NPC Survivors

El808

Hi,

My husband finished up chemo/radiation treatment for NPC stage IV over 2 months ago and are are anxious for the 3 month mark to do the PET and CT scans to see the results of the treatment (he only had one CT scan during the treatement - and it was at the half way point).  He still has some of the same symptoms he had prior to getting treatment - numbness and tingling in his face where the nerve was affected, congestion, etc.  Did any of you have the same symptoms after receiving treatment?  How long did your symptoms last?  This is very nerve wracking waiting to find out the results...

Did anyone have to do a second round of treatment for NPC? 

 

Thank you for listening!

 

Barbaraek

Empathizing

We too are waiting for our first PET scan since being treated for NPC. I understand it's hard to wait. On the other hand, we have been cautioned not to be discouraged if some areas still read "hot" on the first scan due to inflammation and the fact that you still may be sloughing off dead tissue from the radiation.

I would also think that congestion would not be unusual if tissues are inflamed or still healing from chemoradiation. As far as tingling and nerve pain goes, I don't know...but we have also been told by our Doctor that sometimes nerve pain doesn't always go away - it's as if your neural pathways created a new roadway in your brain. Sometimes chemo can leave you with a side effect of neuropathic pain. In any case, you are absolutely right - it IS nerve wracking!

Your docs will evaluate your husband's status and then go from there. Hopefully you'll have good results! I do know that there are more tools in the toolbox to treat NPC so for those who have recurrence there are still treatments that work.

Barbara

phrannie51

I think some things are here to stay....

and it's hard to say where the disease and the treatment overlap causing the same or similar symptoms.  This is just an example....one of the first things I noticed happening to me....a month before a lymph node popped up, and 2 months before any diagnosis was ringing in my ears.  Somewhere along the line, the symptomatic ringing traded of for one of the side effects of Cisplatin....ringing in the ears.  I haven't had a moment of silence in almost 4 years.  The side effects of radiation can be confusing, also....like nerve damage/soft tissue damage....

Like Barb, I think conjestion....stuffiness....is pretty normal.  I'm assuming that your husband is being looked at regularily by his ENT, and the Dr. is seeing the tumor shrink? 

It IS nerve wracking having to wait.....focus on healing for now....like trying new foods, new drinks....everything is new now....keeping it one day at and time, and not trying to "see" out into the future keeps us calm and sane.....

We do have a member here who has done NPC treatment more than once....Hondo....but really, for now....you don't have to look out there.....keep in mind that your man didn't just get over the flu.....getting healed up from this treatment is done in weeks and months....

Hugs...

p

PS....I had NPC, and am now 3 years from the last day of treatment.

debbiejeanne

El, my only symptom was a

El, my only symptom was a nagging cough.  2/28/16 will make it 4 yrs since my tx and i still have that damn cough today.  it isn't as constant but it is everyday!  i had cancer of the larynx.  i pray it gets better soon for your hubby and you.  the entire road of cancer is nerve racking, believe me, we understand.

God bless you,

dj

Kent Cass

debbiejeanne said:

El, my only symptom was a

El, my only symptom was a nagging cough.  2/28/16 will make it 4 yrs since my tx and i still have that damn cough today.  it isn't as constant but it is everyday!  i had cancer of the larynx.  i pray it gets better soon for your hubby and you.  the entire road of cancer is nerve racking, believe me, we understand.

God bless you,

dj

follow-up scans

I was only stage-3, and didn't have symptoms going in, other than enlarged nodes, losing weight, and congestive issues. The only symptoms that troubled me were the post-tx side effects so many of us endure. I'm over 6-1/2 years out for NPC, now, and still suffer from nerve damage to my neck from the rads that sometimes extends to my jaw and lower face. So, if he had nerve problems going in, I think it likely the rads may have done a little to make that worse, as I had no nerve damage going in.

