| Joined: Sep 2010 Posts: 21 Member | OP Member Joined: Sep 2010 Posts: 21 | A few weeks ago I posted some questions having to do with the swelling I have been having with my right jaw and neck. I received a response with was quite helpful, but need additional information. To explain my situation a little clearer, I had 60 lymph nodes removed in April of 2010 and had 30 low level radiation treatments with ended on Aug 17th 2010. I was doing ok and regained much of my taste, however just 2 weeks ago my right jaw and neck above the incision mark from the neck dissection has swollen a lot and became very hard to the touch. It has limited how much I am able to open my mouth. (Only 1/2") which makes it impossible to eat. My doctor tells me in about 6 weeks from now I will be amazed with how better I will be. That all it is, is tissue healing from the radiation and that my voice will be back to what is was prior to surgery and my mouth with open wide like before. So basically he says the swelling is the reason for these things. Is this true? I am banking on it and really looking forward to 6 weeks from now. I need to get back to work, and back into society again. If anyone has any advice or knowledge of this please let me know and thank you for taking the time to read this.
32 Yrs. Male Diagnosed 3/17/10 SCC right side of tongue stage 2 Surgery 4/20/10 Right hemiglossectomy Right selective neck dissection levels 1-4 Right anterolateral thigh free flap Tracheotomy 31 radiation treatments Nov. PET and CT showed something, hopefully nothing awaiting confirmation
| | | | Joined: Sep 2010 Posts: 21 Member | OP Member Joined: Sep 2010 Posts: 21 | Also I have been doing some research and have found that possibly the Fentanyl patch that I am on could possibly be the cause for the swelling... I am curious to know if any of you have any knowledge of this?
32 Yrs. Male Diagnosed 3/17/10 SCC right side of tongue stage 2 Surgery 4/20/10 Right hemiglossectomy Right selective neck dissection levels 1-4 Right anterolateral thigh free flap Tracheotomy 31 radiation treatments Nov. PET and CT showed something, hopefully nothing awaiting confirmation
| | | | Joined: Sep 2010 Posts: 21 Member | OP Member Joined: Sep 2010 Posts: 21 |
32 Yrs. Male Diagnosed 3/17/10 SCC right side of tongue stage 2 Surgery 4/20/10 Right hemiglossectomy Right selective neck dissection levels 1-4 Right anterolateral thigh free flap Tracheotomy 31 radiation treatments Nov. PET and CT showed something, hopefully nothing awaiting confirmation
| | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | "OCF Canuck" Senior Member (100+ posts) Joined: Mar 2010 Posts: 126 | Hi, Gordon was on the Fentanyl patch for 4 months, and I don't recall him having any swelling because of it. Everyone reacts differently to medications, so it's hard to say.
The swelling in his face and neck didn't start until a few weeks after treatment ended and was definitely lymphedema. He also had (and still has) swelling above his incision, as well as his jowls and front of the neck. It does feel hard to the touch. Did your Dr. mention the word lymphedema or give you any exercises to stretch your jaw muscles? Gordon's surgeon just told him to practice opening his mouth as wide as possible several times a day, but his situation isn't as bad as yours.
I've had TMJ, and my physio. gave me a similar exercise, but with the tip of the tongue held behind the upper front teeth, then relax and open the lower jaw as much as possible, maintaining contact between the tongue and the upper teeth (does that make sense?). Apparently this causes less stress to the muscles.
If you don't get satisfactory answers from your Dr., ask for a 2nd opinion. We found we didn't really get a lot of help or answers from any of the doctors after treatment was over. Anne
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | 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 | Im not aware of the fentanyl patch causing swelling. I used it for several months without any problems.
As to your limited mouth opening. I have trismus which is basically lockjaw. Its not possible for me to open wider than 1/2 an inch max and thats without teeth. It is possible to eat with such a small mouth opening. Of course its not easy. Close attention must be paid to this problem and exercises need to be done or it will tighten up more and get worse.
I always check for posts that have been unanswered. Im sorry I didnt see this til now. Maybe by you posting again it didnt show as an unanswered post.
Hope you feel better very soon. 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 | Mparks I'm not a doctor but it sounds to me like you have both lymphedema & Trismus both very common side effects of radiation and neck dissections. I've had them both. Click on the link here to OCF's explanations and read them What is Trismus Lymphedema-OCF My entire medical team (RO,MO, ENT, Prothodontist & speech therapists) all warned me that after radiation, if I did not do jaw stretching exercises, I would not be able to open my mouth much. I have had great results using the Therabite device after my neck dissection and swelling, but just the basic jaw exercises worked the first time around. Why not call him and ask about stretching exercises? I used the Fentanyl patches for a couple of months two separate times and never had any swelling nor have I read any OCF posts of the patches causing swelling. I'm three years out from the first diagnosis and I still need to use my Therabite or my mouth closes up. I really hope your doctor is right about six months clearing it all up, but again, I'd call him or visit him with OCF printouts and ask about stretching exercises and lymph massage. 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: Sep 2010 Posts: 21 Member | OP Member Joined: Sep 2010 Posts: 21 | Thank you everyone for your suggestion and great advice and experiences. I am sorry to be so impatient for info, but as you can imagine I am a bit frightened about all of this. I thought the worst was in the past. I was even getting my sense of taste back! It is very hard to eat. I have lost 15 lbs in the past couple weeks. (Down to 138 lbs - I am 5'10") Since I have posted this I have emailed both my Radiation Oncologist and ENT. (awaiting response) I am hoping and praying that this is just from the swelling in my neck and will go away with time. I pray it's neither Trismus or Lymphedema. I am already under incredible amounts of stress due to fighting with my employer for continued coverage of health benefits and need to return to work cause the $$ has run out. That is neither here nor there, right now I am just overwhelmed and scared. Thank you all for your well wishes.
32 Yrs. Male Diagnosed 3/17/10 SCC right side of tongue stage 2 Surgery 4/20/10 Right hemiglossectomy Right selective neck dissection levels 1-4 Right anterolateral thigh free flap Tracheotomy 31 radiation treatments Nov. PET and CT showed something, hopefully nothing awaiting confirmation
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | I'd ask the doctor for a referral to a PT that deals with lymphedema and trismus. Massage helps the fluids find new paths to drain in and exercises and intra and extra oral massage helped with trismus. I got a great guy here in NJ if anyone needs a referral but that is not going to help you.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | I still get some swelling (Seems to be a little weather based as well, especially when it gets cooler and damp outside). As Eileen staes a lot can be massaged out. I had a therapist give me exercises for both the swelling and the Trismus. I would question the pain with the doctors though. Best wishes... Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2010 Posts: 201 | Hi. Sound like you might have Trimus and lymphadema. I would call your surgeon and see if they have a physical therapist they recommend firths lympodema. Also ask them if they recommend a speech therapist. They are able to giveyou excersises for your mouth to stretch it out. My sister goes to both since 4 weeks post op. Keep us posted.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads 1/10/2011 Clear PET!!!
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