| Joined: Mar 2012 Posts: 3 Member | OP Member Joined: Mar 2012 Posts: 3 | Iwas dx 2 4 12 with stage 4 tongue cancer. quite frankley i am terrefied, but mostley Iknow i don't know enough. I start my first cemo therapy tomorow. Iam still scaerd but with this sounding board at least i can vent with you all and not burden my wife with it. she is a 10 year arterial hyperentision and has her hands full. thank's for giveing me that oppertunity | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Lima1818
While it's noble that you want to protect your wife, please don't shut her out entirely either. Let her know that you will fight this because you still want to be with her. But you are right that your fears and worries can be posted here. As far as learning stuff, take a look at the main OCF page. My two cents are: get a TSH blood test NOW, so after treatment you will have an actual number of your thyroid hormone level to get back to. Maybe you won't need to get thryoid pills but without the number of what you are now, you will never know what you should be. Get a full dental workup by a prosthodontist or dentist who has cancer experience. Ask your doctors for a reference. EAT, EAT, EAT now and put on weight before Treatment knocks out your appetite. Welcome to OCF and sorry you had to join. Charm 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: 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! You have found the best place to get educated about oral cancer! We are here for alot more than to just vent to. This is a fight and you need all the support you can get. I know its scary but believe it or not you will adjust. Please dont shut your wife out. You will need help, maybe lots of it. So you need to think of this a teamwork that it takes both of you to get thru this rough patch. Always take someone with you to every doctor appointment and take their business cards. Get a notebook and staple the cards to the back page. You never know when you will have an emergency at 3am and need to call a specialist.
It is VERY important to do as Charm suggested above. Get the full blood count including thyroid before you begin chemo. You must see a dentist and have any teeth that arent 100% healthy pulled. You will need dental trays made. All of this is before any treatment starts.
Please read the main pages about treatments. It contains tons of important info you will need to know.
Good luck with everything! 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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Welcome fellow Buckeye! You have come to the best place for information and support. My tongue cancer was stage IV as well, and, hey, I'm sill here! Did you have surgery and/or radiation, too? Come back here whenever you have questions or need to vent. Good luck with your journey.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | As the caregiver I remember those first few weeks. Kevin was terrified and angry, I was wigged out too, but we both were trying to be strong. As a result we weren't communicating very well. We finally had a bit of an argument and it all came pouring out and we realized that as a united force we had much more power. Then we started chemo and went from there. It was hard, but we made it and you will too. Remember, you are as one and she's as scared as you so just be honest. It IS hard and you will need each other. Eat while you can. Your favorite most fattening foods...dig in!! Understand that when you are not feeling like eating, eat anyway to keep up your strength. You may barf it up later, but at least your body will have a chance to absorb some nutrients. Stay in touch!! YOU can do this!!!
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | 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 welcome... we're here to help and support. Whatever you're going through there's a good chance someone here has experienced it. Do discuss it with you're wife. She needs to know what to expect. What kind of tongue cancer do you have? BOT or Oral tongue? there are people here who've had either kind and they can definitely help. best of luck to you... you will come 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
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Dear lima - I'm really glad you found this place! You will be able to access so much information and help and compassionate help from others who have been where you are. I really think it would be good if you could talk to your wife about what is going on with you. I just know, if it were me, not knowing is worse than knowing and being able to help you do something about what you are going through. Together you will be stronger and can fight and do whatever it takes to make it through the treatment. Tell us a little more about what has happened so far. Did you already have surgery and radiation treatments? Before confiding in your wife, it might help to find out everything you can (see the main page of OCF) so that you can also mention the positive aspects of your treatment and help to encourage her as well. Mention that many people here have been very successful in their treatment and are here to help both of you get through this difficult journey. Hope everything goes well with you. Do come back and let us know how how you are doing.
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Hi, Lima.
Welcome to OCF. I know this is a terrifying time and I'm very sorry that you're having to go through this. You may be surprised at the strength that you and your wife have if you travel this road together. I'm sure you have been there for her during her medical ordeals and she may be wanting to be there for you in your time of need.
How were you diagnosed? Was it via biopsy or scans? Are you being treated at a CCC (Comprehensive Cancer Center)? Have you met with a multidisciplinary team of doctors, nurses, and dietitians? If you have the time and energy to give us a little more information, we can be of more help to you.
Please keep coming back for support. When I was first diagnosed, I read through the OCF website and it terrified me. I thought I was going to die for sure, so I stayed away because I couldn't handle it emotionally. The difference now is that I have joined these forums and it wasn't until I was 4 months post-op. All I can say is that I wish I had done it in the beginning. The stats are terrifying, but they are only numbers that many of us here have beat.
You can do this, but you will need help from many people. Your wife, family, friends, neighbors...start making a list of people on which you can rely. Let people know what you need specifically. Transportation, meals, shopping, errands, emotional support...whatever you need. People want to help, but they don't always know exactly what you need, so be sure to tell them.
I wish you all the best as you face this disease. Here's to hoping for the best possible outcome for you.
With great care, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Mar 2012 Posts: 3 Member | OP Member Joined: Mar 2012 Posts: 3 | first forgive the poor spelling. now Thanks to all who respondedI need to up date and correct. first my wife knows all we go to the doctot togeather. I mite be differant then most, I have put my trearment in the hands of the VA. I have been told i was crazy, I don,t think so.my ENT was a former fleight surgen in Air Force. thay have not told the exact name of it just Root tounge cancer.took cemo first time { had some searous flue symptoms} tomorrow first rad treat do not know how much. thay tell me not to expect any side afects for one to two weeks that right? Most of the time I am fine Iam 65 had a dam good life,great kids and grandkids. just onec in a while{ about every 3to 4 days}i get overwheled for about an hour feel sorry for my self,cry than i put it away because i have betterthings to do with my life. does that sound normal? that kind of wories me. again thankyou with great respect lima1818 | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Good to hear from you, Lima - and to see that you and your wife are fighting this together. About the Rad treatments, everybody is different in how they react to it. Some people have a much easier time of it, but others, not so easy. My son started feeling the effects just after the 3rd treatment and started losing weight. We didn't find out about OCF until he was already in Rad treatment. While you are still feeling pretty good, you should eat everything you can to try to build yourself up so if you do have problems with nausea or losing weight, you can still stay in good shape. It's very normal to have times when you feel overwhelmed - crying can even help because it helps to relieve the tension and stress you are feeling. It's ok to feel compassion for yourself. As long as you can give yourself a time limit when those feelings hit you, and go on to thinking about the more positive stuff like your wonderful kids and grandkids, you are doing great!
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.)
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