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Hi! First post - Just got cancer diagnosis

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

Hi all,

I stumbled upon this board and it seems very legit and active so here I am. Obviously, ppl don't just stumble upon and join a cancer subject board unless they or someone they know have cancer.

Last week I saw an ENT who said I had hypopharangeal cancer; however, he referred me to a head/neck cancer specialist surgeon who diagnosed as base of tongue cancer stage 4a yesterday. Guess that makes me a full member of the club.

Couple questions

I saw a blog feature on this site; how many of you use this and how effective is this to communicate your status to other interested parties? I was thinking about creating one elsewhere but if the blog feature suffices that works fine for me.

I see a number of other discussion areas, which ones do you find useful and why?

Thank you for your support as from what I read it is going to be a rather grueling adventure for the next several months.

Don

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Don,

Sorry to hear, but you came to the right place! Lots of experience surrounds you.

For the family and friends updates, I use caringbridge.org .. It's secure in that it can't be googled..and we have relatives in their 80s who can figure out how to use it easily... And good tools for posting too.

My husband is stage4 tonsil cancer.. We are in week two of treatment.

Ask your questions.. You'll get good info on this site.

Welcome, Kari

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Welcome Don...

I can't help you much on the blog.., I do know a few that use and endorse CaringBridge, like mentioned.

You'll find the crowd here very easy to talk to and with tons of experience.

Check out the SuperThread when you get a chance.., tons of great info there.

SuperThread

Best
John

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

Hi John,

I started crawling through the superthread and it is amazing. Between those primary links and links off those, it feels like that is likely 90% of the relevant info interested and involved parties need to know.

Thanks again.
Don

sassysrice's picture
sassysrice
Posts: 117
Joined: Nov 2012

Hi Don
You found a great place for info & support. I too stumbled here a few weeks ago. My boyfriend has stage 3 SCC of base of tongue/ 1 lymphnode. We are on day 3 of 35 rad and start chemo tomorrow.
The joined before the biopsy andlearned alot. the doctors have been impressed with my knowledge and types of questions.
Hang in there and keep us posted. It's like having many people by your side through this journey. God bless and your on my mental prayer list
Sue

longtermsurvivor's picture
longtermsurvivor
Posts: 1818
Joined: Mar 2010

the blog works fine on this site. I've used it a bit. Soccerfreaks has an entire book on his. Great reading, that. Plenty of time for you to pick whatever discussion site suits your fancy. Whether it is grueling or not just depends. Don, my first cancer was BOT, for which I had radiation and a radical neck disection. It really wasn't grueling. I was able to work all the way through treatment and ate solid food all the way through as well. Others have an entirely different experience. May you be one of the lucky ones.

Pat

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

Pat,
Thanks for your comment. You are one tough dude (dudette?). I read your blog on your last journey, sounds like a pretty long and tough trip, but you are here typing so that is a good sign. After a bit more than a year, how much of your original quality of life do you feel you reclaimed, just curious?

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Medical/Gardener/Massey Ferguson ~ Extraordinaire...

longtermsurvivor's picture
longtermsurvivor
Posts: 1818
Joined: Mar 2010

and made potato soup. Dang I'm good:) Headed to Orlando for the Capital One bowl. My Huskers are gonna have their hands full of Georgia, I'm afraid.

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Give me a call, maybe we can get together for a beer, coffee, etc....

JG

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

finding this site right away. I too stumbled upon this forum when I was first diagnosed with Nasophraengeal Carcinoma, and found a wonderful place to talk about my fears, my concerns, and my treatment among people who have been there, and done that....as well as others who were also starting their treatments. Along with all the experience, the folks here are smart, knowledgeable, supportive and kind. This is the best place to be before, during and after treatment...

I'm sorry you had to join our little club, but delighted you found us...welcome.

p

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

Welcome to our "home" , make yourself comfortable. I know getting diagnosed can be scary, overwhelming and confusing but you've come to the right place. I'm sorry you find yourself in this position but be assured that we are all here for you. Please feel free to ask us any question about treatment or symptoms or anything else that you are unsure of.
As far as a blog site, caring bridge is the one that so many use. I have 3 friends/family that use it and it's very easy to use and private. I don't personally have a blog on there but I visit often to hear about the progress of my loved ones.
I found this site just at the end of my treatment and I so wish I'd had it during treatment. The advice and compassion you get here is so much better than what a nurse or dr can give you, simply because most of them haven't actually been thru what the people on here have.
Please come back often, and welcome again!
Billie

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

You found the right place. This is a great group. There is a lot of wisdom scattered among its members. Everyone honestly contributes their experience and viewpoints. Not that everything everyone says is 100% correct. And that includes me. But when you look at everything said, you will find many helpful hints.

