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Roll Call, January 2009

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Here’s wishing all the very best for the coming year and that we can all answer and be present on this roll call. This roll call was started on August 5, 2008. Please post if you are present this month.

Here are the folks who had head and neck cancers:

NAME, STATE
Bany, New York (Dad –TR2- had cancer)
Bughunter Tennessee
Christmas California
Cwctcher, Virginia
Devildog, Michigan
Garyr New Mexico
Geezer Florida
Hawvet Hawaii
Jagged, Washington
Jkinobay Mexico (treated in Arizona)
Jodyman, Texas
Ljoy Texas/Minnesota
Lolojldunn Montana
Lorileona Wisconsin (husband had cancer)
Marymoo, Alabama
Marywiz15 Colorado
Paula002, Montrieal
Pie123 (no state listed)
Slickwilly Michigan
Sash Florida
Sassyque Pennsylvania
TereB Texas
Tom55, Michigan
Train-nut Oklahoma
Victor 53 Rhode Island
Wboaz Oregon

I would like to offer my condolences to Hunpot from Massachusetts. Her mom passed away on August 18, 2008 from squamous cell carcinoma-top voice box.

There were a total of twenty six of us who answered the call. We are from 20 states and one from Canada. Jkinobay lives and works in Mexico, but was treated in Arizona. Congratulations to TereB who first had the cancer in 1987 and here it is, 22 years later.

Victor53 is from Costa Rica, but moved to Rhode Island for treatment. He was still being treatment when we started this roll call.

Marymoo had surgery on August 21, 2008.

Jodyman had started radiation and chemo treatment for squamous cell carcinoma at the base of the tongue. This followed treatment for lung cancer in 2005.

Hope they are all well. Please provide an update when answering the call. My wish is that you will all respond and we are all here as we start year 2009. The next roll call will be in July of this year. If anyone else wants to be included, please provide the type of cancer, the year and your home state.

Aloha
Hawvet

bany
Posts: 38
Joined: Jun 2008

i hope everyone is doing well too.

TR2 (my dad)
Ottawa, Canada
ssc maxillary sinus, radical surgery june 2008
cancer returned december 2008
waiting for radiation treatments to begin

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Hello Bany! Not sure if you still use this website anymore, but I saw you are from Ottawa, Canada! I'm from Canada too! Could you let me know if you are still here?

Fishingirl (Cindy)

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

still in rhode island i did 6 weeks of chemo once a week Erbitux,placlitaxol,carboplatin

then a 7 weeks of radiation mon-fri with a double on fri. plus/ chemo cisplatin everyday
on weeks 1,4 and 7 finished october

then radical neck disection for thanksgiving.

doing great now.
Going back to costa rica in april for a couple months till rainy season starts. Then i have to leave my truck on other side of river and have a couple miles up a mountain on horseback.
Im feeling strong enuff for life on horseback again but its a bit much for my wife and 2-1/2 year old son. So i will come back here and sit out the rainy season from july to december.
A big thank you to everyone who has answered a post here or asked a question they have all helped me so much.

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

hawvet thank you for including me in your roll call. I just melted to see my name.
I first joined this site to thank soccerfreaks because my mom always talked highly of him, his name was the one she always would tell me to find for her so he could answer or help her with questions.
Once i joined i began to just learn about the cancer she had to see if thier was something she/we/dctrs had done wrong as all i could think of is why did she have to die. I just wanted to learn more and more incase god forbid something ever happens like this to someone i know or close by maybe i can be of help.
Once on here i learned there are many people out there with this terrible disease and that alot go through many experiences like i once did so this is now a routine of mine to come on here and gives words of advise or wisdom to others and i hope to make each persons terrible ordeal somewhat easier with my past experiences.
I wish everyone on here the best of health and luck with their ongoing fight . my thoughts and prayers go out to everyone on a daily basis that has to endure such a struggle and fight everyday.
GOD BLESS
tracy

