Advanced Nasopharyngeal Cancer

sweetblood22

Skiffin16 said:

Both
Agreed more than likely both...though usually the chemo is only temporary short term, lasting only a week or so.

The radiation will be the long term, more than likely taking several months to get the majority of both taste and saliva back..

Hang in there, it get tough, but you are tougher.

Best,
John

Loss of taste after 5 treatments.
I only had radiation, no chemo. I started on 4/6/09, which was a Monday. That next Sunday, was Easter Sunday. I could eat. I ate raviloi, antipasta and rack of lamb chops, but I couldn't taste any of it really. I actually made me eat even more, because I kept trying to taste and never felt sated. By the next Sunday, I was done eating for a while. I remember struggling to try and eat some broiled fish out at a restaurant.

Goalie

NeoTheron91 said:

5 days passed
Radiation for 5 days now. My taste buds are gone. Not sure it's from either once a week Chemo or radiation?

My Mileage Varied
I was not NPC, I was tonsil cancer (tonsillectomy) and lymph node cancer (cisplatin and nine weeks rads) and then neck dissection to clean up the detritus. This time last year I was right in the middle of rads. It was not fun.

“Get second and third opinions on everything” is advice I completely agree on. That is why we are all on this list here; to provide others with our experience and say that this is what worked for us but not to be prescriptive for others. As people keep saying” We are all different” and “Your mileage may vary”.

Here are my views and recommendations:
Eat well as long and as much as you can. Eventually, it will be difficult whether because you can’t (mouth/jaw problems) or don’t want to (vomiting, food aversion, etc.) …but you must get nutrition. Eat meat if you like. You need to get protein and if you can’t do it creatively and well another way, now is not the time to experiment. (Yes, we have a vegetarian daughter but my wife worked hard to get balanced nutrition; you may not be able to do this.) You’ll probably have to shred it or put it into soups or whatever but do what you must. Eat carefully and mindfully but don’t worry about “organic” since your job is to survive now.

Don’t worry about your showers and such but, if your water tastes bad, get a filter. For about two weeks our water tasted bad and I drank bottled. Then it got better and we went back to filtered city water. Living and working in developing countries, I am used to most anything. I work in Mexico now.

Don’t worry about special enemas and, in fact, unless you really need them (you’ll know it) you may not need enemas at all. But KEEP HYDRATED by drinking more water than you ever thought possible. And take colace or something else to keep moving if it goes more than a couple of days. We really only had this bad problem when on a whole lot of drugs like for the chemo. They have quite an “impact” if you catch my drift.

Don’t get a feeding tube unless you need one. There are many of us here on the site who did not and who survived quite well without one. That said, if your health is compromised going into this thing (other than cancer) or if you end up truly needing one because of eating issues or weight loss, then do so and don’t feel inadequate for this. Folks weighing 100 lbs should definitely get one. But I would no more get a prophylactic appendix operation or take out all my teeth on the possibility that I might possibly have problems down the road, than I would get a tube in my stomach just because it might prove useful later. See the superthread for endless debate on this.

Boost Plus really saved me until we could figure out a way to make high-calorie protein, carbohydrate milkshakes. I still drink one every couple of days at midnight on my way back from playing hockey. It is 360 calories and a whole lot of vitamins and such. Some people like Ensure; some just do Instant Breakfast.

Have a project or a goal or something else to accomplish even beyond just taking care of yourself or even taking care of the family. It may be working part-time (or full-time if you are able) or it may be cleaning out a closet or bureau or even doing your genealogy. But accomplish something besides surviving. It’s great for your morale.

I read almost no inspirational books on cancer; the exception was “Emperor of All Maladies” which is a fascinating science-based account of cancer’s history. It truly makes you appreciate the sacrifices that previous generations of cancer patients made for us. I am alive because so many others aren’t.

I completely agree that we are a very caring family here. While my last scan said that there was nothing to note, I also have bad days and get so much inspiration from the folks on here. I hope I can return some of the same. Doug

Kent Cass

Goalie said:

My Mileage Varied
I was not NPC, I was tonsil cancer (tonsillectomy) and lymph node cancer (cisplatin and nine weeks rads) and then neck dissection to clean up the detritus. This time last year I was right in the middle of rads. It was not fun.

“Get second and third opinions on everything” is advice I completely agree on. That is why we are all on this list here; to provide others with our experience and say that this is what worked for us but not to be prescriptive for others. As people keep saying” We are all different” and “Your mileage may vary”.