If you ask questions here, you will find out what to ask from your doctors. Rick.

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

Hi Don,

Welcome to the H&N club. I think were legit and yes you sound like a full member.

I don’t know about the blog feature. If I tried to write a blog during treatments it would have been mostly about sleeping.

I find the H&N forum most useable because I have the most in common with the warriors found here.

Parts of treatment (side effects) may be grueling, but hopefully, most will simply be unpleasant.

Best,

Matt

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

I am in awe at the response and support. Thank you all. I am here for the duration and look forward to both giving and receiving support.

For those who have already trodden down this path some of this may sound familiar; for those who follow, this may help illuminate the path you may be on.

10 days ago - I see a primary care doctor after finally admitting the growth on my necks is not going to away on its own. It's been there and growing for many months. When it started pressing against my vocal cords and I would squeak like Pee Wee Herman, it started pressing against my windpipe, and my family screamed about my constant bad breath, I went it.

I knew it was not good when the doctor sort of had that look like seeing a ghost. Then another doctor was called in, then some resident to see it. Orders were written and I was sent to hospital for various blood tests, then next day for throat and chest CT scan. Saw an ENT later that day who I think though it best to refer me to a throat/neck cancer ENT-surgeon.

Had that appointment yesterday and he immediately did the preliminary diagnosis.

Now scheduled next several days out for dental and also PET scan, MRI, and general operation biopsy. I guess at that point they should pretty well have confirmed diagnosis, right?

Both ENT mentioned chemo and radiation first then surgery later depending. That's about it for now.

I did call the help line here and got some good information emailed about oral cancer and the treatments, etc.

Thank you all for your support.
Don

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Sorry you had to join our club ...but it will be a good thing.

I was Base of Tongue Stage III w / 1 Lympe node (so we sound familiar). I also was HPV 16 + (look that up if you have not already)

YOur in for a ride ....but it's doable and you can take us along since many of us have been there.

I only had Erbitux and rads ...never had to have the surgery as the rads and chemo seemes to have done the job well at killing off the cancer.

Best,

Tim

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

I forgot to ask you, where are you and what facility are you going to?
You'll be surprised by the number of people that seem to end up at the same place.
Billie

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

Hi Billie,

I live in San Francisco Bay Area - East Bay. Things change so fast but right now it appears this doctor will likely be assigned for some time. His main hospital is John Muir in Walnut Creek, CA. but he also serves elsewhere probably due to his expertise.

I feel extremely fortunate to have him as his credentials seem stellar. His specialty is head/neck cancer and he did a fellowship at Memorial Sloan-Kettering Cancer Center. I understand it is #2 rated in USA and among best in the world.

He is SO SO competent and SO passionate, I know my health is in the care of one of the best in the world.

I took a look at these fellowships there and they are very limited. Some involved only 4-12 candidates, so only the best of the best get in.

Blessed to be here for support.

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

How are you? I read your log and the pattern I am seeing for cancer survivors is this thing, even when beaten down up front, creates many long term side effects. Like laryngitis for a non-throat cancer survivor is more a nuisance but for you it was really much much more than that. What report did you get back from Seattle appt?

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

with all the Dr. appointments, scan appointments, dentists, etc etc...you'll be busy doing all this stuff and at the same time wondering if they're ever going to get on to the actual treatment. Drove me crazy, wanting the cancer out of me, while it seemed the Dr.'s weren't in any kind of hurry at all.

Sounds like they are taking good care of you, tho...keep coming back here...it's the small stuff like lotions and potions for rad burns, what to do about sore throats, mouth sores, etc that we can offer help in figuring out what to try to mitigate discomfort. Just keep in mind, this isn't an easy road, but it's SO doable...

p

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

Hi Don.

