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#177399 02-11-2014 07:46 AM
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Well, I received some bad news yesterday. After being a near 5 year survivor, I learned that the beast is back. This time, base of tongue, near the epiglottis. I see the ENT again tomorrow and we are talking about possible robotic surgery in Cleveland. I will know more then. Sorry to join this new club.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #177400 02-11-2014 08:36 AM
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Oh no!!!!! I am so sorry!!!! Please keep us posted on your options.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
zengalib #177414 02-11-2014 10:34 AM
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Thank you Christine. I certainly will.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #177420 02-11-2014 10:58 AM
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I responded to your other post... this really sucks I am so sorry... You'll get through this. HUGS...


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
zengalib #177425 02-11-2014 01:19 PM
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Know how it feels after such a long time. I'm back, it's back after four years. Life changes yet again.

Best of luck with the action plan and the surgery itself.



1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
zengalib #177439 02-12-2014 03:50 AM
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I am so sorry that you joined the recurrence club. I became a member nearly 5 years after my first diagnoses so I understand how you feel.

Best of luck. Please keep us posted. HUGS!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
zengalib #177450 02-12-2014 09:18 AM
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So sorry that you are part of the club. I do remember that when my husband was first diagnosed in 2012, the MO told us that as long as the cancer does not go below the collar, the doctors are confident that they can get it. I hope this will mean some comfort to you.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
zengalib #177454 02-12-2014 12:50 PM
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Wow. That totally sucks!! So now we dig deep and do whatever we can to get rid of the beast - AGAIN.

Mine came back within 3 years and while it is rare for it to come back after almost 5 years, it is not unheard of. That is why I NEVER say I am cured or cancer free. Despite the negative effect of "the jinx", the fact is that we all need to remain vigilant with oral cancer regardless of how long ago our first dx was.

I am now about 9 1/2 years since the end of treatment for the 1st cancer, and 5 years post end of treatment for the 2nd one.

You will get through this. Tell them to hit you with the best shot - you never want to see this devil again!! We are walking with path with you. Keep us informed.

Hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
zengalib #177481 02-13-2014 09:54 AM
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Thanks, everybody, I had an MRI yesterday, and have a PET scan scheduled for tomorrow. Then, next Friday I have a consultation with a doctor in Cleveland who is a specialist in surgeries for head and neck cancers. We will decide if I am a good candidate for robotic surgery. Since it would be less invasive than regular surgery, we are hoping that is an option.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #177484 02-13-2014 10:28 AM
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So sorry you are a part of the club. Keep us posted.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
zengalib #177501 02-13-2014 10:03 PM
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Wishing you the best in your treatment plan. So sorry that you have to deal with this AGAIN. Prayers, healthy thoughts and good vibes coming your way.

Best,
Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
zengalib #177771 02-25-2014 10:34 AM
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Update: I have exploratory surgery scheduled at University Hospitals (Case Western Reserve) for March 10. This will determine if I am even a candidate for the robotic surgery. Because of the radiation damage to my mouth, I can't open it that wide, so he won't know if he can use the robotic instruments until he actually tries to get in there. If the robotic is not an option, they will try the more "standard" surgery, which will involve opening up my jaw. My doctor is Dr. Rod Rezaee, who is the Director of Head and Neck Reconstructive Surgery at the Seidman Cancer Center at University Hospitals.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #177774 02-25-2014 12:56 PM
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I hope everything goes smoothly and as planned with your exploratory procedure. Its wise to always have a plan B which Im happy to see you already have in place. You can never be too prepared or plan too much.

