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#144035 - 12/17/11 06:25 PM Its back!!!!
plantgirl Offline
Supporting Member (50+ posts)

Registered: 11/02/10
Posts: 74
Loc: North Carolina
After 2 months of complaining of pain and increasing trismus, my Drs finally ordered a CT scan and found a spot behind my left jawbone. I had biopsy and sure enough the cancers back. Saw my ENT Dr last week and they have decided that my treatment will be Chemo followed by surgery in which he will remove my jawbone and while Im on the operating table they will give me a blast of radiation to that area. He assured me that this is completely cureable but its extreme to say the least. Im going to do it because at this point the pain is killing me, I cant eat or sleep and the pain meds theyve given me havent touched it.Ill be seeing my Chemo Dr , Radiation Dr and a Pain management Dr on Monday so I will let you all know what happens then.
_________________________
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16

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#144039 - 12/17/11 11:11 PM Re: Its back!!!! [Re: plantgirl]
Karen Rose Offline
"OCF Down Under"
Platinum Member (300+ posts)

Registered: 03/13/08
Posts: 402
Loc: Melbourne, Australia
plantgirl,

Sorry to hear the cancer is back. After you meet the Pain Management Doctor Monday, and have the pain under control, I would recommend a second opinion. Pain clouds good decision making. A second opinion is a must!


Karen


Edited by Karen Rose (12/18/11 12:50 AM)
Edit Reason: typo
_________________________
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery

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#144044 - 12/18/11 02:37 AM Re: Its back!!!! [Re: Karen Rose]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9206
Loc: PA
Sorry to hear you will have to go thru so much with your recurrence. I have also had my lower jaw removed. Its not easy but it can be done. Please let me know if there is anything I can help you with regarding this type of surgery.

Best wishes!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#144052 - 12/18/11 06:38 AM Re: Its back!!!! [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Sorry it's back but thankfully you caught it quickly and as they said its curable!!! Good luck...
_________________________
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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#144121 - 12/20/11 10:50 PM Re: Its back!!!! [Re: Cheryld]
plantgirl Offline
Supporting Member (50+ posts)

Registered: 11/02/10
Posts: 74
Loc: North Carolina
I saw my Chemo Dr Monday and she explained to me that they would start the Chemo 1st week in January and the surgery would depend on how my cancer responds to the Chemo.Hopefully the cancer will stay in one place. Also saw my Rad Doc and he went over the plan to radiate me at the surgery site. Also saw the Pain management team and they are very helpful getting me the right pain meds to alleviate some of this pain. All in all it was a very informative day and they all were very patient with me and all my questions. It helps so much when you have complete faith in your Drs as I do.
_________________________
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16

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#144918 - 01/22/12 04:30 PM Re: Its back!!!! [Re: plantgirl]
plantgirl Offline
Supporting Member (50+ posts)

Registered: 11/02/10
Posts: 74
Loc: North Carolina
They have finally given me my surgery date. Its going to be Feb 27th.I was really hoping it was going to be sooner, this waiting is driving me crazy!! I'm still have 3 more Chemos to do.Cant wait for that to be done with.
_________________________
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16

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#144924 - 01/22/12 09:36 PM Re: Its back!!!! [Re: plantgirl]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9206
Loc: PA
Wishing you all the best with your surgery. I know having a mandibulectomy is not an easy surgery. It has a long recovery period. Please let me know if I can answer any questions about a mandibulectomy. Wishing you all the best with everything you are going thru.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#146398 - 02/25/12 08:34 PM Re: Its back!!!! [Re: ChristineB]
plantgirl Offline
Supporting Member (50+ posts)

Registered: 11/02/10
Posts: 74
Loc: North Carolina
I will be going in for my surgery on Monday. Part of me is scared too death as my Dr has told me this is going to be at least a 10 hour surgery. He also said I will be in the hospital for about 10 days. Hopefully this will be it.
_________________________
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16

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#146399 - 02/25/12 09:05 PM Re: Its back!!!! [Re: plantgirl]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 942
Loc: Ohio
We will be pulling for you on Monday! It sounds like your team is on the ball with the combination therapy. It's a big surgery but you are a strong woman. Best wishes and prayers.
_________________________
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.

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#146408 - 02/26/12 01:35 AM Re: Its back!!!! [Re: plantgirl]
mick Offline
Contributing Member (25+ posts)

Registered: 02/16/12
Posts: 26
Loc: boston,ma
you won't remember the surgery, and there will be no pain because they have come a long way in pain management. my last surgery was 12 hours and it is what it is. hang in there, better days ahead
_________________________
after 3 sarcma flr mouth,fially removed, reconstruct from thigh muscle. 1/2 saliva glands removed, plus more glands than i can remember

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#146409 - 02/26/12 02:45 AM Re: Its back!!!! [Re: mick]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9206
Loc: PA
It is a big surgery. Its not an easy one. But it can be done. When they take you back for surgery, then next thing you know is waking up in your room. In time the whole thing will be just a blur. I wish you all the best with this!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#146412 - 02/26/12 05:37 AM Re: Its back!!!! [Re: ChristineB]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 592
Loc: MA
Best of luck with your surgery on Monday. I'm so sorry that you have to go through this. None of us should have to suffer like this. The good news is that there is a good prognosis for a cure. Look at all that Christine has endured and her signature amazes me every time..."very happy to be alive". Draw on her strength and others than have gone before you.

I hope that you have the best possible outcome and that your recovery is smooth sailing! You will be in my thoughts on Monday and the days following. Please keep us posted with your progress as you are able.

Your friend in OCF,
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.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!

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#146415 - 02/26/12 06:32 AM Re: Its back!!!! [Re: Kerri]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Just wanted to tell you I will say a prayer for you for Monday's surgery and pray that will be the end of your surgeries - NO MORE recurrances, EVER. Good luck, and let us hear from you when you can to let us know how everything went.
julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#146424 - 02/26/12 03:19 PM Re: Its back!!!! [Re: julieann]
AnitaFrances Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/25/09
Posts: 694
Loc: Media, PA
Best wishes as you prepare for your surgery tomorrow. My husband had a mandibulectomy, too. That was over 3 years ago and he is doing great. Your team sounds like they have everything covered especially pain relief. You are in good hands and have OCF friends supporting you.
_________________________
Anita (62)
CG to husband, Clark, 72,
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

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#146429 - 02/26/12 04:29 PM Re: Its back!!!! [Re: mick]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Good luck, will definitely say a prayer all goes well!
_________________________
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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#147050 - 03/12/12 12:14 AM Re: Its back!!!! [Re: Cheryld]
plantgirl Offline
Supporting Member (50+ posts)

Registered: 11/02/10
Posts: 74
Loc: North Carolina
Thanks for all he wellwishers. I came home Tuesday night...they.did take the tracheotomy Tube out but I haves e my feeding tube still in. My face is so swollen,I resemble the elephant man and I have a huge hematoma on my right leg where they took tissue for my mouth. Ive been doing pretty good moving around but I get so tired,all I want to do is sleep. Any suggestions for the lump on my leg? Cold or warm compresses or do nothing? Still hurting like hell but it gets a little easier every day.

_________________________
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16

Top
#147051 - 03/12/12 01:40 AM Re: Its back!!!! [Re: plantgirl]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Congrats in getting though it your strong as heck! I wish I had advice for the leg but I'm sure someone will be along... Good luck! Hugs and heal well.
_________________________
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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