I was diagnosed a little over three years ago (the antibiotics the Urgent Care center gave me for my "infection" didn't do the job). My team's plan was Induction chemo, then chemo radiation in hopes we'd be able to avoid surgery. I did not require surgery on my tongue, but did have to have the modified radical neck dissection nine months after chemo-rads. Doc told me my scans showed No Evidence of Disease ("NED") a little over a year and a half ago. Today, I can eat most things, and work full time. I have some lasting effects from treatment, but none are horrible.

I can't help much on useful discussion areas - this is the only one I use. Early in treatment, I visited the chat room at least once a day here - I liked the instant feedback, but didn't always care for the company in the chat room (sometimes very helpful and supportive and informative, sometimes funny or silly distrations, and unfortunately, sometimes immature and unkind). Chat room was helpful, though, when it came to dealing with side effects - very often all I really needed was "I had that, too - the medicine the doc gave me cleared it up" or "It helped me a lot to . . ." This discussion board, though, was a god-send for me. I might have to wait a little longer, but I got info I could rely on and relate to.

Do well.

jcortney's picture
jcortney
Posts: 424
Joined: Sep 2012

Like all of us, we were all new here at one time. Mine was about 8 weeks ago when I was diagnosed with BOT SCC T-1 with lymph nodes on both sides impacted (N2C disease). Anyway, the info I got here made making treatment decisions so much more informed. I opted for a treatment recommended by MDA and Baylor here in dallas of Induction Chemo (three treatments of god awful Chemo each spread 21 days apart) that succeeded in reducing my visible cancer to zero. Now I begin the final phase of Radiation to hopefully cure this beast.

So, ask any questions you may have, multiple someone's here have already been through it and can and will be a great resource.

As for a blog, I decided to use google's blog and have had very good feedback from it. You can see it here:

jcortney@blogspot.com

So, take your time, getting comfortable with your treatment and treatment team as they will be the key to your success.

Joe Cortney
Dallas, TX

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

As a professional IT person, I spend LOTS of time on the computer, Internet, and many forums sharing and gathering information, so this site is only different in the subject.

The discussion forum here is wonderful, shared stories, words of encouragement, and as you point out, slower response, but more thoughtful too.

"modified radical neck dissection" - that sounds scary. But if you can eat fairly well and I assume you have your voice, it seems like you can overcome the "radical" ness of the procedure. I will likely encounter that signpost on the road to recovery, hope it just flies by me.

Mikemetz's picture
Mikemetz
Posts: 348
Joined: Nov 2011

If you haven't done so yet, start with the SUPERTHREAD at the top of this board. It has a lot of questions that you probably haven't even thought of yet--and good answers from people here who can answer them from first-hand experience and/or good knowledge.

As you have already learned, this is a wonderful site, with wonderful caring people. I didn't find it until I was 2+ years after treatments, and really wish I had found it at your stage of the game.

I started a blog right after my initial Dx and use that to post my longer thoughts to family, friends and whoever wants to read them. It helps to get the word out to people who are thinking of you, without having to write 10s of individual emails, texts, etc.. You can send me a private email on this site if you want to see my blog.

In the meantime, welcome to a quite exclusive club that no one ever applied for membership to join!

Mike

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

Hi Mike,

I could not find the link to send you email so was kind of curious if you hold your blog a bit closer and not directly public? As an IT pro who builds websites for a living I think I am going to build my own blog site and then have it private by having an approved registration step. That way everyone who is on the secure site know that what is said there stays only amongst those who are approved members. So far I have not considered create sub sections of the blog site or added access rules to further fence off content.

Given I am going to feel like poo pretty soon, I certainly do not want to make this too complicated for myself or others. Last night, I did sign up a peer buddy to keep watch over the well being of the back end of the site if I can not keep up.

Thanks
Don

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

Like you, we too stumbled across this forum and it was the best stumble you could ask for. My loved one was diagnosed this past August with Stage IV SCC BOT w/ 2 lymph nodes (HPV16+). We just finished tx about a week and half ago. It consisted of 7 weeks of rads/chemo. Chemo being Carboplatin with Paclitaxel given once weekly for the 7 weeks and rads were daily (5 days) weekly for the 7 weeks. About half way we needed a PEG (feeding tube). We opted to take our chances without it and were pretty much forced to get it midway as the eating/swallowing were becoming uncomfortable and losing some weight.

