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New NPC

ongsoonan
Posts: 9
Joined: Mar 2014

I was diagnosed with npc stage 3 (T1N2M0) in Dec 2013. I just completed radio/chemo about 2.5 months ago. I would very appreciate if you all could give me your opinions/suggestions on following matters.

- I lost about 9 kg of my weight and feel very hard to gain my weight again. I only take vege, bean, fish, egg and milk (ensure). What is the appropiate diet for npc patient?

- In Malaysia, normally we only go for CT or MRI scan. Is it enough? or PET scan is better?

- I feel quite weak compare to the past and just can do some simple exercises daily (about 45-60 min).

- I canot sleep well at night due to dry month. I use biotene/oral 7 but no improvement.

Thank you

 

ong

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I am glad to see you back but not glad you are back having NPC. I am not sure if you can get Stoppers 4 Dry-mouth spray in Malaysia but if you can remember it is what I used and it was one of the best dry mouth sprays I found.

 

As far as scans go to me the PET is the best but MRI or CT will do the same all depends on how well educated the guy reading the scan is.

 

The weakness and sleeplessness is normal for what you just went through, give you body a little more time and it should start to come back to a new normal. As you know I too am a vegetarianism but I do eat a little fish now and then. The  only other thing I would add is some more Vitamins, like Vitamin C , D, B1,B6 & B12 also Vitamins with Zinc. You might also be able to find some Multivitamins with all this in it, just do whatever you can do.

 

 

Tim Hondo

 

 

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

Welcome to this great forum.  I was treated for NPC in 2012.  I had a PET scan before treatment started, and one 3 months after treatment was over....since that time I've had only CT/MRI's, with and without contrast...and only of the head and neck.  All the Drs. here seem to be satisfied with the CT's so I guess I am also.

Eat whatever you can, and as much of it as you can....we not only lose weight during treatment, but lose a lot of muscle.  It takes a long time to build that back up.  You're only 2 1/2 months out of treatment.....so basically you're still a babe in getting back to normal.  I still have fatgue (or I tire easilier than before).....and my muscles still aren't where they used to be.....

Recovery takes time.....but most of the old you will return.  I still have dry mouth and my taste buds aren't what they used to be....but it's very liveable.

p

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Hi ONG

 

I'll chime in with a couple of opinions although I was not NPC. Your diet sounds very healthy and you've only lost about 20lbs. What was your original weight? I lost fifty pounds but was overweight to start. Weight loss is quite normal during chemo/radiation and especially so with Head and Neck cancer. Are you using a feeding tube? I think you will regain some weight, give it 6 months at least.

 

There is no specific/appropriate followup test. Pet, MRI, CT, Ultrasound and even Xray are used. Much depends on symptoms and all the tests have pros and cons. Again, I think you are fine in this category also.

 

45 to 60 minuetes of exercise at 3 months post is above normal. You are doing Great!  No worries there.

 

You could try a humidifier to help with moisture in the room where you sleep although in Mylasia I don't know if this is a good idea. It will get better. Get an OTC sleep aid and use it. You might also be suffering from a little Post Truamatic Stress disorder, don't discount depression and get some medication to help in that area if it is an issue.

 

Seems to me you are progressing as you should. Give it some more time and reassess at six months. Welcome to the Board!

 

 

KB56's picture
KB56
Posts: 262
Joined: Apr 2013

Your situation sounds very normal and probably what most of us experienced after treatment.  I lost about 30 pounds and did not have 30 pounds to spare.  Putting weight back on was pretty tough at first but eventually it will come back.    I am 9 months post treatment and I am pretty close to my pre fighting weight.   Eggs, fish, beans, protein shakes, etc are all easy to swallow and full of protein.

As far as weight gain, focus on getting protein any way you can.  If it hurts to eat, drink as much protein as you can.  My throat hurt like hell for 5 months post treatment but today it feels pretty good.  I do have dry mouth at night but it is much better than it was when I was 2-3 months out.  I woke up every hour or two at that point as I needed something to drink as my mouth and throat were so dry.  I also started taking a pill 3 times a day (Salagen or the generic equivalent Pilocarpine) which is a medication that stiumlate saliva production.  It really seems to be helping me a lot.

As far as exercise, continue to push yourself to do what you can and it will get easier.   Doing even simple exercises is great and will help you mind as well as the body.   Again, just keep at it and you will start to see improvement and the weight you put back on will be muscle. 

My doctor has done a couple of PetScans and CT Scans and later this summer he will do a CT scan vs PetScan.  I asked him why a CT vs Pet and he said that the CT scan can detect below 1Cm which he said was the limit of the Pet Scan.  It seems like they use the Pet Scan to ensure the cancer hasn't spread throughout the body but if they are focused on one specific area of the body, some like the CT Scan better due to being able to detect very small changes.

It sounds like you are where most of us were at this point in our recovery.    Keep pushing it, do what you can and eat as much as you can take with the focus on getting protein and you will slowly but surely get back close to where you were before.   Congratulations on completing the treatment and getting that behind you.

 

Keith

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

I also suggest Stoppers4 for dry mouth. It can be ordered on-line. As for your question of CT/MRI vs. PET, I had a PET following tx. then CT scans every 3-4 months. My recurrence was found 15 months later with the CT. I lost 65 pounds during my initial tx. and have not gained any back. As someone else once said "I used to live to eat and now I eat to live". My weight has remained stable for nearly 2 years now. 

Good luck

Guzzle
Posts: 617
Joined: Mar 2014

I am starting my journey but I am humbled by the help I have recieved here. I hope I can recover as quickly as you.. Good Luck to you.

ongsoonan
Posts: 9
Joined: Mar 2014

Thank you very much to all of you and I really appreciate for your advice and suggestion.

I met my onco and ENT today. My onco told me that the CT scan/ultrasound are enough and only will do the scanning after 6 months of my last radiotherapy. I did the endoscopy today by the ENT and he told me it is ok.
My original weight was 60 kg and lost about 9kg (15%). I hope I will gain my weight back after 6 months. I am a skinny person and have no extra weight to loss.

I didn’t use feeding tube during my treatment. My throat was very very painful in week 6-7 (during treatment) and 8-9 (after treatment). And now is almost ok, just feel a little bit uncomfortable in my throat and my taste is almost 80% back to the normal.

Thank you.
ong

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