I was diagnosed on March 5th with Nasopharyngeal Carcinoma T1N2M0, after 2 months of going to the Dr. over an enlarged lymph node in my neck. He finally referred me to an ENT, and the bad news was delivered.

I've had one chemo treatment so far (Cisplaten), with one scheduled every 3 weeks for a total of 6 treatments, and have two weeks of radiation done with 23 more rads to come. I'm just now starting to feel the effects of the rads....a couple of mouth sores, and my throat is a little sore.

I had a PEG Tube put in right away, as I'm starting treatment at 93 lbs, and both my Oncologist and the Rad-onc felt this would be smart to not wait to see how I did before putting it in.

Just wanted to introduce myself....now I'll go back to reading .

p

P, welcome to OCF! Im glad you have found this forum. Its full of compassionate, caring people who are very knowledgeable and supportive. Treatments are not easy for everyone, a lucky few sail right thru with little side effects.

With taking the 3 large doses of Cisplatin, watch carefully for any hearing issues. Make sure you speak up and tell your doctor immediately if your hearing changes at all. Also make very sure you take in adequate water daily to help flush it out of your body. It can be very rough on the kidneys so this is vitally important!

Im very glad to read you already have the PEG tube as you are small. Your body is working extra hard to not only fight off the cancer but to rebuild itself while you are going thru treatments. Make sure you continue to swallow something every single day, several times per day even if it gets difficult. Your daily calories should be 2500+ and water a minimum of 48oz. This sounds like alot but your body is burning calories up at an amazing rate.

Oral cancer can be difficult to go thru the treatments as they do tend to get progressively worse as time goes on. Keeping good hydration and nutrition will make a huge difference in how you do. Here is a list of easy to eat foods that mostly have a smoother texture so go down a little easier.

I hope you have lots of support at home. Feel free to ask any questions you have and you will get several honest replies from people who know, they are the caregivers and survivors of this horrible disease.

Wishing you all the very best as you go thru treatments!

List of Easy to Eat Foods

Best wishes to you. Stay strong and positive, you can get through this.

Hi,
We are here for you. You are already running with it so at least that part is over. I think the beginning was the worst because you just don't know waht to expect.
Where are you being treated?
Christine is right about the hearing. Kevin has pretty much lost his left ear. We are assuming it was from the Cisplatin, as that is a side effect, but he also had Taxotere and 5FU at the same time all 3 times. He did the radiation after that with Erbitux each week.
It is about the right time for the mouth sores. Have you used the feeding tube and are ready if you have to go to using it primarily? If not, be sure to get there. Sounds like your docs were good about keeping you ahead of the game. Kevin lived on scrambled eggs and pasta with butter and Ensure would he just couldn't eat solids anymore. He had a PEG, but HATEd it. He ended up losing 56 pounds, but had it to spare so it wasn't too bad. It was a lot of muscle though, that's the bad part. He is 6 months out and still hasn't put any of the weight back on permanently. He will gain a few, then lose all of it. We just go back and forth. That's with eating a full diet again.
You are coming to the hard time, but you sound prepared. We are here for you. I hope you have a caregiver going through this with you?
Keep in touch.
Blessings,
Kathy

Hi we
Com and good luck getting through it..l we're here to listen and help if and when you need it... Hugs!

Thank you everybody for the well wishes, and the advice....I'm being treated at the Kalispell Regional Medical Center....I came this close ______ to going to MD Anderson in Houston...until I found out that we have the IMRT here...radiation being the scariest part of all this to me. Being far away from family and friends didn't appeal to me, either.

My husband is being my rock. He takes me for my amifostine everyday, then picks me up and takes me to radiation...I thought at first I could do this part myself, but the amifostine is just too darn hard on me...plus all the anti-nausea meds that go with it, would impair my driving skills. It doesn't matter tho, because he insists on taking me and picking me up.

I have two sisters here in town, both who have taken on all cooking....for me, and for my hubby...every weekend the food piles in, and I'm eating for as long as I can. I did practice with the tube, tho...thought I better have that under control before I truly need it. Piece of cake, no problem at all. So far, I haven't lost any weight, even with the mouth sores....I just pile in the food behind my lips ...it's a little messy, but what the hey!

Emotionally, I seem to do ok....tho by the end of the week, I think I've hit my coping limit, weekends are a blessing. I keep trying to look at Amifostine as my spit saver....give it a positive name...but so far "daily sick" seems to fit it best...LOL. I know this third week will be the beginning of the hard times...I'm as prepared as anyone can be for the unknown...one day at a time, don't fight battles that haven't arrived yet.....I'm conciously making myself follow in a positive thought process....since by nature, I'm more of a worry wort, fretting type person...a control freak, I guess...LOL. Learning new things about myself everyday.

Having people to talk to who have gone thru this, or are going thru it at the same time is a sanity saver.....I can't imagine doing this alone.

p

Things get hard at week three and four and progress to about two weeks after treatment ends - even if you're using the peg try to continue drinking and swallowing. It will maintain the reflex - hugs and good luck, it's not fun but with determination you will get through it.