Good luck!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
zengalib #177776 02-25-2014 02:24 PM
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So glad you have a few answers... fingers crossed that you can have the robotic surgery,.... stretch!!! ;o) before then. Cracking the jaw will not be fun! particularly after rads... very much hoping for option one. hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
zengalib #177784 02-25-2014 10:07 PM
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Well that is good news - a treatment plan.
I think we all feel slightly better about things when we have a plan in place.
Not long now. Take care.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
zengalib #178126 03-10-2014 04:00 PM
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Well, option one is not an option, I am afraid. The condition of my mouth and the invasiveness of the tumor make that impossible. Now I have two options. One is to do nothing and essentially give up. The other involves very invasive surgery which would also involve some major lifestyle changes. I would have a permanent feeding tube, and a permanent trache. I am not sure that I would ever be able to eat or speak normally again. I know that there are others on here who have faced similar challenges. I would like to know how you coped and are coping with them. I am not ready to totally give up yet. I have a new granddaughter due in April, and I would like to be part of her life if possible.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #178130 03-10-2014 04:53 PM
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Im so sorry the options are not what was expected! Please dont give up!!!! I almost did but the members of this forum helped me to see the big picture.... you cant quit without even trying. I have life long issues that I deal with on a daily basis which make some days harder than others. The important thing is Im still here, despite any lifestyle changes. What helps me to keep going is I help others. I refuse to focus on my own problems and sit around dwelling on any deficiencies I now have. I was never one to feel sorry for myself, instead I look on the bright side of things. Much of this is about the person you are inside..... that does not change no matter what else changes. As we get older, looks will fade and we all have our ailments but one thing will remain constant --- who you are inside. There isnt anyone who could change who you are and the good person you have inside of you. Not sure if this helped or not but it works for me so maybe it will for you too.

Hang in there!




PS.... My first grandbaby will be arriving next month. We will both be grandmothers together in only a few more weeks smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
zengalib #178131 03-10-2014 05:07 PM
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Thanks, Christine! You are an inspiration to all of us. I am in a handbell choir at church and the director called me this afternoon. I told her that I might be back to bell choir eventually, since I don't need to speak to play the handbells...I just ring! She said that they would keep my bell warm for me. I had been planning to stay home from my Kiwanis meeting tomorrow night, but I have rethought that. I think that I will keep going to the meetings at least until they schedule my surgery. Thanks again for your words of wisdom.

P.S. Congrats on being a new grandmother. Grandchildren are the best! Little Madeline Rose will join her 3-year-old brother Alexander on April 19.

Last edited by zengalib; 03-10-2014 05:10 PM.

Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #178133 03-10-2014 05:43 PM
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Well, I too am sorry this isn't quite what you were expecting.
When we got Kris's treatment plan we never in our wildest dreams were expecting that. I even contemplated killing us both off by driving into a tree on the 3 hour drive home. Of course I quickly dismissed that. Children to live for . Future Grandbabies to live for.
So we just got on with it. Has it been challenging? Definitely. But you know, there is still good life to be had. Kris does have a good and worthwhile life. He keeps very busy. Yes social contact is a lot more restricted and going out for dinner takes on a whole new meaning. But he accompanies me and enjoys the social interaction . We are planning a holiday in Vietnam again this year. So yes, life will still be worth living. You just make adjustments.
If you have any specific questions I can help with, just ask.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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I am over on my end the the states praying for you. I'm really sorry to hear what you will need to go through. Prayers for the best outcomes and the least challenging symptoms when it's all said and done. Hang in there.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
zengalib #178251 03-12-2014 05:36 PM
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I have not had some of the challenges you MIGHT be facing, but I can speak (pun intended) to not being able to speak well. I have about 1/8th of my tongue and my speech is somewhere between that of a hearing impaired person and someone who has had a stroke. In spite of this, I continue to try to speak regularly. I think you will find that there are some who will understand you fairly easily and those who cannot. I very much appreciate the extra efforts others make to understand. You get through. When your doctors are telling you all of the side effects, they are required to tell you about them all, regardless of which will probably apply to you.

Good luck, and hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
zengalib #178252 03-12-2014 05:42 PM
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Hun Do whatever you can to get through this. Do not let people tell you what you can or cannot do, do not let them limit you that way. Take what they say to be the worst possible scenario then move past that to achieve the maximum quality of life you can. Dr.s give you "Scary" (they told my father in law 6 months likely with the peg - after he had his esophagus removed and replaced with his stomach. His surgery was a month yesterday he's taking everything by mouth, only flushing his peg. If he maintains his weight it's coming out next week.) they always give you worst case scenarios do what you can to surpass their expectations - not for them - for you! HUGS.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Dear Zengalib, if your energy level allows it, there is no reason why you should wait to go back to your belling group.. My husband is a potter and he goes and works in his studio (it is really just our garage) everyday unless he has a medical appointment. He told me that it "fed his soul." Maybe belling can do the same for you. You also get to see your friends there.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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The only reason I haven't gone back to bell choir is that they are working on music for Easter, and hopefully I will be in the hospital or recovering from surgery by then. I hope to rejoin them in the fall, though. I have been going to my Friday morning coffee group, and my Kiwanis meetings. So, I haven't dropped out of everything.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #178287 03-13-2014 05:16 PM
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Hugs again... smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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That's good. It is important to keep busy and to keep those social contacts up.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
zengalib #178300 03-13-2014 09:26 PM
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I am so deeply sorry that you have had to deal with this monster popping up again. Never in my life would I think that I would find so many good, caring friends in the face of adversity and tragedy.

