ROLL CALL, January 2010

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  • victor53
    victor53 Member Posts: 97
    #42
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    HAWVET said:

    Thank you. Also Victor 53 welcome back
    Thank you all for posting. My best wishes to all and hope to see you back for roll call in July.

    Victor 53, I was answering a PM. I mentioned your name to the person since I remember you were supposed to return from Costa Rica early this year. You had not checked in and was hoping you were still okay.

    Thanks Hawvet i am answering
    Thanks Hawvet i am answering that email now ... I stay out in jungle and away from computers for a couple months hear and there.
  • Christmas
    Christmas Member Posts: 100
    #43
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    Roll Call
    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.
  • naturenaw
    naturenaw Member Posts: 26
    #44
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    roll - checking in late!
    naturenaw, NC, 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!
  • wifeforlife
    wifeforlife Member Posts: 189
    #45
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    naturenaw said:

    roll - checking in late!
    naturenaw, NC, 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!

    Roll Call
    Kansas City MO, 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!
  • finz2lft
    finz2lft Member Posts: 43
    #46
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    Roll Call
    Finz2lft(Buffet fan) Lloyd Whitfield North Carolina Squamous Cell base of tongue and left lymph node malignant treatments start Tuesday July 13, 2010 I am here today, great idea for roll call
  • Irishgypsie
    Irishgypsie Member Posts: 333
    #47
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    finz2lft said:

    Roll Call
    Finz2lft(Buffet fan) Lloyd Whitfield North Carolina Squamous Cell base of tongue and left lymph node malignant treatments start Tuesday July 13, 2010 I am here today, great idea for roll call

    Roll Call
    Charles 38 will 39 in 2 weeks. Rochester, NY. 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!
  • lady4darknight
    lady4darknight Member Posts: 90 Member
    #48
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    Irishgypsie said:

    Roll Call
    Charles 38 will 39 in 2 weeks. Rochester, NY. 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!

    Roll Call
    Debbie age 50..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. This will not beat me, I will beat it. Mother of 5, Nana to 7 and not giving up.
    I am from Mtn. Grove Missouri and was diagnosed April of 09...sorry about that.
    Debbie
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #49
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    roll call
    Hi, this is my first roll call. I'm 54 and live in Cincinnati, OH. I was 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.
    This was a wonderful idea and I thank you very much for doing this.

    Now with the buiness out of the way, HAW VET are you up for some company?, I want to visit Hawaii again :0) hehehehe

    God bless each and every one on here.
    debbie
  • dogsrule
    dogsrule Member Posts: 96
    #50
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    debbiejeanne said:

    roll call
    Hi, this is my first roll call. I'm 54 and live in Cincinnati, OH. I was 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.
    This was a wonderful idea and I thank you very much for doing this.

    Now with the buiness out of the way, HAW VET are you up for some company?, I want to visit Hawaii again :0) hehehehe

    God bless each and every one on here.
    debbie

    roll call
    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.

    I rule, not the cancer.

    God Bless everyone.
  • meinken
    meinken Member Posts: 38
    #51
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    new to roll call
    Mark, Georgia, first diagnosed jan/2010, NPC (can't spell nasopharengyl!). I 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. I presume the stone was just bad timing and had nothing to do with the cancer. So I was given the last 3 weeks off to rest for radiation. I received 35 radiation treatments and 7 more chemos(chemos scheduled but only got 5 of them). Rads Monday thru Friday for 7 weeks and the chemo each Monday. I 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).

    But I feel well and have my first pet scan scheduled for this Friday and an appt. with my medical oncologist to discuss the results on Monday. Gonna be a long weekend.
  • tonyanddenise
    tonyanddenise Member Posts: 70
    #52
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    another newbie!
    Hey there! Tony from central Ohio. 48yo. Denise is my lovely bride. diagnosed 5-20-10. primary found in "L" tonsil labeled as follows,T1N2BMO=4A.Not exactly the stage I wanted to be on! 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. cisplatin, taxol, and the other by products once a week for 7 weeks to start. rad every day they say from just below clavicle to ears. Yeehaw!
    trust me I am scared too!
  • tonyanddenise
    tonyanddenise Member Posts: 70
    #53
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    JGE said:

    1st time rollcall
    Diagnosed Aug. 2008 BOT w/ 2 nodes. 2 Nodes removed for biopsy. SCCHN. Chemo and Rads. PEG and Port. Total HELL til Nov 2008. Returned to work 1/5/2009. All scans clear. Still here as of 3/15/10!