P,

First off sorry that you are now a member of our "society" but believe me you have found THE BEST source of information and help to get you through this.

One thing I'm curious about your Tx when you say you will be given Cisplatin 6 times spread out every 3 weeks. You may want to confirm that as most of us either got 1 Tx a week for 6 weeks or 3 Tx's over the 7 weeks of rad.

I'm sorry to hear of your diagnosis. I went through treatment for Stage IV NPC in 2008.

Please let me know if I can help with any questions.

Mark Lin

Hi P, it's me... from CSN. You are doing so GREAT and have the best attitude about all this. You are mid-way thru week 3 (I think) and sounds like you have everything organized in case you need them later. Good idea to "practice" with the tube, rather than wait until you can't eat so well and then have to do a quick lesson. I was lucky also to have the best hubby in the world as my nurse. There were days that I could barely get out of bed, let alone drive myself to treatments. I had great neighbors who cooked for hubby so he could care for me. Wishing you an easy ride for the rest of your journey.

Hi Ingrid...it's nice to see familiar "faces" here...Yes, I'm in the middle of week three....the "honeymoon" period I believe is about over. I have no choice but be determined...the alternative is well......bleak...LOL.

David....my Oncologist said I'd be getting Cisplatin every three weeks for 3 treatments.....then said, I'd be getting another three treatments of Cisplatin and "another chemo drug"...but did not elaborate on what that other drug may be. I'm guessing (from hearing other people's experiences with adjuvant chemo) that it will be 5FU. I will be talking to the Oncologist at sometime before this comes to pass...I haven't seen hide nor hair of him since our orginal conference, but do have regular appointments with his Nurse Practioner...

Mark....it's WONDERFUL to hear from a NPC survivor...just hearing you on here lightens my load....you have no idea!

p

P,

Be watchful of what they call "ringing in your ears" which really didn't sound like ringing to me, more like a really faint buzzing. Cis administered in this big bag approach (every 3 weeks) can cause permanent hearing loss. I know for fact. Perhaps discuss Carboplatin with your MO but regardless get him to discuss the warning signs of Cisplatin and what to do if you begin to experience any of them. I didn't notice any problems with Cis until after my second bag which was appx 15 rads into my Tx.

Welcome to OCF Neighbor!

I'm not too far away from you at all over in Idaho, in fact there was just a OCF event not too far away from you in Columbia Falls. Glad you found the forums, welcome to our little oasis on the net!


As a second to David, as I sit here typing this the ringing in my ears is loud and clear. I've experienced very real hearing loss from that drug and it can be very frustrating. Just keep an eye out for it. Mine started after my second dose as well I just wasn't informed it was an issue, or was on too many other drugs to notice until it was too late.

Keep the great attitude! All we can control through treatment is our attitude, hydration and nutrition and I believe that attitude is the most important, keep that and the rest comes easy.

Eric

I was going to ask if the hearing loss would be sudden or gradual...I've had ringing in my ears since January (a symptom of NPC)...so for me that wouldn't be an indicator that my hearing was taking a beating....I'm used to the buzzing, now.

There was an OCF event in Columbia Falls? That's only 15 miles away, and none of the folks I've met here (so far) with OC mentioned it, so am thinking they didn't know about it either. We are trying hard to get a support group together...so far we've only found 6 people total in our area, who have suffered H & N cancer.

I'm keeping a positive outlook...and I think my "daily attitude" is pretty good, considering I'm doing amifostine and rads everyday....just always glad to get home!!

p

Anyone's hearing affected by cisplatin should begin to notice a difference within a week of being given the first dose. Im one of the lucky ones who did not get affected by the cisplatin, but I only had 2 doses too.

Are you talking about Lisa's Voice? This was put on in honor of Lisa Petersen who sadly passed away last October. She was a member of OCF and also good friend of mine. I greatly miss my friend Lisa! Lisa talked with me many times and had always wanted to help spread awareness and attend a walk or event with other OC survivors. Her friend Jan hosted the event and set up OC screenings. There will be at least one (possibly 2) events for Lisa's Voice next year as well. I hope to be able to attend one of them. Here is the link for the Lisa's Voice event.

Lisa's Voice 2012 event

Yes, Christine, that must have been the event....Was Lisa from my area? I'm so sorry you lost your friend....the friendships we make during this particular crisis in our lives run deep...A girl I met on CSN, who only lives a few miles away from me...picked me up, dusted me off after diagnosis....and has been invaluable as a source of information and support...I don't know what I'd have done without her.

Hugs to you...

p

Lisa was from Kalispell. Is CSN how you found OCF? I know there is a chat I recently got added to over on facebook. Maybe we already know each other. Im Christine Brader.

**** For privacy reasons, this forum is anonymous. You do NOT have to say who you are.

Actually, I found out about OCF via the Facebook group...I've been at CSN since I first was Dx'd....the girl who started the Facebook group is from Whitefish, and the person who picked me up and dusted me off when I first found out I had cancer.

Do I know you from CSN, Christine? Are you in our area, too?

p