| Joined: Jun 2015 Posts: 7 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Jun 2015 Posts: 7 | I find out tomorrow exactly what further treatment I will receive as far as I know the doctors want to do radiotherapy for sure whats uncertain is chemotherapy. Also the surgeons told me they took out nearly all the muscle on the left side of my jaw have I put that right in the signature.
Last edited by kjp37; 06-23-2015 12:06 PM.
2/3/15 Biopsy confirmed SCC on anterior tongue 2/6/15 Total glossectomy + Bilateral neck disection + resection of a lot of muscle on left side of mouth to mandable + partial pharyngectomy 22/7/15 2 x Cisplatin and 30 x radiotherapy
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Hi,
Most of the time chemo is used along with radiation so don't be surprised if that is recommended. It is usually a tolerable dosage but still will offer side effects. Good luck
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | 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 | I found chemo to be the least troublesome of the treatment but that really depends on you and how your body works. Other than a little nausea that was managed with the meds for three days after treatment I was fine. One thing... well two - if they give you cisplatin which is the standard, they will likely be giving you a hearing test which is no biggie. Also my hospital kept me in over night after administering it because it is hard on the kidneys. If yours sends you home... take in lots of fluids - i think that helped with the nausea as well. Hugs... (mind you running to the bathroom hourly was NOT fun... but it beats the alternative.
Keep strong.
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Ive noticed patients who have weekly smaller doses of chemo fare better than those who get the 3 bigger doses. Ask about this option at your next treatment plan appointment. 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: Jun 2015 Posts: 7 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Jun 2015 Posts: 7 | I will get radiotherapy and chemo and stay over night for the chemo also found out that the cancer is T4bN2CM0 and poorly differentiated seems like its quite bad. I had a ct scan today to make sure it hasn't spread to lungs I think I find out the results Monday
2/3/15 Biopsy confirmed SCC on anterior tongue 2/6/15 Total glossectomy + Bilateral neck disection + resection of a lot of muscle on left side of mouth to mandable + partial pharyngectomy 22/7/15 2 x Cisplatin and 30 x radiotherapy
| | | | Joined: Jun 2015 Posts: 25 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2015 Posts: 25 | KJP37, In the beginning I felt like I was getting one hit after another, too. Remember you are surrounded by a group of people who are here to support you every step of the way. One of the most difficult things for me to do in all of this is to not borrow trouble by worrying about the things I do not yet know. The waiting is terrible and there's no easy way around it. I'm trying to practice this by not worrying about the side effects of chemoradiation---I'm not there yet and worrying now will only take energy I need for the fight in front of me now. We're here to support you no matter what you find out on Monday!
DX 6/5/15 Stage 4a SCC left lateral tongue, tumor involves 90% of my oral tongue LVI and PNI identified Med Port and PEG 6/23/15 Started Cycle 1 of Induction Chemo (TPF) 6/24/15--3 cycles in total 35 External Radiation sessions and concurrent chemotherapy (2 additional rounds of Cisplatin) Brachytherapy Remission as of 2/17/16
| | | | Joined: Jun 2015 Posts: 7 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Jun 2015 Posts: 7 | Im not too worried about side effects although im sure they'll be something that might bring me down, im mostly upset that I lost my entire tongue and cant swallow. Also ct showed no metastases but I also found out I had involved margins and encapsulated lymph nodes
2/3/15 Biopsy confirmed SCC on anterior tongue 2/6/15 Total glossectomy + Bilateral neck disection + resection of a lot of muscle on left side of mouth to mandable + partial pharyngectomy 22/7/15 2 x Cisplatin and 30 x radiotherapy
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | You are going through a lot. So sorry to hear this. I'm sending you support from down here at the bottom of the world where it's raining like mad. Are you getting plenty of help from the hospital in terms of counsellors or therapists so that you can adjust to the effects of surgery and prepare for the chemoradiation?
Best wishes Maureen
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.
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hello, yes this is a hard situation to adjust too, but I know that you will get there. You still have the radiotherapy and chemo to do so be patient. The good news is your lymph nodes were Encapsulated and hadn't burst through. The radiation should destroy any of the cancer cells left as there weren't clean margins. No distant metastases is also fabulous news. Your goal now is to get through this next phase of treatment. Swallowing is not easy during the radiotherapy treatment. I do hope that you are under the care of a Speech language therapist. The SLT will be your best friend and advocate for swallowing. Are you swallowing anything at the moment? If you can, keep swallowing everyday as this is important for keeping the swallowing muscles active. It certainly is very possible to swallow after a total Glossectomy. It takes time and perseverance. Make that Speechie your friend. 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!
| | | | Joined: Jun 2015 Posts: 7 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Jun 2015 Posts: 7 | I can try sips of water but I still cough so I usually only try when with the speech therapist, there are certain times of the day when it feels like im swallowing my saliva but it seems impossible for most of the day
2/3/15 Biopsy confirmed SCC on anterior tongue 2/6/15 Total glossectomy + Bilateral neck disection + resection of a lot of muscle on left side of mouth to mandable + partial pharyngectomy 22/7/15 2 x Cisplatin and 30 x radiotherapy
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