| | Joined: Sep 2011 Posts: 6 Member | OP  Member
Joined: Sep 2011 Posts: 6 | Hello everyone, new member placing my first post. Here are the basics: Found a lump in my neck early 9/2011. Actually found several lumps. My family has a history of cancer (dad died of lung cancer, mom is in remission from lung cancer) so the lumps worried me. Non-smoker, occasional alcohol, 47, male. Went to see my regular MD. He didn�t like the situation with the lumps, so we had a CT scan. Followed up with an ENT who said the lumps were enlarged lymph nodes, but he didn�t know why they were enlarged (I think he knew, just didn�t have the proof). FNA two days later confirmed the cancer. Two days later a PET scan confirmed BOT cancer, small (about 2 cm) with several lymph nodes involved. No cancer found beyond the lymph nodes. The ENT performed a modified neck dissection removing 28 lymph nodes and a biopsy of my cancer in the tongue. SCC. HPV+. Pathology report indicated 18 out of the 28 nodes were positive for cancer. Stage 3 is what they said. Both my RO and CO are upbeat about my future and both have stated the benefit of me being HPV+ and how that may help me in the fight. Of course they have said this winter is going to be a rough one with the treatments and all. I told all my doctors I didn�t care what they had to put me through to keep me alive that I have two small children who need their dad. I know that�s �big talk� right now since I haven�t experienced any side effects yet. But those of you with children, especially small children understand what I�m saying. Of course our family�s world is now upside down. My wife and I have a 5 year old daughter and a 3 year old son. These two angels are my lights at the end of the tunnel. Our neighbors have been outstanding with their support and encouragement. Most of them have children who play with our kids and the fact I have cancer really hits home with the other parents. Friends have come out and also been very supportive. We start treatment on 10-3-2011 which I�ll explain in a post under �Medications, Treatment, Procedures�, which I guess is the place to post the specifics of my treatment plan. Once I found this forum, I began reading as many posts as I could to better understand what I�m about to go through. Plus I�ve visited many cancer websites to better help me understand my cancer. I�m an engineer by trade, so the more information I can get the better prepared I am. Or at least I think I am. I'll figure out the signature section later as I understand the abbreviations a little better. Anyway, good luck to each of you battling this cancer. I look forward to getting to know y�all as we progress together. JoBu. | | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Jobu:
There's always room for anyone on this Forum. It's sad that you had to join, but glad that you did, because as you know, you will find all sort of information you may need, and will get it "first hand," which if wonderful. I just wanted to welcome you, and before long you will be getting many inputs from others with your type cancer. You will be encouraged by the success of those with far worse cancer than you or I have/had, so "go get 'um!"
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: 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 | Welcome to OCF! Nice to see another person from Julieann's state, Alabama. There are not many from this area.
You will find tons of important info not just here on the forum, also on the main pages. To see the main pages, towards the top right click on the blue "Oral Cancer Foundation" words. Too often the main pages are skipped but it is full of relevant news articles and info about everything to do with oral cancer. This website is the best place to get help and support too.
Im happy to hear you have so many people giving you support. Nobody gets thru this alone. Start making a list of everyone who offers their assistance and get their contact info. Let them know when the time comes you will ask for help. There will be so many little things that friends can do to make things easier for you and your family. At the bottom of this I will make a list of little things people can do to help that help make it easier for your family. I hope your wife will come here for help as well. There is even a special caregivers section.
To add a signature, click on the "My Stuff" tab, then click on "Profile" in the drop down menu. Scroll to the bottom and type your info in the white box, click "Submit". Let me know if you need any other help navigating the forum.
List of little helpers..
--take the kids for ice cream
--take the kids to the movies or playground
--have a play date (their house)
--grocery shop
--run to the pharmacy
--do a load of laundry
--if you have a dog, walk the dog
--set up a schedule to make dinner for your family, everyone takes a day and brings you over a covered dish already prepared
Last edited by ChristineB; 09-28-2011 12:39 PM.
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 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hey Jobu:
How in the world did I miss that you're from Alabama. There's not too many of us from here, so double welcome. I'm from Huntsville. Where are you being treated?
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 2011 Posts: 6 Member | | OP Member
Joined: Sep 2011 Posts: 6 | @Julieann...you're gonna freak...i'm from Huntsville too!!!! I'm being treated by CCI and CCC in Huntsville...Oh this is so funny!!! And weird huh? In a good way... Who's taking care of you? JoBu.
Last edited by JoBu; 09-28-2011 03:12 PM.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | WOO-HOO! Dr. Manh Dang is my chemo doctor and Dr. Elizabeth Falkenberg is my radiation oncologist. I took my treatments at the Crestwood Hospital offshoot from CCI off Holmes. I had 7 weeks radiation, with one day/week chemo. I'll PM you my home phone number - I was just asking about others with oral cancer in this area and my RO said she had only about five. There may be more at the larger CCI. How cooincidental. Who is your ENT? I've been through all of them, but Shane Davis removed my tonsils - then went to Dr. Carroll at UAB for treatment options. I'll PM you my phone number and email. Yippeeeee, someone to discuss things with right in my own back yard.
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 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Welcome, JoBu, and the 1st thing I want to say is that it's great having a support group as you seem to. Next thing, to prepare for upcoming tx, eat as much of all your favorite foods as you can, may be a while til you can eat again and you'll no doubt lose any extrs weight you put on now. And go to the toothecare section of your drugstore and grab some Biotene oral Balance gel and Biotene mouth wash, you're mouth will get really dry.
Last edited by Deejer47; 09-28-2011 01:57 PM.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | 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 | Jobu, We are right here for you and your family. You are lucky you found this site and testing positive for HPV. I should know!
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Jobu!
Welcome buddy, let me tell you that I love the attitude. The Nietzche quote in my signature is significant to me, my "why" is my family, my boys were 7 and 4 when I was diagnosed. I'll tell you that when you have that "why" you'll walk through hell to get to the otherside with them, I'd take the trip again in a heartbeat if needed. If you're a reader I recommend Viktor Frankl's book Man's Search For Meaning, which can be purchased through the OCF link to Amazon's site (gives a % back to OCF!!!) , the book changed my perspective.
Very glad you found this site and these amazing caregivers and survivors.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | HI there... welcome... sorry you have to be here... but it's a great group. treatment won't be easy but you'll get through it... 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
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