ROLL CALL 2019 - THIRD UPDATE OCT. 22, 2019

CivilMatt
CivilMatt Member Posts: 4,724 Member
in Head and Neck Cancer #1

PLEASE READ

ROLL CALL 2019

Third UPDATE October 22,  2019

All H&N members are welcome!

 

Roll Call is dedicated to the memory of HAWVET (JOHNNY) who’s curiosity to know and to share a little bit about members of the Head and Neck Form inspired him to start and run this thread (2008 thru 2014).  Thank You.

ROLL CALL Guidelines:

A H&N member will be enrolled in the current and active Roll Call on the date they leave a post to this thread or if they contact me (CivilMatt) and asked to be included in the Roll Call.

It is desirable to have a members supply their name, city, state and dx for their description.  These items will NOT BE A REQUIREMENT, but CivilMatt is asking you “why not include them?”

I would ask you to be creative on your location if you prefer to not give the city and or state in which you live.  Such as: I live down the road from the dog that is always barking and spinning in circles or I live east of Chicago or I have radiation1 brain and I am not sure.  Something that CivilMatt can hang his hat on, please. Almost anything is better than “unknown”.  I got one this go-a-round, a RC member since 2016, identified their location as the Pacific Northwest and that is a step ahead of location unknown.

I will copy all of your information you provide into the current ROLL CALL. You simply sit back, relax and enjoy.

Check-In whenever you see the ROLL CALL thread.  I will update periodically throughout the year.  Also, if you see edits which deserve attention please let me know and if I missed you, I am sorry. Note:  ALL edits will be corrected during the periodic UPDATES to Roll Call.

So far, this year there have been 52 existing members and 9 new enrollees for a total head count of 61 members to ROLL CALL 2019. 

I appreciate those members who participate, but wish more members would give us an update on how they are doing. I will even contemplate anonymous submittals about old timers (term of endearment), (how that would work I have not a clue, yet).  I know there are existing members out there but they choose not to update their current status (themselves).  If you have read many of their posts you would wonder (like I do) why they do not update their profile on here. Many of the earlier H&N members really poured their heart and soul into this forum (in years gone past) and that is why CivilMatt considers the Head and Neck forum to be the best on the CSN website, bar none!  You may know one of these  H&N members who have not checked in recently, if you do, please ask them to stop by the H&N forum and let us know how they are doing. I am happy to note that three (3) H&N members from 2009 checked in to the Roll Call during this update. So, it goes to show, some old timers do participate. Now, I am going to bed, “good night all”.

As always the ROLL CALL thread is completely voluntary and just for the enjoyment and information it provides.  Leave your mark, share your stories, you matter.

 

 

 

 

 

 

 

 

 

H&N MEMBERS

aak16 Ashley from Erie, PA, Enrolled February 12, 2018, Ashley from Erie, PA here. 30 years old. Diagnosed with scc of the vocal cords in June 2017 after laser removal of some of the growths. Completed 29 radiation treatments in July-August 2017.  Radiation kicked my butt and while I had the summer off because I'm a teacher, I took 5 weeks off of work once school started at the end of August to recover.  My 3-month post-treatment CT scan was clear. Right now I'm 5+ months out and my problem is that my voice is very weak because my vocal cords aren't vibrating. A laryngologist told me there's no fix for it but we should wait until the one year mark to see if some fo the function returns after my throat has had more time to heal.

ADBWanderer Barry from Flagstaff, Arizona, Esthesioneuroblastoma Polyp surgery June 2018, dx June, surgery August 2018 in Tucson AZ Currently getting cisplatin every third week and radiation M-F for 6 weeks. Doing pretty well with fatigue as the main symptom. I am the caregiver.

Adventurebob, Marin County, California, joined forum June 2010, enrolled August 21, 2010. DX’d NPC, stage IV with mets to lots of bone. in May 2010. Checked in January 20, 2011. MIA in 2012, checked back in March 2013. Lots of chemo/radiation in 2010, more in August 2011 for bone mets in right hip, more chemo/radiation Sep 2012-Jan2013. Married in bottom of Grand Canyon October 9, 2012 and now doing well.

