Jul 22, 2010 - 3:51 am
First, I would like to extend my deepest sympathy to CatyA88 for the passing of her loved one Tim. May she find peace as she cope with her loss during the difficult days to follow. God Bless.
Thank you all for participating. I do wish you will continue to be present. The below is an update on our Roll Call. We started this roll call a couple of years ago with hopes to keep up with those who have suffered similar illnesses and are still around to discuss it. Unfortunately, some have departed and their status is unknown. It is my hope that they have survived the ordeal and are peacefully at home enjoying life with their families.
If you notice, there is different information on each individual. It is because in the last few check ins, I have included the information provided. In the beginning, it was only the names with one of two lines following.
There are a few who post on this forum, but they are not listed. l respect their privacy and am posting only those who answers to roll call. I cannot extract information from daily postings since it is not an easy task and without the individual's permission.
A special thank you to SKIFFIN16 for creating the map locations. Although you have indicated your state of residence in roll call, it can also be seen on the below map.
I am that lone person located in the middle of the Pacific Ocean. I had nasopharyngeal cancer in 1998 and can understand all the difficulties faced by many on this forum. My saliva has worsened and I have some of my taste back (maybe 50-75 percent). I retired after serving just over 30 years in our great United States Army and 15 years with the Postal Service. I am just happy to still be around.
SINCE THIS LIST IS LENGHTY, DO NOT POST YOUR UPDATE ON THIS THREAD. A SEPARATE THREAD HAS BEEN STARTED.
Aloha and Mahalo
NAME, STATE, DATE CHECKED IN AND BASIC INFORMATION
Ballonk, Lousiana, 2001, checked in 02-04-2010, SCC of left side tongue, had chemo-no surgery. In 2003, found lump in left side of neck with reoccurrence of SCC in left neck. Had radical dissection and approximately 80 lymph nodes and tonsils removed. Radiation completed 12-2003.
CajunEagle, Lousiana, 2009, checked in 02-03-2010, Stage 4, left tonsilar sqamish cancer. Completed therapy June 2009, doing great, eating well
Christmas, California, 2004, Nasopharyngeal, Checked in 07-08 Just had yearly check up, all clear after five years. Checked in
Clearblue, state unk, checked in 07-13-2010. Information onf wife. CHEMO ruled out and RAD T generally not recommended. 2001- base of tongue SQUCC. 2008-Esoph SQuSS- esophagectomy. 2009-10:Partial larpharingial + lubectomy lung. Presently in 13th week of Erbitux (any ideas for dealiong with burney face- appreciated). Peg and Trach out for 2.5 months
CLRRN, state unk checked in 07-13-2010, Partner Mike: Basaloid Squamous Cell Carcinoma Left tonsil: Neck Dissection, tonsillectomy 3/19/10, 2/42 lymph nodes removed were positive. T1N2BM0. Completed 8 weeks of radiation on 6/17(7wks to primary location and a week of "boost treatments" to clavicle area, 3 rounds of chemo (Cisplatum) completed on 6/7
Cwcad, state unknown, 2007, checked in 01-31-2010, Stage IV tongue cancer, latest scan in January 2010 shows free of cancer.
D Lewis, California, 2010, checked in 02-05-2010, metastic SCC in lymph node removed from upper neck, MRI was scheduled for February 9th.
Davidgskinner, state unk, checked in 07-13-2010m. Diagnosed December 09 stage IV SCC right tonsil with mets to lymph nodes. Had 35 rads and 3 rounds chemo (cisplatin) completed at end of March 2010. Thought I would never eat or taste anything again, but had PEG out in April and have about 75% of taste back today. Saliva is about 60%. Had partial neck dissection in June 2010. All the lymph nodes that were removed showed no cancer. Today I am NED. Yay! The biggest side effect I am dealing with is neuropathy to my feet. It will either get better it or I will adapt.
Dazey, 2009, New York, DX SCC, checked in 01-31-2010, unknown primary, completed treatment Oct 26, 2009, doing well
Debbiejeanne, Ohio, checked in 07-11-2010, dx last Aug. and had 35 rad trmnts for Larynx (voice box). I'm very happy to see so many replying. Best wishes to you all. Other than some ligering side effects, I am doing well.
Denis318, Tennessee, stage IV, throat cancer diagnosed 11-09, checked in 03-17-2010, radiation/chemo ended 02-25-2010, Due to report back in four weeks. Checked in 07-12-2010 with update: Trach installed, Drs overradiated my throat, will not heal, l/s larynx no better, does not work stall out, and totally disappointed in my recovery, to long, and going no where.
