| | Joined: Jul 2010 Posts: 1 "OCF Canuck" Member | OP  "OCF Canuck" Member
Joined: Jul 2010 Posts: 1 | Hi - My husband has been a survivor for 14 years - he had a carcinoma of left tonsil and was treated with surgery, radiation and chemo. He has survived no syliva - no taste and had a terrible time trying to swallow anything all these years but he has come through shining! We moved from South Africa to Canada 9 years ago and made contact straight away with an ENT. so he could keep track of his throat - he has had his throat stretched a few time as it is so difficult to swallow. He had a terrible tooth ache a few months ago and the dentist said he couldn't see anything - went home and the pain kept coming snd going - with his history - we decided to see the ENT. he didn't seem concerned at all but ordered a CT scan - it came back with something. He did a biopsy straight away in his office and sent us home to wait for the results and ordered an MRI- we waited and waited for both. Eventually we got both and were told he had cancer in his jaw it is wrapped around his jaw bone and causing him to not be able to open his mouth very wide and is in terrible pain as it is growing and pushing on all the nerves. He is booked for surgery 9 august and is on the emergency waitlist. he has to have trach, neck disection, mandibular resection and fibula flap He is so very sick - he has a fentonyl patch and endocet for pain he has ondansetron for nausea but it doesn't work - he has tried gravol it works for a while sometimes. Does anyone have any advice on what to do? the poor chap has a couple of good days - then he vomits and vomits for a 3 days - this is not helping him - we have been to emerg last weekend they gave him an iv for a couple of hours - and sent us home - is this normal? Last time he went through this - he wasn't constantly sick. I am worried he is losing to much weight ( he is only 119 pounds) Anyone have a suggestion on how to get him to eat - he dosn't want anything - he tries the meal replacement drinks,and chicken soup but when he is sick like this nothing works. Sorry for the essay - but I need some help! Thanks - I am so happy I found this group - the doctors need to send you here for support! I will suggest they put a link on a notice board at the hospital. It is so important to feel you have some support in these sad times. thanks in advance - I just know you will have some good advise! | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Welcome to OCF. I have had a similar surgery almost 1 year ago. Its a difficult surgery and is very long. Mine was aprox 10 hours. The recovery is also long. If I were in your position, I would call the doc now and tell them everything you just told us. Your husband should have a feeding tube. This type of surgery makes it impossible to eat for several weeks. I was kept asleep for 3 weeks after the surgery and when I woke up I was not able to eat. When nasuea hits, if it isnt controlled it wont matter if there is a steak dinner or a bowl of jello in front of him. If he is sick, he wont keep anything down. I put a link for my chocolate peanut butter milk shakes below and also a link for easy to eat foods. For the shakes, go to the health food store and get some high protein powder or the dry carnation instant breakfast powder to add calories and protein. The shakes I make are very high calorie. I hope this helps. http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=115136#Post115136http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621
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: 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 | What do they contribute his nausea to? Never heard of anyone getting nauseated from this cancer BEFORE radiation and chemo. They need to address it regardless but I also think they need to determine it's root cause.
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | I would be suspect of the pain meds causing this type of nausea.
I am sure that it would be a hard choice to decide between pain or nausea but perhaps this is something to look at.
DavidCPA above will probably comment on this issue..I think he finally got off of the pain meds because of complications.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Sue, so sorry to hear of your husband's travails, and I know it must be agony for you too.
The only thing that helped me after three solid months of 24 hour nausea was Compazine. I believe it's an older line medication, and my oncologist prescribed it finally after I'd tried several more recent drugs, which didn't help much.
Please keep us posted.
Courage.
David 2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
