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How long have you survived

pascotty's picture
pascotty
Posts: 164
Joined: Aug 2010

I think this would encouraging for new and old members to read how long you have survived H&N c (cannot give it a capital)

I am a 5 month survivor of Right tonsil c, with 1 lymph node involvement T1N1M0

Cheers Jen xxxxx

mwellsg
Posts: 66
Joined: Jan 2011

So cool to see this post today. I am 3 hours from my first doc visit after a lymph node biopsy and PET yesterday and then on to exploratory surgery Wednesday. I don't know what I'm against yet or what it's going to take to fix it. Seeing these posts today took about half of the flutter out of my stomach. Thanks

MarkN_CT
Posts: 11
Joined: Nov 2010

post treatment for SCC BOT, stage IV A. Removed about a third of my tongue, rebuilt with tissue from my forearm, removal of 18 lymph nodes (two positive). 30 rads, 5 shots of chemo. Taste is about 75% back, and I can eat almost everything, with little or no irritation.

Five months ago, I didn't think I'd be typing the above. Getting used to the "new normal" was a pain, but I'm doing it. Here's to the survivors and their caretakers!

Fire34
Posts: 352
Joined: Feb 2010

Last scan Dec 10 NED Still dry mouth and swallowing trouble here and there. Docs keep asking aobut taste which is so hard to compare, I guess it is ok as far as I can tell, everything just tastes different than before. Wishes & Prayers on everyone's recovery
Dave

rchunter
Posts: 3
Joined: May 2011

Mark,

Glad to here you are recovering well. My son is about to start RT and am trying to understand best approaches and recovery time. Can I ask which chemo you were on?

Regards, Rick

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

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!

ktjt's picture
ktjt
Posts: 5
Joined: Jan 2011

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!

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Great to see you on the board - Welcome, and even better seeing such a read on the history of and survivorship for your husband.

Best,
John

josh r.
Posts: 197
Joined: Oct 2010

Ktjt,
Thank you for your uplifting on going story. As I, and my wife, march on toward my 20th your post is so encouraging. We wish you another 31! josh r.

fisrpotpe's picture
fisrpotpe
Posts: 1340
Joined: Aug 2010

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

CajunEagle's picture
CajunEagle
Posts: 362
Joined: Oct 2009

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

Crazymom's picture
Crazymom
Posts: 300
Joined: Nov 2011

I have had the neuropathy at times, but it seems to have disappeared lately.  Sometimes I wake up and my right hand is frozen.  After a while it goes away, but like I said it has probably been months since that has happenned.

 

Ann

mwellsg
Posts: 66
Joined: Jan 2011

I needed this. Just diagnosed. Here I go. Rocky getting ready to fight the Russian.

Yo Adrian, thanks for starting this post

lawchk's picture
lawchk
Posts: 12
Joined: Apr 2010

Next week will be 1 year "c" free!!! Diagnosed with Stage II Esthesioneuroblastoma. Removed February 9, 2010 8:30 PM!!!

Lindsey
www.enbfacts.com

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

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. :D

let's keep fighting

seenanN
Posts: 24
Joined: Oct 2009

NPC stage 4 spread to lung. Many side effects but they don't matter.
Best wishes 2011 to every ones

tonyharr
Posts: 6
Joined: Feb 2011

Hello, I have been looking for a stage 4 survivor that had spread to the lungs. My husband had stage 4 tonsil cancer that spread to his lymph nodes and lungs. He finished rad and chemo and eurbitux. It is gone in his neck but has progressed in his lungs. He has 6 nodules that have grown 6mm. The dr's say once it has spread there is no hope but you are hope. Could you please tell me what treatment you had and what worked for you. It would be greatly appreciated. Thank you, Robyn

