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new here and scared

kevinr51's picture
kevinr51
Posts: 14
Joined: Nov 2013

start my radiation and chemo treatments on nov. 13, stage 4 scc right tonsil and 2 nodes

have been reading on here for a couple of days looking for answers on what to expect

lot of helpful information and a lot of great people

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Welcome to the club Kevin....

If you've been reading on here at all, you'll see tons of great info... Also checkout the SuperThread, first pinned post on this forum, tons of great information and links.

Stay positive, very well hydrated, keep up on meds, especially before you start feeling sick and you get through this fine... It's rough but very doable.

You'll hear where we are all different..., that's very true.

I've seen big strong men buckle and struggle, and I've seen small ladies kick azz,  sail through relatively unscathed... You just don't know until you get there.

But one thing is for sure, there are many here willing to help you through it in any way that they can...

BTW, I was STGIII SCC Right Tonsil and a lymphnode, HPV+.... DX January 2009, four types of chemo and 35 daily rads... clean and clear since..., you can do it.

Hang on for the ride,

Best ~ John

TracyLynn72's picture
TracyLynn72
Posts: 744
Joined: May 2013

We have all been scared.  We're all here for each other.  Stay in touch with often and keep reading...you will find the best information there is HERE on the superthread.  Great group of people on this site.  Sorry you have to be here, but welcome to the H & N Family! 

phrannie51's picture
phrannie51
Posts: 3849
Joined: Mar 2012

to the club nobody wants to join.

Being scared in the beginning is the one absolute thing we all have/had in common.  Once treatments start and you get into the rythem fear will be replaced with resolve to get through treatment and on with your new life.  Like John (Skiffin) said, everybody gets through this differently....with varying degrees of problems.....but the common denominator is we still all came out the other side of this tunnel....you will also get through to the other side!!

As John said....stay hydrated (that means a couple of liters of water every day...just sipping away as the day goes on)....get in as much nutrition as you can everyday.....stay on top of the nausea meds and the pain meds......rest when your body says to.  Stick close to this board, so as problems arise, we can help you get through them....

p

MarineE5
Posts: 762
Joined: Dec 2005

You have received sound advice already. Ask as many questions as you feel you need to, someone here probably had the exact same situation and can make suggestions to you during your treatments. The road gets a bit bumpy, but as John and others mention, the mileage varies, the bumps may not be as bad for one verses another.

My Best to You and Everyone Here

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

welcome, kevin.  i don't think 1 person here can say they weren't scared!  who wouldn't b w/a cancer dx?  as u can see, we r many SURVIVORS!!  the road is rough but u can/will do it.  we will all be on the sidelines cheering u on and ready 2 answer any questions you come up with.  eat as much as u can while u r able and drink lots of ater.  those 2 things r very important.  when/if u become unable to eat by mouth, make urself swallow everyday.  you must use the swallow muscels to keep them working.  keep ur docs informed of whatever goes on with u during tx.  when ur body says its tired, rest!  be sure 2 let us know how u're do'n.  can't wait to hear u ring the "finished w/tx" bell.

God bless u.

dj

CivilMatt's picture
CivilMatt
Posts: 3085
Joined: May 2012

Kevin,

Welcome to the H&N forum, so sorry you qualify, but bundles of good information can be found here.

Being scared is normal as is why me  and how did this happen?  It just does, it picked on each of us.  To this day I did not feel sick, but I was!  After these next few months go by you will come out the other side without this burden.

As said above, we do not know how well your body will adapt or rebel against treatments, but we have some good ideas which help out.  Stay hydrated (drink lots of water), get plenty of nutrition, take your meds early, be prepared (check out the superthread must have list) and do not try to tough it out, give your body any help you can.

Now, try to enjoy this last week before the start by getting prepared, eating out (really, eat your favorites), trying to relax, knowing that you did all you can.  Don’t forget a music cd for rads.

As you start to go through the side effects we can fine tune treatments which help, but there  is  no need to (over) scare you.

Best of luck on a smooth ride.

By the way, you can click on our names and get a history on each of us.

Matt

lornal's picture
lornal
Posts: 278
Joined: Sep 2013

Welcome aboard :(.  Sorry you had to join, but its worth it.

Might want to make/keep appointments with your primary care or other specialists.  I skipped an allergist appointment, and didn't see my primary (changed right after treatment though).  I was so sick I didn't even know I was sick.  They helped put be back together again! 

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Kevin,

You will do fine, try to relax. There are many here that have gone through this and willing to help you along. There is no doubt that treatment is hard, but as John (Skiffin) states, it's doable.

You want to get prepared by keeping plenty of water by your side, and maybe even some Ensure or Boost when eating gets tough. This will help you keep up the vitamins and protein you will need. They may suggest a feeding tube. My loved one was offered one at the beginning of treatment and opted to go without it, but during treatment he ended up needing it....we wished we would have gotten it when they asked instead of during treatment. But, everyone is different and you may very well do fine without it. 

My loved one was dx Aug 2012 with BOT (Base of Tongue), Stage IV, 2 lymnodes involved, HPV 16+. He completed his tx end of Nov 2012. He did 7 weeks radiation and chemo. Now going strong one year later with NED! Whatever you do, don't get hung up on the stage. This cancer is usually detected in the later stages, but has a very good prognosis. Fight hard, you can do this. Surround yourself with positive, loving people and this forum and you will get through this with plenty of support. Be sure to keep us posted.