Delnative, Delaware, 2008, Checked in 02-02-2010, Stage III SCC Right tonsil, Pet scan December 2009, cancer free.
Dogsrule, state unk, checked in 07-11-2010, diagnosed Oct 2009 scc unknown primary,left modified neck disection, 2 nodes involved, 13-16 lymph nodes removed, stage 11 27 rounds radiation, 2 erbutux. Last pet good, peg out. 51 years old next Friday.
Doitforj, Georgia, 2009, Checked in 02-01-2010, SCC of base of tongue and neck, finished treatment 12-09-2009, Doing great.
Fbcuthguy, checked in 03-16-2010, Tennessee, 2009, SCC unknown primary Stage IV. Had radiation and chemo.
Finz2lift, North Carolina, checked in 07-11-2010, Squamous Cell base of tongue and left lymph node malignant treatments start Tuesday July 13, 2010 I am here today
Fire34, Illinois, checked in 03-17-2010, SCC of the head & neck stage IV hpv positive 8 weeks of chemo and 5 weeks concurrent radiation/chemo with twice daily radiation - 3 months out PET/CT clear diagnosed 7/09
Fishinggirl, State Unk, 2009, Checked in 11-27-09. Last radiation Oct 09, diagnosed w/ squamous cell carcinoma (Cindy)
Frank10G, Virginia, 2009, Checked in 02-03-2010, Stage 3 NPC, EBV Positive, Finished treatment 01-09-2010
Glenna M, New Hampshire, 2009, Checked in 01-31-2010, NSCLC adenocarcinoma in left lung and SCC of laynx, Finished chemo/rads in September 2009. First scan and biopsy reflected in remission.
Geezer, Florida, 2006, TonsilarHondo, Louisiana, 2005?, Nasopharyngeal, Checked in 01-31-2010, last PET with positive results in December 2009
GraceLibby, Washington, checked in 07-14-2010. dx 7/10, right neck dissection on 7/1/10, SCC right tonsil primary, SCC in level 2 lymph nodes. Still working on treatment plan.
Greg53, Missouri, checked in 07-20-2010. SCC right tonsil. HPV+. Mets to 11 lymph nodes. Tonsillectomy and radical neck dissection Jan. '10. 35 rads concurrent with 3 chemo treatments ended 4/12/10. 53 year old male. Missouri.
Hal61, California, checked in 03-29-2010, diagnosed stage 3, SCC with primary at base of tongue with metastasis to 2 lymph nodes confined to left side in November, 2009. Completed chemo and 35 radiation treatments on 03-25.
Irishgypsie, New York, checked in 07-11-2010, SCC Right Tonsil cancer with 1 Right Neck lymph node involvement. Had Tonsillectomy and neck resection April 6th. Finished treatment. June 30 with 33 Rads and 2 cispaltin and 1 carboplatin every 3 weeks! Still recovering hope and pray the numbers are good!
Jagged, Washington, Breast 2005, Esophagus 2007, Lungs 2008Hal61, Checked in 03-29-2010,
JGE, state unk, checked in 03-17-2010. 2008, BOT w/2 nodes. Had chemo and rads. All scans cleared, return to work 01 2009.
Jkinobay, Arizona, 2007, HPV16 positive lymph nodes. Lives and works in Mexico, 04-21-2009 Happy to report 18 month pet/CT scan. Checked in 09-07 Still around. Reported back in March 15, 2010 = last scan 10-2009, doing well. Retired living/fishing in Mexico.
Kimba1505, Pennsylvania, checked in 07-20-2010. Partner Mark was diagnosed on April 13th 2010 with SCC of the left tonsil,
Lady4darknight, Missouri, checked in 07-11-2010, diagnosed stage 2 lymphoma in base of tongue and tonsils...undiagnosed spot in stomach from PET scan awaiting biopsy results....5 surgeries, just finished 20 rads on June 23rd, have trache, PEG, and Port. Repeat MRI and CT scans on the Aug. 3rd to determine next step.
Landranger25, state unk 2009, checked in 01-31-2010 and doing fine
Lena Rose, state unk, checked in 07-14-2010. Husband diagnosed w/ BOT SCC HPV+ in March. Completed 7 weeks of rads and chemo (cisplatin/erbitux)June 10, 2010. V e r y slowly recovering
Ljoy, state unk, 2005, right tonsil cancer, checked in 01-31-2010, doing fine and no signs
Meinken, Georgia, checked in 07-12-2010, first diagnosed jan/2010, NPC. Had 2 rounds of chemo at 3 week intervals. Was supposed to have three, but I developed bilateral pulmanary embolisims(dang spelling this med stuff is hard) and also passed a kidney stone. Received 35 radiation treatments and 5 chemo. Am now 8 weeks out of radiation, and have been back to work for 2 weeks and a day, and have not used my feeding tube for almost 3 weeks. Almost no taste, and I have to keep a bottle of water with me at all times (and use it to help with swallowing). First pet scan scheduled coming Friday.