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

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

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

I am also 9 months post treatment Bob....Got to meet "NED" as of January 3rd and each day is getting better. Saliva the big issue now, still have PEG but am hoping for more saliva as the months go on. I'm a happy man though and much more thankful than I ever was before.
Here's to us all !!!!
Steve

rush1958's picture
rush1958
Posts: 197
Joined: Jul 2010

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

sabriene
Posts: 27
Joined: Aug 2006

Last treatment was June 06. Maybe this will help to give any new people hope. It was in the lymph nodes, both tonsils, tumor on side of neck and bad far back on the tongue. I flew all over the country getting opinions on how to deal with the situation at the time after having surgey to remove the cancerous tunor on neck, removal of both tonsils, and a few lymp nodes. They all agree best just to go with the rad. and chemo treatments. Like many of the rest when I started treatment I weigh approximately 170 lbs. and shortly after treatment dropped approximatley 55 lbs. Toay have gained much back but now keep working to gain more. Like everyone else all kinds of side effects from it all but now able to do pretty well other than with the eating. Mouth sores are a problem and I think some is due to the sal. glands being damaged for I keep water to sip most of the time for the dry mouth. It all takes a lot of patiences and a positive attitude. Thank god we have made a lot of advancement in the treatment & etc.

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

3 months, and exactly 2 weeks from SCC Unknown primary! :D

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

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!

pascotty's picture
pascotty
Posts: 164
Joined: Aug 2010

I started this post sept 2010 for some personal hope and didn't expect the amazing responses that have been posted. It is now six months later and I am in a totally different mind set since then. I have so much hope and excitement in me. I'm no longer scared or worried about the future at all cause tomorrow is my future and I know it exists. I don't post oftens these days but I read every day. I chose to live without fear now and it is because of all of you. Even when the posts are a little discouraging they still bring warmth due to the attention that like minded people give. We all know what we are all going through irrigardless of the severity. I am a 15 month survivor and there was a time I wished it would all end. Not anymore. Bring it on buddy. I'm around for a long time yet. Thank you to the long time survivors for giving us newbies much hope when noone else did. Xxxxx

CajunEagle's picture
CajunEagle
Posts: 362
Joined: Oct 2009

Left tonsil tumor, Stage 4...with involvement in Carotid Artery and lymph nodes. 6 treatment rounds of Cisplatnin, 36 treatment zaps of Radiation, 2 rounds of Taxtera and 5FU. So, been going at it after treatment for 20 months. Currently eating quite well, and physically in the best shape I have ever been in my life due to my personal trainer's scheduling of me working out. Well, okay, maybe after boot camp. But that was 44 years ago. At 63, I'm really enjoying the traveling with my wife, and just enjoying life.

Larry

OHNC survivor
Posts: 4
Joined: Mar 2011

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

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

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.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I have survived 17 years since diagnosed with brain, sinus, carotid artery and optic nerve cancer and survived 18 hour surgery and traditional radiation therapy.

Upgraded to brain cancer in 2005, still on W&W (watch and wait).

luv4lacrosse's picture
luv4lacrosse
Posts: 1398
Joined: Jul 2010

5 MONTHS AND ONE WEEK SINCE TREATMENT OF RIGHT TONSIL SCC W/ METS TO NECK.

THE LAST MONTH HAS BEEN REAL GOOD AS I HAVE MADE GREAT EATING GAINS AND AM BACK TO THE GYM TRYING TO LIFT AGAIN BUT REALIZED AFTER DROPPING 70 BIG ONES I AM HAVING TO START OVER.

HERE'S TO LIVING AND A PRAYER TO MY FRIENDS HERE WHO HAVE PASSED.

BEST!!

MIKE

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi folks. I just passed 1-year post-treatment. I was Dx in Dec 09 (SCC, occult tumor - NPC suspected, 7 local lymph mets). Treatment started in Jan 10 with surgery to remove gross disease from right side of neck (modified neck dissection). Chemo (cisplatin x3) and Rads (6600 grays in 35 treatments) started in mid-Feb 10 and ended on April 1. Pet scan in June 10 was NED. Next PET is June 11.

My ENT said that if the June PET is clean he's going to consider me "cured". Don't you just love the way these guys throw around these terms as if we will have no emotional response to them?

I'll post again after the PET scan.

Much love to all.