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

HAWVET. I believe I found your roll call shortly after finding this sight. I finished my initial CHOP+Rituxin and 25 rounds of radiation on Dec 24, 2003. I suffered through all the major side effects of treatment along with years of tests and many false masses. Even today I was at the dentist fixing damaged teeth. One of the best parts of my survival was finding this site and the many caring individials on it. All special in their own way and each having something to offer. Just take the time to read and learn! I hope everyone realizes how special you are. For many its not easy to come on here and open your soul. To talk about past pain and emotional issues and sometimes fight back the depression that comes with it, just to help another human being. I wish everyone the best and I'll see you in July for the next roll call. Slickwilly, Michigan

ljoy's picture
ljoy
Posts: 83
Joined: Dec 2007

Still freezing in Minnesota. Released from cancer center in Sept. 08 after three year PET scan was free and clear. Now seeing ENT and Internist once a year. Hope everyone has a healthy 2009.

Thanks to all who participate on this site.

sassyque
Posts: 44
Joined: Jun 2008

Hi Johnny.Was glad to see you again.I'm still here in Pa. freezing and rooting for the Pittsburgh Steelers.Sure hope they win the Super Bowl.Nothing has returned and I'm still praying for all of us.Keep the faith and God bless you and yours.Have a very happy ,healthy New Year....Betsy

train-nut
Posts: 101
Joined: Jun 2008

Doing well in Oklahoma. Best of health to all.

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Thank you for those who have responded so far.

TR2 - I do hope your Dad is doing well. Before you know it, radiation treatment will be over. Here’s wishing that the treatment is successful.

Victor53 - Am glad you are doing well now. I remember when you first came on and I was reading your threads. I do not know if it is too personal, but what do you do in Costa Rica?

Hunpot - I do hope that inner feeling of losing that special someone has become more tolerable. Thank you for staying on the board and offering your assistance and knowledge to those of us who have under gone this dreaded disease. Take care.

Slickwilly - It is not too surprising that many of us share the same experiences. I have my teeth cleaned at least three times a year. I asked my dentist to do his best to save my teeth as best as possible. They decay more frequently. I have a couple of teeth that were patched (filled in) twice. He got me on a prescription fluoride toothpaste and I rinse nightly with ACT. I agree, there are a lot of good individuals here. There isn’t anything better than the first hand experiences from those in this forum.

Ljoy - Am glad your 2008 scan showed up cancer free. It was about three years after my treatment that I was given the green light. I had a slight chuckle on your freezing in Minnesota and here I am in a T-shirt, both in and out of the house.

Sassyque - I remember the weather in Pennsylvania having been stationed with the military in a place called Oakdale in Pittsburgh. For a while, the Steelers had been my team. I too am rooting for them since I had placed a small futures bet for them to win the superbowl. I had wanted Philadelphia to have beaten Arizona and it would have been an all Pennsylvania Superbowl. I also had a small bet on them and I would have had a guaranteed winner.

Train-Nut - Thank you for responding. The Sooners almost did it this year at the Orange bowl. May be next year.

TO THE REST: Please respond. No comments are necessary. I do wish you are all well.

Aloha,

Johnny

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

Still here and going strong.

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

hawvet no i dont mind at all.
I did the self sufficiant farming stuff raised my own chickens and garden had many different fruit trees. My neighbors go to town once a month for rice, salt, cooking oil, and sugar some even did their own oil and sugar
I also sell real estate on the side without trying too.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

But, I just had to tell you that I just had my 18mo. PET/CT scan and it was "clean as a whistle". Feeling better all the time, especially with great news like that.

Stay well..................JK

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

had my 1st pet scan 5 months after treatment 2 weeks ago i get results tommorow

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Results? I need to uncross my fingers here...................

