| Joined: Nov 2010 Posts: 74 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2010 Posts: 74 | 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
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | 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
Last edited by Karen Rose; 12-17-2011 05:50 PM. 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
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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! ChristineSCC 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 | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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
| | | | Joined: Nov 2010 Posts: 74 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2010 Posts: 74 | 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
| | | | Joined: Nov 2010 Posts: 74 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2010 Posts: 74 | 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
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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.
ChristineSCC 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 | | | | Joined: Nov 2010 Posts: 74 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2010 Posts: 74 | 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
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | 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.
| | | | Joined: Feb 2012 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2012 Posts: 26 | 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
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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! ChristineSCC 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 | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | 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. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | 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 | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | 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 (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
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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
| | | | Joined: Nov 2010 Posts: 74 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2010 Posts: 74 | 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
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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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