| | Joined: Mar 2011 Posts: 7 Member | OP  Member
Joined: Mar 2011 Posts: 7 | Hello Everyone,
My name is Cindy and I had Squamous Cell Carcinoma in my mouth (well tonsil, tongue and lymph nodes) In the Spring of 2002. I went through months of Chemo and Radiation. That was the easy part,
Now I have trismus, and a trachestomy because now I have bi-lateral vocal choral paralysis. I have to sit in the oxygen chamber 2 hours a day for month because now I need to have a tooth extracted, just had 2 cavities filled and 2 root canals, now i need crowns, and of course insurance does not cover that.
I have extreme dry mouth still and take a couple different meds for it. Eating is hard as I cannow open wide enough to chew and I have problems swallowing.
But I beat the cancer!
Hug
CIndy
SCC Stage 2 - April 2002
Of Tongue, Tonsil, Lymph Node
Surgery, Radiation, Chemothearpy
Trismus
Trach Tube - Feb 2008
Difficulty Swallowing and really bad dry mouth
Married With 2 Fur Babies Simba & Shadow
Happy to be surviving!
| | | | | 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 | Hi Cindy! Welcome to OCF! Im right there with you on the trismus. It stinks but we have to deal with it. Sorry to her you have a trach. Ive had one of those too, but only for about 2 months. Ive also done 125 HBO, so we are very much alike  I really liked your post! We all end up with all kinds of little lovlies as after effects. Things we just have to deal with. Keep that upbeat attitude
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Welcome to OCF. I just completed 30 HBO dives, and looking like I may get to do more. I am so happy you beat cancer. Now comes the after effects of treatment. Are some of the things you mentioned you had late effects of treatment?
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
| | | | | 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 | Welcome and god bless! you are truly a survivor. 9 years that is fantastic and inspiring - despite the side effects, you are here.
Take care.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Cindy, you have heard from the wisest and a real survivor. Christine is my hero and I hope I can hold up for the next few months as well as hse did. 3 years down and I hope a few more to go.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Cindy, you're a real fighter and a true survivor. An inspiration to me. I wish you continued success in beating back this stuff!
david2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Dec 2010 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 62 | Hi Cindy!
What a tremendous attitude you have! Such strength! Congratulations on seven years of survival. That is very reassuring news. Sorry you are experiencing these side effects but I'm certain that you will pull through.
Thank you for posting and welcome!
Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | 2002 - WOW. How wonderful to hear from someone who is such a long-time survivor. Looks like you beat the demon, but now have to fight the after effects. You'll meet many people on this Forum who have such problems, but not too many who can proudly say they've been rid of cancer since 2002. The side effects really suck, and make our live miserable. BUT, YOU ARE A TRUE SURVIVOR, and an encouragement for us all. I hope your problems somehow diminish. I have also had late side effects that I didn't even have during my treatments, which I even wonder if they are connected with radiation/chemo. I wish you all the luck in the world in beating yours. You will meet PROS on this Forum who will help you, and if they don't know the answers, they'll direct you to someone who does. WELCOME!
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 | | |
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