran
Make sure to give him Zofran as directed every 6-8 hrs. It is the best medicine for nausea.

Ditto - Timed Meds
My nurse told me to never wait for nausea, and to keep on a schedule for nausea meds, starting with as soon as I got home from chemo. I kept to my schedule, and only had a couple bouts of breakthrough nausea (I also got Emend with chemo).

OHNC survivor said:

How long have you survived
Hi Jen, I'm a 12yr survivor of stage III tonsil cancer. Tonsillectomy with half my palate removed, modified, radical neck dissection, nine weeks of radiation. I'm enjoying my life in the "new normal". Patience is the name of the game in healing from OHNC treatments. Dry mouth will always be an issue, but there are meds, and acupuncture that help. I did not have a feeding tube, and lost a great deal of weight. My tastebuds came back after about three months, and now I'm the buffet queen. After I recuperated, I started the only support group here for OHNC, and rejoice in being able to help people going thru the daunting treatments. 'bin there, done that, and I'm doing great, and you can too.
Best wishes, Valerie

HI Jen
I just saw your post. Never met you before but am glad as heck to see your 12 year news. Congratulations !! I am 1 year yesterday and doing well. Where is your group location? I am in Northern CA. All the best to you, Steve
P.S. What are your meds for dry mouth, mine is still bad. I'm going to try acupuncture if I can find a good acupuncturist.