Previous Thread
Next Thread
Print Thread
Page 3 of 4 1 2 3 4
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
Hi Steve,
I guess I look at it this way...if you don't do it you won't be able to breathe soon much less speak. If you do it you know there is a CHANCE you will be able to speak again eventually, and breathing will continue. It is wonderful that you have a doc that wants to get right on it.
That being said, we have had the discussion several times that if a recurrence happens in our house and Kevin has to have the big surgery and never eat or drink again like Charm talks about, he might not do it. It is a personal decision and we are here for you no matter what you decide. There are folks like Charm Christine and Eric that are pounding the pavement and are truly our heros, but Kevin just doesn't know if he could be them. I have to accept that it's him living it, not me. Although you know I would be living every moment right by his side.
I don't know...keep us posted!!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
I was fortunate to have had my doc let me choose the date for my mandibulectomy. He told me it must be within the next 2 months or the cancer may not be able to be cured. I selected a date almost 2 months later to give myself time to prepare. Boy did I live it up during those 2 months. I also prepared to die and made all the necessary arrangements for my children in case that happened. It was the longest 2 months of my life. I will never forget being at the hospital at 5am with my son waiting for the surgery. I was laying there joking, I even had photos taken after the doctors signed my face and neck. I made sure if I didnt come out of it he would always remember it was what I wanted to do to try to survive. I never wanted my children to ever feel any remorse for my choice of having the surgery. It was one of the hardest things Ive ever had to do staying cheerful and optimistic in front of my son while I was scared to death that I wasnt going to ever see my son again. The 2 months also gave me way too much time to worry which wasnt a good thing.

If you choose the surgery today, I wish you all the very best with everything!!!! I will wait to see your posts. Thinking of you today!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Feb 2011
Posts: 45
hurlock Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Feb 2011
Posts: 45
Christine and all, thank you for your thoughts and prayers. I have surgery at 2 this afternoon. Seems this tumor is growing rather quick. I have maybe 25% airway left and the plan is to try to remove most of the tumor today. I have a very short neck and the tumor is tough to get to. The doctor will try a supracricoid larygectomy which may give me some voice. I've watched the visual on You Tube and seen the results from a man speaking.Knowing what I have is reality,not knowing the future and the results are in Gods hands and the surgeon. I fell blessed to have found this site and all the positive energy provided by everyone.Am I scarred to death,yes....
Am I ready to move forward and try to beat this.....yes. Steve Hurlock


SCC of larynx,2/1/2011 surgery 16 times to remove papilloma on vocal cords,started TOMO rad treatment 4/11.2011 T2N0M0 possible invasion onto cartilage tissue Cancer back 6/2012. Polyp removed Came back spindle cell carcenoma 6/22/12
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
You will get through it... god bless and saying a prayer for you.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
Yay Steve. I know you won't see this for awhile...but great decision. Hope all goes well and you kick this thing in the butt.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Hi, Steve.

I'm just reading all of the posts on this thread. I hope you are resting comfortably as I type this. I think you made the right decision to fight. There are many people here rooting for you. Your life will be worth living!

My father lost his vision completely, due to diabetes. I was very young when this all happened, but I do remember times when my father had sight. He was completely blind by the time he was in his mid-to-late 30s. I can only try to imagine how incredibly hard it was for him and the rest of the family. He was a skilled printer by trade and loved cars and working with his hands. He lived a fulfilling life for many years after he lost his sight. It wasn't easy, but he enjoyed his family and friends. He had to leave his career as a printer, but he was able to work. It wasn't what he was doing for work that mattered, but he got out of the house and socialized with people and made friends.

I am confident that you will find your own way. I wish and hope that you can look forward to a cure and go on living with your new normal. Best wishes for a full and speedy recovery. Please keep us posted as you are able.

With great care,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: May 2012
Posts: 114
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: May 2012
Posts: 114
Good luck, Steve! Thinking of you and sending positive healing thoughts. We'll all be here waiting for you...


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
Joined: Feb 2011
Posts: 45
hurlock Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Feb 2011
Posts: 45
Well its done. I went to the hospital the 27th to have the polyp removed and come back in a coup;e of weeks to get the supracricoid larymectomy. The surgery was later at 3 in the afternoon and my wife and kids and grandkids were there. I asked my family if they thought I should go ahead with the major surgery now since I know worrying the next two weeks would have put me in the same spot anyway. The Doctor finally came in at 4. We discussed all the options and I asked him if he would be able to do the 4 hour operation so late in the day. He said he was ready if I was. WE did the operation on the 27th. I just got out of the hospital friday the 6th of July.I have the trac in currently This is a tough operation and really has wiped me out.
I live at 9,000 feet and so I have O2 equipment home with vaporizer. The reasons I love the mountains has unfortunately now become a curse. My resting pulse ox at this elevation is in the mid 80s with out the supplemental equipment. I can get to 93 with the oxygen. I have 4 levels so I have tanks and equipment on every level..I failed the first swallow test at the hospital so I go in Mon for a check up and see a swallow therapist.Currently Im tube feeding through the nose to stomach. Hopefully this won't be in very long.
This is quite a journey and i don't think i could have made it without all the support from everyone here. I'll stay posted Steve Hurlock


SCC of larynx,2/1/2011 surgery 16 times to remove papilloma on vocal cords,started TOMO rad treatment 4/11.2011 T2N0M0 possible invasion onto cartilage tissue Cancer back 6/2012. Polyp removed Came back spindle cell carcenoma 6/22/12
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Keep us posted.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Hi, Steve.

I'm sorry this has been such a tough journey for you. There are a lot of hurdles that you have to jump, but it seems like you have an excellent support system.

I wish for you a speedy recovery and that you are able to get those O2 sats up so that you start to feel better. Besides the major surgery, low oxygen saturation will make you exhausted on its own.

Take good care,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Page 3 of 4 1 2 3 4

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5