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Joined: Jun 2012
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AvrilG Offline OP
"OCF across the pond"
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Hello everyone,
Based here in UK so not sure how treatments differ.
BUT.....my mum (aged 77, non smoker and casual drinker) has oral cancer. She suffered from lichen planus in the mouth for many years then suspicious cells were found 4 years ago.
Tumour No.1 on tongue removed 2009. Tumour No.2 on tongue removed 2010. Tumour No.3 on tongue hospital decided that radiation would be better as it would treat the whole mouth where there were also other suspicious looking patches.
Radio therapy treatment for 7 weeks began April 2011. Appalling reaction - hospital says worst ever seen. Pain, burns, not able to eat. Finally after hospitalisation PEG put in Sept 2011. etc. Continual infections so all teeth removed. Discovered Tumour No.3 still there. Surgery involving cut through jaw, graft from forearm 2 weeks in hospital Oct 2011.
Jan 2012 infection so brace removed from jaw to find that bone not mended as blood supply destroyed by radiation. New tumour April 2012 rapid growth spiral cells - laser trimmed but told now cannot cure. Still fed by PEG, can only grunt because of broken jaw, horrendous gunk constantly,very withdrawn and I think depressed but she tells the doctor she is "fine". What can we do to improve her quality of life. We have not been given timeframes, cancer has not yet spread beyond mouth.
Any bright ideas, thoughts welcome.
Thank you. Avril

Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Welcome to OCF, Avril. Glad you have found this site to help your mother. She sure has been thru the war!!!

Ive been thru the operation of having part of your jaw removed. This is a very big invasive procedure. Mine failed and I am without a jawbone so I dont look the best and have some other issues as well. My surgery was 3 years ago and it took me about a year to recover to get to at least level out. I know all too well what your mother is going thru and it is horrible!!! My heart goes out to you both.

I would suggest that your mother be treated at the biggest and best cancer center in the UK. Sorry, Im not familiar with what is offered where you live. A large facility would have a team approach where she would be seen by a whole group of specilists who are familiar with treating oral cancer patients. This would give her the very best chance of besting this and regaining a semi-normal life again.

Best wishes!


Christine
SCC 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 smile
Joined: Jun 2012
Posts: 2
AvrilG Offline OP
"OCF across the pond"
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Thanks for your welcome Christine. Surgeon suggested chemo earlier this year but oncologist said she would not advise this as it would not cure and any benefit would be outweighed by the side effects.
Now they have suggested Photo dynamic therapy but again the side effects on an already mutilated mouth would seem to be unrealistic.
No one is talking about doing anything with the still broken jaw. If anyone has anything helpful to suggest about improving quality of life please advise.
Avril

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"OCF Canuck"
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Hi well - back at third tumor in tongue - they should have removed it first then did radiation and chemo! That's protocol, chances are your mom being her age is slow to heal to begin with - frown can I suggest something radical? I know she's on a peg. Bump up her protein big time - it helps the body heal. If she's at home healthy fruits and veggies as well (preferably alkaline) I know some people feel its bunk but diet can very much effect healing even if it's not by mouth. Look into foods that boost the immune system. I know she likely npo (nothing by mouth) but blended and delivered via peg - if possible (some tubes are placed below the stomach so dthe formula is already partially digested. Talk to the nutritionist first see if you can add to her diet) and maybe hyperbaric to help heal and fight nfctions? This is horrible - and yes the best cancer hospital possible! At this point it's the infection that might kill her getting that under control is priority, despite the involvement if it hasn't moved south, don give up the fight ! Hugs and prayers! smile


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: Sep 2006
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Avril,

Really sorry about your Mum's condition but if her cancer is still progressing then she could pass away fairly quickly, even within a year, assuming no further radiation or surgery. Do you have Hospice in the UK? Many on this site have lost a loved one to this cancer and will be able to help you a lot during this time.


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.

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