AJW1966, outside Annapolis, Maryland, joined forum November 2012, enrolled March 7, 2013, DX’d August 12, 2012 w/SCC left side HNC. Treatment completed November 30 and still have difficulties with after effects, but slowly improving.

Akotke, Alabama, joined forum March 2011, enrolled August 12, 2011. DX’d Stage IV, right tonsil in November 2010. Was MIA until checked back in February 12, 2013. Still NED, working full time and attending school for Nuclear Medicine. Still w/constant pain from radical neck dissection, dry mouth and some trouble swallowing.

Alpinelife no name, city or state. Enrolled February 4, 2019 I’m still here. I began my cancer journey late 2013 with Stage 0 tongue cancer. Have had two recurrences, the last in Oct 2017 as stage 4 tongue cancer. Treatment ended in Feb 2018, since then have been NED. A tough journey, but life remains good.

AndrewP16nose (Andrew) New Zealand.   Enrolled July 19, 2015, Diagnosed Sept 2014. Invasive SCC nasal septum extending into maxilla. Incomplete excision Oct 2014. Radio and chemo for 35 days. PET scan April 2015- NED. Facial reconstruction surgery with fibula free flap June 2015. Recovering prior to tidy up surgeries.

Andy13460 Republic of Ireland, Co Mayo. Enrolled April 22, 2017, Hi I started with a sore throat end of August 2016, visited a G.P. 1 st week in November. G.P. finally sent a referral letter to an ENT consultant 12th Jan 2017. I got to see the consultant 28th February 2017; he felt around my tongue and said there and then there was a growth inside my tongue at the base right hand side. 6th March 2017 head & neck MRI scan; CT scans head, chest, abdomen & pelvis. 13th March 2017 In for Results 2.2cm tumour with what looks to be 1 lymph node so it came up as T2:N1:M0 (CT chest, abdomen & pelvis nothing showing up) He couldn’t do the biopsy to far back so he referred me to a colleague who could, 1st appointment 27th March2017 with this consultant and biopsy arranged for 29th April under a general anaesthetic. Results in for the biopsy 7th April 2017 SCC HPV+, to far back for surgery so it will be 3 Cisplatin day 1, 22 & 44 with 7 weeks IMRT radiation. Back to the present time I see a radiation oncologist 25th April and treatment hopefully will start around the 15th of May. I'm 241 days from first symptoms.  Checking in July 11, 2017 Now 2 weeks after treatment finished. Home in the west of Ireland3 Cisplatin & 35 IMRT zaps T2:N1:M0 BOT HPV16+     Going back to work in just over 2 weeks time, off meds and getting back to eating and tasting food again.  Checking in January 5, 2018, All Good up to now 6 months out of treatment for BOT SCC HPV16+ 3 Cisplatin and 35 rads.  Eating is normal taste is 100% back Saliva is about 90% back. No pain slight amount of mucus still nothing to bother about. Running 60 to 70 miles a week completed a marathon in November in 3:30 (2nd overall), half marathon next Saturday & another marathon end of March. Ive nearly  managed to get the weight off that I put on for treatment!! Checking in February 4, 2018, All Good 32 weeks out of treatment for BOT. 3 Cisplatin and 35 lots of radiation. No issues everything back to normal apart from the slight loss of hearing due to Cisplatin. Running 80 plus miles a week and will race my 2nd marathon since treatment finished in another 6 weeks time I'm actually quicker now than I was pre treatment.  Checking in June 14, 2019, Still here nearly 2 years out of treatment.

