ROLL CALL ENROLLMENT OR SIGNING BACK IN.

HAWVET
HAWVET Member Posts: 318
edited March 2014 in Head and Neck Cancer #1
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.
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Comments

  • TonyG5003
    TonyG5003 Member Posts: 5
    Hello... I'd like to
    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
    Scambuster Member Posts: 973
    New enrollment
    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
    Kent Cass Member Posts: 1,898 Member

    New enrollment
    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

    Still here
    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
    Joel4 Member Posts: 263 Member
    Kent Cass said:

    Still here
    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

    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
    Skiffin16 Member Posts: 8,305 Member
    Aloha & Mahalo
    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....
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Updating my status...
    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
  • SASH
    SASH Member Posts: 421 Member
    Waving Hands in the Air
    I'm still here, still NED. Past the 10 year mark.
  • up2myneck
    up2myneck Member Posts: 2
    new
    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
    Fire34 Member Posts: 365
    up2myneck said:

    new
    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!

    Update
    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
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    SASH said:

    Waving Hands in the Air
    I'm still here, still NED. Past the 10 year mark.

    Awesome
    Great SASH, love hearing stories as yours....
  • stevenl
    stevenl Member Posts: 587
    Fire34 said:

    Update
    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

    New Info
    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
    sweetblood22 Member Posts: 3,228
    Fire34 said:

    Update
    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

    Still kickin'
    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
    miccmill Member Posts: 248

    Still kickin'
    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.

    Still in treatment
    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
  • lady4darknight
    lady4darknight Member Posts: 90 Member
    D Lewis said:

    Updating my status...
    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

    Update
    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
  • rush1958
    rush1958 Member Posts: 221 Member
    Check In
    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
  • micktissue
    micktissue Member Posts: 430
    carrying on
    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
  • GraceLibby
    GraceLibby Member Posts: 88
    New to Roll Call
    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
    CLRRN Member Posts: 127
    Updating Status
    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
    backachedp Member Posts: 132
    Minnesota/Bob
    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
    DJG1 Member Posts: 121
    Stage 3, with one lymp node
    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