| Joined: Apr 2013 Posts: 19 Member | OP Member Joined: Apr 2013 Posts: 19 | hi, I want to introduce myself, I am debbiejeanne and I survived laryengal cancer stage 3. I had 35 rad trmnts in 8/09. then the cancer returned in 2/12. was told couldn't have more rad and chemo would only shrink it but not kill it so I had to have a complete laryengectomy. it's not easy living with a laryengectomy. it has daily hassles which drive me nuts. i'm thankful to be alive tho so the hassles are doable. i'm wondering if there is anyone here who has also had a laryengecgomy. i'd like to know how you deal with it on a daily basis. any info will be greatly appreciated.
Last edited by debbiejeanne; 04-02-2013 08:50 PM.
laryngeal cancer in 8/09. 35 rad tremnts no surgery. Recurrence in 2/12. Complete laryngectomy. 10/12 pet scan, clean ned.
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hi debiejeanne, my husband Kris had a laryngectomy in March 2012. Feel free to PM me with any specific questions you have. Or you can ask here and I will share our experience with you and try to answer any questions you have. How do you communicate? Do you have a TEP valve? There is also a lot of information on www.webwhispers.org.Take care, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | debbie, welcome to OCF. Yes there are a few members who have had this procedure. I imagine its not easy living in your condition. But try your best to think of all the positives in your life. Best thing is you are still here. Its a difficult thing to adapt to the new normal when its a drastic change from the person you were pre-cancer.
Oral cancer caused me to become disfigured, I am missing half of my lower jaw and lost all of my teeth. I know Im very lucky to be alive and spend my time helping others. By helping other oral cancer patients it helps me to be productive and to give back.
I ave a few friends who use webwhisperers. From what they have told me its a good organization with several hundred members.
Best wishes! ChristineSCC 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 | | | | Joined: Apr 2013 Posts: 2 Member | Member Joined: Apr 2013 Posts: 2 | hi debbie, like you i am a new "larry" had mine 22nd november. i had a sore throat in may and ignored it. i am waiting for a tep valve to be fitted so i comunicate with a speech aid at the moment, which can be rustrating if there is background noise.
once i have my valve i will go back to work as my employer will create a job that i can do (very good firm) my biggest problem is my stamina, my hearts willing but my body's not. i soon know and suffer if i try to do to much.
i have got a portable nebulisa i can use that will help me when i do go back to work.
biggest and most annoying thing i have Found since becoming a larry is other people....I CANT SPEAK BUT I AM NOT DEAF,,,,,,STOPPPPP SHOUTING AT ME.
since my operation i have calmed down a lot. i dont get as stressed as i used to with other people and what they do.i have even stopped getting stressed at other drivers....lol
i finished my radiotheraphy a month ago and am able to do most things now, just not as quickly as i used to though. i've been driving since a week after coming out of hospital as my surgeon said as long as i have full neck movement it will fine. | | | | Joined: Apr 2013 Posts: 19 Member | OP Member Joined: Apr 2013 Posts: 19 | thank you for replying. I don't know how to send a pm. yes I have a voice prostethises. does your husband still have a lot of phlem? does he use his suction machine a lot? does he have trouble when he tries to talk, like nothing comes out?
Last edited by debbiejeanne; 04-03-2013 08:25 AM.
laryngeal cancer in 8/09. 35 rad tremnts no surgery. Recurrence in 2/12. Complete laryngectomy. 10/12 pet scan, clean ned.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Debbie - Here's how to send a PM (private message): Just look at the name to the left of the message. Click on it and a drop down link will appear and you can choose the one that says "Send a PM". So scroll up this page to Tammy's message and click to the left box where it says "tamvonk" and click and voil� you can choose "Send a PM" to her. When she replies and you open up the OCF support forum, there will be a little flashing indicator at the top of this page telling you that you have a message.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Apr 2013 Posts: 19 Member | OP Member Joined: Apr 2013 Posts: 19 |
laryngeal cancer in 8/09. 35 rad tremnts no surgery. Recurrence in 2/12. Complete laryngectomy. 10/12 pet scan, clean ned.
| | | | Joined: Apr 2013 Posts: 19 Member | OP Member Joined: Apr 2013 Posts: 19 | [size:17pt][/size]Christine, i'm so sorry you've had so much trouble. thank u for sharing ur story with me. I will pray for you to be and stay cancer free. cancer is no picnic for sure but at least we do survive. i'm like you I am thankful to be here. God bless, debbiejeanne
laryngeal cancer in 8/09. 35 rad tremnts no surgery. Recurrence in 2/12. Complete laryngectomy. 10/12 pet scan, clean ned.
| | | | Joined: Apr 2013 Posts: 19 Member | OP Member Joined: Apr 2013 Posts: 19 | dave, i'm glad you stress less....lol. especially the drivers, that's hard not to stress over...lol. i'm glad your company will create a position for you, that is really very good of them. not too many companies would do that, mine wouldn't. I have some questions for you about the lary. do you still have phlem and have to use the suction machine a lot? it was a year ago 2/28/13 since I got my lary and I still have a lot of phlem and have to use the suction machine quite a bit. like every 10-15 minutes. my tube also gets clogged up with gunk. I usually stay home all day everyday b/c I don't want to take the machine with me if I go somewhere. it has been over a year since my surgery and i'm just now starting to drive again. I've really missed it. my neck is still a little stiff but I can move it enuf to drive. well, thank you for replying and I will keep you in my prayers. God bless, debbiejeanne
laryngeal cancer in 8/09. 35 rad tremnts no surgery. Recurrence in 2/12. Complete laryngectomy. 10/12 pet scan, clean ned.
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hi, I have sent you a PM. Do you use a nebulizer at all. I would recommend this to you to help loosen the phlegm and make it easy to cough up. As we live on a fairly narrow island surrounded by water the humidity is high here which also is very important. I know many larys in the US use a humidifier in the home to maintain humidity around 55%. Yes, there are occasions when Kris is unable to make any sound. Usually this means that the speaking valve is blocked and needs to be cleaned. We clean the valve twice a day at least to keep it clear. I think that if you are able to keep your phlegm thinner by using a humidifier and nebulizing saline regularly , you will find that you can cough/clear the secretions yourself and will no longer need to suction them out. It is also very important to drink plenty of fluids each day as this too helps to keep the phlegm/mucous thin. I hope all this helps and you can soon leave the suction machine at home / leave the house without it Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
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