Nasopharyngeal Cancer Treatment follow-up

You're the first person who has mentioned this mild shock when putting your chin down to your chest.  I had the same thing shortly after finishing treatments, but it went away about as quickly as it showed up.  I too thought that it may have been nerve damage, but whatever it was it's gone.  Hopefully yours will go away, too!

As you might recall, I was NPC also- but unknown Primary.

I would not be anxious about the first 3-month PET results. The historical fact learned on this Forum is that PET is for the PET Dr.s to establish a baseline to compare future PETs to. My first PET showed something, my ENT said, but he was not worried about it, and I'm over 10 years out. It is normal to be anxious, I guess, but there is also a history of the first PETs showing what turned out to be "false positives."

I never really experienced the Neuropathy you describe. Nerve damage to both sides of my neck...Yes.

I was FT dependent by the end of week #1, with tongue "scalding" that had the Chemo Dr. put me on liquid Morph. immediately, and cannot imagine my being able to have not used, like you did w/Smoothies. I was not overweight, dropping from 142 lbs. to 117. My saliva got aced, but taste did return after a few months.

My Tinnitus did not arrive for at least 7 years, so I was lucky w/that.

motorcycleguy said:

My first full body PET Scan

My first full body PET Scan came back with a NED - No Evidence of disease!!!

All of my blood test was good, and I'm up to 163 pounds (after dropping to 154)!

Life is great - and I wish you all the same results from your treatments!!

always good to hear NED after a scan.

motorcycleguy said:

THANK YOU!!

I appreciate all positive comments, best wishes and prayers; they WORKED for me, and I hope everyone going through this, gets lots of them!!

Amen to that Motorcyleguy!  We wish you the very best and prayers are very powerful and so glad you are doing better.  Will continue to pray for you always and wish you the best of everything! God Bless Us All to be NED and to have good reports from Doctors.  This forum was a Godsend to me and Thank you for sharing your news and your journey. 

motorcycleguy said:

Update,

Well, I'm going on 5 months since completing treatment.

On the plus side, I am able to eat and drink just about anything I want. My taste is still a little "faded", so I don't tend to overeat - which has kept me at a new healthier weight, anyway! My energy has come back quite well, and I'm feeling good in general. I lost some hair, but I have new (darker and with silver in it) coming in to replace it. It's about an inch long, now.

On the minus side, I still have Neuropathy in my hands and feet. They feel numb and although they work OK, the sense of feeling is not the same, so handling things like small, plastic objects is challenging. I'm told it should fade over time. I've also had hearing loss, probably caused by Cisplatin, although I still feel functional. I just have to ask people to repeat themselves, occasionally.

I wish all the best to any Cancer Survivors who happen to read this!

Glad you are mostly doing well with a few side effects thrown in and hopefully, they will diminish over time. Being able to eat almost anything is a big plus also. Keep on keepin on-God Bless

aprilshower55 said:

Delayed Side Effects from Radiation

Is been awhile since been on this board.  I think is about 7 years.  I was first diagnosis with NPC IN June 2011. I had 35 rounds of Radiation and forgot how many rounds of chemo.  Now I have stage 4 NPC which metastasis to my Lungs 6 years. I decided to stop Chemo in March, I couldn't take it being fatique and lack of energy.  I had my CT scan in Sept. and nothing has changed and I will have another CT in Dec.   I too was not able to eat very well after my first cancer.  I made smoothies and drank Emsure but at least I was able to eat small bites. Let me tell you 4 years ago I slowly started having difficulity drinking and eating.  I was using a straw to drink and needing to cut up my food very small to eat. After consulting to my doctor about my condition we ran bunch of test and confirmed that I have delayed side effects from my Radaiton back in 2011.  My throat and esophagus was not able to close when I ever eat or drink and would lead me to choking to death or getting a pneumonia from liquid going down my lungs.  Now I have a feeding tube feeding shakes for my food and I also not able to move my tongue so I am not able to talk, as well not able to chew my food even I could eat.  I also have dry mouth and not able to swallow my phlegm and need to use a suction machine to suck out from back of my throat or mouth.  I have big issue with sleeping too. I have to sleep at a 30 degree angle cause I would throw up. My nasal drips back down to throat and I would get up to use suction machine, sometimes I might get up every 2 mins. trying to suck it out, but it is so dry and can't get it out.  My sleep is hell up every hour at times and sometimes lucky I am able to sleep 2 hours. But there are times I am not able to follow back to sleep.

Does anyone out there have any issuse like mines?  I would love to hear how you cope with it all.  

Also NPC/told was Stage-3/unknown Primary- so they zapped me w/Rads in 20 places/session.

Your eating & drinking problem hit you sooner than mine hit me (around 9 years). Got my FT on 8/6 of this year. Dr. who did my swallowing test was amazed I didn't have pneumonia when I told him how long I'd been dealing with coughing-up Ensure.

And definitely can relate to the saliva/phlegm. Have called it "toxic saliva" to my GP for a couple years, and have been using a spittoon for about that long. Have one of those little arced hospital pans on my car's front seat to spit into. At home I've been spitting into waste baskets for years. Stuff is like a thick white foam. And not being able to drink with the danged dry mouth/throat...I basically said to heck with it, citing quality of life, and have been sucking on ice cubes since I got the FT. When my throat got real dry I experienced discomfort in my lower-right of throat. Just the little moisture of sips have solved that issue.

I do not have the sleep issues you have. Do not lay down after FT feedings until at least 1-1/2 hours have passed. You have my sympathy for your issues- sleep is so very important. With my energy level, I take a couple hour evening nap, and later get a typical 6 hours in bed. First thing I do when I get up are deep coughs which do produce the saliva, or water from the ice cubes.

I have wondered about my lungs, so had my ENT order a lung X-ray. Have heard nothing. My GP has refused to do a lung CT. Meet with him this Friday, and just might request. I dropped from 138-115 lbs., and with the last 3-plus months on Jevity and Boost VHC have only gained a couple pounds. Physical Therapist said I should have gained more with my Body Mass Index, so there might be something going on...

Truly am sorry to hear about your struggles. The Rads can and do take a toll years later. I had around 8 years with my only complaint being neck spasms and a constant stiffness. And then along comes Aspiration, and now the permanent FT- all because of scar tissue created by Rad damage.

Prayers are with you.