The Beginning

Hi thiere .....
As Matt and Billie said....you have come to the right place for information and support. I got lucky like you, and found this little haven before I started treatment and haven't left for even a day, since.

We all start out scared, but it appears to me in my 6 months here, that our inner warriers come out when the nit hits the grit. You can't ask any question that someone can't help you with....nothing here is embarrassing, or off subject. You will find many of us who have been thru treatment, and some who are will be going thru it with you....I found it very comforting to stick close to those here...I hope you do also.

p

Joanielo said:

Working
Did any of you continue to work at the beginning of your treatments? How long after the treatments ended before you felt like returning to work?

Hi Joanielo!
I did not work during treatment. I took a 12-week medical FMLA medical leave and then another 12 weeks after that. I had base of tongue SCC with lymph node involvement on both sides so I was stage 4. I had eight weeks of concurrent rads and chemo and they gave me cisplatin. I was able to go back to work full time after the 24 weeks.

Deb (Waves hello from near Columbia State Historic Park 2 hours south of Sacramento.)

Tonsil Dad said:

Hi
Hi Joanielo and welcome to our piece of the internet. Sorry
your here but you will be sure glad you found it.
I was dx with stage II tonsil cancer (left) on November 18 , 2011
and didn't start treatment until March 1st 2012. I had 33 rad
treatments only (no peg) and went through it pretty much ok.
I work for myself so work was pretty much what I wanted to
do when I felt like it. I am now almost 7 months out and doing
pretty good, my taste and saliva are still way off but I'm here typing
on a survivors network with all the other survivors. I Wish you the
best,
Have faith and keep positive,

God bles
Tonsil dad,

Dan.

Hi ...
I was stage III base of tongue w one lymph node left side.

I had radiation and Erbitux for treatment and I am now 8 months out from last rad and NED

I did have a PEG tube (feeding tube) before treatments ever began..might want to ask about that. I did not work during treatments...but you might want to ask "could you work during treatments" my answer would be no....side affects to rough...

I lost 70lbs in treatment (not the norm) but you need to eat and gain all the weight you can ..protein will be your best friend in tx ....you will burn 3,000 - 5,000 cals a day due to radiation (is what I was told)..your body will need the protein to heal.

You did not say if you were HPV+ ..I would ask that question.

Best,

Tim

ToBeGolden said:

I was retired before treatment. You will have the worse sunburn imaginable. When I went with my wife to one of her doctor visits, many members of that staff asked if a doctor had seen my sunburn. Of course, they understood when I told them it was radiation therapy. I'm saying this because I think you will not want your coworkers see you when you are at your worst (of course that does not include close friends who are also coworkers). And you won't be able to cover up the "burns"; too painful to have anything touch the skin. In my experience anyway. Rick.

No work
I did not work during treatments. Mainly because I had surgery first and it left me on voice rest and I'm a Pre school teacher.....no voice and 20 4 year olds don't go well together :-)
And once the treatment kicked in I didn't have a lot of energy and towards the end of rads I was sick and had some pain so I wouldn't have been able to work on pain meds. There are people who don't have a lot of side effects and can probably work. In my case I needed to avoid all the kids anyway because of viruses and whatnot. I guess it will all depend on what kind of work you do and what kind and how many side effects you end up with.
I'm in California too by the way....southern CA
Billie

phrannie51 said:

I thought I'd be working in the beginning....
but my lung got punctured putting the port in, so ended up a week in the hospital, and when I got out, rads and chemo started right away....no way in hell could I do rads everyday and go to work too. I took a 6 month short term diasbility from work. I'm just about to go back to work now (in a week), even tho I'm only 6 weeks out of treatment. We'll see how that goes. I'm still pretty tired, about 75% of my norm.

