nasopharyngeal cancer

My husband was diagnosed with squamous cell cancer last March of 2002, it was in his piriform sinus which is just behind his voice box and the opening of his esphogus. He had 40 aggressive radiation treatments and went thru hell. His throat will be dry the rest of his life but they did get rid of the tumor. Thought everything ok. He also had a feeding tube from May thru December. He was just starting to get better Feb. 2003 and his elbow starting hurting. Went back to MD Anderson and his cancer metastasized to his elbow and lungs. They took care of the bone cancer but they couldn't his lungs (12) tumors. He is having chemo back home here in Topeka, Ks. HE can not be cured but they are doing chemo for better quality of life and longegivity. It depends on what type of cancer your husband has and how everything effects him everyone is different. If you need more help and would like to visit more. email me mktgintl@inlandnet.net Good luck and God's prayers are with both of you. Hoping to hear from you, Candy

I was diagnosed with nasopharyngeal cancer last October. I've had chemotherapy and rediation, and I completed those treatments in March. So far, things look all clear, but I have some on-going infection, fungal growth, and necrosis in my nasophrynx, which complicates things. All I can say is that every month since March has been better than the month before, and the healing process is slow but it improves month by month so you eventually feel better. I never had anyone to tell me how recovery would likely progress so I'll be glad to tell you how things have evolved for me over the last year (I'll give you more detail than you probably want but I would have wanted as much detail as possible). I have been back to work for several months now, I have nearly all of my taste back, my nasal swelling is reduced from the months before but not completely healed, I have adjusted to the dry mouth, I can eat a fairly normal diet provided that I drink a lot of water with my meals, my hair is still patchy where I received radiation but it appears to be getting thicker, I'm still grumpy and don't have all the energy I used to have but things are generally headed in the right direction. For me, the worst thing has been the loss of play time with my chldren due to the lack of energy I experienced after radiation, but that has greatly improved over the summer. Getting off the pain and nausea medications seems to have expedited the healing process. If there are any questions I can help with, please feel free to contact me.

John

motorcycleguy said:

Currently getting treatment for Nasopharyngeal Cancer

I was diagnosed with NPC, around the 1st of the year (2019). I am currently ready to finish week 5 (of 7) of radiation treatments. I am also getting "chemo-assist", and will receive 3 sessions of "follow-up" chemo, after radiation.

So far, the radiation hasn't been too bad, but my Oncologist tells me I'm doing great, but to let her know if it gets worse. I have a "sunburn" on my face and neck, and that's about as bad as the pain has been so far.

The bigger challenge, right now - is the "taste" issue. My sense of taste makes it tough to eat solid foods. My Girlfriend has been a Godsend with the high nutrition smoothies though - and I can still chug them.

I just finished my 2nd chemo-assist a few days ago. I've noticed some constipation from that. I'm trying to drink water to get through that.

My biggest impression so far, is that the treatment hasn't been as tough as it was described to me ... but it's different for everyone.

Certainly, having a support team, and keeping up one's spirits (and sense of humor) is VITAL!!

NPC survivor here

I am 6.5 years post treatment for NPC. From my (and others) experience the worst is actually the last week and 1-2 weeks post radiation. It’s perfect you are doing great-ish right now, but don’t be discouraged if things go south from here. You’ll recover slowly but steadily (you should go by weeks, not by days, because there will be a roller-coaster recovery).

Constipation was definitely a problem, so hydration is good, but not enough; also consider laxatives that your doctors will/should recommend.

If you have specific questions please start a new thread, to get answers from other participants. 

10 year survivor- NPC

Unlike Corleone, my post-radiation was not worse- not even close. I was too sick for Rads in weeks 5 & 6, during which I spent 4 nights in a Hospital. Resumed the Rads in week 7, and it was smooth sailing for me to the end of tx. That's not to say it was easy, but the worst by far for me were from the end of week 1 thru the middle of week 6. I did have a G-tube, unlike you, so eating was not an issue for me that first month post-Rads. I did drink a lot of water, then gradually started drinking Ensure to replace the tube's Jevity. Taste buds returned only 4 months later when, at a Company golf outing, I ate a brat with mustard and relish- and it was a Holy Cow that tastes great. Like others over the years, the spicier foods are the most tasteful, but I did start my eating w/pancakes plastered w/syrup & butter.

I do know a lot suffer more, or think they do, post-Rads, but not everyone. And as far as my mouth taking a hit- my Chemo Dr. started me on liquid Morphine at the start of week 2 when she saw the flesh colored stripes running lengthwise on my tongue, and I got all my nutrition by way of the G-tube during tx and a couple months after.

Stay positive, and hope your experience after the Rads is as good as mine was.

Getting ready for final week!

Well, I'm looking forward to finishing my final week of radiation and chemo-assist. (Although I have 3 sessions of "follow up / seek and destroy" chemo, afterwards.)

I'm still handling it very well, so far. My taste is still "out" but I find I can still eat solid foods like eggs and fruit (mostly insert, chew once and swallow). If I chew almost anything tool long, it starts tasting "waxy", and I find I can't swallow it. But, I still haven't used my feeding tube, and I'm looking very forward to getting that GONE!

