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How long have you survived

pascotty's picture
pascotty
Posts: 164
Joined: Aug 2010

I think this would encouraging for new and old members to read how long you have survived H&N c (cannot give it a capital)

I am a 5 month survivor of Right tonsil c, with 1 lymph node involvement T1N1M0

Cheers Jen xxxxx

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

I am one year post treatment for SCC Supraglottic laryngeal T3NOMO and will be one year post for NSCLC in left lung on the 28th of this month.

Still in remission from both cancers and doing great!!!

Cheers to you Jen,
Glenna

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

One of my bestest buds on here...

Unfortunately lost her battle..

Rest in Peace my friend

~Gone not forgotten...

John

fisrpotpe's picture
fisrpotpe
Posts: 1340
Joined: Aug 2010

5 golf ball sized nodes wrapped around carodid on left side of neck. 38 treatments of radiation, 3 one week long 24 hour per day chemo treatments and radical neck disection.

pascotty's picture
pascotty
Posts: 164
Joined: Aug 2010

Now that's exciting awesome and totally encouraging. Thank you for posting xxxx

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

But, what does the screen name mean? Every time I read it, I am reminded of the artist formerly known as "the artist formerly known as Prince." I believe he's just "Prince" again.

Deb

Dave B
Posts: 7
Joined: Nov 2010

Wow, you have come through a lot! My story is similar but with only surgery, no treatments. My right carotid body took off growing about 1988. By 1990, after multiple doctors had guessed cyst, inflamation, etc, I finally had it excised. No word about any treatments, and I was assured that it was benign. In 2003 I was diagnosed with distant mets to lungs, mediastinum and most vertebrae. Same med group still had slides of my CBT, and declared my mets a match. So too widespread for excision or radiation, and my onc doesn't like any of the chemo coctails available. Just taking one day at a time and staying thankful, but now sometimes wonder if treatment after excision.....

tuffenuff's picture
tuffenuff
Posts: 277
Joined: May 2012

i swear every time i see your posts i think your name says firstpotpie

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

Glad I don't eat pot pie - I'd get cravings every day.

fisrpotpe's picture
fisrpotpe
Posts: 1340
Joined: Aug 2010

i hated and always have hated pot pies since the first one my mother made me eat.... yuck that would have been 45 plus years ago.

i know many think much worse than pot pies when they see it

by the way fisrpotpe = forced into semi retirement put out to pasture early..... the company i worked for let me go after the second go round with cancer

like your tatoo's

john

Joesph
Posts: 7
Joined: Nov 2012

How did it go that is where Iam at and the Dr. honesty about all that can go wrong is scaring the hell out of me. They are going to cap off the caroid artary, but I get a test first to see If I can survive that. Also there's a nerve ending that controls my speech and swallowing them a name for it I've forgotten what it is that is also impacted is hoping within the next 30 days that the mass will go down further from the radiation and in so doing possibly pull away from the artery, but that doesn't sound too probable. I'm just hoping that it pulls away from the nerve so I am not going through speech therapy and learning how to swallow again. Does any of this sound familiar? 

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Four months today, BOT (base of tongue) SCC with mets to lymph nodes on both sides. T1N2cM0 (that's stage 4). One 3-cm lymph node removed from right neck, 38 rads and 3 rounds of high-dose cisplatin. Three month PET-CT scan showed no evidence of disease!

Deb xoxoxoxoxo

MGC
Posts: 8
Joined: May 2010

Finished up on May 13th (at Stanford same as D. Lewis, it's a wonder i didnt see her):-), 33 rads, 2 out of 3 nasty chemo's. Stage 3 or 4 SCC right Tonsil and BOT, Mets to one side only, several nodes. No Surgery. I live over 400 miles from Stanford and it was worth it. Plenty of side effects but that's collateral damage. I love this toppic and look forward to being here many many years from now posting how moany years it has been.
The power of Prayer.

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

We are now where you were 4 months ago. Husband diagnosed with BOT SCC (Stage IV) with 1 positive lymph node. He started chemo 4 days ago. We hope we can be celebrating by the first of the year. We hope you continue to be disease free!

SASH's picture
SASH
Posts: 283
Joined: Apr 2006

So far 10 years 4 months 11 days and counting of Stage 4 SCC of the tongue.

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

23 months survivor of Esthesionueroblastoma (Sinus Cancer).

godisgreat
Posts: 20
Joined: Feb 2011

That's Amazing!

