Stage IV Nasopharyngeal Cancer, newly diagnosed

Mandabeth82 said:

Drugs
Do you remember which drugs they gave him? I know we're doing Cisplatin Once a week for three weeks. And then Gemzar once a week for two weeks. All in all he'll only be doing chemo once a week for three weeks and one week off. Rinse and Repeat. His doctor did manage to tell us that he'll be following up chemo with radiation once the tumors have gone.

lalilinn said:

I'm going through almost the
I'm going through almost the exact same situation right now but it's with my dad and it's metastatic and spread to his lungs, liver and bones. I had a horrible experience with our doctors too and I'm in the middle of finding someone else to speak to as well. I also heard a lot of great things about MD Anderson and that it's rated #1 cancer hospital in the country. Did you ever reach out to them? Hope everything goes well for you...

timreichhart said:

About this cancer
In reality this cancer is so rare for anybody in US to have it from what I was told by my team of doctors. But more and more cases of this type of rare skin cancer are being found each day. Because I was only 24 and have been married for less a year when I found out I had NPC stage 4+.

Also little background how I found my own cancer was this: I had bad ear infection (right ear)started back on christmas week so my wife put ear drops in it to see it would go way so I waited for a week (already January of 2010) and I still didnt see any improvements in the ear infection. So I went to doctors care and told the doctors that I have a ear problem so they looked into my ears and seen major ear infection so they gave me a meds. So I took all the meds for a week and after week I was still not see any improvements. So I went back to doctors care a week later and told the doctor on call that I was here week or so for a ear infection and told them took all the meds as they told me and told the doctor I still feel there is a ear infection so the doctor looked into my ear again and he said the ear infection is still there. So the doctor ordered 2 shots of meds in my butt and then sent me home. Now I am in first week of February and I still was not feeling any improvements in the ear infection so I called up my dad and asked him what to do and he told me go up to the ER. So I walked upto the ER at 9pm at night when it was cold thank god the ER was only couple blocks away from my apt. So I walked into the ER and told the person that I still had major infection so I was taken into the ER waiting room waiting for ER doctor and the ER doctor walked in and told her that I went to doctors care and was given meds but was not seeing any improvements in it so ER doctor looked into my ears and ER doctor said the ear infection still there. So ER walked out of the room already 9:30 so ER doctor came back in about 20mins later and told me she ordered CAT of the head and neck. So I had CAT with contrast done and then went back into the ER waiting room so about hour or so ER doctor came in and said there was 2 masses that they cant figure out it was so she told me to contact a ENT doctor. So I contacted the ENT doctor asp and was able to get in quick (already middle of feburary) so ENT doctor checked me out and he said he was going to order a PET scan to see what they was looking at. So Next morning I had a PET scan done and after the scan was done went back home and waited about 4 days and got a call back from ENT doctor told me to come back in to talk over what they found and he said there is 2 masses showing and he said he was going to order a biopsy on the right side of the neck. So next morning I had biopsy surgery and when they looked at they said it was cancer. So I had to wait 2 weeks to meet with the radiation doctor and chemo doctor due to insurance to clear. So we are already in march and met with the chemo and radiation doctor and explain everything what was going to happen. So chemo doctor ordered a PORT insert for chemo so after meeting with them I had surgery again for the chemo port insert. After that was done second week of march is when I started chemo treatments for 3 months then in last week of july I started radiation with IMRT for 7 weeks 5 days straight.

Now I am most a year post treatments.

Sorry for the long winded story about how I found out I had cancer.



Here is what side of effects you may have during treatments.

1:Not wanting to eat - during radiation treatments because I didnt eat for 7 weeks straight and lost about 50 lbs because of it.
2:your hair will probably either fall out or thin really out during treatments and after.
3:throwing up alot after try to eat something.
4:tease will be really messed up.
5:you will have mouth sores during treatments
6:heavy mucus
7:sore throat
8:dryness in the mouth and throat

here is what the side effects I seen after treatments:

TMJD (jaw problems you may have to wear a splint for it for about a year)
loss of saliva but will come back about 12-18 months post treatments.
neck and shoulder problems
sleeping problems
swallowing problems
hacking up small traces of blood
dryness in the mouth and throat
heavy green dried up mucus
hearing loss/problems

Be ready to be scoped every time you go back to ENT doctor because every 2 months I get scoped to make sure the cancer and any tumors dont grow back in the lymph node system.

my girl said:

Thanks
I appreciate all your feedback. I am trying to get as much information as I can, and really just trying to find some connections with others who have gone through this. My daughter has been through so much in just 2 months, and still has a long way to go. She is doing well and I am finding that she is handling everything very well as long as she knows everything and their are no suprises. There will be bumps along the way, we both know that this will not be easy. She also was misdiagnosed for sinus infections and allergies for months before they found the tumor.