TIM_WWJD
Posts: 38
Joined: Jan 2009

I am not on your rol list as I was just diagnoised the first of this year. I have tonsil cancer in stage one. It started as a lump in my neck and one thing lead to the other. I have not started treatment yet, we have met with a specialist that gave us the options. One was a surgery to remove and then radiation and chemo. The other was intense chemo followed by radiation and chemo. After weighing the options we are going with the later. I am trying to get as much information as I can so I am prepared. It looks like a long and tough journey but there is a light at the end. Oh, I live on the Oregon coast, its not heaven but I am sure it is close. Thanks for letting me join your ranks. I sure has a rough initiation.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Welcome, and good luck.

I would have chosen differently, regardless of what anyone says: get rid of it, if you can.

But if your doctors are suggesting that route, then that is the way to go.

Congratulations on your survivorship. I agree with your implicit suggestion that it is a pretty crummy club to be part of, but you will find most of the members of this club to be caring at the very least, while also very much educated about the topic and willing to give you their views.

If you seek information, here, I would suggest a top-post, that is, making a post of your own in this area of the discussion board, one that repeats the history you provide here, along with your questions and concerns.

Take care,

Joe

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

TIM_WWJD

Welcome. It will be great to have you on the roll call. This roll call will appear on January and July. That way, we can keep track of those H&N folks on this forum.

As Joe (Soccerfreaks) recommended, you may want to create a separate thread and people may post a reply, It will also help others seeking information on a specific type of H&N cancer. I wish you the very best.

Aloha,
Johnny

Craig_Griffin's picture
Craig_Griffin
Posts: 32
Joined: Feb 2009

Hello, For your Role Call my name is Craig Griffin. I was diagnosed with Mass Squamus Carninoma (tongue base) in March, 2008. I live in Indiana.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Welcome Craig! It is a crummy club to be part of, to be sure, but since you are a member, you will find that there are no finer, more caring people in the world.

Please explore the discussion boards, which you have obviously found, as there is much information in here that is well-reasoned and based on experience. And if you are of the kind that like more immediate contact, there is also a chat room here, where, for the most part, the people are open-minded, kind-hearted and caring, and also well-versed in various aspects of the cancer experience.

You can read of people's experiences, some times, in their personal pages and in their blogs and expression areas, and you can add your own if you choose to do so.

Again, welcome, and best wishes for your good health.

Take care,

Joe

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Will be glad to include you in the roll call line up. Hope you are recovering well after your treatment.

I do not know if Soccerfreaks was referring to this line up as being that club, but it was not intended to be one. I believe he intended to mean that we are part of a forum and that not belonging is preferable.

I just thought I would have a listing of names so that if someone drops out, we would still remember the person. With our illnesses, we never know what could happen. This roll call idea may not be working out. Many has not responded. I hope they do.

Aloha,

Johnny

moondreamer
Posts: 1
Joined: Feb 2009

Craig, I'm so sorry to hear what you are fighting -- what a fight!
My daughter's name was Griffin & lived in Evansville. I have a lot of relatives
around Anderson, IN. Right now my sons wife has terminal brain & bone cancer, his son was diagnosed 2 weeks ago with mestastasized Ewing Sarcoma, and his daughter had 3 tumors removed from her abdomine & radiation. He lost his job & got evicted from their house, and the van is on it's last leg. So I guess the saying is true 'walk in another mans shoes'.
I DO sincerely pray that you keep fighting. I was a caregiver for 35 yrs. in hospitals in IN & AZ and believe me, Ive SEEN some unbelieveable recoveries. Would love to hear from you.

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

4 month survivor of Esthesionueroblastoma of the Ethmoid Sinus and Nasopharnyx.

Sirena Finch - San Antonio Texas

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Sirena, thank you for responding. Please respond again in July when roll call is posted. Your user name would suffice instead of posting your real name. I do hope you have responded well to your recent treatment. Aloha, Johnny

Christmas
Posts: 91
Joined: May 2005

Happy New Year! I made it to another birthday with the biggest smile on my face. I just had my 56th birthday. Being a cancer survivor puts a different perspective on things. While other ladies at work dread adding on another year, I was the happiest person that day - to be able to celebrate being alive and adding another year to my resume. Can you believe that someone said that they wish they could be like me???