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Almost 4 months since diagnosis. 3 rounds of Cisplatin/Gemzar. Clean PET scan 2 weeks ago. God is good; always.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Great to see so many with so many years! Double digits in years! Awesome!! Encouraging too.

5 months post treatment for me and doing better every day.

Positive thoughts to all!
Greg

friend of Bill
Posts: 87
Joined: Mar 2010

Right tonsil,one lymph node, surgery, chemo and rads - it's now been now 23 wonderful (but admittedly very trying at times) months since treatment ended.Thanks for the topic.

Vince

Friend of Bill 2
Posts: 1
Joined: Aug 2011

Thanks to everyone for posting. The stories of hope and recovery are amazing and really helps a lot.

Similar story here - I got the left side covered. Cancer found in Left tonsil, one lymph node tumor on left neck, Tonsils out 2 weeks ago, start chemo tomorrow: Cisplatin & Docetaxel treatment every 3 weeks, then radiation & Carboplatin. I understand that the treatment is brutal, (stuff we're used to).
Another friend of ours had the same thing and is cancer free for over 5 years! The miracles continue - trust there's a message in all this somewhere.

Hoping and praying for the best for everyone.
Keep in touch if you can/want.

http://philhascancer.org/
Thanks, Phil

Hondo's picture
Hondo
Posts: 5843
Joined: Apr 2009

Not sure if you and the other friend of Bill are relater but if not Welcome to CSN. Here you will find a lot of support and information.

Wishing you all the best
Hondo

charles55's picture
charles55
Posts: 87
Joined: Aug 2010

I have spent three plus years sticking my tongue out at cancer (which is where cancer found me).

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

6 months post treatment and feeling good.

Best to everyone,
Steve

rozaroo
Posts: 667
Joined: Apr 2010

I am 6 month's post treatment!

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Right Tonsil, SCC, STG III, HPV+ with a lymph node thrown into the mix....

Tonsillectomy, nine weeks of chemo (Cisplatin, Taxotere, 5FU (pumped)), then seven weeks concurrent chemo/rads, weekly Carboplatin, 35 daily rads with Amifostine injections...

All post CT, scopes and PET's have been clear and NED...hoping to have similar reports for the next 30 or 40 years... ;)

Best,
John

ljoy's picture
ljoy
Posts: 86
Joined: Dec 2007

Right Tonsil with 1 lymph node. Cisplatin, 5FU and 39 rads.

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

Sure is good to see those bigger numbers. Me, I was stage IV scc Base of Tongue (T2N2). Six months since treatment ended March 16; treatment was nine weeks of induction chemo (Cisplatin,Taxotere and 5-FU) followed by seven weeks of radiation with weekly chemo (Carboplatin). Scans are good (watching one node).

Fire34
Posts: 352
Joined: Feb 2010

3 years now. SCC of the right lymph nodes unknown primary. Clinical trial with Erbitux at U of Chicago. 8 weeks of induction chemo with Erbitux, Carboplatin & Taxol Then 5 alternating weeks of concurrent chemo/twice daily rads again with Erbitux,5FU & hydroxyurea.

Bunnymom
Posts: 101
Joined: Apr 2014

 

I just saw your post. I was diagnosed in August 2013 with tongue cancer after biopsy of a non-healing leison on my tongue. 

Sept 2013 had the lesion removed at U of Chicago. Margins all clear.  Oct 2013, neck resection to remove lymph nodes for biopsy all clean. January 2014, PET showed one lymph node (encapsulated). Had surgery to remove lymph node and submandibular gland. PET two weeks ago show tumor near the same site. 

 

I havent had radiation or chemo but that's coming next. After the surgery I will meet with Dr. Haraf, (radiology)  Dr. Villaflor (medical oncology). So, I have no idea what they will recommend or how this will go. 

I wanted to connect with you to see how you did with treatment and who your doctors were. Did you have proton beam radiology or IMRT? How did you do? What is your opinion of the hospital?

My surgeon is Dr. Langerman

 

thanks so much 

bunnymom

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

We are facing the exact same treatment you endured. Husband has stage IV SCC BOT cancer with 1 positive node. Your survival is an inspiration to us. Buzz had his first chemo on Monday and now is starting to feel awful.

connieprice1's picture
connieprice1
Posts: 299
Joined: Oct 2010

Make sure to give him Zofran as directed every 6-8 hrs. It is the best medicine for nausea.

