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What now

doitforoj's picture
Posts: 64
Joined: Sep 2009

hello all,

well had an out patient surgery today. They check out my throat and bioposed the 4 cm growthh on the base of my tongue. They also put in a feeding tube. Last week they did a pet scan and the cancer is only in my base of tongue and 4 lymph nodes on the right side of my neck and 1 on my left. No cancer anywhere else. They are calling this stage 4. I meet with the Dr. Next week and go over my treatment. He has already told me that I will have Chemo for 6 weeks. Either 1 time each week or 1 time (heavy dosage) once every 2 weeks (3 times) at the same time I will start radiation. 33 session 5 times a week. I meet with the doctors who will do the radiation and chemo on the 29th. So I expect treatment to start some time on the first. I know many things to expect. The burning. Hard to eat. teeth hurting. Miracle mouth was. Creams for the skin. I guess...kinda want to know what to expect day one of treatment. The small things. Guess with a tube sticking out of me now....kinda makes it even more real.

Hondo's picture
Posts: 6643
Joined: Apr 2009

You will not be going through it by yourself we will all be here praying

God bless

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

One thing you have to do is stay relaxed and calm. I know this is a very scary time for you as you don't know what to expect. We all tend to build things up in our minds because we fear the unknown.

I don't know what type of chemo you are receiving but I will tell you about my first few days of treatment. I received cisplatin for 2 days every three weeks with radiation (35 sessions) immediately after the chemo. I was a nervous wreck on my first day but the nurses at the Cancer Center were very understanding and went out of their way to explain everything to me and answered all my questions. DO NOT hesitate to ask the nurses any questions you have. Every time they added something to my IV I had them explain what it was and what it was for. My chemo treatments lasted about 6 hours and I actually dozed through part of my first treatment, I was embarrased at first but found that many of the other patients were doing the same thing. If you are like me you will be so nervous the night before your first treatment that you will not sleep well, so if you have any Ativan you may want to take one before you go to bed so you can get some sleep.

Other than being tired after my treatments and an occasional bout of nausea I didn't feel bad at all. They put steroids in my IV which makes a lot of people "wired" and full of energy but unfortunately that was not the case with me. I was tired and just wanted to go home and sleep :-) Please remember to do what your body tells you to do - if your tired- sleep, if your hungry- eat, but most importantly, remember to drink plenty of water.

I'm not sure if I helped you or not but please stay optimistic and before long you will be counting down your last few days of treatments.

Wishing you the best as you start your journey.

My best to you and your family, you have adorable twins and I'm sure they will help keep you grounded and realize you need to fight this battle for them.


ratface's picture
Posts: 1319
Joined: Aug 2009

I'll try and help you with the little stuff. First the nurses are in control of everything and really wonderful, let them lead. Ask for help, for instance they have free samples of almost anything, creams, mouth washes, and food supplements. If you need depression meds get them now, mine takes the edge off and lets me sleep. Sleep is essential. Keep eating the stuff you love, pizza, steak, lobster??? They will all taste like crap pretty soon. For heart burn get generic prilosec OTC, and take one a day. Drink water constantly, especially with cisplatin which is hard on the kidneys. Find several good books and carry them with you. Ask for copies of everything, petscans, Mri's and especially blood work. Keep a binder with all your results, all doctors, dates of every procedure, and all medications. Follow your bloodwork. Know your baseline numbers now and compare to your regular tests. Low whites and you can easily get sick. Low reds and you're anemic with zero energy. Try and stay away from sick people and people period. Avoid door knobs and wash your hands constantly. You don't want to be the guy who beat cancer only to be killed by the common cold. Schedule appts with doctprs on the same days, do the Rad and chemo docs together. Careful driving if you go alone, this teatment can make you very tired and your concentration goes to hell and then there are the meds. Don't settle for pain, ask for meds if needed. Don't take them if you don't need them. The constipation is worst than the pain. Get a Sunday thru Sat pill box and use it. use cloth tape on the the feeding tube. Keep it clean daily. Use an ace bandage wrapped around your torso for a secure fit. Brush your teeth and rinse your mouth after eating anything. Use a salt and bakking soda rinse or a 7 to 15 percent providone iodine rinse. Gargle with the stuff. Use your flouride trays. Get a humidifier for your bedroom and put some eculiptus in the water for sleeping, keeps the mouth from drying out. Make sure you have some loose fitting shirts to wear that will not rub on your neck burns. Apply cream multiple times a day to the burns. You can use pure aloe vera, neosporin, aquaphor, xclzir, radx, or ask for script cream if they get real bad. Get a place to keep all your stuff where those young ones can't get to it. You will need gauze, antizeptic, syringes, sterile cups, cleaning saline and wipes and cotton swabs and balls. Allow three times the time for anything you used to do. A simple shower will take an hour by the time you change bandages on the feding tube and take care of the neck burns. Ask for help and be selfish when you can be.Best of luck to you and keep checking in. Hug those children, appreciate your wife and don't kick the dog!