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Sorry for not checking in more often. Jkinobay here, doing great, about 18 months post treatments and doing great. Still live/work/fish in Bahia de Kino (Kinobay) Mexico but Docs are in Tucson, Az. Have 18 mo. PET coming up 4/14. "Changitos".......Spanish for crossed fingers.

Sad to report that one of our brief members from early 2008, MOM674, passed away in Dec. 08. She fought it hard and had a tough run but suffers no more.

Promise to check in more often. Take care and God Bless to all.

JK

PBailey
Posts: 16
Joined: Jan 2009

Hi there from Northern Virginia, another Esthesioneuroblastoma survivor. I was diagnosed in Oct 08 and had surgery in Nov 08 with follow-up radiation in March 09. Hoping for clean scans in June and will welcome the July roll call.

Cheers & Blessings,
Patti

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

Saw you are on line and posted. I just came back from my check up, 5 months after my last radiation, and Dr is pleased with the results, no sign of new disease forming and I am healing nicely. Still some annoying side effects... but Im sure they will eventually go away. or atleast I hope the do :)

Hang in there!!
Sirena

PBailey
Posts: 16
Joined: Jan 2009

Sirena,

Who could ask for more, what a great report! I am doing really well after radiation, I seem to still be healing but no complaints from my little corner of the world. Sorry about the side effects,let's hope they go away soon. I still have no sense of smell but I still have hope that one day it will return. Wishing you well..when do you go back for another check up? I have a post-radiation visit on the 1st then MRI in June. You hang in there too!

Cheers,
Patti

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

right side where giant lemon sized lymphnode and tonsil into base of tongue tumor were shows totaly clean.
A little concern but they say is most likely nothing showed a mild uptake on left side mandible and a tiny spot on thyroid.
They say thats what pet scan showed but they dont see anything thing on the cat scan.
They say very unlikely spread to left side and thyroid spots are common. I feel great except for some nuerapothy on left hand and bottom of feet which seems to be getting better. My salvia is pretty good. Sweet taste buds are still messed up which is sort of a good thing.
So they say another cat scan in 3 months and another pet in 6 months. Im heading back to the jungle in costa rica in August for a month or so. Then up here in rhode island for rainy season till xmas, they back to jungle for january thru june.
You were living in mexico right? still?
Thanks for checking on me Victor Brown

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Yeah, I had my share of scary false positives. I think they are common.

Yes, still living/working in Mexico up north about 200 miles south of Tucson, Az. No Swine Flu here yet but practicing the basic precautions.

Take care and way to knock it out of the park. JK

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

I'm still here. I've been busy with a new job lately and my last follow-up was good so all is good here. :)

I did have a "spot" show up on my right lung after my last scan of my liver so there is a little tenseness there but we will do another scan in a couple of months and I expect it to remain the same (no change). If so I will then relax and be able to fully move on with my life.

Wayne

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Congratulations on the new job. I am sure that helps keep you going and your mind from drifting off to the wrong places. We all go through it. But, do the best you can to move on...........don't wait.

I'll be praying for your successfully clear scan in a couple of months.

JK

JGE
Posts: 50
Joined: Mar 2009

WBOAZ,
What ended up being the results of your "spot" in the lung? I seem to worry about something like that every time I cough! I go back and forth from feeling confident that I beat the monster to overly worrying about recurrance! I still say the psychological number this thing does to you is the worst part about it! Once they cure you, they need to figure out a medical way to wipe it from your brain!

Base of tongue. Chemo/Radiation finished 11/15/2008. Two lymph nodes removed prior to treatments. Clean PET/CT as of July 2009. Clean physical exams to date.

Thx

byzas
Posts: 9
Joined: May 2009

squamous cell carcinoma,left tonsil,stage III , 2007, New York

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

A tough crowd to have to join but glad you are amongst we survivors.

