Hi my nickname is Boony, Easter last year is when my saga started, woke up Easter Friday with a bulge on the right side of my neck. At first I thought a Mozzie bite, ten days later was informed I had T2 cancer of the right tonsil and one lymph node. When Doctors found out I worked on robots and automation machinery in the packaging industry they asked if would like to have a D'vinci Robot extract my tonsil, which I nervously agreed too, (payback time for the robots) ha ha. Well weeks later, neck dissection surgery to remove lymph nodes and robotic surgery (1 hour 5 min operation) all took place. I did not have a peg inserted because I could swallow and eat soft food through out the whole saga. Then I went onto 33 radiation sessions with 3 bouts of cisplatin chemo thrown in with it. I reckon a week after completing these sessions the fun began. At this moment I am a year out from all this, in January this year I was given the all clea. I have a tight neck even though I stretch millions a time a day and a burning tongue syndrome that comes and goes and annoys the c...p out of me. The right side of my tongue is slowly coming back to life, so is it nerve ends that are regrowing (I hope) that is causing this burn sensation? I am pretty fit and weigh constantly around 78kg, I am on my exercise jogger for 20 mins every morning. @SPS67 wrote: Hi all, its been a while since I've been on here, the recent flurry of posts on this post thread has dragged me back in. At my last installment I was due for my 3 months CT/PET scan - results for that were that the tumour had havled in size to ~14mm. I was doing it pretty tough in other areas around then, a lot of pain constantly and almost fully reliant on the PEG. I plateaued for about 4 months and it wasn't until April this year that I started to claw out of the side effect hole. They wouldn't remove the PEG until I could demonstrate I didn't need it, so I started drinking the Fortisip (ewk!) until I get move to smoothies then mashed food, etc. I had some great friends who had twin babies and they'd knock me up extra batches of home made baby food that was great. During this period my hair grew back, although shaving remains almost unnecessary to this day. Peripheral neuropathy set in that made walking awkward and very little grip strength, an MRI showed no cause, but luckily it slowly subsided over 6 months so now I just have a little numbness in my pinkies. Tinnitus has also got a little better. By the 6 month scan the tumours and lymph nodes were at 0mm!!! All signs were gone. The specialists were also impressed by how supple my neck tissue was with little woodiness or stiffness. I could swallow tablets, so off the MS Contin solution and back onto Targin, and by then I was back to 2x 20mg per day. Pasta and mince meals were possible although a lot of water and bits kept reappearing long after the meal from all the swollen voids and folds back there. 9 month scans and still clear, and eating includes steak and avo on toast - back into Hipster territory again (though without the goatie 🙂 Day time saliva isn't too bad, not enough for some foods without a drink in hand but good enough for most tasks. Exercising dries me out quickly and at nights I still wake with my mouth dried and glued closed if I forget to use a Xylimelt, but a quick spray of Biotine or smear of gel gets things moving. Through all of this I've been continuing the immunotherarpy trial, and concensus is I'm on the real deal judging by my side effects. The 17th and last shot will be next week - it would have cost >$200k for that treatment if I was paying. Talking of costs, we recently had our dogs crucial ligament repaired at a cost of ~$7k, my whole cancer cure including (exhobitant) hospital parking didn't come to that - we truly are blessed with a fantastic public health system, at least in the cancer care area, and despite media BS. I also elected to work to my ability through all this, luckily my employer was flexible and I could work from home, sleep in or nap when I needed to. I'm sure it gave me purpose and kept me focused (or distracted). I went through period, sick of being tired and tired of feeling sick. I don't regret that decision but I also wish I took a break because now society looks at me as cured so taking a break might not be so easily tired (or covered by income insurance). My end story is - beating this disease takes patience and tenacity. Time really is the healer after CR does its job. Looks after your nutrician, do the swallowing exercises (and whatever else they throw at you) without complaint and be diligent at them. I still gets down at times, the Dr calls it readjustment syndrome, but hopefully time will sort that out too. Oh, and during treatment my partner would laugh that I was the oncologist's poster boy because I would follow their instructions and never complain - well she must be right because he dobbed me in for an upcoming SBS special on P16+ head and neck cancer that will be shown on The Feed in early October '18. You can hear more of my story and that of HPV caused cancer cure research on the show. 😉 One last thing, only in the morning sometimes, I wake with a dry mouth which comes good after about 5 minutes of sitting up and doing my routine Lymph neck massage.
... View more
Like you I had squamous cell carcinoma but of the right side tonsil, stage 2. The treatment they gave me was the same as yours Cisplatin 3 rounds and 33 radiation sessions at the same time. Prior to this treatment I had lymphoma nodes on the same side of neck removed, one was infected. The actual tonsil was removed by a de Vinci robot, it took 1hour and 5 minutes to do. The funny thing is, in my job at the time I use to work on robots in the food process packaging industry. So before going under sedation I asked the robot to go easy on me otherwise pay back if I did a return service job on him. 😂 The after effects of it all has been a burden, my biggest gripe is the burning tongue syndrome, which comes and goes. Will this eventually disappear? Luckily I produce enough saliva in the day to get food down my throat. Also I get tightness around the throat, I do lots of lymph neck massaging. Any tips you got to help me through this nightmare would be much appreciated.
... View more
Hi, Last year I had Tonsil cancer stage 2, I had one lymph node in my neck that was infected by this nasty beast. The tonsil was robotically removed and lymph surgically removed I also had radiation chemotherapy (cisplatin) sessions after it. January this year I was blessed and given the all clear. My tongue took a hammering, lose of feeling on one side and inflammation that causes me hardship in swallowing and talking. I eat various textures of foods but must be well sauced or gravied. Not so long ago I use to get bad tongue burning sensations, that seems to have abated but I do not want to say it’s gone yet. Is there anyone out there that has got past all this? Or if you are suffering the same type of effects how are you managing it.
... View more
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.