pk's picture
Posts: 192
Joined: Aug 2009

My husband is 2 weeks He had a chemo infusion every week of Erbitux and 35 radiation treatments.
The first two weeks, were sort of normal except for fatigue. He had a feeding tube placed before his treatment started and you will be using it after the first couple of weeks. His type of chemo caused a rash which is normal and after the first two weeks he started using his feeding tube as it was rather painful to try to eat. Upon the start of using the feeding tube he became nauseous which is also normal. His oncologist prescribed some anti nausea meds. which helped and soon he was tolerating the tube feedings just fine.

The skin around his neck became very burned but never blistered. He became much more fatigued and took long naps everyday.

The mucous situation is his mouth bothered him alot-especially at night. Again, his onco. prescribed a sleeping aid that helped him sleep some better at night. Now 2 weeks later the mucous situation is getting quite a bit better.

Pain meds. that were and still are effective were a time release Oxcontin and Vicadin.

Now 2 weeks past radiation, he is still using his feeding tube and is trying to eat something in very small amounts twice a day: eggs, cottagecheese, noodles, peaches in light syrup. He has been drinking water throughout the entire regime. He does not have trouble swallowing but food causes pain in the back of his throat. He is still very fatigued but not as much as thru treatment. He is doing more each day.

This healing process will take a long time, but we are definitely headed in the right direction. A follow up PET scan will be done Jan. 5th. The swollen lymph node is already gone - that disappeared with in two weeks of radiation.

As you progress, keep us all informed. The people on this sight are amazingingly strong, supportive and knowledgeable.

My husband was nervous and leery at first, but decided to just embrace the experience and go forward.

Skiffin16's picture
Posts: 8286
Joined: Sep 2009

You are right concerning the Oxicontin and Vicadin..Percocet..it helped me sleep. Allowing me to get at least a good four hours of sleep. I'm a few months out of the readiation and treatment and still wake every few hours, mainly from dry mouth and to go from all of the water that I drink.....

I just started feeling really good and nearly my old self this last week....it does take time and evryone is different.

Hang in there it wiull only get better....not in days, more like every few weeks he'll notice improvement in some area....hair growth, taste, energy...desire to do more things....

Stay Positive and keep getting strong.....

thegirlfriend's picture
Posts: 147
Joined: Sep 2009

How on earth did the mucous situation get better? My guy has bought a humidifier, takes his morphine to go to sleep, does his gargling and hygiene before bed, everything he is supposed to,but the dry mucous mouth wakes him up and he cant get back to sleep well at all. He could so use a good nights sleep.

Remember those machines that one can use especially kids, when they had bad congestion in the head and chest, and the those machines I think were called nebulizers? You think those could be used to breathe in saltwater or the moisture with a mask would be good for the dryness in the nose, throat, mouth, etc?

The girlfriend

RedE2NJoy's picture
Posts: 20
Joined: Aug 2009

Not everything works for everyone, but after treatment I had to learn to sleep with my mouth closed and breath through my nose. I also learned that to prevent a 'congestive like state', it was necessary for me to sleep on the same side all the time. My cancer was a sinus cancer but it seems many of the head and neck cancers and their treatments, result in similiar salivary gland, tear duct and sinus issues.

My salavary glands are working a little better, but I still breath through my nose when I sleep, have a humidifier running at the head of my bed, and do frequent salt water and soda rinses and take salagen three times a day.

It usually does get better, try to be patient and just keep asking questions of medical professionals and the patients and caregivers on this site. LOTS of good support and information here.

Accept our prayers and best thoughts.

Skiffin16's picture
Posts: 8286
Joined: Sep 2009

I just finished my treatments a few months ago (Jun18th)....

I was really aprehensive at first....I envisioned frail, pale and sickly people at the cancer center. It wasn't really that way at all. Most everyone was very upbeat and full of sharing information (both the staff and especially the patients). My chemo ceneter was awesome, reclining chairs, each having a small TV and headphones. They offered free drinks, people would always take care of you, bring you warm blankets if needed.....

I had been diagnosed with stage III SCC cancer (HPV derived) in my right tonsil, and a small tumor near my right ear. The tonsil was removed and the treatment was scheduled.

Similar to yours, Taxotere, Cisplaten and 5FU three sessions each three weeks long. The first Monday was the chemo (5FU from a pump for four days). Then hydration and Neulasta for bone marrow the 2nd Monday, all else was rest.

