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New here and wanted to say hello

Hard12Find
Posts: 200
Joined: Sep 2012

I was diagnosed last week with scc, and came across this site and found it to be informational and supportive. It is great to see the multiple year survivors, and that gives me hope. I am having to wait until next Tuesday to talk to my oncologist. I am very concerned with staging, and trying to locate the spread. Seeing stage IV survivors is very encouraging. Thank you for sharing your experiences as I feel knowing what to expect eases my worries, even though treatment sounds pretty horrific, I know I can do it for a couple months or so.
I am scheduled for a feeding tube placement next Wednesday and that seems premature considering there has been no imaging done, but I am trying to trust the professionals. I am sure I will need it and appreciate it in time.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

This is an awesome site with tons of knowledge and support.....

I was STGIII Tonsils and a lymphnode....clean and clear since Jun2009.... I went through the chemo and rads... It's all on my BIO, won't go into it now, LOL.

Anyways, sorry you are here, but it's a good place to be if you have to.

We have a SuperThread that can answer or direct you to some good info as well.

SuperThread

Best,
John

Hard12Find
Posts: 200
Joined: Sep 2012

Thanks John. I know I have 1 tonsil and probably base of tongue. Hope they get me imaged and classed soon.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Glad you found us, but sorry you have reason to look us up. You didn't mention the location of your cancer. Mine was confined to (or near) the larynx. From my reading, I think that patients with tumors in the mouth find it harder to eat than those of us whose tumors are confined to the throat. I should be ashamed by such generalizations. Nevertheless, you should be able to find someone with a similar location, and get more specific advice on how to handle the day to day challenges. Be assured, you healthcare team and your loved ones will pull you thru. Rick.

Hard12Find
Posts: 200
Joined: Sep 2012

I would like to thank everyone for the encouragement. I would reply to each individually but am on my phone and get frustrated typing. Here

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

LOL, I have to double and triple check my phone text...

LOL, some of the things my phone thinks I meant to say would and has gotten me into trouble.

I'm at a point now that I can text anything, they just think it's my phone texting again.

JG

Isign4Him
Posts: 34
Joined: Jul 2012

You might think about getting a port , I had a PEG placement and after it healed had it replaced with a Mic-key-button no pesky tubes much better than the PEG. But the port is worth it's wait in gold ! I m so glad I did the port before treatment started. All of myy blood work , medication, chemo everything goes through the Port, no needles and constant poking ! I was also diagnosed with stage 4 scc and on my second cycle of chemo. Keep in mind beating the cancer is the easy part, beating the TX is the challenge and preparing for the battle in advance is smart
. Keep a positive attitude!

In Christ, Kevin

CivilMatt's picture
CivilMatt
Posts: 2861
Joined: May 2012

Hard12Find,

I am sorry about your diagnosis (scc), that is a very popular cancer for this site, it is kind of an unlucky fortunate for you. Matter-of-fact I am one of your buddies here (trying to be funny). Don’t want to scare you, just want you to know it will work out fine. If you have any questions, just ask and we will try to help. If you stay connected there shouldn’t be any surprise for you on this trip.

To read my bio just click on the name CIVILMATT.

Best,

Matt

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

Sorry you had to join our club ...but a great find indeed.

I was stage III with base of tongue primary tumor and one lymph node involved.

I had only Erbitux (form of chemo) and radiation. I had NO surgery and NO platinum chemo treatments.

Read the SUPERTHREAD John (skiffin) referred to ..it's a HUGE resource with lots of answers.

I am 7 months out of treatment and have been given the NED (NO EVIDENCE OF DISEASE) and I am doing quite well (still some side affects, but nothing to complain about).

I'm glad you have decided to take the feeding tube. You may not need it, but if you do, better to have it "installed now" than in the middle of treatments. I lost 70lbs during treatments. Yes, that's not a typo, 70lbs.

Protein is going to be your best friend during treatments. It promotes healing (I am not a doctor) and calories. Eat all you can now, gain weight if you can (my opinion).

Keep us posted!

