ROLL CALL 2020 - CLOSED!, NO SUBMIT! NEW ROLL CALL 2021 SOON!
Comments
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Checking in April 21, 2021
Had my final 5-year scans in Summer 2020... NED! No lingering effects except occasional cramping of neck muscles at radiation site. Otherwise all is well. Never give up.. Matt, thanks for all you do and I just read about Phranne - so sorry..
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Check in September 2021
Hi everyone! I hadn't checked in for a while. I'm still hanging in there cancer free since my trifecta treatment of surgery, radiation and chemo ended in July 2010. I'm retired as of the first of the year after 43 years on the railroad and enjoying life. Good to see some of the guys still checking in!
Rush
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Beautiful picture......Skiffin16 said:Check In June 2021
Hi Matt, and other people..
Still here, still kicking and screaming.. A photo of one of my recent art pieces, from my reference photo.
65 Mustang
Strathmore Paper - Prismacolor Colored Pencil - 10" x 16"
Beautiful picture......
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Add Me Please
Chad aka Remington25 from ND. I was diagnosed with SCC HPV16+ in October 2020. On 11/18 I had radical neck dissection and then began chemo and radiation on 12/28/2020. My first follow-up PET scan was 4/15 and was NED. I have a second scan in October.
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Roll Call update status
Attention latest update from Civil Matt (9-22.21)
Hello to every one of my H&N buds and to ALL the new (names and faces) which I have seen on the forum.
I apologize to all of you for the extreme tardiness I have shown on updating the Roll Call for 2020 and my failure to get the ROLL CALL 2021 out of my computer and into your hands.
Some of you know that I have some health and some computer issues. I have not solved either of my issue yet. but a new computer shall be in my hands soon and then it will just be a couple of clicks away from the forum.
If you did not know, the CSN staff (which oversees the H&N form) asked me to adjust the content of the ROLL CALL to meet their current rules. I have welcomed and gladly agreed to the new guidelines and have been adjusting all of our current information to “fall-in-line” and hopefully meet these updated requirements. It is nothing bad, just different from before. You will all see very soon.
If you would like to leave a message please feel free to drop it here or send me a PM.
Anyway, Civil Matt has not cashed in his chips yet and will make a presentation very soon of the newest and best ROLL CALL yet,(really)!
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Thank you for the updateCivilMatt said:Roll Call update status
Attention latest update from Civil Matt (9-22.21)
Hello to every one of my H&N buds and to ALL the new (names and faces) which I have seen on the forum.
I apologize to all of you for the extreme tardiness I have shown on updating the Roll Call for 2020 and my failure to get the ROLL CALL 2021 out of my computer and into your hands.
Some of you know that I have some health and some computer issues. I have not solved either of my issue yet. but a new computer shall be in my hands soon and then it will just be a couple of clicks away from the forum.
If you did not know, the CSN staff (which oversees the H&N form) asked me to adjust the content of the ROLL CALL to meet their current rules. I have welcomed and gladly agreed to the new guidelines and have been adjusting all of our current information to “fall-in-line” and hopefully meet these updated requirements. It is nothing bad, just different from before. You will all see very soon.
If you would like to leave a message please feel free to drop it here or send me a PM.
Anyway, Civil Matt has not cashed in his chips yet and will make a presentation very soon of the newest and best ROLL CALL yet,(really)!
Civil Matt,
Thank you for all the hard work you put into continuing the Roll Call.
My Best to You and Everyone Here
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For some reason I thought of
For some reason I thought of this board tonight. Good to see familiar faces! We are coming up on 6 years from my husband's tongue cancer diagnosis. He has been doing great. No reoccurrences. Sees his doc once a year- went earlier this month. It has been so long. Our son is a high school senior this year! Wishing everyone good health and good thoughts.
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Crystal here, aka LitlCJdoll.
Crystal here, aka LitlCJdoll.... Happy to join the Roll Call, enrolled in 2019. I am in Winston-Salem, North Carolina, Wake Forest University School of Medicine & Comprehensive Cancer Center.
