| Joined: Mar 2012 Posts: 37 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2012 Posts: 37 | Hi my name is Marly, 2 years ago I was diagnosed with Tongue & Lymph Node Cancer. I just found your sight, I would love to be able to help other cancer patients with what they are going through. I am Happy to say that I am a Cancer Survivor!!! I had and still have a great support system within my family & friends.
Female- Age 49, Non-smoker, I Had 6 weeks of rad/30 treatments, No Chemo. 1/2 of my tongue had to be removed as well as Lymph Nodes. Surgery was 11 & 1/2 Hours long. 40 Lymph Nodes where removed, only one was cancerous. My Motto since my diagnoses- It's All In The Attitude!!!
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Hi, Marly, I was diagnosed almost three years ago with tongue and lymph node cancer as well. I, too, am a survivor. Yea! You have come to a great place. There are the most amazing people here that you will ever find. Tell us a little more of your story, and welcome!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Mar 2012 Posts: 37 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2012 Posts: 37 | Hi zengalib, TY for the Welcome. I posted some of my story in Survivors Stories. I was very Blessed I did not have to have any Chemo just 6 weeks / 30 treatments of rad. My cancer was caught in the early stage, by the time I had surgery one month later I was stage 3. I am also a non-smoker, my doctors feel it was from second hand smoke. Only one Lymph Node was found to have cancer but all were removed on the one side of my neck.
Female- Age 49, Non-smoker, I Had 6 weeks of rad/30 treatments, No Chemo. 1/2 of my tongue had to be removed as well as Lymph Nodes. Surgery was 11 & 1/2 Hours long. 40 Lymph Nodes where removed, only one was cancerous. My Motto since my diagnoses- It's All In The Attitude!!!
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Welcome and glad you found us Marly. Also great to see that you have posted on the survivor forum and started your own blog. Even the quote at the end of your signature tells me you are going to be a great and helpful addition to our family Congratulations on the 2 years. Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Mar 2012 Posts: 37 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2012 Posts: 37 | Hi Gabe, Thank You!!! I had started a blog on world press & added more once I posted what i had written on this site. If I can help out even just one person it will be worth all that I have gone through in the past 2 years. It really helps to have a great support system too. I look forward this new journey I'm now on!!!!
Female- Age 49, Non-smoker, I Had 6 weeks of rad/30 treatments, No Chemo. 1/2 of my tongue had to be removed as well as Lymph Nodes. Surgery was 11 & 1/2 Hours long. 40 Lymph Nodes where removed, only one was cancerous. My Motto since my diagnoses- It's All In The Attitude!!!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Marly, welcome to OCF! Always happy to have another survivor join our ranks helping others. I love your positive attitude 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: Mar 2012 Posts: 37 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2012 Posts: 37 | Hi Christine, Thank You!!!! It really does help to be positive, cancer doesn't run my life I do!!!
Female- Age 49, Non-smoker, I Had 6 weeks of rad/30 treatments, No Chemo. 1/2 of my tongue had to be removed as well as Lymph Nodes. Surgery was 11 & 1/2 Hours long. 40 Lymph Nodes where removed, only one was cancerous. My Motto since my diagnoses- It's All In The Attitude!!!
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Hi, again, Marly, I only had one positive lymph node, also, but they took over 30 out. I did have chemo in addition to the radiation, though. So far, so good! I was stage IV, though, and they didn't mess around after I was diagnosed. I had the surgery less than 2 weeks after diagnosis. I am excited to be approaching 3 years. My doctors have no idea why I got it. I wasn't even around smokers very much, but my ENT said that it could be some type of virus, one that possibly hasn't even been discovered yet. I was also negative for HPV.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi Marly - I too am in your position non smoker etc... I think mine was related to chronic irritation as No one smokes around or near me and hasn't for 30 years.. (mom was a smoker) But I work in a smoke free environment, live in a smoke free environment, etc.. I am almost a year out of rads... (May 4th last year I officially finished treatment) and hope to stay cancer free... I had a 1/3 of my tongue removed and replaced, and had 40 lymphnodes removed (1 was positive for cancer). Welcome SOOOO nice to meet you, and have you join us... you are definitely an inspiration along with everyone else here who's survivng or fighting to be a survivor... you are absolutely right... attitude is everything. hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2012 Posts: 37 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2012 Posts: 37 | Hi Cheryld It's very nice to meet you too!!! & zengalib again (LOL)!!!! I'm not sure how many lymph nodes where removed, the doctor told us that he removedf all of them on the right side of my neck. Cancer was found in only one lymph node. I was raised around smokers all of my life, my dad smoked 4 & 1/2 packs a day. My husband use to smoke until I was diagnosed then he stopped. All of my CAT-Scans have been clean, YAY!!!!!! NO CANCER!!!! (((((( BIG HUGS To All of You Too!!!!))))))