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

My nurse told me to never wait for nausea, and to keep on a schedule for nausea meds, starting with as soon as I got home from chemo. I kept to my schedule, and only had a couple bouts of breakthrough nausea (I also got Emend with chemo).

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

ALWAYS try and stay ahead on your meds be they for nausea or pain.  Coming from behind makes fixing the situation much harder.

J.

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

It has been 3 months since I finished treatment for ssc of the hypopharnyx. Was pronounced NED on July 21.

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

I haven't even had my 1st post PET scan so I won't post myself yet! But this is why I like the oral cancer foundation web-site. This site tends to have alot of people 1 year or less. They have alot of survivor stories of 5 years or more :)! God Bless!!

Charles

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Alright Charles...you got your new little girl posted. Congrats, Abby is just adorable....

Best,
John

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

Sorry to get off topic but I just wanted to tell you Charles that I am sooooo jealous. Looking at Abby's picture brings back so many fond memories of when my boys were that age. Enjoy her, she will bring you hours of fun and the loving never stops. I miss the puppy kisses!!!

I just want to pick her up and hug her forever - she's beautiful!!!

Enjoy,
Glenna

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

Had SCC of nasal septum - still rocking on lol

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

I had Stage III SCC of the right tonsil, one lymph node involved. Had tonsillectomy, 30 rads and two rounds of Cisplatin, followed by a modified radical neck dissection three months after treatment ended. On Oct. 5 I celebrate the second anniversary of the last day of radiation.

--Jim in Delaware

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

month NPC Survivor, and it's been 17+-months since last rad. Oh yeah.

kcass

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Alright Jim, congrats 10/5 coming up....

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Heck of a guy, and another of the originals here....

Another that lost the battle...

Awesome guy, great reporter and writer.

~Gone not forgotten...

John

abbimom's picture
abbimom
Posts: 81
Joined: Sep 2010

I am 10 years post treatment. I had squamous cell carcinoma of the tongue and it metastisized to the lymphnodes in my neck.

JGE
Posts: 50
Joined: Mar 2009

Treatment ended Nov 15, 2008.

Starting to forget for longer periods of time. Nice.

:)

John

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

I love hearing from Sash, Abbimom, etc on the 5-10 years of cancer survivorship!!!!!
I had a very clean PET scan and my Oncologist says I am in remission and to enjoy life. Still can't eat everything but it is getting better every week-month. I can't wait to put up my 10 year post treatment note on this website in 2020!!!!!!Squamour cell of the tongue and it metastisized to lymphnodes in my neck too.......God bless all you long termers!!!See ya down the road.....
Steve

chark
Posts: 14
Joined: Jun 2010

Almost 3 months, Esthesioneuroblastoma.

At this point having trouble remembering what life was life before cancer took over my world. But I am taking it back and look forward to normal, or atleast normal for me.

This was a good idea.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I found my lump in my neck 10/9/08. Stage iv SCC, took out 23 lymph nodes and my salivary gland, 3 nodes bad. 30 rads no chemo. Last day of treatment 5/15/09.

abbimom's picture
abbimom
Posts: 81
Joined: Sep 2010

hey steve
I'm always amazed when I can say it has been 10 years. I was diagnosed when I was 21 years old. I had part of the tongue removed and the radical neck dissection and then radiation and chemo and I guess it worked. 6 months is awesome. It is nice because now sometimes I forget what it was like going through all of that. The eating will get better but mine is different. I find drinking milk when I eat helps me. Enjoy life and congrats!! And take great care of your teeth!!!!
Best wishes,
Linda

hjc1961
Posts: 8
Joined: Apr 2011

God Bless Linda!

you are a shining example and proof that their really is life after cancer!

Rock on!

dotty4577
Posts: 7
Joined: Sep 2011

My first post, just wanted to say how good it feels to have found this blog. I was diagnosed with AdCC 9/2010. Had removal or resection of the Hard pallet 1/11 and in 3/11 I had a 2nd surgery of removal of positive edges from my septum. Other lumps were found in my neck and on my thyroid, but, they were negative for malignancy. It has been almost five months since the surgeries and I have not recieved any rads. I am on my feet and even though i am being told to have rads. I don/t want to. I would like to hear some of your thoughts on taking this position. I am having a serious problem managing this orator/prostetic hard pallet,

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