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ROLL CALL ENROLLMENT OR SIGNING BACK IN.

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Roll call was established a couple of years ago so individuals can briefly view the status of all those who were treated for head and neck cancer. As a newbie, you may also find individuals who have a similar illness and direct questions by a private message available on this forum.

If you are enrolling for the first time, please provide the name of your state, the date of your cancer (month-year okay), name or description of your cancer, treatment received and your status.

If you are already enrolled, please update your status.

With slight editing, I am now copying and pasting the information you provide under your name in Roll Call.

TonyG5003
Posts: 5
Joined: Jul 2010

Hello... I'd like to participate

39 y/o male, Texas. Diagnosed, Stage 1 Laryngeal Cancer SCC, T1aNoMo May 2010. Nonsmoker, "non-drinker" - HPV status unknown at this time. Surgery to remove polyp/tumor, currently undergoing Radiation Therapy.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi HAWVET,

Tx for doing this.

My details are are follows:

Scambuster, Location China / Hong Kong, Dx was Aug 2009 for SCC of left Tonsil Stage 1. Had surgery then IMRT & Erbitux. Scan in Dec 2009 all clear. Doing great now.

Tx again
Scambuster

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

in the Quad Cities of the midwest.
NPC w/unknown Primary. Treatment 2-4/09, with Cisplatin/FU5 pump infusions, and full H&N rads x 31, and 3 partial-rads. Clean PS/CT in 7/09, 4/10, and my next is to be 4/11. PEG for 15+-months, and still have the Power Port. Returned to work 1-month after my last rad, and my 2nd-Chance at life is very good.
kcass

and, yes, thank you for this thread Hawvet, the Elder of us all

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

Joel from just outside of Rochester NY.
Diagnosed in early April with SCC Unknown Primary after finding a swollen lymph node in left neck. Surgery in late April, tonsils removed as well as 42 lymph nodes, pathology revealed T-O, N1 M-O. Surgery only with first post treatment scans next Friday.

Joel

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Skiffin16 - John
Central Florida
Diagnosed Right Tonsil Cancer STGIII HPV+ ~ 2 January 2009
Cisplaten, Taxotere & 5FU - nine weeks then Carboplaten & Daily Radiation - seven weeks
Tonsils removed, Port Installed, No PEG
First PET & CT's clean to date
First annual PET ~ 22 July 2010 - waitng for results....

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Howdy. Mick here in Sonoma County California. Dx Dec 2009 scc unknown primary (suspected nasopharynx), nodal involvement right side. Surgery Jan 2010 to remove gross disease (7 out of 50 nodes removed were diseased, micro extension) followed by rads (35) and cisplatin x3 ending April 1 2010. PEG installed March 31.

June 28 PET/CT found no evidence of disease. Drs happy (me too).

Still can't swallow as of today. Drs contemplating dialation in a few weeks. Back to doing everything except work (I'm an MFT) due to muchos mas mucus. Otherwise am doing all I did before.

Best,

Mick

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

Hello all

Deb L, central California, Sierra foothills. Diagnosed in January of 2010 with SCC at base of tongue, T1N2c, with mets to lymph nodes on both sides. Surgery to remove a 3-cm lymph node from the right side of neck in mid-January of 2010. MRI, PET-CT and then full endoscoping, and surgery to remove tonsils, and biopsy of base of tongue in mid-February. Started 38 IMRT radiation treatments and 3 rounds of cisplatin chemotherapy in mid-March. Currently ten weeks out from end of treatment. Just had a follow up MRI at Stanford yesterday. MRI showed one inflamed lymph node in left side of neck. Doc says it is to be expected. Nasal scoping and palpation of base of tongue are negative. The real answer will come in another four weeks with completion of first follow up PET-CT. Doctor is very happy with my current status. Goal is complete cure of cancer and a disease-free life. First eighteen months are the most critical.

PEG tube removed at end of June. Weight is stable. Muscle mass is slowly returning. Taste is returning, although I cannot taste sweet. Loving fruits and veggies and olive oils. I still have ZERO saliva, but remain optimistic. Can't yet swallow breads and pastas. Meats are very slow. Taste for desserts, wine and beer is completely gone - a good thing.

Life is good. I get it now. Cancer warriors are beautiful people.

