| Joined: Dec 2008 Posts: 1 Member | OP Member Joined: Dec 2008 Posts: 1 | Hello I am brand new to this forum. My Name is Larry and I am a year and 3 months past treatment for stage 3 right tonsil cancer with 4 postive nodes. Had tonsils removed Oct 08 2008 and radical neck disection Oct 22 08. Had 30 rads stating Dec 9th. had peg for 8 months. eating pretty normally now. Have had mild discomfort in right ear some time left ear also since neck discection. also have pressure on top of head. Docs say nothing to worry about but still worries me. Last week or so been hoarse and coughing a littie am hoping just pollen. Anybody else experience simalar sytmoms. Have not had any post scans docs don't seem to think warrented?? | | | | 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 | Larry, First congrats on being finished with the Tx. Three months post Tx and you are doing very well. This recovery can take anywhere from 1 to 2 years so in that regard your body is just starting the recovery process. Not to say don't pay attention to how you feel but don't go overboard either. BTW, were you tested for HPV?
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Larry,
It is normal to worry about all of the tweaks, creaks, and pains following treatment. You are always on alert. After a cancer diagnosis, you can't help but be sensitive to every little thing. When in doubt, check it out. If you are still concerned, communicate with your Dr. or Nurse Practitioner. Some of these things just need time to work themselves out. You are still in the healing process. I'm assuming that you have follow up appointments scheduled over the next months. Keep a diary of your concerns and bring them to your next appt. About the scans--everyone is different. Ask your Dr. for more info on that.
All the best as you recover! And try to relax by focusing on something (other than Ca) that interests you. This is a wonderful group to share your concerns with.
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Hi Larry:
I have similar symptoms, except I also wake up with a headache, along with the pressure in my head. Mine has gotten worse since the pollen is so bad in this area. My doctors associate my problem(s) with pollen and sinus. My right ear hurts, but only when I lay on that side, which is strange. My ear doesn't hurt during the day when I am up. You will love being on this forum; you'll learn so much. Also, there is always someone who will answer any questions you might have concerning any new symptoms, or treatments. Welcome. 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: Feb 2010 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2010 Posts: 38 | I am having some pain also in my right ear, especially when I wake up in the morning. I had my surgery one month ago and attribute the pain to having my jaw open wide during the 6 hour surgery. It is, thankfully, the only consistent pain I have had since the surgery, but also have a pinched nerve in my left trapezious muscle. Have any of you had the burning pain as if a pinched nerve? I am also wondering when I will get more strength in my left arm. The PT gave me some exercises to do, but she said to take it easy as I am still numb from the neck dissection.
Barb
Teacher aged 48, SCC Left side and floor of Tongue, Dx December, 2009. Stage II T2 N0 M0 Successful partial glossectomy surgery with thigh flap and neck dissection 3/8/10. 6 weeks of radiation tx ended 6/30/10. Happily surviving!
"Get outside every day. Miracles are waiting everywhere."
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Barb
Took me about two months to regain enough strength in the left shoulder and arm after intensive PT to pull an outer jacket or coat on without having to slip the left arm in first, then pull and tug with the right arm. It's still weaker than the right side where I did not have a neck dissection but it still continues to get better. Hang in there. 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 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Clark had had weakness and pain in his right shoulder following his surgery in November. The PS attributed this to grafting the blood vessels from the flap on his jaw to the blood vessels next to the clavicle. He also has been in PT for months to regain his strength and mobility. The belief is that the trapezius nerve was irritated during surgery and it can take months up to a year for the nerve to heal. The nerve wasn't severed as he has always had the ability to move his arm and hand. Although this is frustrating, it is reassuring that in time it will improve.
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | BTW, Larry is ONE YEAR and 3 months past treatment.
Larry,
It would be easier if you put your history in the signature section and then you won't have to repeat anything and it will show every time that you post. Just left click on your name and then click on "view profile". Put everything in the bottom box.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Feb 2010 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2010 Posts: 38 | Thanks Charm. This is very reassuring as I continue to heal. I started back to work this week and the trapezious pain doesn't seem to be as much a factor as the sheer exhaustion. I come home hungry and tired every day and take a little nap to keep my energy level high, but I am not looking forward to working during radiation tx next 6 weeks. I am looking into completing an FMLA and taking off the month of May. Sad for my seniors, but they will understand. My long term substitute is awesome and they love her, so it won't be so bad. I will play it by ear, but after reading some stories, it sounds like I will be even more tired than normal. I also sound a little like my severe special ed kids, and although no one says so, my speech is not good yet.
Barb
Teacher aged 48, SCC Left side and floor of Tongue, Dx December, 2009. Stage II T2 N0 M0 Successful partial glossectomy surgery with thigh flap and neck dissection 3/8/10. 6 weeks of radiation tx ended 6/30/10. Happily surviving!
"Get outside every day. Miracles are waiting everywhere."
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Yes you will be very tired. Especially if you are tired now. Rads make you think someone else is in your body and just want you to doze a lot. You will handle it and one day be back to normal. That is the day I have been waiting for.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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