I do have occasional nausea, but I have pills that seem to keep that under control, and I haven't thrown up, yet. I also find that I get tired more easily (presumably because my body is burning so much energy to heal). I fell asleep almost immediately, yesterday, after a light hour at the gym...

I'll try to remember to post in the next 3 weeks, as I'm told (by some) that the week or two after radiation can be the worst. At present, this seems hard to believe, just because it seems like in just a weekend, my skin has recovered a bit, and I already feel better. But, as my Oncologist reminds me - "don't get too cocky, just yet!"

My biggest asset is my girlfriend, who makes the high nutrition smoothies, and keeps my attitude from going off the rails! (I find that keeping a positive attitude and sense of humor are VITAL!)

I sincerely hope that all people with Head & Neck Cancer get the great news that the treatment "got" it! (I know I will be looking forward to that, myself).

Good luck to all of you!

CivilMatt said:

welcome

Hello lautry,

Welcome to the H&N forum, you don’t mince words, you want the facts, the truth, the amount of (active time ((Matt’s words))) you will spend dealing with this cancer and the “worst” thing about having it.  Why you would want to jump all the way to the “worst” character trait of this cancer is not for me to question why, only answer to my ability to satisfy your curiosity.(more of Matt’s words, not yours).

Nasopharyngeal cancer can be a bad cancer as attested by the members who have answered your post today. I did not have this type of cancer; I had stage IVa, SCC, BOT, 1 lymph node, HPV+ (surgery, rads & Erbitux). I t wasn’t too much fun, but I am still here.

I will tell you some of my friends on here have done very well, as far as treating the cancer successfully, and  many of them have the standard problems which many H&N cancer patients have, i.e. dry mouth, lack of taste and so on. It is not uncommon for those who have shared their stories to have serious complications needing additional treatment(s).

Some of the members you may wish to contact via, Private Messaging are: Avisemi, Barbaraek (caregiver), Christmas (15+ year survivor), coreleone (doing good), peneloppe (cargiver), Psychedoutca (caregiver), Tryinghard and Wolfen.

I can categorically tell you, without doubt, that the last H&N member I listed experienced the “worst” this cancer can throw at any of us.

I hope the very best for you and hope you stay away from the “worst”.

Matt

corleone, nice to see you, I just included you in my post,

 

Lautry's post was from 2003.

Lautry's post was from 2003.  It would be nice to hear how her husband is doing now.  I imagine many people get through the rough parts then just get along with their lives, and that's a good thing.

MrsYo said:

Any Itching Like Feelings due to Chemo and RAD?

Hope all are doing as well as can be expected with better days ahead.  Someone dear to me was diagnosised with Head&Neck- Nasopharyngeal Cancer in 2016.  Survived the brutal but necessary Radiation and Chemo treatments.  Over 7 months ago, this dear friend start having symptoms of  body heat/itchy-pringling type feeling on back thigh/back and arms that are unbearable.  It appears when theres excitement good or bad anxiety and doctor's can't figure out what or why.  Has anyone here experience such a thing? If so, any recommendations for coping or treating the condition?  Please help!  Thank you. 

It Sounds Like

Some form of neuropathy from the chemo if they had any of the platin-based chemos such as cisplatin for treatment. I have neuropathy in my hands and feet and somewhat radiating up my forearms and calves of my legs but is mostly in my extremities. I have the numbness and tingling but have not experienced the heat or itching you are referring to. Hopefully, someone else on here can narrow it down more for you-God Bless

Logan51 said:

Heat

Post-Rads & Chemo, my normal body temp. dropped to 96.4*, due to the impact on my thyroid. 10 years out, now, the normal is 97.4*, BUT my temp. on a typical day fluctuates from that to 98.4*. The heat would be due to thyroid. Did not experience itching problems out of the typical, or any anxiety issues.

Thank you very much for

Thank you very much for responding! 

NPC -> 8 years on -- the after affects I have

My NPC was directly behind the top part of the nose + spread into a small portion of the brain (Stage 4 grade III).

I AM ALIVE.

> But problems with weak immune system which happens every two weeks or so - nothing serious after what we have been through; colds, virus or some other irratating things.

> still difficulty eating dryish foods especialy meats. Apparently 50% of you taste is driven by smell ..... yes seriously, so since I can no longer taste due to the radiography, my smell is incredable as it has remarkably over compensated (as has my hearing in my only working ear now).

> headaches, ear infections etc, have seen an improvement in the last few months (good news, I can assure you).

> My biggest problem is this daft thing called "Extreme Chronic Fatigue", which means I can no longer do my job (since treatment) + I need a siesata daily. For me that is still with me, wheras most others will have gotten over that by now (good on you).

 

Whatever your after effects and however hard your daily life is YOU ARE ALIVE, if you want to have a downer for the day, so be it.

 

It is diffuclt though, for me to accept I am no longer that physically and mentally fit man I once ws.

 

 

Hi, My husband just recently

Hi, My husband just recently been diagnosed wt Nasopharengeal CANCER ;stage 3 .He is 52 years old ,in good shape ;full of energy man ;( do biking ;running and always on gym).He will start chemo / radiation on May 22.Im still in shock ;anxious ;cant believe state .Its good to know ;there is a support group like this .JUST KEEP ON FIGHTING !