larynx cancer

srshults

is there any body out there that has larynx cancer like I do? If you do please let me know so we will not be alone. I know some of the problem we go through and maybe I could help or you could help me. It is a diffucult life that others do not understand, but together we can help each other out.

a friend
steve

Hondo

Hi Steve


I am NPC but would just like to welcome you here to CSN, there are some others here with this type of cancer so I will let them answer you questions.

Take care

dennis318

Welcome
I have about as close to larynx as you can come too, i started out June 2009, and had 2 wrong diagnosis, one wrongful surgery and finally a tumor on top of my larnyx was found. that was back in October, I've gone threw Chemo and radiation and my cancer was was finally killed by radiation. Tomorrow is when i go back to Dr. to procede of what we will do, My L/S of my Larnyx quit working, and my voice was fading fast. I have had a trach put in recently which is a pain in the #@&^%. Cancer is one disease that keeps you guessing, you fight or it licks you....I may look like a broom handle, but I'm still here, there are days I would love to give up and say screw it, I cry, look at a person that once was, losing 60lbs, was a feat in itself, I pop pain meds to get the food down, and get nutrients to my body, Ensure, your throat feels the least bit better, drink the hell out of it to get it in, Cream of Wheat, she's my morning companion, i have plenty of trashcans, spitcups, rags, toilet paper, these are the necessasities for the day, going to the supermarket, pretend your drinking a cup of coffee, in reality, spit cup, I'm waiting for someone to say something to me, after about 4-5 loads of laundry, this includes the trach leaking, the phlem slinging, i wear a bandana to hide my trach that was installed, so I keep those handy at all times, the say water is fantastic for the phlem, I wish they would put something on the market to dry it up, or get rid of if, I empty every morning from a 4-5 hours sleep, this has improved, it was less sleep before. I tried to cram as much as i could, sorry if it didn't help, you've come to a wonderful site, where there are days you could scream, or need a ear to chew on, Welcome aboard, and get ready for the different kind of trip called cancer! Dennis,

Glenna M

Laryngeal cancer
Hi Steve, I was diagnosed in May '09 (wow it's my 1st anniversary ;-) with NSCLC in my left lung. After many tests and a PET scan they discovered that I also had SCC T3 N0 M0 of the larynx. Was told both cancers were inoperable so they started me on chemo (cisplatin) and radiation - 35 sessions. I survived all of that so they did Stereotactic Radiosurgery for the lung cancer. I am now 7 months post treatment and have had 2 scans done, both show the cancers are shrinking and I am now in remission. My last scan showed the tumor in my lung had shrunk to the point that they can't find it now. My radiologist said if it's still in my lung it is so small that it is hiding behind scar tissue.

I still see my ENT every month for the scope and will have to continue seeing him monthly for a year, then it will be every 2 months for another year. Of the 2 cancers I have the larynx cancer was the most advanced, I had lost my voice almost completely but it returned within a week or two after starting treatment. LOL - my oncologist said it was the power of his chemo that caused it to return, he wasn't giving any credit to the radiation ;-)

Are you done with treatment? What stage was yours and what was your treatment protocol. It will be interesting to chat with someone who has laryngeal cancer as I haven't met too many others with the same type as mine. It's not a rare cancer, I just haven't read too many posts on this particular type.

The road was long and hard, uphill all the way, but I would go through it all again if necessary as the results were much better than I had ever imagined they would be.

Post again and let me know how you are doing.

Glenna

denistd

Glenna M said:

Laryngeal cancer
Hi Steve, I was diagnosed in May '09 (wow it's my 1st anniversary ;-) with NSCLC in my left lung. After many tests and a PET scan they discovered that I also had SCC T3 N0 M0 of the larynx. Was told both cancers were inoperable so they started me on chemo (cisplatin) and radiation - 35 sessions. I survived all of that so they did Stereotactic Radiosurgery for the lung cancer. I am now 7 months post treatment and have had 2 scans done, both show the cancers are shrinking and I am now in remission. My last scan showed the tumor in my lung had shrunk to the point that they can't find it now. My radiologist said if it's still in my lung it is so small that it is hiding behind scar tissue.

I still see my ENT every month for the scope and will have to continue seeing him monthly for a year, then it will be every 2 months for another year. Of the 2 cancers I have the larynx cancer was the most advanced, I had lost my voice almost completely but it returned within a week or two after starting treatment. LOL - my oncologist said it was the power of his chemo that caused it to return, he wasn't giving any credit to the radiation ;-)

Are you done with treatment? What stage was yours and what was your treatment protocol. It will be interesting to chat with someone who has laryngeal cancer as I haven't met too many others with the same type as mine. It's not a rare cancer, I just haven't read too many posts on this particular type.

The road was long and hard, uphill all the way, but I would go through it all again if necessary as the results were much better than I had ever imagined they would be.

Post again and let me know how you are doing.