A word of caution about your 3-month scans: typically, those are only to provide a baseline for comparison to the scans to follow over the next couple years. That first scan is somewhat notorious for showing false-Positives, and I remember several whose Drs did not understand that and took them to the OR and removed nodes, etc., only to find out that everything was Negative. Woops, Dr. made a mistake. So soon after tx, scar tissue was something frequently mentioned as a cause for the false-Positives. Most people do get anxious about that first PET/CT, but the majority of the time anything that shows is the f-P. My ENT told me it was noted that something in my mouth had lit up with mine, but he wasn't concerned about it, and set my next visit with him for 8 months later! Just tell him to stay away from anything with sugar, as C does love it.

kcass

corleone

Another NPC survivor

I had stage 3 NPC. Finished concurrent radiation and chemo (cisplatin 2 sessions) 3 years ago, and adjuvant chemo (carboplatin and 5FU), 2.5 years ago.

I experienced the usual side effects, like:

Loss of taste: it will get back very slowly, but it will. In my case the first to reappear was the taste for salt (after 1 month post radiation); sweet started to came back after 2 months, but it’s only partial, even 3 years later. Bitter taste came back after ~3 months. I also experienced taste “fatigue” meaning that even when the taste came back, the first few months I felt that taste only for the first 2-3 bites, and then just faded away quickly. Later on, the taste was more persistent.

The saliva hasn’t fully returned yet though, but I can eat anything, including bread and meat (with the help of a little bit of water).

Mouth pain (mucositis) was a problem a couple of weeks during and after radiation, when I couldn’t talk. Pain medication was helpful.

I had ~50% hearing loss (mainly high pitched sounds) caused by cisplatin, but it’s uncommon. Tinnitus (ear ringing) is very common, though. Got used with that as well.

In a nutshell that’s my experience. Of course, add to that fatigue (especially the first few months), and then gradually improving. From time to time nausea, but again the first 2-3 months after finishing the whole treatment.

More recently I started to experience muscular spasms in the neck area (like torticollis) which is annoying at times, but I don’t consider that an issue. I also had otitis media just a few months back, and I experience on and off vertigo. Most likely otitis was facilitated by the radiation-related fibrosis.

About the late side effects: I haven’t experienced and thyroid related issues (Hypothyroidism), but that might be added later on the list. No osteonecrosis, but I take care of my teeth; hopefully with saliva coming back, I’ll dodge that. I go for periodic checkups every 6 months, so far NED. I also check periodically my blood pressure - which might be affected as well in the future (some baroreceptors in the neck area can be affected by radiation).

 

Very important: keep swallowing, even if it’s only water or tea, regardless if you have a crappy taste or not. It’s vital to keep exercising those muscles. Also, keep an eye on the dentures, flossing is extremely important (in addition to the usual brushing and fluoride trays).

El808

Thank You

Thank you for all the information.  I guess patience is a virture I must learn.  I'm thankful that there are survivors out there willing to share there experiences and help others.  I hope to be of help some day.

wmc

Welcome to the H&N Group

Welcome and also sorry you need to be here. I never had chemo or radiation, just surgery for my tumor hust above my vocal cords. I had ringing in my ears for several years and confirmed tinnitus. What I did have that is gone after the surgery is pain in my left ear to where it woulg get so bad I would get tears in my eyes because of it. I also would hear, or think I heard a nose like gunshots or loud bang like an explosion. Now I knew the sounds were not real as my dog never moved nor the wife never heard them. It would be when I laied down to sleep but the left ear which was on the pillow is the only one I heard the nose. It got so bad I thought I was really loosing it, I new the sound was not there and only in my head. One of the side effects of the cancer I had is pain in the ear. After the surgery I have never heard them again. I will always have tinnitus do to being exposet to loud noise at work and it never goes away. The sound you hear with tinnitus is not really there. It is your mind creating sound that you have lost and should hear but didn't so you can't cure it. Oh the tumor was on the left side of my throat. Don't know if this helps or confusses more.

Bill

Hondo

Seconds please

Hi 808

Yes there are a few of us here who did treatment twice, I am one of them, my last treatment was in 2005 and I am still alive today 10 years later. I have a lot of problems with radiation late term side effects but I am NED for anymore NPC. Sorry but the nerve damage does not get any better with time.

 

Welcome to CSN H&N

Tim

lifeisDHA

My boyfirend was diagnosed with NPC

last August, had chemo/radiation therapy,  and had to do a neck dissection this Sep to remove some cancerous lymph nodes remain in his left neck. the dissection procedure itsefl wasn't so bad. The recovery was quick.