Before my HNSCC ---- I was born with a Primary (genetic) Immunodeficiency. In and out of hospitals and research hospitals my whole life. I am Prone to developing malignancies, because of having only a partial immune system. I have poor Immune Surveillance, i.e. my partial immune system does not recognize, seek out and kill.The treatment for my immunodeficiency, is Partial at best, as it gives me only a small part of what I am missing. But, its all we have---- Every 28 days, I'm admitted to the hospital for a closely monitored infusion of Intravenous Immunoglobulin. I have done this over 30 Years now.Diagnosed March 2017, Stage III SqCC. Very large primary tumor. Base of tongue, lingual tonsils, it enveloped the Entire tongue, back to tip. Actual Tumor Size == 6.3 Centimeters by 3.1 Centimeters by 2 Centimeters thick. It Crossed the Midline He could not get a clear margin -- Back margin was Indeterminate. First surgery was Tracheostomy, Glossectomy, Tonsillectomy, Rim Mandibullectomy, bilateral submandibular salivery glands invaded,by the tumor and cut out.... Myleohyoid muscle cut out.... Bilateral neck dissection, 55 out on Right and 25 out on Left.Negative for all HPV types. Grade 3 tumor, keratinizing.Positive for Perineural Invasion.( I decannulated from the tracheotomy. I was very motivated !!)Ive had 5 Recurrent tumors, in different places plus a New Primary, which was very fast growing, invading deep through Floor of mouth then invaded my tongue Flap, 9 months after my IMRT/ VMAT Radiation treatments. 66 Gy. It survived the radiation. Not good!!Many, many surgeries,,,The 7+ hour surgery above included Microvascular Reconstruction for free Flap. from my Scapula / back area. It was the onlly place he could find to harvest it from, I was 64 pounds on surgery day.Since then, , my free Flap has failed. It is actually Disappearing,... Some of it is left, but there is a large Hole in the floor of my mouth now. I can put a finger down into the hole, it is so large. The flap has never functioned, never moved. from day 1..Unfortunately, I aspirate all consistencies of Oral intake. Everything. In June, I just had my 5th case of Aspiration/ Bacterial Pneumonia. This one was Bilateral (Double lung) pneumonia due to E. Coli. Drug resistant E. Coli, . Admitted for all 5 pneumonia. , 2 of them with Sepsis. 2 with Collapsed Lung.I am 100% G tube dependent.I am a mighty 71 pounds now.My beau, my dearest love passed away May 18th, 2021 due to his Stage IV head & neck cancer which had widely metastacized. His was HPV +. That was his second cancer. He fought and never quit, for 9 years . He never was off treatment, 2 cancers leukemia and then this one.We had that in common, the attitude and will to Fight and never quit. Never stop thinking of ways to adapt and finding a way to Go On....I see that same Will here among some of the members --- Always trying to find a way to come back from it all. To Stand Up after a beating, and adapt, and keep going forward, in whatever the new normal is.That's why this forum is so great --- So many like minded people, who can then encourage the ones new to this fight, who come here, and give them concrete ways to move forward,We find that going thirough these life altering experiences changes us and it weighs upon us to reach out, and try to help the new ones any way we can..Thank you, American Cancer Society for this discussion board. Thank you Matt, for enabling this Roll Call to go on!We are grateful.Crystal0 -
checking in 2021
Donfoo (Don), SF Bay area, California, joined forum December 2012, posted in 2013 roll call, but had not formally enrolled until 01-2014. DX’d BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes, one tooth out. Tumor board-induction TPF (3 cycles), seq CRT Apr-June 2013. Fully recovered after six months and feeling great. Checking in July 29, 2015just crossed two years post tx. Overall in better shape mentally and physical than before. Got tight muscles in the neck and my head sweats now when eating hot stuff. Just hope the long-term side effects stay far away. Checking in February 28, 2016. March 2016 - Last visit with ENT moved check ins to 6 months, a good sign. Also confirmed that my BOT HPV+ diagnosis puts me at 3 years out past the main worry about recurrence. Whew!!!! Tight neck muscles still a near daily issue. Big improvement on eating "hot". Yippee. back to tolerance for hot - Love it. Still getting head sweats on hot-hot but not bad. All in all - everyday, thank God for good fortune! Don. Check in Aug. 29, 2016, doing fine at 3 years post. Crossed the 3 year post mark in June 2016. Doing great and living large every day! Checking in July 2017 - 4 years post June 2017. Fibrosis in the neck still a pain in the neck. Otherwise, still doing great and living large every day! Bought a motorhome and taking some trips. Checking in July 16, 2018 (5 years NED – cured!) Passed the 5 years post early June 2018. NED so all good. New normal = old normal except for one long term side effect. That is, tightness along the neck muscle from ear, through jaw, to shoulder on side where radiated. Regular neck stretching and jawwing (big yawns) settles things down. Enjoy every single day, never take today or tomorrow for granted. Life is great! Checking in February 24, 2019 Passed 5 years last summer. Nothing has changed except older. Very thankful that I'm living well, enjoying life each day, no meds, and the only long term side effect is the fibrosis in the neck and jaw area. Even thyroid seems to be holding up.
Checking in October 2021
Ditto the last one. Just older, healthy, and enjoying life. Only long term side effect is the neck and jaw fibrosis. Thyroid still hanging in there too.
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TESTING COMPUTER
Hello to MarineE5, swopoe, wbcgaruss and Donfoo,
I am starting to sound like a broken record, but I am getting close to posting the next Roll Call with the revised format. I am writing this message and posting it with my new Dell Laptop. So far, everything seems to input and upload easily (like it used to do) and it is very fast.
I t old my wife I was going to go outside and rake some leaves. So, that is what I will do starting at 10:30am PDT.
Civil Matt
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Your yard looks like a
Your yard looks like a beautiful oasis or sanctuary!
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October of '21
Bout the only thing new with me is I recently went thru and Endoscopy w/esophagus Dilation, a month later failed the swallow test, and a couple weeks ago the GI Dr. said I will be FT-dependent the rest of my life due to Rad damage to the Esophagus. Been FT-dependent for 26 months, now, but will be 13 years out to the mostly good come late-November, so that be life and I've gotten used to it. Thanks for keeping this Thread active, Matt.
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