AnotherSurvivor (John) Parker, Colorado, Enrolled Feb 19, 2017, Retired, 64 y.o., married to an incredibly strong and intelligent woman.  Stage III T-3, N-1, M-0 +HPV SCC confined to right tonsil.  DX 10/25/16.    35 IMRT treatments with 7 Carbol/Taxol chemo treatment.  First treatment 11/15/16.  All treatments at Skyridge Cancer Center or Kaiser-Lonetree, Lonetree, Colorado.. I found Skyridge and Kaiser to be phenominally effective, I would rely on them for treatment again without hesitation.  Dr. Scott Kono was my chemo oncol, Dr Mark Edson was my rad.  Both docs are as good as you can find, including at places like MD Anderson (where Dr Edson just completed a fellowship).  The quality of their support staffs are perfect, the Infusion Center at Kaiser became almost a second home.

On 12/07/16, after repeatedly passing out on the floor, I was admitted to emergency care at Skyridge hospital where 3 pulmonary embolisms were discovered.  Total of 10 days of in/out hospitalizations destroyed any sense of continuity.  Full treatment for my cancer continued during my hospitalization, they wheeled me to the beam in a bed.  It was hard at the time, but I finished 1 day later than originally scheduled.  Sentenced to 12 months of daily subcutenous Lovenox injections in my belly for the embolisms.  Completed cancer treatment 01/03/17.  No PEG, I did get a PICC during the first hospitalization.  Started at 218 lbs, ended at 177 lbs.

 Today, I just completed week 7 of post-treatment, slightly over 100 days since diagnosis.  Weight is usually +181 lbs, I consistently get down +2,000 calories, but it's pretty much just nutrition shakes.  Mixed blessing, current weight is considered a healthy weight and my vital signs say I'm very healthy, but my muscle mass is gone, simple tasks are a challenge.  Overall, everything is improving, none-the-less my general life confidence is pretty well trashed.  Some days are better than others, but my main concerns today are dry-mouth, lack of taste, spotty sleep.  Some days I am constipated, I'm doing powdered fiber and Senna, and eventually that works.  Right now I'm simply trying to heal up my last mouth sores, figure how to deal with dry-mouth, and start sleeping.  Spring is coming, and I need to push myself to be more active.   PET is still 5 weeks out, but I feel pretty good about my odds.  Overall, I feel more numb than lucky.

armana Arman Aransen. DFW metro Texas, Enrolled January 6, 2018,  3 years 2 months post treatment for stage III HPV+ SCC in tonsil with one lymp node involvement. Treatment included surgery to get the tonsil out followed by 6 1/2 weeks of radiation but no chemo. I am doing great with the exception of some dry mouth back to normal.

Arndog64, state unk, joined forum March 2011, enrolled husband in April 18, 2011. DX’d left tongue base tumor w/lymph node invasion on January 28, 2011. After MIA, reported back on February 5, 2013. Husband doing well but still has throat pain and teeth starting to deteriorate. Avisemi (Majose)  caregiver.  Washington, DC. Enrolled July 15, 2015.  My husband Dmitri was diagnosed with nasopharyngeal squamous cell carcinoma stage 3 or 4 depending on doc on Sept 2014.  Finished treatment in Feb this year. First post treatment scans were NED. Next ones are next month.  Pone of the favorite tips I learned here: "if Jeff can do it, Dmitri can do it"

Backachedp, Minnesota, joined forum October 2009, enrolled July 24-2010. Husband Bob DX’d unk on September 29, 2009. NED May 23, 2010. MIA in 2012 and checked back in March 13, 2013. Was doing OK but with swallowing problems. Having lung issues due to aspiration.. Dr recommending feeding tube.  Chked back June 22, 2013. Surgery on May 20 and swallowing/coughing gotten worse. Also have back problems. God bless and saying a prayer for him.