Mick

vsudd
Posts: 48
Joined: Mar 2011

My husband has survived since 2006. Almost 5 years !!! I would have given anything to find this discussion board when he was diagnosed. Glad I found it now !

pascotty's picture
pascotty
Posts: 164
Joined: Aug 2010

I'm now a 14 month survivor doing extremely well both physically and mentally. I'm around for a very longtime yet. Love to you all xxxx

luv2cut1's picture
luv2cut1
Posts: 287
Joined: Oct 2010

I just want to thank everyone for posting here. I am especially grateful to the long term survivors who stay on here to give hope to those who hope to be long term. It would be so easy to just move on with your life and not want to be reminded of your battle. Seeing your posts give me such hope. Pat has 20 month PET tomorrow and anxiety level is high. Thanks so much for reminding me of all the success stories!

Myka

rozaroo
Posts: 667
Joined: Apr 2010

I am 15 month's post treatment & hanging in lol!

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Month 23 for me....post treatments.

JG

Hondo's picture
Hondo
Posts: 5843
Joined: Apr 2009

Yep, I am still here and still working in a place that lets me take it easy. lol

Thanks
Hondo

rmdgy's picture
rmdgy
Posts: 22
Joined: Feb 2010

Two years this June. After my next round of CT scans, I move up to every six months. SCC right tonsil and lymph nodes.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Just celebrated two years done with rads last week on 5/15/11. 2 yrs and 7 months and 16 days since I found my tumor.

pascotty's picture
pascotty
Posts: 164
Joined: Aug 2010

That is fantastic, love to hear such positive and inspiring successs. Love Me xxxxx

Larla's picture
Larla
Posts: 28
Joined: Sep 2010

I am now 20 months post treatment for NPC and am doing well most days anyway.

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

Stage lV SCC base of tongue diagnosed Feburary of 07. Still kicking and getting better each day.

Hi Sweetblood 22! You are looking Great! (I aplogize in advance for hi-jacking the thread.)

adrian b
Posts: 13
Joined: May 2011

What a fantastic thread to read. I have recently been diagnosed with NPC (5 days ago) and am about to begin the long battle ahead. I am encouraged by all that I have read on here, so thank you all for sharing

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

We have not been using the word survivor but I guess we should call Ron that after all he has been through. Here are the dates...8 weeks since last rad - last of 33 April 1st
Diagnosed Dec 10 2010 3 cm tumor removed from left lymph gland on Jan 3 2011 also tonsils out. Hpv+ no known primary. Only 2 of 3 chemo cisplatin concurrent with rad last chemo Mar 18 2011. Have 2nd monthly ckup with head and neck tomorrow. Struggling with food and dry mouth but grateful for progress to date.
Ron is returning to full days at work tomorrow.
Life is still a bit upside down but we are trying to be positive and patient.
Happy memorial day everyone
Ron and robyn

pascotty's picture
pascotty
Posts: 164
Joined: Aug 2010

Just thought I'd bring this one up again

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

It's been 15 months post treatment and just received my second NED CT last week. The last was a PET in Oct. 2010. Still having the usual problems that come with a stricture and lymphedema. Have gained back only 13 of the 50 lbs. that I lost and would love to get to 180 -185.

Feeling great and checking in daily.

Healthy prayers to all.

Ed

texan151
Posts: 2
Joined: Jul 2011

http://www.freewebs.com/texan151

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

Or 5655 days but who's counting :>)

fisrpotpe's picture
fisrpotpe
Posts: 1340
Joined: Aug 2010

5658 days, i do not count as long as that sun rises every morning

vsudd
Posts: 48
Joined: Mar 2011

My husband was diagnosed 5 years next month ! I love reading about all the survivors :)

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

Well, last Sept, I said "six months" - guess I have to change that to "seven months".

September 2010, I said "Sure is good to see those bigger numbers. Me, I was stage IV scc Base of Tongue (T2N2). Six months since treatment ended March 16; treatment was nine weeks of induction chemo (Cisplatin, Taxotere and 5-FU) followed by seven weeks of radiation with weekly chemo (Carboplatin). Scans are good (watching one node)."

So, turns out the one node resisted treatment - neck dissection December 2010. So now I'm seven months cancer free; almost two years since diagnosis. Do well.

dogsrule's picture
dogsrule
Posts: 96
Joined: Apr 2010

It's been 2 years since I found the lump in my neck. Unknown primary. Modified neck dissection. 5 weeks IMRT and 2 rounds of erbutx. So far, so good. I see my onco and surgeon every 3 months. Last ct scan looked good. God Bless.

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