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Hi Everyone and Thank You.

NelsonOng's picture
NelsonOng
Posts: 43
Joined: Aug 2013

I came into this forum only after receiving my treatment of 20/33 radiation

and 2/3 of chemo/cisplatin and I am glad to read what am I going to expect

during and after treatment.  Thank God, its never too late.

 

On 24 Jan 2013, I had a left mandibular surgery (15 hours) which I lost my jaw

bone and 5 teeth.  I had my biopsy, CT scan and MRI done on Aug 2012 which

was benign and the scan mentioned tumor was 4.5 by 3.8cm.  My ENT did not

mention a word “C” to me.  My doctor then told me to get the surgery done

and make a date for my surgery on 4 Oct 2012.  He later refer me to a plastic

surgeon who will reconstruct my jaw bone using my left leg fibula and also my

thigh skin to reconstruct a flap to form my ‘gum’. 

 

As I already book a holiday in China on 8 Nov 2012 and also for my Standchart

marathon on 2 Dec 2012, I decided to postpone my surgery.  That was really

a big mistake I made. My surgery was scheduled on 24 Jan 2013 and prior to

that I have had another CT scan and MRI done on 16 Jan 2013.  The tumor

has grown to 6.5 by 4.8 cm then but still no mentioning of “C” on the report.

Only after the post histopathology report, then it was mentioned maglinant

and Stage 4.  I got stumbled.  I lost another 2 teeth prior treatment while with

the dentist.

 

I am now 4 mths after treatment and had my CT scan on 6 Aug 2013.  My RO

says no sign of the beast and also ask me to exercise more due to the fact that

I still has tight neck and fluid retention around the dissection area.  I am back

to my routine and exercise 6 days a week, ran about 40 to 50km every week. 

Still has dry mouth and ordered fm Amazon XyliMelts and Oasis spray for dry

mouth where I can’t find in Singapore.  Ears still has the ringing sound which

now I am immune to it… haha.   My taste buds all back during the5th week

post treatment but I still can’t take spicy stuff, it really burns.  I love spicy food

but for now I have to avoid them.  Every morning when I woke up, my left side

of chin till down to the dissection area is stiff.  Need to do some jaw exercise

and it gets better.  Thanking everyone here for giving their valuable experience

which I somewhat anticipate what’s going to happen next during my time of

treatment and post.

 

God Bless everyone here.

CivilMatt's picture
CivilMatt
Posts: 3069
Joined: May 2012

NelsonOng,

It took a little bit to get started, but you did it and now it is done.  It sounds like your healing is in zoom mode and doing very well.  For all you had done I am impressed with your great outlook and determination.

Keep healing and living life.

Matt

donfoo's picture
donfoo
Posts: 1316
Joined: Dec 2012

Hi Nelson,

Thanks for posting your story and how well you are doing during recovery. If I may ask, where on Earth did you seek medical services? A place where they don't tell you when you have cancer, or worse yet a place that missed diagnosing cancer for so long? It is great you posted your story so others can be more aware that such a situation can occur.

The mantra here is it is not cancer until the doctor says it is. This may be a rare case where it is cancer when the doctor says it isn't.

NelsonOng's picture
NelsonOng
Posts: 43
Joined: Aug 2013

Well, I'm a Singaporean and seek medical at our Singapore General Hospital, a well known hospital where

many rich asian came all the way to Singapore to seek medical help.  Yes I was saying its amazing that they

can't tell with 2 CT scan and MRI.  My plastic surgeon has told me it is best to diagnose only after

surgery even though for now my first report says benign.  True enough, and even when I had my second

CT scan and MRI, still no sign of "C" and only post histopathology, I was then diagnose Stage 4.  My

tumour is Odontogenic Tumour and it's so naughty that some of my jaw bone was eaten.

 

During my visit with my RO before my treatment, I also asked him the question why on earth my report

did not mention "C".  Well he told me the same thing, the final is still to dissect the tumour and send

for test.  If I knew in Aug 2012 that it was magnilant, I will have had my holiday and marathon cancelled.