After those sessions I had seven weeks with Carboplaten on Mondays, Amofostine injections in my stomach everyday followed with radiation M-F.....

For me the radiation was the worst part of it all, especially the last two weeks and the following three weeks after. That was the hardest part cocnerning throat pain when swallowing. I dodn't have a PEG and didn't really need one. Though the period of radiation where I had the most problems I mainly survived off of water and Ensure Plus...needing pain solution just to drink those....

My neck took a good hit of pealing skin, but nothing much worse than a severe sunburn....nothing not tolerable. If it would itch or ache, warm showers always seemed to sooth it for me....

If you have any questions or he has any discomforts, make sure to communicate with your doctors. My chemo doctor was awesome, she had a drug or solution for anything that I encountered....I had hiccups for awhile, she had a drug, I had heatburn and acid reflux, she had a drug....LOL....she took very good care of me.

I never physically got sick one time....there were plenty where I was neasuous though. I was very achy after the first Neulasta shot also, but not the next two.....

One thing very important is to stay hydrated, I didn't drink enough the second round of chemo and became very tired and sick feeling...all I wanted to do was sleep. The more I slept the worse I felt, the more I slept....they gave me a few bags of hydration fluids and it was like a light flipped. I immediately felt better...never did that again.

We are here for you and you can ask anything you want when you need the support.

God Bless and surround yourself with positive thinking people....


carolinagirl67's picture
Posts: 153
Joined: Jul 2009

Hey there,

My husband just finished the same treatment and he was also stage IV but to the tonsil not the tonge. When we were almost done with treatment, I asked him if it was worse than he thought it would be or not as bad as he imagined and he said it was not as bad as he thought it would be although it was not a walk in the park. I think the hardest part was just the boredom. Having to sit around and he HATED the tube. He said the things that were the worse to him was the feeding tube and having eight teeth pulled. We used pure aloe on the neck and that kept it from getting burnt. It will be rough but you will be okay and you will get better. Good news that it has not spread. Keep the faith!

Judy.2's picture
Posts: 21
Joined: Jul 2009

I'm thinking the next thing on your list will be the making of your mask, and mouthpiece. Very spooky and sureal...but not at all painful. Kind of a test run for when the radiation treatments really begin. That's when I got my first view of the room I would be visiting daily. I also met the crew that would greet me daily, and would almost seem like family.
Keep us posted!

CajunEagle's picture
Posts: 398
Joined: Oct 2009

One of the biggest pain in the rear of all this, is folks calling...texting...e-mailing...etc. wanting to know "how your doing", "what's coming up next", blah...blah...blah. It can really get to ya after awhile. My wife (the Saint she is) informed anyone who wanted to know to give her an e-mail address. She would send out once a week all the information about my condition, what appointments were up-coming, what all the medical staff would say about my progress or lack of, etc.,etc.. This way everybody got the same info, and we didn't have to talk about the same stuff over and over.

Also be sure right before they hook you up for each chemo session, to take a pill called Emenda......I think that was it. It helped through the next couple of days post session. I've been through....pet-scan is clear.....for 4 months. Feeling better every single day.


Hondo's picture
Posts: 6643
Joined: Apr 2009

I know what you mean about people always calling trying to find our how you are doing, it really gets to be a pain sometimes, but look at it on the bright side, they call because they care. All I tell them, just keep me in your prayers God will do the rest.

Glad to here the PET is clean, your strength will continue to get better as time goes on. You might have some side affect that come up over time, just let your doctor’s know about them. Unless you have the same problem I had the doctors in Lafayette have never treated anyone with NPC before. They are just learning from what I tell them, thank God for CSN, it was here that I meet others with the same cancer I had and learned about side affects.

God Bless

Skiffin16's picture
Posts: 8286
Joined: Sep 2009

Yes the drug is Emend, I took them also, one the day of Chemo, and one each day for the next two days after...they are pricey around $400 for three and I did those three times during the initial nine weeks of chemo....but I never got sick once.

Also, my wife did as you suggested, we had a very big group list that we would email out about once a week, or whenever something news worthy went on. I would send updates on occasion when I felt like it and my wife was busy with work, me and our home....

It was actually kind of nice having everyone send individual replies and support.....it gets old fast when everyone asks you the same things all of the time. I remember when my wife was pregnant. It seemed like if we saw the same people everyday, they'd always ask when are you due....LOL. It hasn't changed since you asked yesterday.....(I would think).

The main thing that I always stressed was that I didn't want to hear anything about anyone else that wasn't positive....it seems someone always has a story of someone woth cancer...I'd tell them right up front, if it doesn't have a happy ending, I don't want oto hear it....only positive things and support.

Good Luck and God Bless,

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