| 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 | Hey there as someone else may have told you - have your TSH level checked... Bloodwork right after will not hold the answers for you if your thyroid is on its way out then it will likely be more noticeable an few months from now.
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: Jul 2012 Posts: 61 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2012 Posts: 61 | Mike,
Reading whatyou have written is like reading about myself. Age the same, treatment the same, peg, after effects the same etc for the most part. I hope to be reading that everything is going very well for you.
2010 sore throat Jan 2011 ENT no prob Jun CAT no prob July PET July biop pos July PEG
HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011. Jan 2012 PET neg June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos July MRI. July bio pos | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Mr. Mike, Welcome to OCF and congratulations on finishing your treatment! The OCF forum is a great place to find information and support, and for more information check out the OCF website. You�ve received a lot of good advice and it seems you were already on top of things. Some folks had to have their teeth removed prior to RT. If you still have your teeth make sure you take extra care with them. A lot of us were told to continue to use the �fluoride trays� daily even after finishing radiation. Another suggestion is to use a water pik (lowest setting) to clean your mouth and teeth, and for dry mouth try Biotene products (toothpaste, mouthwash, etc.). Yes, current research has shown that being HPV+ is a good thing!! Best wishes and keep us posted! If you have any questions, just ask!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2012 Posts: 26 | I contacted my radiologist about a month after last treatment and he seemed unconcerned about the swallowing, but he did make me another appointment. My instincts tell me I should be working on this swallowing before now but this is all new to me. I dunno what to do. Do they recommend "dry swallowing? just to exercise the muscles?
On hair loss: Beard (fairly heavy) mostly gone. Some left high on cheek and sideburns. Hair on nape of neck is gone. Thinned out on top of my head. None of this is an issue for me.
Had a few unrelated skin cancers removed last week. Basel cell and Squamous cell. More cutting to clear margins. Had Stage III melanoma in 1994 which I some how survived so the anxiety level rises with these skin cancers.
The tingling is in my back and the back of my arms not in the extremities where most others report. It's uncomfortable but for now tolerable.
Thick mucous still persists but is decreasing. I get a foamy mouth whenever i talk a lot. Otherwise mouth is becoming more dry.
Thanks again for comments. I will be following discussions closely.
Mr Mike
WM age 69, Stage III sqamous cell, base of tongue (left lingual tonsil), (1) node positive, Dxd Aug 2012, 35 rad treat with Cisplatin weekly, final treatment 10-16-12, CT scan 11-18-12 good result, PET in Jan 2013, good result, Barium swallow test...no swallowing function.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Mike You do not have to wait for your doctor to start some swallowing exercises. Here is a link to the exact exercises that two SLPs had me doing and they are standard. Swallowing exercises Any doctor of yours can write a prescription for you to see a therapist to help you with these exercises. You will want a SLP (speech language pathologist). Here is a link to a general overview of how they can help you slp info Okay: beard loss: I no longer have to shave my neck. It took a couple of years before the beard actually came back, and even now I can skip a day without shaving whereas before, one day and I had more of a beard than those patchy things young people sport. I now have a luxurious and full handlebar mustache. Keep the faith 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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | There is a free iPad, iPhone Apps and iTunes called iSwallow, which has 15 swallowing exercise videos on them. It is supposed to be used under the direction of a clinical swallowing therapist, to assist patients with their swallowing program, but you need a password to access the full site, which has to be requested from the the University running it, but the exercise videos still show under "Instructions" to anyone who downloaded it to give an idea how they are done, but suggest you speak with a professional before attempting any.
If you do see a Speech and Swallow therapist, you may want to inquire about accessing the full site, which has a log, an alarm reminder to exercise, and a few others.
Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2012 Posts: 26 | I am pretty sure my Dr will set up an appointment with a Speech therapist. I did not attempt to swallow of a long period as the pain was excrucitating. In fact I began loosing weight well before I started treatment because it took me for ever to eat. The PEG helped greatly with nutrition. My pain is much alleviated now but sure feels like there is a big lump in my throat. I am sure he will stick that scope of his down there next Tuesday and make sure things are OK.
For general interest my radiologist offered me a clinical trial where they gave full dosage (50 grey)to the primary site (base of tongue) and a lesser amount of radiation to the lymph nodes. I declined as I wanted the cancer gone! The trial was to see if the lesser dose was as effective as the full dose in the infected nodes but with fewer side effects.
Mr Mike
WM age 69, Stage III sqamous cell, base of tongue (left lingual tonsil), (1) node positive, Dxd Aug 2012, 35 rad treat with Cisplatin weekly, final treatment 10-16-12, CT scan 11-18-12 good result, PET in Jan 2013, good result, Barium swallow test...no swallowing function.
| | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2012 Posts: 26 | Met with the radiologist yesterday. He scoped me and did a full examination. He said the swallowing is often more of a problam with base of tongue cancers and mine was pretty big. He scheduled me for both swallow tests that will also be observed by a speech therapist so I am hoping that they will put me on a program that will return my swallowing function.
Also I am a singer (not professionally)and my voice is much lower than before. I cannot hit the higher notes without squeaking, but I think with practice that may improve. In fact I have practivced a little each day and notice some capability returning but it is now where near where I used to be....probably a third of my previous range. Mr Mike
WM age 69, Stage III sqamous cell, base of tongue (left lingual tonsil), (1) node positive, Dxd Aug 2012, 35 rad treat with Cisplatin weekly, final treatment 10-16-12, CT scan 11-18-12 good result, PET in Jan 2013, good result, Barium swallow test...no swallowing function.
| | | | 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 | In time you will improve. Keep up the practice and you will get better. 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 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Kevin's voice is much deeper now. He couldn't sing too well after tx, but now he sounds great again. Not the tenor he used to be though. Just a nice base!! Kathy
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 | | |
Forums23 Topics18,199 Posts197,006 Members13,186 | Most Online614 Jul 29th, 2024 | | | |