Take care........JK

souplady's picture
souplady
Posts: 10
Joined: May 2009

I am new to site since the beginning of the week.
I live in WA state and had tonsil surgery for squamous cell carcinoma stage 4 for removal of left tonsil and lymph nodes which was removed last Monday

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

I start walking the road of treatment ,it is my second day today treating post surgical cancer small tumor ,thank god was not spread.
Ill keep posting along the walk.
Roxie

oldejack's picture
oldejack
Posts: 28
Joined: Sep 2005

i'm aliiiiiive!!!!!!!

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I'm here, alive and kicking.

--Jim in Delaware

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Not sure if I am doing this right. But if this is roll call, I'm assuming you want the names and type of cancer they have?

My name is Fishingirl (Cindy)and I finished my last radiation treatment 30 days ago. I was diagosed with squamous cell carcinoma. And I too wish everyone on here the very best health!

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Undiagnosed Primary, Head & Neck, Diagnosed 7/2009, New York
Finished TX -Radiation & Chemo (cysplatin) on 10/16/2009, awaiting PET Scan 1/2009.

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

Undiagnosed Primary, Nasopharyngeal/NPC, Diagnosed 12/2008, because of two left-side neck tumors found in 11/2008, and biopsy analysis. 34 rads- 20 places/session, and two 4-days of 24/7 chemo pumps of 6880 mgs cisplatin and 125 mgs of flouracil, each of weeks #1 and #4. Week #6 spent in hospital (for 4 days), due to 101+ fever, and other symptoms. Last rad in the first week of April. Tumors eliminated with treatment- not surgery. Second PetScan, post-treatment, showed possible problem below the tongue, but Otolaryngologist not too concerned about. University of Iowa connected. Port and feeding tube installed in January of 2009, and still have both. Next/3rd PetScan due to happen in early-2010. Still alive, and LIFE IS GOOD.
kcass

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

Hi everyone,
I'm 2 1/2 years post treatments. I am still learning how to adapt to my "new normal" and am doing well so far. I hope all of you other survivors are too.
My sincere condolences to those who didn't make it...my thoughts and prayers are with them and their families and loved ones. May God bless them and keep them.

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Hi everyone, diagnosed June 2009 with SCC base of tongue. 6 weeks out of rad & chemo now and feeling super good. Eating pretty much whatever I want, been back to work for a month, ice hockey with my 10 year old daughter couple times a week. 1st PET scan coming up in next couple weeks. Just saw surgeon yesterday, he's very happy with what he see's and says keep it up. Thank-you all for your comments and encouragement, you are a very special group.

Mike

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

So far so good i actually feel great ,quitting smoking and losing my sweet taste buds sure help.
Only problem is when i let my mind wander into the reacurrance zone because of some little twinge or
feeling thats different in the neck/mouth area.

Hondo's picture
Hondo
Posts: 5601
Joined: Apr 2009

Hondo from Louisiana, Cancer type NPC started in 2002.

Still here and doing well, PET scan on Dec 7 so keep me in Prayer.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I am not on the roll call as I have just finished my treatments in September. I was treated for squamous cell carcinoma of the larynx and then treated for nsclc adenocarcinoma in my left lung. Needless to say it was a long summer.

I have my first CT scan sometime in December, I don't know the date yet as the hospital doesn't make appointments that far in advance. Hopefully I will get good news before Christmas.

I live in New Hampshire and I'm freezing my butt off right now :-)

Hondo I will definitely keep you in my prayers.

Good luck and continued improvement to everyone on this site.

Glenna

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

I am here as well, and hope to be for many more years.

Diagnosed and treated for SCC stage III right tonsil (HPV derived).

I found out I had throat cancer January 2, 2009. I went through the nine weeks of chemo (Cisplaten, Taxotere, and 5FU), then seven week of concurrent chemo/radiation (Carboplaten, Amifostine injections every day and 35 radiation exposures), finished all of that mid June 2009.

First PET and CT's were clean and I'm in the regular scan/lab stages at present every few months.

God Bless all who have endured, and continue to do so....
John

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

I'm still here

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