Micktissue, Illinois, 2008, Unknown Primary, Checked in 03-20-2010, Completed treaatment April 2009. Returned to work and next scan was due this past April 2010.
Morris, Michael "Mick", California, 2009, SCC unknow origin State IV, Checked in 01-31-2010, being treated when checking in.
Naturenaw, North Carolina, checked in 04-14-2010, 2005 SCC of tonsil stage 4, had surgery and simultaneous chemo (Cisplatin)and max radiation treatments - doing well - every day is Thanksgiving! Still struggling to gain weight though - very skeletal!
PAM M, Kentucky, 2009, Checked in 01-31-2010, SCC BOT IV dx, started radiation w/concurrent Carboplatin on 01-25-2010 biopsies and Tonsillectomy (rt. only) 10-24-09. Induction Chemo (5FU, Taxotere and Cisplatin) Nov. 2009 - Jan. 2010. PEG installed 12-24-09. Chemo (Carboplatin) with Radiation (IMRT) Jan. 2010 - March 16 2010..CT/PET done 06-28-10, results 07-02-10. Primary and formerly very large node now non-issues. PEG will be removed 07-27-10. Lost nearly 70 lbs during tx - OK, since I went in 80 lbs overweight. Still dealing with eating/saliva/throat issues, but I'm only four months out. October 2009. Awaiting scan. Checked in 03-16-2010, scan clean in 01-2010, next due in 04-2010.
Ratface, state unk, 2009, checked in 02-03-2010, T1N2BMO, Stage IV-BOT-2 nodes right side, selective disection 11-30-09 9 nodes removed
Rush1958, Kansas, checked in 07-20-2010. Squamous Cell Carcinoma, Base of Tongue - HPV-: tonsillectomy and biopsy 3/12/10, Neck Dissection, 2/41 lymph nodes removed left side were positive on 4/3/10. T1N3M0. Completed 33 radiation treatments on 6/23/10, 3 rounds of chemo (Cisplatin) completed on 6/14/10..
Skilffin 15, Florida, 2009, checked in 01-31-2010, SCC right tonsil, stage III-HPV. Treatment completed June 2009
Staceya, state unk, 2009, Checked in 02-02-2010, Stage 1 NPC, had 9 of 35 rad txs. Checked in again 03-20-2010 and reported 35 IMRT and amifosine ended 03-09-2010
Stevenl, Texas, 2010, Checked in 01-31-2010, SCC stage 4 in right tonsil. Undergoing treatment when checking in.
Sweetblood22, Pennsylvania, checked in 03-18-2010, SCC HNC unknown primary stage 4. dx 12/09. fanconis anemia patient. modified radical neck dissection on left side, 23 lymphnodes removed, 3 cancerous. 30 IMRT, 200 CGY per day. 6,000 total, 5000 reg, and 1,000 neck boost 4-6-09 to 5-15-09
TIM_WWJD, Oregon, 2009, Checked in 01-31-2010. SCC Stage 4, left tonsil, last ENT clear, chest X-Ray clear. Was removing port in early February.
Tom55, Michigan. 2006, Medullary thyroidTootsie47, Oregon, 2009, Checked in 01-31-2010, husband Dx June 2009, occult primary, clean scan 12-2009Train-nut, Oklahoma. 2007? Checked in on 01-31-2010, SCC of the hypopharnx. Thanks for keeping tab. It's great to see such a long list. Still doing well. Keeping on eye on my teeth. Otherwise, I'm putting on too much weight. I may have to increase dosage of thyroid medication.
Tonyanddenise, Ohio, checked in 07-12-2010, Tony from central Ohio. 48yo. Denise is my lovely bride. diagnosed 5-20-10. primary found in "L" tonsil labeled as follows,T1N2BMO=4A. Initially, bilateral tonsillectomy 4 lymph nodes removed. all metastasized. next was the radical neck dissection. 28 more nodes removed, 9 fully mets. they also got my spinal accessory nerve(that really sucks) then received a seroma @ the RND site that was manually drained on 2 separate occasions. power port placement. underwent general asth. for 2 new drains for the seroma. how they get 2 feet of hose in your neck is beyond me!. my port didn't work the anesthesia infused in my chest. Damn that hurts! port study done under a fluoroscope, junk....had to be replaced today. received my PEG tube today. it's a bit tender along w/ the 2nd port site. had the mask fitted, that was a bit odd. I start chemo/ Rad. this Thursday the 15th.