Glenna

Laryngeal cancer
Hi Steve and Glenna. I was diagnosed April 2009 with laryngeal cancer Stage 3, the doctors told me that the tumor was somewhat small and recommended radiation and 3 rounds of Cistplatin chemo. I started treatment on April 29 2009, I believe. I had 35 radiation treatments. My voice was almost gone when I started, but came back somewhat within a couple of weeks and then went away completely in the last two weeks of rads, the last two weeks of my radiation treatment were reduced to only 7 angles as opposed to the 13 I had in the first 5 weeks, they step up the intensity and become very site specific during the last 2 weeks. I never got sick from the chemo, the radiation was tough but doable. I regained my voice in full (about 95%) within a couple of weeks after treatments ceased. I was lucky, I believe I had a great team (Penn State Hershey Med) who kept me focused and made sure I followed all protocols, neck creaming, mouth wash, gargle, eating, staying hydrated etc. I lost no weight during treatment (had peg) but dropped 20 lbs after peg came out, I am now back to my original weight of 166lbs. Tomorrow I have a videostrobe and appointment with ENT, I am checked by the Ent every 2 months, had ct scans and MRI's in February of this year with everything OK. I have a pet scheduled for September 20. Let us know at what stage you are in the treatment. Denis

junklady

dennis318 said:

Welcome
I have about as close to larynx as you can come too, i started out June 2009, and had 2 wrong diagnosis, one wrongful surgery and finally a tumor on top of my larnyx was found. that was back in October, I've gone threw Chemo and radiation and my cancer was was finally killed by radiation. Tomorrow is when i go back to Dr. to procede of what we will do, My L/S of my Larnyx quit working, and my voice was fading fast. I have had a trach put in recently which is a pain in the #@&^%. Cancer is one disease that keeps you guessing, you fight or it licks you....I may look like a broom handle, but I'm still here, there are days I would love to give up and say screw it, I cry, look at a person that once was, losing 60lbs, was a feat in itself, I pop pain meds to get the food down, and get nutrients to my body, Ensure, your throat feels the least bit better, drink the hell out of it to get it in, Cream of Wheat, she's my morning companion, i have plenty of trashcans, spitcups, rags, toilet paper, these are the necessasities for the day, going to the supermarket, pretend your drinking a cup of coffee, in reality, spit cup, I'm waiting for someone to say something to me, after about 4-5 loads of laundry, this includes the trach leaking, the phlem slinging, i wear a bandana to hide my trach that was installed, so I keep those handy at all times, the say water is fantastic for the phlem, I wish they would put something on the market to dry it up, or get rid of if, I empty every morning from a 4-5 hours sleep, this has improved, it was less sleep before. I tried to cram as much as i could, sorry if it didn't help, you've come to a wonderful site, where there are days you could scream, or need a ear to chew on, Welcome aboard, and get ready for the different kind of trip called cancer! Dennis,

laryngeal Cancer too
My husband has end stage laryngeal cancer. He had 7 weeks of radiation 2 years ago. The cancer came back in June 2009. Radiation again was not an option. The Dr. wanted to do radical laryngectomy with only a 50/50 chance of survival. My husband said no way, rather have quality of life. He had a trach put in Sept. 2009 to help with breathing. I know what you mean about the constant mucus, pain in the behind. Very frustrating for him, he hates it. Do you use a suction machine? Constant leakage. He is still eating and drinking, an has not lost any weight. He does sleep a lot of the time. He uses a nebulizer at night for humidity. He is taking hydrocodone daily now for pain. Not exactly sure how much pain he is in. He is the type of man not to discuss anything. This just drives me crazy and breaks my heart. The whole idea of not knowing causes me to cry at random times. This caregiver job is the hardest, as many on this site have mentioned. You're life as you once knew it gone, you just live in limbo. I just wanted to add my story and vent a little. Hope we can stay in touch.

denistd

denistd said:

Laryngeal cancer
Hi Steve and Glenna. I was diagnosed April 2009 with laryngeal cancer Stage 3, the doctors told me that the tumor was somewhat small and recommended radiation and 3 rounds of Cistplatin chemo. I started treatment on April 29 2009, I believe. I had 35 radiation treatments. My voice was almost gone when I started, but came back somewhat within a couple of weeks and then went away completely in the last two weeks of rads, the last two weeks of my radiation treatment were reduced to only 7 angles as opposed to the 13 I had in the first 5 weeks, they step up the intensity and become very site specific during the last 2 weeks. I never got sick from the chemo, the radiation was tough but doable. I regained my voice in full (about 95%) within a couple of weeks after treatments ceased. I was lucky, I believe I had a great team (Penn State Hershey Med) who kept me focused and made sure I followed all protocols, neck creaming, mouth wash, gargle, eating, staying hydrated etc. I lost no weight during treatment (had peg) but dropped 20 lbs after peg came out, I am now back to my original weight of 166lbs. Tomorrow I have a videostrobe and appointment with ENT, I am checked by the Ent every 2 months, had ct scans and MRI's in February of this year with everything OK. I have a pet scheduled for September 20. Let us know at what stage you are in the treatment. Denis

laryngeal cancer
had an appointment with the videostrobe tech today and the ENT. He came in and looked at video with me and a couple of other people, don't know who they were but they were wearing white coats, he said the strobe looked absolutely normal, all signs of distress (his words) were long gone and he does not need to see me until after my pet scan in September. I said there were a couple of after effects, teeth, minor tinnitus and hearing loss, the audiologist had said the tinnitus and hearing loss were probably caused more by my standing in front of a bass amp for forty years, but tinnitus and hearing loss were consistent with Cistplatin. The teeth problems are definitely a result of radiation and I might lose the bottom row. Denis