Barbaraek (Barbara, caregiver to husband Boris) Buffalo, New York. Joined Sep 4, 2015.   Diagnosed 5/26/15, NPC stage IVa T4N1M0, 35 radiation tx with 2 concurrent Cisplatin, currently attempting adjuvant chemo Cisplatin + 5FU. Finished treatment September 2015 - was only able to tolerate one round of adjuvant chemotherapy. Great news was NED on October 2015 PET scan. Will now receive regular scans.  Check in July 12, 2016, scans today are NED! Monitoring will now be every 6 months. Dry mouth is still a big challenge, but eating is getting better, and energy is returning. Chemo port, PEG, and all pain meds are gone...and hair is back!  Barbara - caregiver to husband Boris, diagnosed with stage 4 nasopharyngeal tumor 5/15. Checking in, February 8 & 18, 2019. We are still NED 3 1/2 years post stage 4 NPC, (yay!) but have had significant complications from the radiation. The latest is bilateral vocal cord paralysis which is affecting breathing, swallowing and speech. A tracheostomy seems to be in our very near future. Nonetheless we still consider every day to be “icing on the cake” and just celebrated our 34th wedding anniversary.

BartT, Staten Island, NY, joined 03-2013, enrolled 12-31-2013, DX’d 03-2012 w/tongue cancer. Hemiglossectomy, radiation & chemo. All clear at time of enrollment and back to 100% on activities and life style, but with minor but annoying side effects.  Check in Aug 12 & 13, I recently posted about 4 years since my last treatment, so now is as good a time as any to check in. The short story, 4 years out, no cancer, doing everything just like before cancer, but do have a batch of annoying side effects, mostly from the radiation. I complain a bit now and again, but very happy to be here.  Corrections January 31, 2017.

Bebo12249 (Bill) Jackson, MS,  Enrolled Oct 29, 2015 SCC HPV+ of the tonsil with positive lymph nodes July 2015. Tonsillectomy followed by

Comments

  • DarcyS
    DarcyS Member Posts: 81 Member
    #2
    Life's good

    7+ years and my husband is still doing great!  We're enjoying life and wish you all health and happiness.  Thanks for all the great advice and support!

  • wolfen
    wolfen Member Posts: 1,324 Member
    #3
    Still Here

    Sweet Matt,

    Still here in mostly hot and dusty Scottsdale, Az. Had dreams of moving to the mountains, but didn't work out. Another year older, but no wiser. Getting along okay, just the usual stuff that comes with getting older. Son and grandson live with me to help out, along with our 2 BIG dogs, 90 lbs. and 120 lbs.

    Will forever miss my West Virginia hillbilly and my beautiful Kentucky cowgirl. Life is a lonely place without them.

    As always, wishing the best for everyone here.

    Luv,

    Wolfen

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited October 2019 #4
    all checked in

    Hi Karen,

    I spent a summer (1981) in the White Mountains of Arizona; more specifically I lived in Eager and Springerville.  It never got much warmer than 90 degrees up there, the entire summer.  I guess that is why we would see so many folks from the hotter regions come up there to cool down.

    I am always trying to get ooour place more conducive for what will come in the years ahead.  We have a nephew who works for us on  a regular basis. He is very good and extremely honest, we are thankful for him.

    Has Phrannie included you in one of her stops when they are out motor homing around the southwest?  Didn’t she stop by once before?

    Take care, your Oregon Buddy,

    Matt

  • kgasmart
    kgasmart Member Posts: 64 Member
    #5
    Sign me up

    kgasmart, from Treasure Coast, Florida, age 52, diagnosed SCC HPV right base of tongue in June 2017, laser surgery at Florida Hospital/Orlando in December 2017, along with full modified radical neck dissection, they took 63 lymph nodes, cancer had spread to 1. 

    30 rads to right side only, began in early February 2018; lower dosage as per newer guidelines, still knocked me on my *ss. A small cut on my neck during te radiation treatment led to a cellulitis, for which I was hospitalized twice and went to the ER a third time before the antibiotics finally knocked it down for good.

    Fairly significant lymphedema early on, massage therapy and now at-home massage keep it under control. Two years out I still have fairly significant neck discomfort related (I think) to the dissection, and can't sing/hit the high notes like I used to. Significant scarring/major "turkey neck." Have to watch it while eating dry foods like toast, etc., very easy to aspirate crumbs etc. into my lungs, always need to drink lots of fluids while eating. But all this said, no evidence of recurrence at this point, for which I'm grateful.