God Bless,

Cureitall  

jim and i's picture
jim and i
Posts: 1676
Joined: May 2011

So sorry you have to be here, but a great bunch of people. I pray your treatment side effects are minimal and you meet NED soon.

Debbie

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

Glad you found us but sorry you had the need. You would be abnormal if you didn't feel scared. Most of us found that some of that fear subsided once the tx started. Actually, getting the show on the road helps. You won't get every side effect and those that you do get will be in varying degrees. Try to "take it as it comes and deal with it". Hydration and nutrition are the keys to success. Prayers that your journey will be an easy one.

Candi in STL

Duggie88's picture
Duggie88
Posts: 565
Joined: Feb 2010

All good advise from many. I can't add much more other than welcome to our little neck of the woods. Hang in there and don't be afraid to ask the questions that will surface throughout your ordeal.

      Jeff

kevinr51's picture
kevinr51
Posts: 14
Joined: Nov 2013

THank you all for the sound advice i am blessed to have a wonderful girlfriend and great family to help me get through this

and am glad i found great people like yourselves to guide and encourage

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

Welcome Kevin, and good luck with your upcoming treatment. My husband was diagnosed with tonsil cancer in July, and we are now about half way through his treatment. You truly have found the best and most supportive people here! Every question, or concern I have had has been met with not only good information, but also with care and kindness...stick around and make sure to ask questions and join in the conversations regularly, it truly helps to know that others are with you in your fight!

Jamie

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Kevin - I woke up Oct 14 with a lump on left side of my neck, CT on 15th, EN&T biopsied on the 16th, positive for SCC left tonsil and 2 nodes same side stage IV on the 18th - I am right there with you, salivary gland movement the 31st, mask made Nov 8, treatments start Nov 25th - all of these incredible wonderful people have supported me from the very start, they have helped me to prepare in whatever way I can, they have given me strength, hope and a daily comfort - they are the best and I love everyone of them for what they are doing for me - lean on them they are there for you - I will continue to lean and I will beat this and I will give back and help others - this is what they have taught me, this is what they have done for me - keep posting, keep writing, keep asking questions - if you haven't already realized you will be helping me to get through this - you can do it - and Kevin I was scared, and I still am, this has changed my life already - so ask for help, ask for comfort ask for whatever you need, all of these folks are the best, I mean the best! 

Steve

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

like

Ruben and Jude's picture
Ruben and Jude
Posts: 154
Joined: Apr 2013

Hi Kevin, just wanted to chim in to say hi and let you know there are probably more people on here than what meets the eye. When you (or your loved ones) have a concern, someone will have a suggestion or recommendation. You're in good company.

BTW, Ruben was Stage 4, left tonsil, one lymph node; his treated was 35 rads with 3 concurrent chemo's. He completed the treatment in July and said if he knew what he knows now, he'd do it again! His PET Scan was clear 6 weeks post treatment. And THAT's what it's all about!

I think one of the most important things to remember is to stay hydrated with a minimum of 1000 ml (one liter) of water a day, either by g-tube or mouth.

Is that an HD Road Glide I see?? Mine's an HD Heritage. Ruben's is a beautiful beasty Yamaha Road Star.  LOVE to ride.

Take care. God Bless. Stay strong. You will get through this.

Jude (and Ruben)

kevinr51's picture
kevinr51
Posts: 14
Joined: Nov 2013

I start my treatments today at U of M, 7 chemo 35 Rads

My bike is an Ultra classic, i was looking at a heritage i love the looks of those they look very retro if i ever buy another bike it will probably be a heritage

lornal's picture
lornal
Posts: 278
Joined: Sep 2013

I have a switchback.  Just getting used to riding it (and riding in general) when I started having swallowing issues (from radiation in 2007) that made me uncomfortable to ride anymore (now I know it was probably dehydration).  Now my husband has turned it into his "in town" bike.  His bike is an road glide ultra. 

Good luck with your treatments.  Looks like you'll be done shortly after the first of the year.  When I had mine, I had 2 weeks of radiation - took a week off so my throat could recover some - 2 more weeks, and then another week off - and then finished the last two weeks.  Finished on Dec 22, 2007.  Still remember the day.

Remember - hydrate, hydrate, hydrate - start now!

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Just checking in to see how your first day was.....?

Also, just as a side note, I also had a Harley back in the day..., but I had the FXE.

JG

kevinr51's picture
kevinr51
Posts: 14
Joined: Nov 2013

First day was long but pretty uneventful, chemo took sooo long they pumped me full of antacids, antinausea, steroids, benadryl then the carbo and taxol

rads took 25 minutes to set up and 12 to run

hope the rest of them go nearly as well

 

Kevin

Crazymom's picture
Crazymom
Posts: 318
Joined: Nov 2011

Hang in there...chemo and radiation is tough...but doable.  You can get through it.  I had left tonsil and two left nodes....Stage 3..  I came through it ok.  Last two weeks of radiation was terribly painful, but I survived and have been NED for 18 months...  You can do it...stay hydrated....   Ann

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