| Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2008 Posts: 72 | I have now had my 2nd surgery. Recovery is going well so far. The cancer originated on the base of my tongue and recently spread to my Perotid gland, which has now been removed. They also removed a swollen node from my right side. My doctor has said for sure chemp and radiation will be in my future. They are going to give me a 3 week recovery time...so I should be starting treatments just in time for my 24th birthday! I will know more about my treatments after the pathology report comes back next week. I am being released tomorrow and will most definitely be on the board here...thanks for all the support!
*Shaylynn* 11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0 12.20.2008 Partial glossectomy & left neck dissection. Clear margins. 6.24.09-Pet Scans show 2 areas of concern 8.5.09-Recurrence-Perotid Gland and swollen node removal 9.29.09 Carboplatin & Taxol x8 Tomo x39 11.19.09 WILL COMPLETE TREATMENTS!
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Good luck and I know you're glad the surgery part is over.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | 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 | Shaylynn, Im sorry you are going thru this again. At such a young age, its hopefully going to be an easier recovery for you. Best of luck with your continued healing. 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: Oct 2008 Posts: 49 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2008 Posts: 49 | God bless you darling...you will be in my prayers with a little extra emphasis...I have two daughters about your age...
Donna
Donna
Caregiver to Hubby,Stage IVb, SCC to left tonsil, Mets to nodes, Tonsillectomy, Cisplatin,Taxotere,5FU x 3, IMRT 33 Rads + Carbo x 6, RND 03/09--Dx NHLymphoma 04/09, CT of chest, stom, pel--all clear, 05/09 Pet--all clear, 08/09 Pet--all clear
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Shaylynn,, good luck and it is great they caught it now , you have my prayers for sure but you have that good young age to help you thru this stuff.
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: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Shaylynn, add me to the growing list of people who have you in their prayers!! Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2009 Posts: 88 | God Bless you Shaylynn, I too will be praying for you extra hard as my daughter is going through this too for her second time. Stay strong darling.
Bonnie
CG to daughter Brandy age 31 initial dx 10/06 SCC T4N0M0 with bone invasion upper maxillary Surgery 10/06 CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx Tumor board - No surgery to invasive for QOL 35 IMRT 3/30/09 Completed 5/15/09 8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 109 | I'm sorry you have to deal with this again. I hope that chemo and radiation will annihilate any chance of future recurrence.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Shaylynn,
I'm sorry to hear about this....I haven't seen you on here lately and assumed you were out enjoying life as you should at 23 going on 24. You have the support of the people here to help you through this and you will get through this.....
I will be thinking of you and looking for your updates.
xoxo
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2009 Posts: 90 | Dear Shalynn, sorry you have to deal with this again. I have a dgt the same age as you and can't imagine what it must be like for you at this age to have to deal with all of this. The chemo and radiation should clear everything up for you and you can go on with your life. My thoughts and prayers are with you. Eat well lots of love and support coming your way, nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | Joined: Jan 2008 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2008 Posts: 26 | Shaylynn,
So sorry you have to go through this. Glad they are pulling out the big guns to get rid of it. You're in my prayers.
Kim
08/24/07 Dx at age 44 never smoker, occasional drink T1N0M0 G2 09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear 12/05/07 35 RTx w/boost, 63 GY, finished 12/28/09 PET/CT all clear!! 12/19/11 check-up, all clear - 4 years cancer-free now !!
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Shaylynn
As someone who have also had a second recurrence, I can empathize just how terrible and depressing it is for you. What is worse it that you are very very young and yet you have what an old person like myself is supposed to get. With such a short time of remission, the blow must be all the harder to take. The good news is that after the first shocks pass, you will feel better. I wish you the very best and feel free to vent here at OCF. The coping/anger & fear forum is a safe place to express yourself without hearing Pollyanna type reassurances from those who never had cancer, just factual encouragement from those who have suffered also,
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Ahhh...Charm..that is when I like to say "sometimes things just stink. There's no talking me out of it" Sometimes I just like to be miserable
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 |
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2008 Posts: 72 | Thank you all for your kind words, support, and prayers. I Mainly blog about my journey www.remissionorbust.blogspot.com It is a good way to get what is on my mind out there as well as all the updates! I will try to keep you all updated here as well
*Shaylynn* 11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0 12.20.2008 Partial glossectomy & left neck dissection. Clear margins. 6.24.09-Pet Scans show 2 areas of concern 8.5.09-Recurrence-Perotid Gland and swollen node removal 9.29.09 Carboplatin & Taxol x8 Tomo x39 11.19.09 WILL COMPLETE TREATMENTS!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Suzanne, how could you posibly like being miserable at anytime?? LOL This is a new one to me.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Jim, I guess that's my way of dealing of sometimes. I hate when people try to blow sunshine up my skirt. For instance, before my last surgery the comments I heard were "you will be ok...you can eat a lot of ice cream" and so many more. I really just needed a day or 2 to feel sorry for myself..lol it sounds funny when I type it but it's true.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | 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 | Suzanne, its hard for me to believe you could be grouchy. You are very sweet and kind.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | suzanne
Hey it's everyone's right on OCF to feel sorry for themselves especially those of us [quote]"who have been dealt the hard hand of dealing with a recurrence of the disease, the unique emotional issues that accompany that, and the issues related to re treatment[/quote] (Just love that description of the this forum on the main page.) We have earned it. I set aside a couple of days each month to just wallow in self-pity and indulge myself. Of course it's easier for a cantankerous old coot like myself, as nobody is surprised One of the positive aspects of being negative at times 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Christine, you are so sweet. Most of the time I am a very happy girl. My husband is the only one who actually lets me be frustrated and feel sorry for meself. I guess that's why we got married:)
Charm....I like that quote too. I think anyone who has had some or all of their tongue removed they can feel sorry for themselves:)
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | I tend to ignore things and hope they just disappear...I've gotten a lot of close people around me kind of angry with that procedure...LOL...
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | |
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