 

My ENT doctor and plastic surgeon really done a very good job and they claimed that I am their fastest

patient that has recovered in this brutal surgery. But and again, everyone here knows how BRUTAL is

radiation on the Head and Neck area.  Haha

 

Cheers. 

Nelson

donfoo's picture
donfoo
Posts: 1316
Joined: Dec 2012

Hi Nelson,

It seems you are in a place that is good now. Your recovery is going very well so enjoy!

TracyLynn72's picture
TracyLynn72
Posts: 739
Joined: May 2013

to have you here, although I'm sorry you've had to go through so much!  Thank you for sharing your story..welcome to the group!!  You will be in my prayers and I always pray for my CSN family! 

hwt's picture
hwt
Posts: 1991
Joined: Jun 2012

I am from St Louis,MO in the US with the same dx. The first thing they did here was a biopsy and it wasn't 2 weeks between my first visit and surgery. My surgery was 19 hours, induced coma 4 days and 2 weeks in ICU.  They used my right fibula to replace left mandible. I was able to keep my hinge but jaw did not line up perfectly. Sounds as if you are taking the rads and chemo like a trooper :-) I went from walker to cane with the leg wound that had to be tended daily but today have absolutely no issues with my leg. Never lost my taste but like you, still have issues with spicey or hot foods. At 15 months post tx, I was still seeing improvement. For about a year, I felt like I had a bag of nickels hanging on my jaw because it was so heavy but that finally went away too. It takes time but does get better. Your positive attitude will take you far!

NelsonOng's picture
NelsonOng
Posts: 43
Joined: Aug 2013

I have an uneven lower lip ..... not to worry as God has been keeping me in good shape & I'm sure He sees our "inside" and not the physical looks.

Yes our PMA (positive mental attitude) will be our weapon for everything.

No matter what happens, we smile everyday when we're awake that we made it another 24 hours and will not cease with our smiling ya !!!

Nelson

NelsonOng's picture
NelsonOng
Posts: 43
Joined: Aug 2013

Thank you Tracy ..... really it's the power of prayers & GOD who keeps me in good shape all the while

We shall join & pray for everyone in this CSN and never cease to be the tough C warriors !!!!!

Hurray, we fought the battle with our faith to be healed completely.

For those in the midst of fighting the C, we will continue to pray and God adds the strength too.

Nelson

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi Nelson,

Welcome... One of the big things I get through your words is your positive sttitude. No doubt it accounts for how well you're doing considering what you've been through. Your attitude will keep you going and take you far as well as speed up your recovery. Keep up the good work! 

Positive thoughts and prayers

"T"

NelsonOng's picture
NelsonOng
Posts: 43
Joined: Aug 2013

Thank you T for the prayers ..... we can never do without that power for our recovery.

We will all do well and be the good works of GOD who strengthens us as we maintain our faith in Him

Nelson

 

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

nelson, SO GLAD ur tx is over!  u can now start the healing process and start feeling human again.  praying for u 2 continue 2 heal so well.

dj

NelsonOng's picture
NelsonOng
Posts: 43
Joined: Aug 2013

Feeling "human" ...... and praying for continuous healing well, they're what we C warriors need from GOD.

We look forward to His good maintenance for us all in CSN !

Nelson

jim and i's picture
jim and i
Posts: 1666
Joined: May 2011

You are an inspiration. Your good health, positive attitude and faith have brought you through this ordeal with speed. I pray all continues to go well for you.

Debbie

NelsonOng's picture
NelsonOng
Posts: 43
Joined: Aug 2013

Thank you Debbie

Everyone who shares the stories in this CSN is an inspiration to others

We read to know each has a different recovery journey & side effects

I got the tips from others' stories to try for more comfortable recovery as we don't

get the same advices from our doctors, dentists, speech therapists & dietians.

We pray for all in this CSN & stay strong with PMA always .......

Nelson

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