Last edited by Marly; 03-31-2012 06:20 PM.
Female- Age 49, Non-smoker, I Had 6 weeks of rad/30 treatments, No Chemo. 1/2 of my tongue had to be removed as well as Lymph Nodes. Surgery was 11 & 1/2 Hours long. 40 Lymph Nodes where removed, only one was cancerous. My Motto since my diagnoses- It's All In The Attitude!!!
| | | | Joined: Jan 2012 Posts: 112 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2012 Posts: 112 | Hi Marly, my case was also tongue cancer, no nodes involved. Still recovering I guess... had 2 surgery on december 2011, staged as T1N0M0. Too young for this, only 30 yo. Nice to meet you.
BTW, I love New York soooo much!
December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
| | | | Joined: Mar 2012 Posts: 37 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2012 Posts: 37 | Hi braziliangirl82, Nice to meet you too One thing in life that I have learned is that cancer knows no age it hits the old & the very young. Don't worry you have a long life ahead of you!!!! Remember that It's All In The Attitude my new friend!!!! New York is a great place to live, so much to do & see!!! ((((((HUGS 2 U)))))
Female- Age 49, Non-smoker, I Had 6 weeks of rad/30 treatments, No Chemo. 1/2 of my tongue had to be removed as well as Lymph Nodes. Surgery was 11 & 1/2 Hours long. 40 Lymph Nodes where removed, only one was cancerous. My Motto since my diagnoses- It's All In The Attitude!!!
| | | | Joined: Jan 2012 Posts: 112 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2012 Posts: 112 | Hope you are right... I�m happy to have such great attitude from you! Hope you always come here to send this positivity to all of us!
December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
| | | | Joined: Mar 2012 Posts: 37 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2012 Posts: 37 | I know I'm right & you can count on my being here!!!! If I can beet this so can you!! What really helped me & still does is having a great support system in family & friends. We are all here to support each other!!! You are not alone on this journey, anytime you need to talk I'm here!!!
Female- Age 49, Non-smoker, I Had 6 weeks of rad/30 treatments, No Chemo. 1/2 of my tongue had to be removed as well as Lymph Nodes. Surgery was 11 & 1/2 Hours long. 40 Lymph Nodes where removed, only one was cancerous. My Motto since my diagnoses- It's All In The Attitude!!!
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 |
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Welcome aboard! This is a great site and you will be able to help many here. Keep up the good fight in our war!!! Semper-Fi 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: Mar 2012 Posts: 37 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2012 Posts: 37 | Thank You Bob, I came, I saw & I kicked cancers butt!!!! I will never give up the fight, we all stand together as one in this fight!!!!
Female- Age 49, Non-smoker, I Had 6 weeks of rad/30 treatments, No Chemo. 1/2 of my tongue had to be removed as well as Lymph Nodes. Surgery was 11 & 1/2 Hours long. 40 Lymph Nodes where removed, only one was cancerous. My Motto since my diagnoses- It's All In The Attitude!!!
| | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 | Blogging is one of the most effective communication tools you can use to talk about this disease. We had a lunch today where we discussed misconceptions, denial, public attitudes. If medical predictions are accurate (and I hope they are not) H&N Cancer cases will grow dramatically. Parents have an oppty now to vaccinate but many don't know what they are vaccinating against--worse, why.
But enough soap box, hi Marly. Nice meeting!
Caco CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | Joined: Mar 2012 Posts: 37 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2012 Posts: 37 | Hi Caco, Keep on fighting!!!! We are all in this fight together!!! Nice meeting you too!!!
Female- Age 49, Non-smoker, I Had 6 weeks of rad/30 treatments, No Chemo. 1/2 of my tongue had to be removed as well as Lymph Nodes. Surgery was 11 & 1/2 Hours long. 40 Lymph Nodes where removed, only one was cancerous. My Motto since my diagnoses- It's All In The Attitude!!!
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