Just Diagnosed

thats quite quit i was stage
thats quite quit i was stage 4 tonsil into base of tongue with a lymphnode the size of a lemon.
I was misdiagnosed for 3 months told it was tuberculousus .
Then i waited almost 6 weeks to get treatment started.
Mentaly i think that was the hardest. Reading all the bad stuff side effects etc. made me crazy
It wasnt half as bad as i thought .
Because the lymphnode was so large. After waiting 6 weeks then
I got 6 weeks induction chemo Taxol Carboplatin and Erbitux.
Then i got 7 weeks of radiation doubles on fridays plus chemo Cisplatin daily on weeks 1 ,4, and 7
Then i got a radical neck dissection.
Radiation ended about a year ago and the operation was 10 months ago.
I am doing great now taste buds are still off.
Im 53.
Get a port for your injections put in when you get your peg tube.
Eat as much as you can right now pack it on its not quite eggnog season too bad that stuff sure helped me put and keep some wieght on
For me it started getting crappy the end of week 2 of radiation and it was hell till about 6 weeks after radiation.
Then it started getting noticibily better everyday.
I cant believe how great i feel now of course quitting smoking probibly helped alot.
And my sweet taste buds havent come back thats a blessing so i only put nutrious stuff in me.
The people here are great youll get all the tips and tricks.
Eat eat and keep eating thats your job now.
That and get your teeth all checked out and work done now.
I think iwas lucky i have a 3 year old son so when it was bad he kept me moving, if my wife wanted me to move id tell her where to go
if the house was on fire i dont think i would have gottin up but if your 2 year old wants or needs you, you move no matter how bad you feel.
And the more you move and the more more fluid and nutrition you get in you the better you feel its that simple.


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doitforoj said:

thanks
Thank you for your reply and suggestions. Congrats on completion and I hope your next PET scan is clean.

sorry your here, but welcome
Hi, my name is Rick. I was diagnosed in July. I am currently in my last week of Radiation treatments. The three week wait isn't unusual. Relax a little. The important thing is that you are getting a treatment plan established. The Pet scan will show where the cancer is and it's also used to set up the radiation fields. I'm confused how they Know the size and location if you have not had the test yet. Did you have an MRI first.

I know you are anxioux to get started and this is a scary thing but now is not the time to be in a hurry. Have you considered a second opinion? You should be at a major cancer treatment center. If not, at least consider a consultation with one now while you are waiting. You need to see a cancer dentist right now! Or at least your own dentist. Get any dental work or extractions immediately done. Tell your dentist you nned an appt tod

ay.

You should be eating everything in sight right now. Put on as many calories as you can, dosen't matter what it is, milk shakes, cookies, also go eat your favorite foods whatever they are, Steak and Lobster? You won't be able to for some time and everything will eventually tastle like crap.

Make sure you call your insurance company prior to any procedures and ask if you need pre-certification? Will avoid billing headaches down the line.


You need to get organized, really organized. Buy a calendar and binder. Write everything down. Take someone to doctors appts and have them take notes. later you can ask them what they heard the doctor say? You will be in a Wirlwind the next few months. Acceapt help that is offered by friends and family.

Also with those young ones it will be tough. I'm concerned about medications laying about. You will need a dedicated locking drawer type thingy to keep meds, gauze, feeding syringes, ointments, sleep aids, constipation aids, chemicals and solutions out of reach of children and organized for you.

Main thing here, major cancer treatment center and a second opinoin. I didn't do these and wish I had. Once you treatment starts you are pretty much committed. Best of luck, its all doable and unpleasant.

OK with the 3 weeks
Hello doitforoj,

Do not get too upset about the 3 week wait.It takes time to find where everything is and for all the doctors involved to make your plan of treatment. I was diagnosed May 14,08 with the same thing. Main tumor on the base of my tongue and into lymph nodes on the left side of my neck. I didn't have my 1st chemo treatment until June 30th. My plan went like this.. I had 4 rounds of aggressive chemo(Taxotere,Cisplatin,5fu) They had too cancel the last round because of my blood counts and other things. Then on Sept.9,08 I began 7 weeks of Radiation.5 days a week for a total of 35 along with chemo of Carboplatin 1 day a week. Very very smart to have the feeding tube put in before starting. I had my port put in before starting but decided to wait on the feeding tube cause i am tuff. haha NO WAY I ended up in the hospital for 4 days then had the tube put in. It is a life saver. YOU WILL NEED IT. Anyways I finished my treatment on Oct. 27,08 I am still using the feeding tube for nutrition. I have just begun to eat soft foods like mashed potatoes with gravy, puddings, ice cream,coco wheats because of my salivary glands being so damaged by the radiation, my throat was too burnt and dry for food to slide down. I am able to drink everything by mouth now. It is a very very long road to recovery and every person is different but you will get thru it. Many times I sure wondered but I did. Just had my second Pet Scan and am still cancer free. When my ENT told me what I had, he said you are young and healthy, you'll get thru this but you will go thru HELL. Boy was he right. If there is anything I can help you with don't hesitate to ask. Stay Strong and Positive

doitforoj
I don't think it took 3 weeks for my husband to get started but it was probably a week and a half. He had to have a pet scan, see a dentist for mouthguards(for radiation), have his feeding tube place and meet both the chemo and radiation onocos. His oncologists were all about the sooner the better. Today he finished his last Erbitux injection and has 3 more radiation treatments to go. This sight is great for support and getting questions answered from those who are in the throws of this cancer with you. PK