Whispered a prayer all will go well for you and you will find some comfort soon. It's all so new and so much swirling in your head...I promise soon you will find a better place mentally because you will have a plan of treatment and you will be fighting back and you will win....not long from now you will be looking back and saying "what cancer"? :)

Best,

Tim

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

I am fairly new to this site as well. My husband goes in for surgery on Thursday to remove cancer on the base of the tongue on the right side and have a feeding tube placed as well. He is staged at Stage IV, but the doctors say staging in the head and neck can have quite different outcomes than some other cancers. We still aren't sure if he will have a neck dissection, but he definitely has chemo and radiation to go through. I will keep you in my prayers.

nick770's picture
nick770
Posts: 195
Joined: May 2012

Hello and welcome from Ohio You have come to the right place there are so many great people on here that will help you get thru keep in touch , hang in there and keep the positive attitude

Hard12Find
Posts: 200
Joined: Sep 2012

I saw my radiation oncologist for the first time today, after his exam he told me I was probably stage 4a, with the primary on my right tonsil, with at least 2 other nodes affected. I would have been scared to death if not for this site. I got all of my dental up to date, and heard my insurance agreed to cover the PET scan. I see my regular oncologist on Tuesday, get a feeding tube on Wednesday hopefully imaging later in the week, and start treatment the following week. Trying to start stock piling foods and gain weight. Setting up a spare bedroom for me or the wife to use when I am sick or sore. Now the hard part....getting through the treatments. Hope everyone here is doing well. God bless you all for caring enough to be here.....
Jim

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

You've come to the right place. From one Stage 4 to another... you CAN get through this. I did, in May of 2010, and I'm still doing great. You are in for the fight of your life, it WILL consume six to nine months of your life for treatment and recovery, and then you will be able to pick up your life and go on.

Deb

phrannie51's picture
phrannie51
Posts: 3622
Joined: Mar 2012

I'm sorry you have to find yourself here, but am SO glad you found this site...it is a lifesaver for me. I was dx'd in March...got lined up for a port, tube, and scan all in the first week...course it took a month for it all to happen. Don't worry about prematurity on the tube. If your Dr. thinks you need one take it, and if you never have to use it good for you. I never used mine till the last three months of treatment, for the side effects of chemo, no less.....nothing to do with radiation or surgery.

Where are you located? And where are you having treatment?

p

Hard12Find
Posts: 200
Joined: Sep 2012

I live in Yelm Washington, and will be treating at Group Health and Radient Care in Lacey Wa.
My family doctor mentioned one of her colleges works there and that she had heard a lot of good things about them. That meant a lot because she has proven herself extremely competent as my family physician. I am both glad and surprised how fast things are moving......sooner I start the sooner I will be cancer free.

Hard12Find
Posts: 200
Joined: Sep 2012

I live in Yelm Washington, and will be treating at Group Health and Radient Care in Lacey Wa.
My family doctor mentioned one of her colleges works there and that she had heard a lot of good things about them. That meant a lot because she has proven herself extremely competent as my family physician. I am both glad and surprised how fast things are moving......sooner I start the sooner I will be cancer free.

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

This is just the right place your're on! It is a life saving for me and my family. My father was diagnosed with SCC Base of tongue with multiple lymph nodes involved and is just about to finish his treatment. He had 7 Cisplatin chemos and 35 radiations, no surgery. It looks good for now, he was also stage IV.

It's good that you start soon! My dad waitet almost 2 months! Cancer boards, check-ups, preparation for radiation... It was pretty anxious time back then.

I believe everything will be just fine with you! Just try to gain more weight now and listen to advice from all wonderful people on this board!

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

Hello and welcome to our little slice of the internet, its a place that nobody
wants to be but now you have found it you will be sure glad you did. The
people on here are like "family" to each other and have helped us all through
our treatments.
I was stage 2 tonsil cancer and had 33 rads only and now almost 5 months
out I'm doing pretty darn good, almost back to normal except for dry mouth
and taste comes and goes.
Anyway once again welcome.

God bless
Tonsil dad,

Dan.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I live in Bothell WA. Treated at Swedish. We are lucky to have a number or excellent medical centers in our area. Radiation is hard on you, no two ways about that. But be certain that your family, you healthcare team, and this board will pull you through.

