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The Beginning

Joanielo's picture
Joanielo
Posts: 43
Joined: Oct 2012

I recently found out that I have squamous cell cancer of the tonsil and in one lymph node on the left side. The tonsil has been removed. I met with my radiation Dr for the 1st time today. We plan to start the 7 week treatment plan plus 3 sessions of chemo beginning the end of October. I have been reading all of the posts on this discussion board and I really appreciate all of the information that all of you have provided. I wanted to introduce myself and my situation and I hope to stay in touch with all of you as I venture through this journey. I am trying to stay as positive and as brave a possible:)

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to a group that nobody ever really wants to belong to. We welcome you with open arms and all of our support. If you tell us what kind of chemo you are going to have we can help you to understand that path a little better. There are so many types of chemo and so many of us, someone can tell you just what you can expect. As for radiation, ask away if you have any questions, we can pretty much all share our stories and hopefully make it easier for you.
It's very normal to be scared, I know I was! Thankfully I found this site and felt much better after I did. Lucky for you, you found it before treatment begins, I was at the end when I found all these wonderful people.
Where do you live and where will you have treatment?
Billie

Joanielo's picture
Joanielo
Posts: 43
Joined: Oct 2012

Thank you for the warm welcome!! I have not yet been told which chemo will be used for my treatment. As soon as I find out, I will ask for input. I live in Sacramento California and will be treated at Kaiser.

Joanielo's picture
Joanielo
Posts: 43
Joined: Oct 2012

Thank you for the warm welcome!! I have not yet been told which chemo will be used for my treatment. As soon as I find out, I will ask for input. I live in Sacramento California and will be treated at Kaiser.

Joanielo's picture
Joanielo
Posts: 43
Joined: Oct 2012

Thank you for the warm welcome!! I have not yet been told which chemo will be used for my treatment. As soon as I find out, I will ask for input. I live in Sacramento California and will be treated at Kaiser.

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Hi Joanielo,

Welcome, I see you’ve met Billie (this evening’s greeter), she’s a real trooper. Just take a seat, kick off your shoes and try to relax your journey will be over before you know it. We are all here at your beckon call to answer question, offer advice and be a sounding board for what ever bugs you. If you are looking for the unvarnished truth about cancer surgery, radiation and chemotherapy, you’ve come to the right place. If you are looking for a hand or a shoulder to cry on, you come to the right place. So, once again, welcome, it is nice to meet you and things seem scarier then they really are. I made it through treatments and I am definitely not the bravest one the H&N warriors.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3597
Joined: Mar 2012

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's picture
Joanielo
Posts: 43
Joined: Oct 2012

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?

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

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's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

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.

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

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's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

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.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

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's picture
phrannie51
Posts: 3597
Joined: Mar 2012

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

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

My husband worked the entire time he was in treatment. He works at home though, if he'd had to go to an office it might have been a different story.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

you've come to the right place.
your dx is the same as mine, but they didn't yank my tonsils. there are lots of us SCC Tonsil warriors here.

re work, I'm retired. but I've a pretty good idea that my work would still be limited, three months after treatments. major reasons:

3. first month after tx: mucous and constant spitting. not to beat around the bush, but it was not socially acceptable. ;-)
2. dry, sore mouth. even now, my throat is constantly parched, and I can't be away from a water source. and I'd rather not talk, if I can get away with it.

1. fatigue. the big one. I lost a lot of weight and muscle mass, and don't have anywhere near the energy that I used to. I sleep a lot. a walk in the woods gasses me. until I get my weight and muscle back, energy and stamina will be an issue.

best wishes to you!

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I worked from home all through treatment..

I'm a computer guy, do nothing strenuous though, that would have zapped me.

I wasn't on a strict regime' either, not like 7 - 3:30 each day... I did my 40+ hours a week when I felt good and didn't have something medically going on.

I worked home eight months or so, returning to the office half anhalf for a month, then in office full time after that.

JG

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

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

Sam999
Posts: 305
Joined: Mar 2012

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

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

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.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I had very similar from the sound of both your Dx and your treatment plan...three years ago.

STGIII SCC HPV+ Right Tonsil and Lymphnode on the same side.

Nine weeks (three cycles) of Cisplatin, Taxotere and 5FU, then the seven weeks of concurrent weekly Carboplatin and daily Rads.

Linda - Osmotar on here had the same Tx plan and similar Dx I believe, as well as a few others.

Stay brave and posditive as you mention....

Many here have gone through the ringer and survived to have a great live after Tx, you will also.

You have found a great place with awesome people.

Best,
John

katenorwood
Posts: 1801
Joined: May 2012

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

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Like others say, "welcome to the group no one wants to be a member of." It's OK to be scared, confused, angry, ETC. We have all been there, and we lean on each other for what we need from this group.

I'm here for the 2nd time, and may be leaning on you for support.

God bless

Best

Mike

ditto1
Posts: 630
Joined: Mar 2012

sorry you have to go thru this, but we will all be here for you. I had BOT Stage IV 2 lymphnodes. Went thru 2 Cisplantin and 9 Erbitux as well as 33 RADS. I made it thru ok, some very bad days but most were doable. I elected to retire since I had that option. Not sure if previously mentioned but the SUPER THREAD is the 1st post on the H&N site, it has great information to cover almost any concerns you may have. You will be in our prayers.

Hard12Find
Posts: 197
Joined: Sep 2012

I had actually written you a nice reply earlier but lost it due to poor Internet. I wanted to let you know, I have nearly the same condition, except nodes on both sides of the neck. I am nearing my second week of treatment, with no unanticipated or overly severe side effects. I have been struggling with food and water not tasting right, and that has been hard for me to adjust to. I have begun I supplementing through my peg but still dropping weight. My first round of chemo I asked for erbittex, and had a pretty severe headache for most of the next day but no naseau. On the in instance of my radiation oncologist my second round was cisplatin, and even with all the anti naseau meds, I have felt poorly, tired and mildly nauseated.
You will find everyone here to be very supportive and helpful. Eat while you can, rest when you can, take help when it is offered. Stay strong, mentally, physically, and spiritually. Remember this is bigger than any one person can handle alone......
I am only a couple weeks ahead of you on this journey, and look forward to our NED posts in a few weeks.
Jim

osmotar's picture
osmotar
Posts: 950
Joined: Jul 2011

My diagnosis was the same as yours but on the right side..tonsil removed last June. Started chemo aug 8th; cisplatin, taxatore, 5fu, 1 treatment every 21 days. Started rads Nov 1, 7 1/2 weeks, plus for every week of rads 1 treatment of carboplatin...I was one of the fortunate ones, didn't have a lot if any of the serious side effects some folks here had...stay positive, have a good support system, be proactive, ask questions . I'm 10 months out of treatment, working full time, some minor dry mouth issues, eating well...it's doable, one day at a time, and before you know it treatments will be over. You found a great site here, ask questions, there will always be someone here that can answer you.

Good luck , blessings.

Linda

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

We run the gamut, here. Some are out of work for over a year. Some work throughout treatment.

Hoping you're one of the folks who can work the entire time.

hwt's picture
hwt
Posts: 1819
Joined: Jun 2012

Once I started radiation/chemo I did not work until 6 weeks after my last tx. Hope your journey is uneventful.

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