You are brave and I applaud you for keeping up with your social routine as you face your upcoming surgery. I fell apart both times when I was diagnosed and could not function at all. We all have our own way of dealing with things.

I hope that you have a great support system in place. Congratulations on the immanent arrival of your sweet granddaughter. Just think of how it will feel to hold her in your arms for the first time. That warm, tiny bundle of joy; a new life to live. Think of the wonderful smell of her tiny little head; one of the sweetest smells in the world.

Hang on to anything that keeps you going and makes you want to fight for your life. I think it's great that you already have plans to return to your bell choir after you recover some.

It's so incredibly hard, in so many ways. Even though I am a two-time survivor, I feel like I got off lucky compared to many on these forums.

I wish you all the luck one could have in this world as you endure this surgery and recovery. I wish I could say something more profound or comforting. I wish I could wave a magic wand and make everything go away. I wish that for all of us.

xoxo,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
zengalib #178305 03-14-2014 06:25 AM
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I am so fortunate that I have such a great support group. Not only my family and friends, but my church family and my community. I was the town librarian until I retired in 2011, and the community rallied around me 5 years ago at my first diagnosis. It was overwhelming. When I retired, there was an open house for me at the library, and even my congresswoman came. I live in a wonderful town with truly amazing people.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #178320 03-15-2014 12:01 AM
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Sorry to read that you are having a recurrence.
I have been keeping up to date both here and on FB!
It is great that you do have a wonderful support group around you.
Sending good vibes and positive thoughts as you go through surgery and recovery!
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

zengalib #178428 03-18-2014 04:51 PM
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Got a date for surgery. April 9. Not sure if it will be a total or partial laryngectomy or a total or partial glossectomy, but there will be some skin grafting, a feeding tube, and a trach. It will be a long haul, but doable.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #178440 03-18-2014 06:00 PM
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ZengaLib, I'm so sorry you're facing this after all you've been through. I hope it's a relief to have a date and a plan. You have so much to look forward to -- your new grandbaby, bell choir, friends and many good books -- You will get through this to enjoy all that and more. Come here and vent when the going gets rough, keep taking care of yourself, and you will be through this before you know it.

(((HUGS)))

Lynn


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
zengalib #178472 03-19-2014 07:34 AM
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I was glad to read that you feel the surgery is "doable." It speaks to your fighting spirit. Way to go!


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
zengalib #178484 03-19-2014 08:54 AM
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Okay I'm hoping and praying for a partial on all accounts. As for the trache hopefully it will be temporary. April 9 is okay... but if you are up for it ask them to put you on a waiting list in case they have a cancellation sooner, and get your preops done early to accommodate this possibility. Hugs and blessings to you.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
zengalib #178495 03-19-2014 01:35 PM
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I don't have to do pre-ops because I just did them before I had the exploratory surgery. I just need to have some bloodwork done, and that will be done next week. I also have to meet with one of my doctor's partners next week. I don't really think that it can be moved up, since it is an all day surgery with multiple docs. Right now I am looking at rehab facilities for after surgery.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #178496 03-19-2014 01:36 PM
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Thanks for everybody's good vibes and good thoughts.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #178525 03-20-2014 08:31 AM
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Hugs and feel better... hopefully they do what they do quickly get it all with minimal impact - and spring you. ;o) hugs my dear.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
zengalib #184863 09-05-2014 04:59 PM
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Update: I had the 11 hour surgery on April 9, was in the hospital for a week, then was transferred to a skilled nursing facility for rehab. I had a detour and had to return to the hospital for 5 days for a MRSA infection. I was in the rehab center until July 11, and have been home since then. I have a feeding tube and a trach. I see a visiting nurse now once a week and an SLP twice a week. I don't think that I will be ever able to eat normally, but I still have my vocal chords (or "vocal folds" as my SLP says), and I am able to say some short phrases and some words. I have a portable suction machine and a machine with moist air. I also have a hospital bed, so I can keep my head raised. The next step will be trying to use a Passy-Muir valve to help with my speech. I am trying to speak as much as I can, without having to write everything down. I really like my speech guy. It has been really hard (and still is) but I am hanging in there, even though I get tired.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #184869 09-05-2014 06:58 PM
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Thanks for posting your update. Its great to see your sense of determination at your recovery. Sounds like you have a long road ahead. I too used a possey muir valve trach. For me, it worked very well. I was lucky and only had my trach for 2 months.

