| | Joined: Aug 2012 Posts: 8 Member | OP  Member
Joined: Aug 2012 Posts: 8 | Hi All,
Just found this site. Wish I had found it 9 months ago. In a nutshell, late Dec 2011 - diagnosed BOT (3.3 cm tumor) stage 4a (right & left lymph nodes involved), Jan 2012 - started Chemo (Cisplatin) and IMRT radiation treatments, Mar 2012 - treatment finished (3 chemo sessions, 35 radiation sessions), late Apr 2012 - first upper endoscopy with esophageal dilation, late May 2012 - second esophageal dilation, 6 June 2012 Post treatment PET scan, 7 June 2012 declared CURED, no cancer sites remain in my body, Aug 2012 - rehab still ongoing, swallowing is better, everything still tastes "wrong". My question is, what's next, Am I really cured? Can anybody who's past 5 years survival answer this?
JT
Age 58 Dx Dec 2011, HPV 16+ SCC, T2N2M0, Stage IVa BOT and 2 nodes L&R, non smoker, casual drinker, Tx 27 Jan - 6 Mar 2012, Cisplatin x 3 with concurrent IMRT x 35, (70 Gy), Bilat & size (3.3 cm) made tumor inop, Peg Jan - May 2012, Esophageal Dilation x2, PET Clear 6 Jun 2012. Lost 60 lbs!
| | | | | Joined: Aug 2012 Posts: 1 Member | | Member
Joined: Aug 2012 Posts: 1 | Hey Jt, I am sorry I can't answer your questions. When I read about your cancer It is alot like my husbands. He has had 2 chemos already and has 14 days of radiation left. It is getting real bad and I am so scared that it can get even worse. He won't eat and he barely drinks and he is getting ugly. He never smoked or chewed and isn't a big drinker. How do you know if your cancer is from HPV? I just have so many questions, I wish you the best. I would like to ask you more questions if you don't mind? Thanks. | | | | | Joined: Aug 2012 Posts: 8 Member | | OP Member
Joined: Aug 2012 Posts: 8 | Hi leelee, I'm so sorry about your husband. A biopsy is required to definitively tell if the tumor is HPV related. I would be happy to answer (to the best of my ability) any questions you may have. Be advised that many of the answers will be for your eyes only and may not be pleasant. If I knew at the beginning of treatment what I know now, I don't know if I would have gone through it all with an unknowable result.
JT
Age 58 Dx Dec 2011, HPV 16+ SCC, T2N2M0, Stage IVa BOT and 2 nodes L&R, non smoker, casual drinker, Tx 27 Jan - 6 Mar 2012, Cisplatin x 3 with concurrent IMRT x 35, (70 Gy), Bilat & size (3.3 cm) made tumor inop, Peg Jan - May 2012, Esophageal Dilation x2, PET Clear 6 Jun 2012. Lost 60 lbs!
| | | | | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2012 Posts: 60 | Hi leelee,
I'm glad that you have found this forum as I did a little to late, but still get alot of answers and ideas to help me through these difficult times. I do not have 5 years only a little over 1 year. Everyone is different and respond to chemo and radiation differently. I am still feeling the effects of the TX that I received. I know there are others on the forums who will be glad to help once they have read your message. Hang in there!
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
| | | | | 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 | Bot cancer has a good survival rate if it's HPV related - the virus reonds well to treatment,  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 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | What's next is to enjoy each and every moment to the fullest!! Appreciate what you have and what you are which is Cancer Free! Live, Love, Laugh and Learn. My son is almost 6 years cancer-free and enjoying life. No one knows what comes next - tomorrow you might win the lottery or you might get hit by a bus. Give those you love a big hug and kiss. JMHO.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | 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 | JT,
See my Signature Brother.
Look as far as I'm concerned you will be fine BUT your recovery can take every bit of 2 years so just be patient. I recommend that you try and consume 3000 cals each and every day as your body needs all the "recovery fuel" it can get. I did that and I didn't gain 1 pound my entire first year of recovery.
Trust me all of us ask "what's next" after this ordeal. For me this is what happened. My saliva and taste (which I think go hand in hand) slowly improved. I saw my first noticeable improvement at 4 months post Tx (PT); another at 5; the biggest at 14 months and the last at 24 months. I estimate both recovered at appx 90% only because you never can remember what 100% was. I was very weak PT but within the first year I was back to riding my bike with the "big boys" just as before Tx. I had a very positive attitude throughout but couldn't have survived without my wife. Some go through a period of depression PT and it usually comes from trying to answer the "what's next" question. Appx 4 months PT I had a hearing test and I found out that Cis had permanently damaged my high frequency hearing in both ears. Nothing I could do but eventually I'll need aids. Also about that time my thyroid crapped out from the rad and I take a small pill once a day. No big deal. Other than that life goes on for me. If you stay around you will soon learn that we fortunately had the baby form of this cancer so in a sense you should count your blessings that you didn't have to go through what so many have to with oral cancer.
The worst is over. It should be all up hill from here.
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 | Welcome to OCF, Jay Tee. Its always nice to have another survivor join the forum. Recovery can take a full 2 years. Its a long but very worthwhile road. Not everyone will return to exactly how they were before their cancer diagnosis but for most they are close enough to lead a good life. Many have some lingering after effects that we just deal with. Sure is better to be alive and complain about the little annoyances than the alternative.  Wishing you well with your continued recovery! PS... To leelee, to find out about HPV status, the tissue needs to be tested specifically for HPV. Ask the doc who did your biopsy if it was tested for HPV. Many times it is not checked. A biopsy is done to detect cancer. While its being tested for cancer they can also check for HPV.
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: 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 | Leelee,
Welcome to the site. Your question needs to be the start of it's own thread. That way posters can focus on one topic. If you need help PM me.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | JayTee
I'm assuming from your profile as a retired military you are used to hearing it like it is.
Posting [quote]Be advised that many of the answers will be for your eyes only and may not be pleasant. If I knew at the beginning of treatment what I know now, I don't know if I would have gone through it all with an unknowable result.[/quote] in response to another brand new poster who is a scared wife/caregiver of a fellow cancer patient strikes me as wrong on many levels.
Only your implicit confession of just how badly the uncertainty concerning recurrence has affected you prevents me from saying more than I can't imagine an experience that is so awful or unpleasant that it has not already been shared on this forum. Plus advice to a scared new caregiver is better on an open forum so others can chime in with different views and attitudes. I know you are trying to be helpful but I don't think this would be helpful to her.
Heads up, nobody knows if their TX will prevent the cancer from coming back. If having an "unknowable result" were a rational criteria for not suffering through this treatment, then not a single person would ever have radiation or chemotherapy. You are not helping yourself with this line of non-reasoning. Hey, trust me, I've been where you are at, not only once, but twice. It's hard, but doable.
Keep the Faith
Charm
Last edited by Charm2017; 08-21-2012 09:59 AM. Reason: toned it down
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
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