    Other info. Port and PEG removed within 6 weeks of treatment end. Taste is better than 85%, Saliva is about 60%, fluctuates but is tolerable. Mild soreness in neck/Jaw area. Mild persistent cough (starting to concern me). Teeth still good (none removed), Lost 45 pounds total and got back 30 but can't gain any more weight no matter what I eat. Mild depression, fear and worry remain.

    Next PET 3/16/10 (2moro). Wish me luck!

    GOOD LUCK!

    GOOD LUCK!
  • dennis318
    dennis318 Member Posts: 349 Member
    #54
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    HAWVET said:

    Update to roll call
    Thank you to those who have checked in. If you are already registered and have not checked in since January of this year, please give a short updated status.

    For those registering for the first time, please include your home state, year cancer started, type of cancer if known, and status of treatment.

    A complete update is posted every six months. The next roll call is in July 2010.

    Aloha,

    Johnny

    Roll Call
    Diagnosed November 2009, Stage IV, throat cancer, vocal, radiation and chenmo ended Feb.25, 2010. Location, Spring Hill Tn, 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..........i refused to have everything stripped out and a hole for life...thats a cheap fix...Dennis
  • HAWVET
    HAWVET Member Posts: 318
    #55
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    tonyanddenise said:

    another newbie!
    Hey there! Tony from central Ohio. 48yo. Denise is my lovely bride. diagnosed 5-20-10. primary found in "L" tonsil labeled as follows,T1N2BMO=4A.Not exactly the stage I wanted to be on! 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. cisplatin, taxol, and the other by products once a week for 7 weeks to start. rad every day they say from just below clavicle to ears. Yeehaw!
    trust me I am scared too!

    Roll Call Update
    Hi all,
    Thank you for the recent postings. I just happened to log on since I was in the process of updating the list. I did not realize roll call had been brought up to today. Truthfully, I seldom post, but I knew it was time for roll call. I have not had a chance to read your recent posts, but will do so in the next few days. It is almost 11 PM here and getting ready to go to bed.
    I had updated some of the earlier 2010 posts and have noted that many new places/faces. Many have not returned to the boards. I should have the updated list posted next week.
    Aloha, Johnny
  • CLRRN
    CLRRN Member Posts: 127
    #56
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    Roll Call
    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.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #57
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    dogsrule said:

    roll call
    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.

    I rule, not the cancer.

    God Bless everyone.

    Happy Birthday
    Hoping for many more...

    Best,
    John
  • Pam M
    Pam M Member Posts: 2,196
    #58
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    PamM Update
    dx 10-24-09 at age 44 SCC BOT Stage IV, T2N2. Open 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. Amifostine injections for first half of radiation, until allergic reactions got too bad.CT/PET done 06-28-10, results 07-02-10. Primary and formerly very large node now non-issues. Formerly enlarged node still slightly enlarged (but smaller than before), and showing slight metabolic activity on PET (SVU was 9, now 2). RO recommends no neck dissection at this time - doing a watch and wait on the node still showing activity. All food in by mouth since May. PEG will be removed 07-27-10. Lost nearly 70 lbs during tx - OK, since I went in 80 lbs overweight. Seems my body tolerated tx very well. Still dealing with eating/saliva/throat issues, but I'm only four months out.
    Hoping we all do well.
  • davidgskinner
    davidgskinner Member Posts: 81
    #59
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    Pam M said:

    PamM Update
    dx 10-24-09 at age 44 SCC BOT Stage IV, T2N2. Open 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. Amifostine injections for first half of radiation, until allergic reactions got too bad.CT/PET done 06-28-10, results 07-02-10. Primary and formerly very large node now non-issues. Formerly enlarged node still slightly enlarged (but smaller than before), and showing slight metabolic activity on PET (SVU was 9, now 2). RO recommends no neck dissection at this time - doing a watch and wait on the node still showing activity. All food in by mouth since May. PEG will be removed 07-27-10. Lost nearly 70 lbs during tx - OK, since I went in 80 lbs overweight. Seems my body tolerated tx very well. Still dealing with eating/saliva/throat issues, but I'm only four months out.
    Hoping we all do well.

    David S roll call
    46 years old. 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.
    Peace to you all...
  • Clearblue
    Clearblue Member Posts: 186
    #60
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    davidgskinner said:

    David S roll call
    46 years old. 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.
    Peace to you all...

    for me for my Wife
    MY WIFE : 45 yr young Fanconi Anemia Warrior- CHEMO ruled out and RAD T generally not recommended.
    2001- base of tonge 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 now.

    No words can describe how great you all are.
    Clear.
  • GraceLibby
    GraceLibby Member Posts: 88
    #61
    Options
    New to Roll Call
    Renton, WA - 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.

    Taking things one day at a time!

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