Eat and drink (water or Ensure) as long as you can. Use the tube if you can't swallow. I found that liquids at body temperature hurt less than either warm or cold liquids. but everyone is different. Rick.

Hard12Find
Posts: 200
Joined: Sep 2012

Rick,
I used to live in Kenmore, and worked for Kenmore Air Harbor. Still have some friends up there. Thanks for the advice I found I had actually Wondered that very question About food temperatures, and also when putting things through the feeding tube later.
Jim

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

Take a seat on our bus and hang on for the ride. Happy to say there are enough of us able to stand up and give you a seat while you need it. It can be a rocky road but know that you will not get every side effect that you read about and each side effect comes in varying degrees. Some are very short lived while others tend to hang on. I always say "take it as it comes and deal with it". I hope your ride is an easy one.

Hard12Find
Posts: 200
Joined: Sep 2012

Thanks.....I think that is all any of us could hope for...an easy ride.

katenorwood
Posts: 1808
Joined: May 2012

Hard12Find,
Sorry to have to welcome you to the group, but saying this there are great people here that can help you through alot of your questions and treatments. We have different dx's, but still will always be here for any and all support I can give you ! Katie

Hard12Find
Posts: 200
Joined: Sep 2012

Thank you Katie, I am sure there will be a lot of questions......

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

Another one of the Stage four survivors (two nodes) chiming in here to wish you well. I was diagnosed nearly three years ago, and got my latest round of clean scans last month - looking forward to having you tell us (in a few months) that you're a new member of Club NED (no evidence of disease - the best many of us can hope for). Also like the others, want to assure you that even though the treatment is sometimes punishing, it is definately doable. Do well.

Hard12Find
Posts: 200
Joined: Sep 2012

Thank you Pam, I appreciate hearing from you....hope you are NED forever more.
Jim

Hard12Find
Posts: 200
Joined: Sep 2012

Got my tube in followed directly by pretreatment PET, 40+ hours without food or water, lost 4 much needed pounds. Stomach muscles are sore but getting better, probably get my port on the 25th, don't understand why they couldn't do both at the same time. Anyway, mask is done, trying to gain weight and ready to battle the beast.
I hope everyone is doing well and am praying for our little group as well as anyone facing this disease.

Barbara B
Posts: 40
Joined: Sep 2012

Hello and welcome from one newcomer to another! Actually I am new to posting but not to reading. My husband was diagnosed last year with SCC base of tongue metasticized to the lymph node.

The people on this site are amazing and there is a ton of great information. We are one year post treatment and he is doing great, as are so many others so you can do this too =)

Happy to hear you have the PEG and definitely getting the PORT. Both were extremely helpful. My husband only lost 5 pounds through treatment thanks to chocolate shakes and Ensure Plus.

We will continue to pray for you.

Barbara

RayandLisa
Posts: 4
Joined: Aug 2012

my dad was diagnosed stageIV A in head and neck lymphs, nodes, submandibular and above where his larynx used to be. he is a total laryngectomee 20 years now and the cancer is back. he is 85. it has been since early summer for the discovery and has been such a long process to this point. his PET and set up with his oncologists have been addressed but thats it. he has no RAD or chemo schedules as of yet and today we are going for his feeding tube and port consult. monday he will be getting his markings and making his mask. i took it upon myself to schedule an appointment at cleveland clinic to be seen by the specialists there on tuesday sept 18th due to the lack of urgency where we currently live. i dont want this to interrupt the order of things or for it to cause him to lose his place in line but i feel the second opinions might be well worth the trip there on tuesday. after reading some of the posts here, some patients seem to expedite their treatments rather quickly. we may have dealt with cancer before but there was only 30 RAD treatments and then the laryngectomee 5 years later so we are relatively new to the process we are facing this time with chemo/RAD combined. has anyone dealt with treatment at cleveland clinic here? and does anyone have any advice about getting a second opinion? blessings to all. check back later to update bio and such. i do have knowledge of laryngectomee living as it has become a way of life for my dad for 20 years so any advice i can offer anyone is welcomed. being an advocate would be my way of paying it forward, so to speak. well wishes everyone...Lisa

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