Deb

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Hi all,

Debbie, Mtn.Grove, Missouri so. central Ozarks. Mass at base of tongue found Aug. of 08, diagnosed B cell lymphoma BOT and both tonsils. 5 surgeries,trache, PEG, Port, all placed. Started 20 rads May 27th, finished June 23. Back to Tulsa Aug. 2 with MRI and CT scans on the 3rd. 5 weeks post and feeling better. Some taste of returned-still no coffee. Some saliva back. Able to eat and swallow slowly. Life is better. Enjoying my kids and grandkids. Looking forward to planning my wedding.

Debbie

SASH's picture
SASH
Posts: 277
Joined: Apr 2006

I'm still here, still NED. Past the 10 year mark.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Great SASH, love hearing stories as yours....

up2myneck's picture
up2myneck
Posts: 2
Joined: Apr 2010

61 yo male. First time July of 2008 , went thru chemo & rad. Cancer free in April 2009.
Reoccurred March 2010. Under went chemo, Mass did not go down in size enough to operate.
Will have a ct of neck 09/29/2010; oncologist on 10/06/2010, to see what our next options
are. Mean while trying to get some strength built back up!

Fire34
Posts: 351
Joined: Feb 2010

Dave , Illinois 60 miles south of Chicago.
Diagnosed June 09 with unknown primary HPV+. Enrolled in clinical study at U of Chicago. Eight weeks of induction chemo(Taxol,Carboplatin&Erbitux) then 5 alternating weeks of chemoradiation(twice daily) with 5FU(120 hrs), Hydroxyurea & Erbitux. Currently eight months post. First PET and follow up CTs negative. Had PEG removed approx 3 months post, port was removed about 2 months post(infected)
Saliva is slowly returning except at night. Taste is getting better. Strength is getting better as time goes. Best Wishes & Prayers to everyone
Dave

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Steve T. 30 miles west of Fort Worth, Texas. Dx Jan 8th 2010, SCC right tonsil with mets to lymph nodes. Right neck dissection, tonsillectomy and 30 nodes removed. Weekly cisplatin and 5FU. 33 Rads ending April 9th. Peg removed in June. Doing relatively well
eating more and more and all in all things are good!!

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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. Left salivary gland also removed. 30 IMRT, 200 CGY per day. 6,000 total, 5000 reg, and 1,000 neck boost 4-6-09 to 5-15-09

Had two dialations but still have problems swallowing due to radiation damage. Stricture in esophugus. Still have hardly any saliva. Still have peg tube due to problems eating. Tongue still feels scalded. Taste is still not normal.

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

writing for my spouse:

Glenn, 58yr. old smoker (quit after dx)
CT scan for large lymph node, rt. side 3/25/10
Needle biopsy 3/?/10
Diagnosed with SCC on 4/7/10
Pet Scan 4/12/10
Panendoscopy 4/19/10
Undisclosed Primary
Radical Neck Dissection 4/26/10 - 2 out of 25 Lymph nodes positive
T0N2aM0 HPV+
Teeth Extracted (all of them) 5/21/10
PEG Tube 5/28/10
30 IMRT Radiation begun 6/10/10 (would be done now but TOMO machine down x3)200GY on right side and 180GY on left side
Carbo/Taxol x3
Two more Rads to go

rush1958's picture
rush1958
Posts: 197
Joined: Jul 2010

51 year old male: 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.

All treatment completed at the University of Kansas Medical Center - Kansas City, KS.

Home state: Kansas

GraceLibby's picture
GraceLibby
Posts: 88
Joined: Jul 2010

Hello all -

I'm a newbie to this special club. Renton, WA, age 36, married, one son.

Stage 3 SCC, right tonsil primary, spread to level 2 lymph nodes. Partial right neck dissection on 7/1/10. Treatment plan is still pending. HPV status unknown atm.

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

Mike (my partner)
52yr old (former smoker-quit day of dissection)
Maryland: 20 miles east of Annapolis
Treated at Anne Arundel Medical Center
Left tonsillar Basoloid SCC T2N2bM0 (Stage 4a) HPV negative
PET 3/9: + left neck, left tonsil and activity on right neck (nothing palpable) and suspicious area under left clavicle (again-can’t feel it)
3/19 Left neck dissection; tonsillectomy. 2/42 lymph nodes +
PEG 5/5
4/26-6/17 38 treatments + boost treatments to clavicle area
3 doses of Cisplatin (4/26, 5/17 and 6/7)

To all the H/N patients-your strength and perseverance is amazing. God bless you all!!

backachedp
Posts: 124
Joined: Oct 2009

Diagnosed 9-29-09 4 rounds of chemo 35 Rads. Cancer Free as of May 21 2010. Still cannot eat most foods..soups..yougert,mashed potatoes lot's of gravy...peg taken out..loosing weight other then that Bob is doing pretty good. Any sugestions on soft foods that can help him to get some meat on his bones? He can't eat Oatmeal..chokes. Has no taste at all no saliva. Can't drink out of a straw has anyone else had this problem? Bob was treated at The University of Mn Fairview Hospital.