Here are my views and recommendations:
Eat well as long and as much as you can. Eventually, it will be difficult whether because you can’t (mouth/jaw problems) or don’t want to (vomiting, food aversion, etc.) …but you must get nutrition. Eat meat if you like. You need to get protein and if you can’t do it creatively and well another way, now is not the time to experiment. (Yes, we have a vegetarian daughter but my wife worked hard to get balanced nutrition; you may not be able to do this.) You’ll probably have to shred it or put it into soups or whatever but do what you must. Eat carefully and mindfully but don’t worry about “organic” since your job is to survive now.

Don’t worry about your showers and such but, if your water tastes bad, get a filter. For about two weeks our water tasted bad and I drank bottled. Then it got better and we went back to filtered city water. Living and working in developing countries, I am used to most anything. I work in Mexico now.

Don’t worry about special enemas and, in fact, unless you really need them (you’ll know it) you may not need enemas at all. But KEEP HYDRATED by drinking more water than you ever thought possible. And take colace or something else to keep moving if it goes more than a couple of days. We really only had this bad problem when on a whole lot of drugs like for the chemo. They have quite an “impact” if you catch my drift.

Don’t get a feeding tube unless you need one. There are many of us here on the site who did not and who survived quite well without one. That said, if your health is compromised going into this thing (other than cancer) or if you end up truly needing one because of eating issues or weight loss, then do so and don’t feel inadequate for this. Folks weighing 100 lbs should definitely get one. But I would no more get a prophylactic appendix operation or take out all my teeth on the possibility that I might possibly have problems down the road, than I would get a tube in my stomach just because it might prove useful later. See the superthread for endless debate on this.

Boost Plus really saved me until we could figure out a way to make high-calorie protein, carbohydrate milkshakes. I still drink one every couple of days at midnight on my way back from playing hockey. It is 360 calories and a whole lot of vitamins and such. Some people like Ensure; some just do Instant Breakfast.

Have a project or a goal or something else to accomplish even beyond just taking care of yourself or even taking care of the family. It may be working part-time (or full-time if you are able) or it may be cleaning out a closet or bureau or even doing your genealogy. But accomplish something besides surviving. It’s great for your morale.

I read almost no inspirational books on cancer; the exception was “Emperor of All Maladies” which is a fascinating science-based account of cancer’s history. It truly makes you appreciate the sacrifices that previous generations of cancer patients made for us. I am alive because so many others aren’t.

I completely agree that we are a very caring family here. While my last scan said that there was nothing to note, I also have bad days and get so much inspiration from the folks on here. I hope I can return some of the same. Doug

Neo
Like Hondo, and a few others, I am/was NPC w/unknown Primary first diagnosed three years ago when two tumors showed on the left side of my neck. I would not classify my C as being "advanced."

You are getting the same chemo-rad regiment that John/Skiffin got, as well as my Cousin. The basic premise of that tx is to stop the spread and shrink what can be shrunk with the chemo, then later blast the remaining problem areas with the rads while also getting another type of chemo med. I'm not so sure about why they determine this regiment or that, and if it's not more a matter of what info the Drs have on treatment options, or still experimenting- rather than set and established criteria for NPC. Yes, would like to think they got it all figured-out, but there is due cause for questioning that. My tx regiment and C-attack plan was somewhat different, and you can click on my profile to see what that was. I am, now, 2 1/2-years post-tx clean of C.

I was getting the rads in 20 places/session, which usually lasted around 25-minutes mask time. Would advise going forward that the mouth takes the biggest hit with NPC rads. The only teeth I haven't lost the tops of are my Crowns, and the four teeth in the front I had the bottom's rebuilt. Also, do not be overly-concerned with what you see with your gum tissue- you will not know what's really fact until months after tx when the swelling goes down. Yes, you will lose gum tissue, and it's very possible bone at the bottom of your teeth will be exposed and cause tongue complications- that's when you go to a Periodontist to get dealt with. You will likely develop sores in the mouth and on the tongue, but that can't be helped, and mine were only temporary obstacles. Nystatin and Magic Mouthwash are all I was given to deal with, and of course the pain meds.