There are some programs that my friend uses on her ipad where she types and it will talk for her. Im not sure what its called but it helps her communicate as she has no voice at all after having her voice box removed.

Keep up the good work and best wishes with your continued recovery.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
zengalib #184876 09-05-2014 09:46 PM
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iSpeech is a old one used a lot but IOS 5 and higher has it built in. Go to Settings, General, Accessibility, Speak Selection, On.va bit cheesier, but doable.

I'm glad to hear the update, too. You've done really well and I hope that continues. smile


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
zengalib #184880 09-06-2014 01:21 AM
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Kris uses Speakit in his IPad, when he needs too.
Pleased to hear you are doing okay.


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
zengalib #184881 09-06-2014 03:41 AM
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So glad to hear such an encouraging update! Keep up your fighting spirit! I have the IOS 5 on my iPhone and and it does very well with the speech function. It even has a selection for speaking rate that you can slow down (or speed up) to make words easier to understand, in addition to all the different language voices.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



zengalib #184892 09-06-2014 09:56 AM
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I have a couple of apps on my ipad for speaking, but it is just as easy to write it down. Sometimes the volume on the iPad isn't has loud as I would like. I am trying to use my voice as much as I can.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #184893 09-06-2014 10:11 AM
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One more thing...they got all of my cancer with my surgery, but one of my surgeons kind of wanted me to do 30 bouts of radiation, too...just in case. I decided not to do this. I already had 38 rads in 2009, plus 3 cisplatin. The surgeon admitted that the rads would slow down the healing from surgery, so I decided against it. I am going to have a baseline PET scan in November, so we will see what that shows.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #184899 09-06-2014 04:29 PM
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Hi, zengalib
I am very glad to hear from you! You have certainly had a tough six months, but are carrying on with your usual grace and courage. It's wonderful that the speech therapy is coming along, and that you like your therapist. The internet and all the new technologies are fine things in there own ways - but to speak with one's own voice is a blessing.
Very best wishes - and keep posting.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
zengalib #184984 09-08-2014 07:56 PM
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So glad you are doing well. (Or better - I'm surprised you didn't go with the rads though I hear you on the healing, smile hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
zengalib #184986 09-08-2014 08:31 PM
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Zengalib-I am glad to hear that you are doing well. I also hope you are enjoying your grandchildren! Babies=happiness. smile


22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
zengalib #185038 09-09-2014 01:57 PM
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I decided not to have the radiation, because I already had the rads 5 years ago. They really kicked my butt. This most recent surgery has made my original partial glossectomy and selective neck dissection look like a walk in the park. I didn't feel I could handle the radiation at this time, too. I did the whole bit in 2009 and the cancer still came back. I made the decision I did because I felt it was best for me. I am pushing 70, and have had a good life, so I am comfortable with this decision. I am enjoying my beautiful grandchildren, and was glad to be able to live to see them born.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #185058 09-09-2014 10:33 PM
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Kris was not offered any radiation after his surgery. I did ask. We were told that radiation had not worked for Kris, so why have more.
Knowing what I now know about increased effects of more radiation I'm kinda glad .
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
zengalib #185070 09-10-2014 07:26 AM
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Makes total sense Zen. I hear you on the rads. And it would definitely be a long haul and probably have a big impact on quality of life. fingers crossed it's gone for goood!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
zengalib #185075 09-10-2014 10:39 AM
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Hope all finds you well. Your decision sounds best for you, lets hope the Beast is gone and you have a very long life!!!Keep up the good fight. Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
zengalib #185079 09-10-2014 06:23 PM
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It's always comforting to know when we have made the right decisions for ourselves. Keeping all good thoughts for you.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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