How long have you survived

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  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    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
  • mwellsg
    mwellsg Member Posts: 66
    Wow
    I needed this. Just diagnosed. Here I go. Rocky getting ready to fight the Russian.

    Yo Adrian, thanks for starting this post
  • CajunEagle
    CajunEagle Member Posts: 408

    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
  • lawchk
    lawchk Member Posts: 12
    1 year!!!!
    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
    Rory1987 Member Posts: 120
    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. :D

    let's keep fighting
  • seenanN
    seenanN Member Posts: 24
    Almost 7 years
    NPC stage 4 spread to lung. Many side effects but they don't matter.
    Best wishes 2011 to every ones
  • adventurebob
    adventurebob Member Posts: 691
    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
  • hawk711
    hawk711 Member Posts: 566

    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

    I'm with Bob
    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
    rush1958 Member Posts: 221 Member
    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
  • sabriene
    sabriene Member Posts: 28
    5 Years in June
    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.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    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
  • KristynRuth86
    KristynRuth86 Member Posts: 140
    sabriene said:

    5 Years in June
    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.

    3!
    3 months, and exactly 2 weeks from SCC Unknown primary! :D
  • ballonk
    ballonk Member Posts: 39
    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!
  • tonyharr
    tonyharr Member Posts: 6
    seenanN said:

    Almost 7 years
    NPC stage 4 spread to lung. Many side effects but they don't matter.
    Best wishes 2011 to every ones

    Surviving
    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
  • pascotty
    pascotty Member Posts: 174 Member
    ballonk said:

    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!

    Hey guys 15 months now
    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
    CajunEagle Member Posts: 408
    pascotty said:

    Hey guys 15 months now
    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

    Completed treatment in June, 09'
    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
  • Pam M
    Pam M Member Posts: 2,196

    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
    OHNC survivor Member Posts: 4
    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
  • hawk711
    hawk711 Member Posts: 566

    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.
  • hjc1961
    hjc1961 Member Posts: 8
    abbimom said:

    10 years
    hey steve
    I'm always amazed when I can say it has been 10 years. I was diagnosed when I was 21 years old. I had part of the tongue removed and the radical neck dissection and then radiation and chemo and I guess it worked. 6 months is awesome. It is nice because now sometimes I forget what it was like going through all of that. The eating will get better but mine is different. I find drinking milk when I eat helps me. Enjoy life and congrats!! And take great care of your teeth!!!!
    Best wishes,
    Linda

    survival
    God Bless Linda!

    you are a shining example and proof that their really is life after cancer!

    Rock on!