Just takes time, Neo. The key issue is to rid you of the C at whatever cost. Then, after that is done, the many recovery issues will be dealt with. Whereas you are getting the gradual assault on the C, my Drs unloaded all their ammo at my C right from the start. That is not to imply one approach is better or worse than the other- it is only to note that there is a significant difference, and I hope your Drs had reasons for your regiment, rather than mine. Best advice I can give is to keep your Drs informed on how you are physically doing- so they can help you deal with it as best they can.

kcass

helen martin

sweetblood22 said:

Loss of taste after 5 treatments.
I only had radiation, no chemo. I started on 4/6/09, which was a Monday. That next Sunday, was Easter Sunday. I could eat. I ate raviloi, antipasta and rack of lamb chops, but I couldn't taste any of it really. I actually made me eat even more, because I kept trying to taste and never felt sated. By the next Sunday, I was done eating for a while. I remember struggling to try and eat some broiled fish out at a restaurant.

my dad
My dad was recently diagnosed with advanced Nasopharangeal cancer, he is waiting for his PET scan, his catscan showed a spot on his left lung and emphesema in his right lung. He is 69...I am so distraught, we want to stay positive, the oncologist has said it is inoperatable but noone will tell us what his prognosis really is... any advise would be greatly appreciated ...

Hondo

helen martin said:

my dad
My dad was recently diagnosed with advanced Nasopharangeal cancer, he is waiting for his PET scan, his catscan showed a spot on his left lung and emphesema in his right lung. He is 69...I am so distraught, we want to stay positive, the oncologist has said it is inoperatable but noone will tell us what his prognosis really is... any advise would be greatly appreciated ...

Hi Helen

I too have NPC as it is called short for Nasopharangeal cancer, I been through it twice and I am still here doing well. I am not sure what you mean by it being inoperatable as there is Cybaknife. Make sure you Dad is going to one of the Major Cancer Institutions that know about Cancer and not some little city Oncologist. He can beat it and still have a good long life afterword.

PS: Welcome to CSN, please keep us up-dated on your Dad
Hondo

NeoTheron91

Just finished treatment today
Hi

I just finished 35 days of my radiation. Last 2 weeks was uncomfortable with all the side effects.
Well, I am glad that it's over. Thanks for the community for all the information and support.

cheers,
Neo

Hondo

NeoTheron91 said:

Just finished treatment today
Hi

I just finished 35 days of my radiation. Last 2 weeks was uncomfortable with all the side effects.
Well, I am glad that it's over. Thanks for the community for all the information and support.

cheers,
Neo

Hi Neo

I was wondering how you were doing, I know you are glad that it is over, now the healing can start. It may take sometime as the radiation is still working inside of you but soon you should start to see a change little by little. For me I started to taste things a little about two months after treatment stopped and my saliva started coming back about 9 months after. Hang in there and keep posting on how you are doing my friend.

Take care
Hondo

Skiffin16

NeoTheron91 said:

Just finished treatment today
Hi

I just finished 35 days of my radiation. Last 2 weeks was uncomfortable with all the side effects.
Well, I am glad that it's over. Thanks for the community for all the information and support.

cheers,
Neo

Gets Better
A few more weeks of the uncomfort, then you should very slowly start returning to abi-normal...

Best,
John

NeoTheron91

Skiffin16 said:

Gets Better
A few more weeks of the uncomfort, then you should very slowly start returning to abi-normal...

Best,
John

Thanks
Hi Hondo & Skiffin16,

Thanks for your reply.

I've just finished my radiation yesterday and still trying to quote with all the related side effects in the head and neck region.

My taste buds had gone since 3rd week of radiation, nose blocked, thick saliva and mucus build up so I have clear it all the time.

I've got my skin burned from radiation and some area are itchy and sore.

Lucky I have to use PEG for food supply and now I am relying on it.

Well, hopefully all of them will slowly gone as suppose to and get better soon .....

You guys have wonderful Merry X'Mas and Happy New Year!

cheers,
Neo

Hondo

NeoTheron91 said:

Thanks
Hi Hondo & Skiffin16,

Thanks for your reply.

I've just finished my radiation yesterday and still trying to quote with all the related side effects in the head and neck region.

My taste buds had gone since 3rd week of radiation, nose blocked, thick saliva and mucus build up so I have clear it all the time.

I've got my skin burned from radiation and some area are itchy and sore.

Lucky I have to use PEG for food supply and now I am relying on it.

Well, hopefully all of them will slowly gone as suppose to and get better soon .....

You guys have wonderful Merry X'Mas and Happy New Year!

cheers,
Neo

Hi Neo
You might want to ask your ENT about using the NeilMed Sinus Rinse to help clear the mucus out of the nasal passage; this will help you breathe a little better at night. Also try some Aloe Vera cream on the skin but lightly.

Wishing you well my friend
Hondo