#67916 01-19-2008 05:44 PM | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | OP  Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Hi,
My name is John Nichols. Last July I was diagnosed with an oral cancer lesion on the left side of my tongue. After a hemiglossectomy taking about 1/3 of my tongue, I began radiation Sept. 10, 07 for six weeks for lymph node metastisis. I thought I had been sick before in my life, but this, especially the radiation, proved me wrong. I can honestly say now that I know what it's like to have your tail kicked...literally. I have been unable to eat until recently and this only includes soups and such at this point. I have had a PEG tube since October, and can share with anyone the miseries associated with the type cancer, surgery, and outcomes that I have experienced. I am delighted to find this site, and will be equally delighted to join in any conversations.
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi John and welcome.
I would say a time line of PEG tube in october and eating by January sounds pretty good to me,but you are right ,in all my years of nursing i have never seen such a devastating disease.
Sounds to me like all is going well,and jump right in with any questions.
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Welcome John!
You are in the right place for information and questions. Sounds like you are doing pretty good if you can eat soup. Any secrets to that you can share? I still have a heck of a time eating, soup is usually too spicy or salty for me. You are right cancer and the treatments can really take everything out of you. But, its sure better than the alternative.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Christine,
Hello and thank you very much. I only wish I had found this forum many months ago... I have waddled along on my own for the duration here, and talking to someone with any inkling of an idea of what we're going through is a welcome blessing. Looks like there are many sincere individuals involved here and I am very, very grateful...thank you. I'm looking forward to all we can do here.
John
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | John,
I didn't have the Peg but this is what I wrote when I was 4 mos out of Tx. maybe it will help. Hang in there it will and does get much much much better but it will take many many months of gradual improvements of which I am still joyfully experiencing.
Here's my 4 month Post Tx post:
Today marks the end of the 4th month after completing my Tx and I thought it would be useful to others to post my progress.
Taste-I have almost all my taste back. I would rate it 9 out of 10.
Hair on the back of my head-Beginning to grow back.
Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.
High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatin. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.
Mental capacity-Fully recovered or I'm worse off than I think. LOL
Physical-Muscle strength 7 out of my 10. Haven't exercised like I use to due to dry mouth.
Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.
Sex drive-Lost it during the intense time of Tx but it back to normal, thank whoever !
Turkey chin-Gobble, gobble, still have it.
Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.
All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.
All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Hi Liz,
Thank you. I am delighted to be here... it's good to be seen and heard. I am so sorry about your husband, but 'at peace' is a most appropriate word choice... I'm sorry. The alternative is always a frightening reality, but like anything else we must deal with it and move on as best we can. Enough of that. Thank you for your kind words... I am able to take soups, chowders, and such similar concoctions but limited movement of the tongue makes eating difficult, not to mention the difficulties of swallowing. The dental thing is an entirely different ballgame, I cannot wait until the day comes where my mouth feels even halfway clean again... this no saliva deal is crazy. I consider myself very fortunate, and have learned to be thankful for many, many things that I previously took for granted. One thing for certain... you find out quickly who your true friends are. Looking forward to continued talks...take care, and Godspeed.
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | David,
Thanks... your situation sounds very similar. 9 of 10 ratings for taste, etc, are fantastic... I'm not quite there yet, but am working on it. It's difficult to imagine things improving to a level that I will acutally be capable of enjoying... things that are sugar heavy hurt my teeth at times so I avoid them... at one time I could sit down and eat an entire half-gallon of ice cream... ah, the memories! I lost around 60 pounds during radiation, was hydrated in clinic several times... without PEG by choice... but later discovered it was coming anyway... whether I wanted it or not! I'm hoping to get rid of it within the next couple of weeks. Wife and I going Amtrak to NYC for a week next month...the coldest time of the year.
Take care, and thanks for the input... I can use all the help I can get... see my post under insurance and financial concerns, please.
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | John,
You know it funny how we can recover differently but I was never a sweets eater before and now sweets are the most recognizable taste I have. Most people seem to hate chocolate post Tx but I love it's taste since it taste exactly as it did pre Tx.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Hi John. Welcome aboard. My cancer was in my tonsils,not my tongue,so mine is a little bit different. You can read about this war of mine in the Blog section, mine is titled "MY WAR HAS BEGUN". Everyone here will listen and help all they can. Everything does get better, but everyone is different. Good luck Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Thanks Bob. Cold up there? I've always wanted to visit Vermont, as matter of fact, even once had the desire to attend college there... lots of good info here, I only wish I had found the site earlier, but hey, here it is... just in time. I'm just looking forward to having the forum to share... before, I often wondered where all the people were who were going through the same things... now I know.
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
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