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My beautiful husband, ....Has stage IV nasopharyngeal cancer...very long post

Spongemom_Sweatpants's picture
Posts: 1
Joined: Apr 2009

Tom is everything to me. We met in a rehab/treatment center (he was there for DUI and I was there to clean up from I-V drug use addiction).....they told us we would never stay together. That was 3 kids and 15 years ago.

He has been my strength, my joy, my world for all these years...thru my many relapses and a mental breakdown, attempted suicide, fibromyalsia diagnosis (brought on by previous drug abuse according to my doc, and then in Sept 08 I had spinal fusion surgery for two herniated disks (I know, I'm a mess), and too many other HUGE hurdles to mention here....we have made it through and are now homeschooling our children, own a tree service, and are living the american dream............and then the phone call came

The lump in his neck came up after a tooth abcess was removed. It shrunk and then came back so after a month of this and 4 to 5 rounds of antibiotics we finally had a biopsy. At first the ENT (Dr Witherspoon....happens to be Reese Witherspoons father...go figure) said there is nothing to worry about...shouldnt be cancer, but we need to spend some money on Tom's teeth and gums before something worse happens. At the follow up from surgery, the pathology results came in and everything looked great...all negative for cancer...we were just waiting for 2 more specimens but that was pretty much routine...nothing to worry about.
A week later he called Tom's cell phone. Tom said he sounded more surprized than Tom was when he told him that one of the specimens came back positive for cancer. Then it was 2 more weeks of waiting before we could get in to see anyone about dealing with the cancer which at that point we knew nothing about.

Now we know he has stage IV Nasopharyngeal undifferentiated squamous cell carcinoma (dont know if its A or B but I printed a picture for the doctor to circle for me where the cancer is and to write at the top what the T- N- M- is....couldnt get her to be specific so I figured this way she would have to be)

Thursday we had our first round of Chemo. 132mg of Taxol and 350mg of Carboplatin which will be given 1x a week for 9 weeks and then 7 weeks of radiation along with half the dose of chemo that he is getting now.

We have switched roles now it seems. I am now taking care of him instead of the other way around. He gets grumpy, but we are closer than ever (if thats even possible) and my worse fears just keep creeping up every day it seems......

how will I take care of the boys
how are they going to be able to handle going back to public school
what if he gets sicker and I cant help him
what if I lose him

I know there are a lot of you on here that have gone through what he is going through and some who have gone through what I am going through....any advice, prayers, support, hope, whatever you can offer will be taken to heart.

Thanks for reading the eternal post.

Kelly Tumbaridis from TN
(I have a facebook for pics and updates on Tom if anyone wants to visit) http://www.facebook.com/reqs.php#/profile.php?id=1706730666&ref=profile

luckyfl's picture
Posts: 42
Joined: Apr 2009

Hi Tom and Kelly, your case is very impressive but you are not alone with your hubby i see many here with the same type of cancer and soon or later one by one they will get to you with their comments and support.
I am 46 and was dx with adenocarcinoma suddenly in February this year, after i find it myself goin around with the tip of my tongue like a dump ??, it was just a little tiny rough blk bean type area near my last molar in the soft palate, no pain ,,nothing ! just there , since iam a nurse i rush to my dentista to check me out and , he told me the posibility of a low grade adenocarcinoma on my small salivary gland,, he was right after a biopsy done and i pick asap a day to removed ,March 4th, they remove the little tumor ,was not spreaded but the ENT recomended 37 tx of radiation to eliminate any scape cell and asure my future .I wait olmost 2 month for that hole to fill before start the rad and finally i started May 13 going on my 10 days ,,,is ok so far even tha some small sores start apear in my palate,, the hurt like heck !! but i have to go through like it or not .
Give lots of help to Tom and get some your self if at one point you need it ok ,i cannot twll you much about his cancer type but please get all the info you can get ,that area is very hard since sores in there are bad for good nutrition ,i hear that others with that cancer need a peg eventualy in order to eat well and keep up .
God bless you and him ,hang in there and pray ,,dont even think no matter what happen to go back to ?bad stuff? , i used to smoke cigarett only social and only by thinking that ,the dam cigarret maybe give me this ,,i hate it !for good ., and was not the cigaret acording to the ENT but ,still never get down.
Keep in touch, Roxie for m Florida

RoseEm's picture
Posts: 32
Joined: Apr 2009

First of all, your ENT probably missed it with the first tests because it is so very rare for caucasians to get it. I'm sure you probably know that by now. My ENT and every doctor, nurse and technician just stared at me when I would tell them my diagnosis.

The treatment sounds pretty much the same as mine - I had three different "servings" of chemo but the same amount of radiation. Be ready for a few things the longer the radiation goes on. First, taste is affected and if he is nauseous, then he may want to skip eating. Don't let him! You must try to get him to eat. Even if it's smoothies, something like Ensure - he needs calories. Eventually, I had to have a g-tube (gastrointestinal) inserted because I could no longer swallow. That doesn't happen to everyone.

Second, get a small handheld recorder and take to all appointments. His oncologist should have given you a list of things that, if they occur, you need to call them. Do NOT take this lightly. Better to call too much than too little. If you have a recording of an appointment, it will help you when you have questions after you get home.

Keep a record of the treatments and meds. It can be very helpful with possible future visits to new doctors, hospital, etc.

Keep a daily calendar of what he's to take and when. Mark each off as you go.

My doctor told me, "You are going to get very, very sick. You are going to hate me at times. You will not think you can take it anymore. Remember this is all to save your life and that's why I'm here." He didn't lie to me.

Do you have a network of family/friends who can help you - talk to you? I know how scared my caregivers were, but they were troopers - my personal angels. And yes, there are quite of few of us who have/had this kind of cancer. Most of us check here fairly often and will be happy to serve as a shoulder. It's OK to cry. Tears let the fear out. Be ready for him to "snap" at you. It's a lonely path - even with a lot of people around you.

Good lucky on your journey - I pray it ends as successfully as mine.

RoseEm's picture
Posts: 32
Joined: Apr 2009

You may want to check the "I'm new here" thread. There's lots of good stuff on it!

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