Victor53, Rhode Island, 2008, Erbituz Carboplatin Taxol, Lives in Costa Rica (Victor Brown). Pet Scan, April 23 2009, Back in Costa Rica. Reported 04-30-2009 on scan results….Okay, needs another CAT scan in 3 mos, PET in six. Back to Costa Rica in August for month, then back In Jan-Jun 2010.. 11-28-2009 - Feeling great and quitting smoking. Checked in 07-062009, Still okay. Reported on 03-29-2010 and still hanging tough.
Wife for Life, Missouri, checked in 04-15-2010, Husband Stage IV SCC with primary at base of tongue with metastasis to lymph nodes and tounsil confined to left side November 6, 2009. Surgery, Chemo, and radiation. Completed treatments. Followup CT scan and scope March 5th 2010 no signs of Cancer. Still weak, using feeding tube slightly, saliva improving. Back to work. AMEN!
MOM674, Passed away in December 2008. Was a brief member, fought hard…reported by jkinobay
29 MISSING AND HAVE NOT PROVIDED AN UPDATE
Byzas, New York. 2007, Checked in 05-12-2009, Left tonsil, stage III
Craig_Griffin, Indiana, 2008, Mass Squamus Carninoma (tongue base), checked in Feb 4, 2009
Cwctcher, Virginia. 1997, Tonsilar
Devildawg, Michigan, 2004, Nasopharyngeal
Lolojldunn, Montana, 2007, Stage 4 Tonsilar (last treated 8/16/2007)
Lorileona, Wisconsin, 2005/2008 Wife of Ron w/Tongue and lymph nodes (Spouse)
Luckyfl, 2009, Checked in 05-13-2009, Just started, left tonsil and lymph. Nodes removed pass Monday, Name: Roxie
Marymoo, Alabama, 2008, SCC of tongue and lymphnodes current at time of posting, Age 39
Moondreamer, Phoenix, cancer unk, Originally from Indiana, checked in 02-06-2009. Caregiver, daughter in law brain/bone
Marywiz15, Colorado, 2007, epithelial myo-epithelial carcinoma
MLC53, State Unk. 2007?, Checked in 11-27-09. Had been 2 1/2 years since post treatment.
Nidociv, Ohio, 2008, Checked in 12-11-2009. Diagnosed w/SCC left BOT. Completed treatment in October 2008. All scans have been clean. Only starting to eat now. Still w/PEG tube.
Oldejack, State and cancer unk. Reported 05-26-2009 only saying “I’m alive”
Pattyanny, New York 2009, Checked in 11-27-09. Undiagnosed primary head and neck in July 2009. Completed radiation
PBAILEY, Virginia, 2008, Checked in 03-25-2009, named Patti. Operation in November 2008. Esthesioneuroblastoma.
Pie123, State unk, 2007, Squamuous cell cancer behind the left tonsil
Pmfennell, NE/Florida 6 mos, Checked in 07-24-2009 after 6.5 years clear, Name: Pete
Paula002, Montreal, 2007, Nasopharyngeal
Slickwilly, Michigan, 2003. Difuse Large B-Cell Lymphoma. Checked in 01-20-2009, had 25 doses radiation in 12-2003
Sash, Florida, 1999/2000, Squamous cell carcinoma, stage 4, removed base of tongue. Checked in okay, Jan 20 2009.
Sassyque-Betsy, Pennsylvania, 2003, Cancer of the tongue, Checked in 01-22, Steeler fan, Checked in 07-29-2009 good and
SIRENAF42, Texas, 2008, Checked in 02-06-2009, Esthesionueroblastoma of the Ethmoid Sinus and Naspharnyx,,
Smithmama2, Georgia, 2009, Checked in 12-06-2009. Husband Kevin diagnosed Stage 4 SCC in base of tongue. Early
Souplady, Washington, 2009, Tonsil Stage 4 removed last Monday, checked in May 13, 2009
TereB, Texas, 1987, Milignant Paraganglioma (started as glomus jugulare tumor) still Fighting treatment
Wboaz, Oregon, 2006 Squamous cell cancer of left tonsil. Checked in 05-12-2009. Spot showed in right lung at followup.