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Joined: Aug 2010
Posts: 75
Supporting Member (50+ posts)
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Joined: Aug 2010
Posts: 75
I found a lot of very helpful information related to laryngectomy at this website http://www.webwhispers.org/. We have private insurance so can't help with Medicaid question. I will say that the first month or so adjusting was the most difficult from emotional standpoint but it does get easier so hang in there.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
Joined: Apr 2003
Posts: 122
gpk101 Offline OP
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Posts: 122
Thanks again, all! (and thank you, David for getting back to the issue) I'm still trying to work 8-5 and find I don't have a lot of energy or time but when I DO have a bit of time I'd rather spend it worthwhile. I'm finding that I am experiencing a low-grade sore throat for most of the day lately. Low-grade meaning to the average person it'd be about a "7" on a 1-10 scale) I'll be going to Winship Cancer Inst. (emory here in Atl) on Fri afternoon (pray for me?) and they'll probably suggest chemo (no more radiation is possible, I'm quite happy to know!)This is, I understand only a "temporary fix" as the larynx will eventually need to come out.
Should I expect the throat discomfort to continue until the chemo "kicks in" or is it to become my constant companion? What chemo is the best? (I'll obviously ask my new doc THAT one, too!) I don't mind the nausea but I'd like to continue to work for as long as possible (until very near the end, I hope!)
What is the recovery time for lymph node removal surgery (yeah-there's THAT issue also) but I figured just IT could be cut out and let chemo work on the larnyx area. How do I go about getting a second opinion from a GREAT doctor?
Okay, enough questions for the moment- if I don't get some answers with "meat" in 'em I'll probably re-post. Is that best? or just stay with this thread?
You guys are the experts here, and I'll do (most of) what you say. ;-)
PLEASE RESPOND IF YOU HAVE ANYTHING I NEED TO HEAR. EVEN IF I DON'T WANT TO HEAR IT!!!!
thanks again, EVERYONE and God bless. I need you guys. really


SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!

Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Gordon, I met a few people in California a couple weeks ago. They were all from the webwhispers website. Very nice group of people who all had cancer that changed their ability to speak. One woman used a microphone type thing on her throat to allow her to talk. The one man had a trach where he pushed on it to speak. Another man had a permanent trach that was put in under his skin. Im not quite sure how it worked but you couldnt tell he had any problem at all. So you see there is a positive life to be led after this procedure. If this procedure will save your life then it is worth doing. I wish you the best of luck with everything you are facing.



Barbara, nice to hear from you. I wish you well. Please dont be a stranger. I miss seeing your posts.


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: Aug 2010
Posts: 75
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Aug 2010
Posts: 75
My husband had a lot more work done than just neck dissection and laryngectomy so your recovery will be quite different I'm sure. Even so, he recovered fairly quickly.

I have a book that I found helpful "Looking Forward...The Speech and Swallowing Guidebook for People with Cancer of the Larnyx or Tongue". Send me a PM with your address and I'd be happy to send it to you. No need to return it.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: May 2002
Posts: 2,152
Gordon,
I posted a long response on your other string. Please read it. It answers several of your questions. And no, don't open another string when you don't get a response, that just confuses things. As I said before, there are not many members who have had this surgery, so don't expect a lot of responses on surgical questions.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Apr 2003
Posts: 122
gpk101 Offline OP
Senior Member (100+ posts)
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Joined: Apr 2003
Posts: 122
Thank you again, everyone. I know ultimately we go through this whole ball of wax alone, but it really helps to have people who WANT (as opposed to feel like they "have to") help in any way they can. I'm still very nervous/anxious/confused/uninformed but really want to be able to get on with my life asap after/(during?) chemo. In reading some other threads/topics I see how lucky I really am-some of you have/still are walking through FIRE and face unimaginable challenges just to function reasonably well day-to-day. I still have EXCELLENT health overall, eat like a horse, and am able to work (sometimes HARD work) for 8hrs/day 5-6days/wk. God is suddenly granting me many new opportunities, friends, insights and inspirations to replace my feelings of hurt and confusion over the fact that my family/friends have shown little to no interest in knowing what is/may be soon going on with me. (of course I'm dramatizing-a few have) Suddenly opening many new doors and opportunities in my life that I had no idea I would ever experience. I plan to make the most of this golden time-I will try-no, I WILL give back-to you folks and this board that really has helped me so much over the years, to my fellow man in general who is carrying his own unseen burdens and sometimes is grateful just for companionship and an interested ear, but mostly to the spirit of God within me-within us all-that wants and is enabling us to reach the most lofty goals imaginable.
thanks again-you guys really are my angels. I'll let you know how tomorrow's appt w/the new doc goes.
gordon


SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!

Joined: Apr 2003
Posts: 122
gpk101 Offline OP
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Apr 2003
Posts: 122
Well, the appointment went about as expected- it's more "spread out" than the surgeon feels confident in removing all-so I'll be starting chemo this week to try to shrink or at least stop new growth-they also did a chest CT, if that shows positive, I don't think surgery is the way to go-I've not seen anyone survive more than 6mos w/"it" in the lungs. Will find out more tomorrow....
I really have to hand it to you guys- the books that Gerri sent and the webwhispers site are phenominal! Your support is instumental to my continued health.
more later...
gordon


SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!

Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Hi Gordon - I'm sorry to read your latest news. I've had you in my thoughts and continue to send postive energy your way.

Dr. Itzhak Brook, who posts here, is a physician who if I don't miss my guess went through what you're facing. He's written a book about his experiences and even recently posted a news segment about himself that was extremely good and inspiring.

I recommend you look at some of his posts, under dribrook.

And keep us posted per usual.

Courage!
David


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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