Finally

Well I'm finally going to have treatment. I got fitted for my mask last Friday
and I have a start date of March 1st for radiation. Got to visit with the chemo
Dr on the 27th to see if I need it, then back to the dentist for my new crowns on
The 28th and then I go get my 7 weeks of rads two days later. I feel like no Dr has
Been really concerned with me....long story short,
Nov 18. Ent told me I had cancer.
Dec 7, biopsy confirmed scc (no one said if it was hpvor not).
Jan 10, opted for rads instead of surgury.
Jan 15, wisdom, molars and crowns (all dental work I needed to be done)
Feb 28, new crowns and thats it with dental.
Mar 1, start rads.
I can see the tumor (mass) on my left tonsil and it looks bigger than it was
Three months ago because now its come across and is now pushing my uvala to
One side. So what I am trying to say is the doctors have just left it up to me to
Go through the motions until I start the treatment...

Sorry to rabble on and on.
God bless all on the board
Tonsil Dad,
Dan.

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Dan
    You will not be alone my friend, I and many others will be there with you and keeping you in our prayers.

    God Bless
    Hondo
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    Good to get Started
    Dan,

    Hope everything goes really well for you during and after treatment. Keep us posted on your progress.

    A couple of things off the top of my head:

    Eat all your favorite foods beginning right now cause chances are you will begin to have a hard time eating soon enough and what you are able to eat will taste like crap!

    Don't try to be a hero, by this I mean if you are having a lot of pain, discomfort or any other problems bring them to your doctor's attention immediately. Treatment is tough enough by itself, don't make it any harder than it needs to be.

    Try to get out each and every day for a 15-20 minute walk. Research has shown that cancer patients may respond to and tolerate treatment better if they engage in moderate exercise daily. I know just getting out of the house and taking a stroll in the woods would do wonders for me mentally also.

    Stay strong and best of luck to you. Cheers.

    Jimbo
  • nwasen
    nwasen Member Posts: 235 Member
    Jimbo55 said:

    Good to get Started
    Dan,

    Hope everything goes really well for you during and after treatment. Keep us posted on your progress.

    A couple of things off the top of my head:

    Eat all your favorite foods beginning right now cause chances are you will begin to have a hard time eating soon enough and what you are able to eat will taste like crap!

    Don't try to be a hero, by this I mean if you are having a lot of pain, discomfort or any other problems bring them to your doctor's attention immediately. Treatment is tough enough by itself, don't make it any harder than it needs to be.

    Try to get out each and every day for a 15-20 minute walk. Research has shown that cancer patients may respond to and tolerate treatment better if they engage in moderate exercise daily. I know just getting out of the house and taking a stroll in the woods would do wonders for me mentally also.

    Stay strong and best of luck to you. Cheers.

    Jimbo

    Getting started
    Jimbo has it all right. don't be a hero but also don't be afraid to ask questions and demand answers. Have someone with you or take notes.
    If you are in pain, say so and have them give you something.
    It is a scary time but once you get started, take it a day at a time. Take time to rest and when you feel your body telling you to lie down, do so.
    My docs said they would send me to hell and then bring me back. They did.
    I was stage 4 tongue and today, 14 months out of treatment I am almost 100 per cent me again.
    I had turned down the surgery and went thru 35 radiations and 7 chemos.
    It ain't easy, but it can be done.
    Reach out anytime and we will be here for you!
    Nancy
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    It is amazing
    and disconcerting how long it takes to get from point A to point B. Your timeline is scarey, yet finally you are in the right ballpark, about to hit a home run. Reading between the lines, there was the usual snafu of hoping against hope Dr A would communicagte to Dentist B, who in turn wouldn't leave on vacation, so that....

    Been there, done that. There are just a lot of moving parts to get some of these things off the ground. Now you're there though. A little beat up, but ready to get the thing truly going.

    It's going to be ok. Sometimes the actual treatment is easier than just getting ready to do the treatment.