You will find this forum very comforting and full of advice from survivors and people that are going through treatment. We consider ourselves a BIG family that all rode the same bus, just had some different seats at times. Feel free to post a new subject of concern anytime. I'm sure you'll get many responders ready and willing to help.

You can pm any of us for any extra detail you would like regarding our specific dx or tx. Most have no problem sharing.

God Bless you on your journey,

~C
(Cureitall)

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

Hi Cureitall,

Thanks for the kind words and validation of the folks on this site. Although already, I feel the warmth and love of true humans only and no a single troll or one to spill ill will and such.

At first I thought, man, it sure seems like a long time ago when getting the diagnosis until this past week finishing treatment. On second thought, the fingers flittering and time goes pretty fast, and in fact, it seems you got the ball moving rather quickly.

So, after a week post 7-week treatment, how are things going? fatigue, pain, other side effects?

Thanks
Don

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

Don,

Once we got the diagnosis in late August, there were many appointments that came shortly after. In early/mid September we met with the U of Michigan Hospital and were then greeted by our new ENT who gave the evaluation and had initial PET scan. Case was then referred to Board of doctors. Then from there we met with Radiologist & Oncologist that outlined the tx plan. He was then fitted for his mask and a complete dental check up. This all happened within about 1 1/2 - 2 weeks. October 8th we began tx. The first 3 -4 weeks seemed to go fairly quick and then as some of the swelling/discomfort that appeared in the mouth and neck came it seemed like tx slowed down (maybe because we wanted it to go faster it seemed like it). The PEG (feeding tube) was placed about week 4 (wished he would have gotten it before tx, by the time it was scheduled and done, it had been several days without food). Pic line was also inserted about that time as he then needed extra poking/prodding because of the need for IV fluids (which later came out within a week or so due to an infection in the arm). Tx ended November 27. At about 2 weeks post, we are still feeling the tx full swing. Waiting for the next week or two to hopefully see things settle down in regards to pain and starting to get some swallowing down. We will have the PEG for a couple of months.. This is very doable. Go with the mindset that "YOU CAN DO THIS" and "IT'S ONLY TEMPORARY". Take lots of notes from others here and keep coming back to give us your updates. We'll all help you through it.

God Bless you on your journey here. The bus door is open....

~C
(Cureitall)

patricke's picture
patricke
Posts: 477
Joined: Aug 2006

Hey Don, welcome to the family. I must say, I am sorry to be putting out the welcome mat for you, but since you have been hit by the beast, this is a great place to call home during your journey. I too was diagnosed with BOT stage IV cancer a smidge over 12 years ago. Yes, you will go through a grueling gauntlet, but you will make it. Always (a word which I rarely use) remember to keep your eyes on the light at the end of the treatment tunnel, and with time your life will get much better on the other side of the treatment and recovery process. The adage "take it one day at a time," I beleive, is essential to remember, even modifying it to "one, hour, minute, second, or nanosecond" as circumstances may demand. The mantra which I have used and continue to use to get me through the most challenging times is "I can do this," which I give you my full and complete permission to also utilize if it fits for you. It's important to keep a sense of humor as much as possible, seek humor stimuli (TV Shows, movies, etc), and positive, enjoyable diversions always, but especially during this journey. These are just some of the things that have enabled me to make the journey, for your to consideration.

I haven't plugged into any of the blogs, and this is the only discussion area that I use, except for the general Chat Room from time to time.

You have started the thousand mile journery, you are in good company.....*

PATRICK

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

As you can see we have some great people here. They know a lot and freely give of their time, advice and support. I am sorry you had to find us, but that being said you are in great company. I look forward to seeing you on the other side of this soon.

ditto1
Posts: 634
Joined: Mar 2012

looks as what could be said to you has been. These are great people and they never sleep or so it seems because if you need to shout out it seems a reply is almost immediate. I was dx with Bot IV back in March, long road to NED but for now thats where Im at. Hope to keep it that way when I have my PET scan on Monday. So again welcome to the best place to be when dealing with the worst thing you can go thru.

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

You sound very happy with your surgeon and that is half the battle. I'm happy that you are in such good hands. I'm in Southern California and I feel equally as lucky with my surgeon at USC H&N keck medical school/hospital. Doesn't it feel good to know we have the best?!
Keep us posted :-)
Billie

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

Hoping the best for you on Monday. I rooting for you for sure!

Don

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