DJG1
Posts: 122
Joined: Jun 2010

Stage 3, with one lymp node on right neck (HPV Negative) in April '10. Doctors tried to remove tonsil, but due to location of tonsil, it was not possible. confirmed pet/ct scan on June 1, 2010. Have elected to decline rediation and chemo treatment. Working on reducing acid diet, taking supplments, enjoying the normal for as long as i can, hoping for the best.
Female, 54 yrs , louisville, ky

Hondo's picture
Hondo
Posts: 5712
Joined: Apr 2009

Still having problems with low blood pressure and PET scans coming back positive, good news I am 8 years from the first treatment and 5 years from the second.

Thanks too all for your prayers

staceya's picture
staceya
Posts: 701
Joined: Jan 2010

Stage 1 SCC dx 12/24 (boo..)
HPV+
No nodes
No mets
No peg
No chemo
Did Amifostine
35 Rads
Small Surgery
Finished 3/9

Taste JUST now 75% or more back on certain foods
Saliva Pretty good-can't tell if it the Amifostine or not
Teeth Still there
Weight Up 5 pounds (all in the wrong places) down 10 from baseline.
Hair Coming back

Things have really improved just in the last 3/4 weeks.
Thank God for all of you on this forum..it has been a blessing!!

finz2lft
Posts: 43
Joined: Jun 2010

STAGE 4
LEFT LYMPH NODE
BASE OF TONGUE
HAVE PEG
2 Rads fini
1 CHEMO rini
TRYING TO SAVE 2 SALIVA GLANDS--NO AMIFOSTINE

FEELING OK SO FAR

TO START TUBE FEEDING TO ADJUST BODY A COUPLE OF TIMES A DAY

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

Doug Bernstein
North Carolina (Lake Norman / Mooresville)
July, 2010 diagnosis
Laryngeal squamous cell carcinoma
T2N0M0
Haven't started treatment yet

Silver_Foxette's picture
Silver_Foxette
Posts: 137
Joined: May 2010

I live in Indiana...and am 55 yrs young ;)...I had vocalcord cancer , stage 2...I quit smoking 10 yrs prior to my cancer discovery... January 2009 I did 33 rounds of rads...I had to have my vocalcords,voicebox and 1/2 of my thyroid removed on June 9,2009 ...Because rads did not kill the BEAST !...Also am known as a "neck breather"...I have had trouble with swelling and leaking of liquids through my prosthesis in larynix...so I usually keep it plugged , which allows no speech ...when I am able I use a Blom Singer Button... Its been a journey indeed and am now growing into the NEW normal me :)) * I would enjoy keeping in touch with other total Laryngectomy such as myself .God bless you as you travel your journey.* I am also a 30yr cerval cancer ,stage 3,survivor .I ACTUALLY JOINED ON NOVEMBER 19, 2009 BUT HAD TO CHANGE NAME FROM "Silver Fox" TO PRESENT "Silver_Foxette". YOU MAY READ MY 'About Me' post at Silver Fox .I did not transfer info to Silver_Foxette { I do not know how to do that ;-/.....* I apologize for any confussion !

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

Chuck 48 yrs. old, Cypress, TX, grew up in Visalia, CA, lived in SoCal 15 yrs.
On Jan. 14, 2010 had a suspicious lymph node removed
Path returned positive for SCC, HPV+
Referred to M.D. Anderson Cancer Center
Feb. 19, 2010 had surgical biopsies of base of tongue, tonsils. Also direct laryngoscopy and cervical esophagoscopy. Also had one tooth pulled and mandibular tori removed.
No mass found, biopsies negative.

Final staging: T0Nx(N2b)M0. Unknown primary.

March 15, 2010 began treatment. 33 rads, with weekly Cisplatin (7 doses)
No PEG
April 29, 2010 treatments completed. Lost 30 pounds.
June 10, 2010 CT scan. All clear, no sign of C.
August 3, 2010: back at work almost full time. Taste is 75%, salvia zero. 90% of calories coming from food, 10% from Ensure. Don't sleep well, but energy level is better each week. Consult for "turkey neck" this Friday.

Overall...doing GREAT.

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