    Now its your turn to put the hurt on the cancer.

    Best to you.

    pat
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Some key things to keep in mind
    For most HN cancer patients, the survival rate (based on 5 years, no recurrence) is very good--usually around 70-80%. The most crucial concern is how your body will handle the rads and the chemo. So, know your real enemies here, and do what your docs say to get through the treatments, not "just" the cancer. All of the advice you got here is excellent--don't be a hero about the pain, try to consume as many calories as you can, exercise early and often, have good support in place, and let your body heal at its own pace.
  • tommyodavey
    tommyodavey Member Posts: 728 Member

    It is amazing
    and disconcerting how long it takes to get from point A to point B. Your timeline is scarey, yet finally you are in the right ballpark, about to hit a home run. Reading between the lines, there was the usual snafu of hoping against hope Dr A would communicagte to Dentist B, who in turn wouldn't leave on vacation, so that....

    Been there, done that. There are just a lot of moving parts to get some of these things off the ground. Now you're there though. A little beat up, but ready to get the thing truly going.

    It's going to be ok. Sometimes the actual treatment is easier than just getting ready to do the treatment.

    Now its your turn to put the hurt on the cancer.

    Best to you.

    pat

    RT
    Hope all goes well with your radiation therapy and it eliminates that tumor for good.

    I'm in the same boat as you concerning the RT. I was fitted for my mask almost two weeks ago and will start mine this coming Wednesday. Mine is only 25 sessions so I should be done by the end of March.

    Doctors are quite strange sometimes. Mine seem to hand me off to others to deal with the minor problems I've had. It was actually my regular GP who has been the most caring and gave me a script for some PT. But I didn't have any problem with communication of my illness. My surgeon and ENT scared me pretty good thinking it was worse than it is.

    Wish you the best.

    Tommy
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Tonsil Dad - Dan the Man...
    Glad you are finally getting underway.

    I had a timeline similar to you in someways. Dx on January 2, 2009.

    STGIII SCC Tonsils and a lymphnode HPV+.

    Tonsils were removed January 5th, confimed at that time STGIII SCC. The tissue was sent out and a few weeks later confirmed HPV+.

    A small setback with diverticulitis caused a delay to Tx. But while going through that I had the port put in, mask fitted, etc..

    I think like you I started sometime in March and finshed up mid June.

    My Tx was nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU. Then seven weeks concurrent weekly Carboplatin and 35 daily injections of Amifostine and rads.

    Personally I don't pay any attention to percentages and survival rate time frames. We are all different going in, genetics, age, general health...and we all know that statistics can pretty much say anything you want depending on the variables and setup.

    As long as I'm above ground and moving, I'm 100% surviving.

    Same with after effects or residual from treatment. Some have more than others, like everything else, we are all different.

    For now at nearly three years post treatment, I have nearly 100% of both taste an saliva. I'm not on any meds, all blood work is within normal ranges. Even at this time my TSH levels (thyroid function indicator) has came back into normal range. I'm 58 (in one week).

    Do I have any long lasting effects from treatment, of course I do..., various aches and pains mainly. More than likely jaw bone damage, though not a factor as of yet. Always the possibility of future secondary cancers from treatment.

    But in reality, who knows what's instore for any humans whether you went through this or not. I know that if I didn't go through the treatment my odds of being here presently are pronbably pretty low to none.

    So for me personally, I'm aware that there is always potential collateral damage. Is it any more than I would have potential that something other than cancer would have affected me in future years...doubtful.

    So I'm not into any gloom and doom concerning what I'm left with as a result of treatment....

    To me what I'm left with is prolonged living....and I'm good with that.

    Best,
    John
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    Thank you
    Thank you all so very much for all your encouraging messages , you are all so
    Thoughtful, helpful, kind hearted and just decent people each and everyone of you.
    Once I start I will let you know my progress and all the good things that happen on the
    Road to recovery.

    Once again THANK YOU.
    God bless you all.

    Dan.