    Lots of thanks to the folks on this forum, I've posted several questions - when you're dealing with the cancer or the side effects and the strange sensations, etc., you think you're the only one out there, and when the docs don't have all the answers you turn to forums like this. And when people here say "Yeah, that happened to me too," it's a big relief, because at least you know you're not alone!

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #6
    Still here :)

    Just checking in.  8 years out, NED.

     

    To all fighting, h as ng tough, it can be beat!

  • Laralyn
    Laralyn Member Posts: 532
    edited November 2019 #7
    Hello! Checking in

    Hello! Life has been busy and in some ways really challenging... but I'm hanging in there. My husband likes to say of a job he dislikes, "I'll ride it 'till it bucks me" and that's how I feel about immunotherapy. I was in the clinical trial until it ended for me (the drug company added a two year limit) and have been on monthly Opdivo since then. I'm still cancer-free, but juggling most of the immunotherapy side effects, running the range from common to rare. None have been serious enough to make me stop treatment thankfully! It's just tough trying to manage all of that and still work full time. 

    Hope everyone else is doing well. :-)

  • Steve1959
    Steve1959 Member Posts: 28 Member
    #8
    STILL GOING STRONG!




    Hi everyone. Still going strong three years after my surgery and radiation treatment. Only one concern, small nodule on my left lung. My oncologist is monitoring closely with the usual CT/PET scans. So far so good. The nodule isn't growing. My oncologist has indicated that I am not out of the woods until the 5 year mark and the nodule in my lung doesn't grow anymore. With that said, we travel a lot more, have simplified our lives and just appreciate life in general and everyone around us. Including all of you on this site. Yes including you too CiviMatt! I enjoy everyone of your inputs to this forum. We all need a good laugh and you provide. Thanks for that. All the best to each and everyone of you.

     Steve

    ***FOR CIVIMATT***

    Hi CiviMatt,

    Please include the aforementioned comment in my update and could you also delete the wording in my current update (I didn't provide this part of the update. Thanks.

    "Thanks to all for your input over this past 2 years. Much appreciated and I hope only the best for each and every one of you. Checking in October 19, 2019 Going on 5 years NED since my diagnosis.  Thank the Lord all is good so far. God Bless!!"




  • Dagney1924
    Dagney1924 Member Posts: 30 Member
    #9
    New to this

    Hello, I'm. Glad I found this forum. There years ago my dentist saw a lesion under my tongue and told me I should have it checked out. I immediately went to an ENT and the biopsy came back benign. I went back every nine months, he looked at it, and said it looked ok, until June.  Had another biopsy and it was no longer benign. I had a hard time finding a doctor that would excise it and take my insurance but finally found one in Abilene. So I had it excised and believed I was done. The two week check up there was more cancer cells. He sent me to a radiologist. The radiologist explained the awful side effects and said since my cancer was so early stage surgery would be my best option. Here I thought radiation would be like having a few exrays and the cancer was gone, pain free!

    So I had my surgery October 15, and opted to have some lymph nodes removed in case the cancer returned. I had no idea how bad the side effects are!  And the doctors keep telling me I'm doing better than most. They did find a few more cells under my tongue I had removed yesterday. I had just gotten to where I could eat a hamburger. But hopefully I can eat pain free on Thanksgiving. I'm thankful I can still eat and not have a feeding tube. I found this forum while I was still in the hospital. And reading the posts here has put my problems in perspective and given me encouragement. And I have gotten a crash course on how ugly cancer is. 

  • jkinobay
    jkinobay Member Posts: 298 Member
    #10
    Thirteen Years NED and going strong

    ORIGINAL DIAGNOSIS SCC IN A LYMPH NODE, PRIMARY IN A TONSIL.  SURGERY FOR BOTH.  SEVEN WEEKS OF CISPLATIN AND DAILY IMRT.

     

    Still living in Mexico. Still fishing on the Sea of Cortez.  Still loving life.  Hard to believe it's been thirteen years already.  My best wishes to everyone.  Jim Kennedy

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