If it turns out that working nights is just too much for me I"ll retire...I'm more than a little anxious about being able to pull this off.

p

Joan
Like Phrannie and the others have said, anxiety is very much part of the pre-treatment experience, and it hits us all. That's primarily because of all the unknowns we know are coming our way, and that the adversary we're fighting is real bad. That said, there is one little known that you can hold onto and keep with you constantly: you ARE gonna survive this thing (so get used to it!).

I'm 3 1/2-years, and there's those among us who are over 15, and when they went thru the tx the C med community wasn't as advanced as they are now. The fact this is late 2012 is a better thing, Joan. It's not gonna be a walk in the park, but it's not exactly katie-bar-the-door, either. Lot depends on the specifics of your C and treatment. Always remember: very much part of your Dr's job in helping you get rid of the C is for you to be able to handle the tx with the side-effects staying acceptable to you- SO, keep your Drs in the loop with how you are physically doing, so they will know when you need help with the physical, if you do. Also, some have needed mental help with it all, and that's entirely acceptable, also.

And, yes, if your Drs think your ability to take-in nutrition might get to be a problem, then a PEG is a good solution. Got mine before tx started, and used exclusively the last 7 weeks of tx, and beyond a couple weeks. Some have made it thru without a PEG, but a number have also suffered more than maybe necessary because they didn't have the easy way to bypass the mouth and throat to get nutrition into the stomach. Nutrition is very important- gives your body the ammo it needs to fight the best fight possible. Simple as that. The standard is to go with whatever your Drs advise as best, but to make sure your Drs have it on the table as a possible you will need, and realize the best time to get a PEG installed is before tx begins.

We're all different, Joan, just as the specifics of our Cs are different. Some make it thru without many complications, and a number have been able to continue working thru it all. If you are getting concurrent chemo and rads, though, it might be wise to plan on taking some time off (even if for no other reason than the chemo compromises the immune system, and you don't need to pick up a virus from somebody else). I took 3-months off work as a factory Inspector, and returned one month after my last rad.

You got many years ahead of you, Joan. True, this is a bit of rough road looking you in the face, but that's all it is. You will survive-

Believe

kcass

fisrpotpe said:

greetings
welcome to the home of homes

go get the beast and give a foot kicking for each of us.

prayers being sent for you and your caregivers

john

Hi,
Sorry you had to join
Hi,

Sorry you had to join us, but if you had too, this is one of the best places, folks on this site helped me thruout my treatment.

I also thought i will continue to work at first but the emotional and physical toll on the body was overpowering and i took 4 month leave. If you could, i would suggest taking leave. First couple of weeks are pretty okay. At the minimum, i would say take 4 to 8 weeks starting 5 th weeks of rads.

Sam

Sam999 said:

Hi,
Sorry you had to join
Hi,

Sorry you had to join us, but if you had too, this is one of the best places, folks on this site helped me thruout my treatment.

I also thought i will continue to work at first but the emotional and physical toll on the body was overpowering and i took 4 month leave. If you could, i would suggest taking leave. First couple of weeks are pretty okay. At the minimum, i would say take 4 to 8 weeks starting 5 th weeks of rads.

Sam

Welcome you have found a great community
I am sorry you have been diagnosed with Cancer. I know how stressful it is to get the diagnosis and all the craziness that starts to happen afterward. My husband was diagnosed July 26 with Stage IV BOT cancer. He went in to have a bronchial cleft cyst removed, which turned out to be squamous cell carcinoma the size of a baseball. September 19 he had the davinci robotic system remove part of the right side base of his tongue and have a feeding tube placed. He has been losing a lot of weight already and he starts chemo/radiation the end of October as well. It has been my experience since coming to this site that everyone is so helpful and full of wisdom. It is a great resource/support system for me. Keep coming back. I will be praying for you.

Hello and welcome !
Joanielo,
You've come to an excellant site ! I have found the insightfulness of this group as a whole amazing. I have a different dx, but still considered H/N. (ACC) I am so glad to hear the positive note in your post ! We are here for you, and will be with you through out your journey. All my best to you ! Katie