OPINIONS PLEASE

FaithLyons

Hello Everyone!
Happy 4th Of July, I hope your all enjoying it!

I have a few questions and I'm not sure where to begin.
My Dad has vocal chord cancer, and as of right now he is doing NON traditional treatments, and so far the cancer is NOT getting any worse. We just weren't comfortable with the surgery they wanted to do, and all the radiation/chemo, we are scared, and my Dad just doesn't think he can handle the traditional treatments.

So, I guess my first question would be this, what kind of treatments are you guys doing, and are they working for you?

I was trained to switch out his tracheostomy, and about a week ago, I could not get the new one back in, and my dad went into cardiac/respitory arrest, and was shipped to a bigger hospital, Thank YOu JESUS that he pulled through, and I guess my question is if anyone has a tracheostomy, Do you have a hard time getting your new one put back in?

Yet another question I have is do you have a hard time plugging your trach. and talking when your so swollen?

I would appreciate any information we can get, this is my dad's 3rd battle with cancer, but in a total different area so it is all so new to us, and yes we are scared but the one thing that we can hold onto is our Faith in JESUS... I have to tell you through all of this my Dad has had so much faith in me, cuz I didn't think I could do anything with the trach. and my Dad says You can do it, and he is very much my inspiration.

Happy 4th of July!

Thank you for taking the time to read this, its' greatly appreciated, I wanted to connect with someone that is going through the same thing my dad is going through, he doesn't know how to use a computer, so I told him I'd do it for him..

Love and prayers and blessings to all
thank you

Pam M

Bless Your Heart
Faith,

Sadly, I have no info I can share with you - well, I guess it's happily for me, since it means I have no trach experience, and was confident I could withstand chemo and radiation. I'm sure other folks who know what you're talking about will chime in soon.

How scary, for your dad to go into cardiac arrest like that. Glad he's in a bigger hospital now. Do well.

FaithLyons

Pam M said:

Bless Your Heart
Faith,

Sadly, I have no info I can share with you - well, I guess it's happily for me, since it means I have no trach experience, and was confident I could withstand chemo and radiation. I'm sure other folks who know what you're talking about will chime in soon.

How scary, for your dad to go into cardiac arrest like that. Glad he's in a bigger hospital now. Do well.

Thank U!
Thank U for responding, I greatly appreciate it...
My dad is home from the hospital now..
I hope your having a good fourth of July, and I am going to tell my Dad about everything I find out about on here, as I am sure he will be happy to hear anything...

Be Blessed,
your in my thoughts and prayers as well!

Skiffin16

DX & Treatment
I can't really contribute to your fathers treatment or Dx....I had Tonsil Cancer STGIII SCC HPV+...chemo, chemo/rads....

I do welcome you to the forum and more than likely someone will post experiences they had with related cancer as your father....

Stay positive, keep your fathers thoughts positive, and trust in faith, family and friends.

Thoughts & Prayers,
John

FaithLyons

Skiffin16 said:

DX & Treatment
I can't really contribute to your fathers treatment or Dx....I had Tonsil Cancer STGIII SCC HPV+...chemo, chemo/rads....

I do welcome you to the forum and more than likely someone will post experiences they had with related cancer as your father....

Stay positive, keep your fathers thoughts positive, and trust in faith, family and friends.

Thoughts & Prayers,
John

Thank U!
Thank U for welcoming me to the forum it has been a journey that neither one of us will forget!
Sorry, to hear that U had tonsil cancer, so how is it going now, are U doing ok?
That is what keeps us going is our Faith in GOD, and our positive attitudes, the days he is down I lift him up and the days I am down he lifts me up, we are kinda like Bonnie N Clyde in a sense
I hope all is going well for U and U also will be in our thoughts and prayers....

Prayers and Blessings
Faith

Skiffin16

FaithLyons said:

Thank U!
Thank U for welcoming me to the forum it has been a journey that neither one of us will forget!
Sorry, to hear that U had tonsil cancer, so how is it going now, are U doing ok?
That is what keeps us going is our Faith in GOD, and our positive attitudes, the days he is down I lift him up and the days I am down he lifts me up, we are kinda like Bonnie N Clyde in a sense
I hope all is going well for U and U also will be in our thoughts and prayers....

Prayers and Blessings
Faith

Thanks...
I'll let you know in a week or so....I have my two year post treatment PET scan this Wednesday the 6th...kind of nervous.

But so far everything has been good, clean and clear.

Best,
John

Hondo

Hi FaithLyons
I never had a tracheotomy installed so I don’t know much about it or how to properly care for it. I am glad to hear that your Dad is doing well and that the Cancer is not growing anymore. I too am a 3 time survivor of cancer; I hate the word cancer but love the people who are victims of it. Like your Dad it is faith that has lead me so far and I believe this faith will also lead me home to be with my Lord and friend Jesus.

Happy 4th to you too and please plan to stay and be part of the family.
Hondo

FaithLyons

Skiffin16 said:

Thanks...
I'll let you know in a week or so....I have my two year post treatment PET scan this Wednesday the 6th...kind of nervous.

But so far everything has been good, clean and clear.

Best,
John

Your Welcome!
Yes, Please do keep me posted, my prayers are with U as U go, I pray that everything turns out remarkable. I like talking to all of U, cause sometimes when your going through the fire ya feel like your the only one...


I'm praying for U!
Love in prayers
Faith

FaithLyons

Hondo said:

Hi FaithLyons
I never had a tracheotomy installed so I don’t know much about it or how to properly care for it. I am glad to hear that your Dad is doing well and that the Cancer is not growing anymore. I too am a 3 time survivor of cancer; I hate the word cancer but love the people who are victims of it. Like your Dad it is faith that has lead me so far and I believe this faith will also lead me home to be with my Lord and friend Jesus.

Happy 4th to you too and please plan to stay and be part of the family.
Hondo

Hey there :0)
I definately plan to stay and be a part of the family on here, thank U for welcoming me. I find it very beneficial!
My Dad's tracheostomy is not much fun @ all..
It all started kinda like with a hoarseness in his voice and would have a hard time talking and for I don't know how many years his family physician would tell him it was just a fungus on his throat and they would go in and scrap it and what not, and finally a visit to the ER last year gave him the results of having a growth, and then thats when we went to see and ENT and she had to do an emergency surgery, because he was only breathing through a pin hole, and thats when the trach was placed in, it makes me sad to watch him go through it, I try to encourage him in every way that I can, I must say that I am thankful that he can breath better, and how close we have gotten since, we always let the little things lighten our load...Thank U JESUS!
Sometimes we wonder if we're doing the right thing by doing alternative medicine, but we have prayed and asked GOD to direct us, and we beleive this is where we are at, so stepping out in faith...

I hate the word cancer 2...

so you are 3 time survivor to, How amazing! I am sure that once I tell my dad about U he will have lots of questions...

Prayers and Blessings
Keep the faith
faith

fisrpotpe

3 years
Welcome to a wonderful site and special place for support and information.

I have had a trach now for 3 years next week. First 6-9 months were the toughest time, takes time for you body to get used to it and also your mind to accept it. Not too many times now that I struggle with it.

I am not sure it makes a difference but before I share my experience I would like to know the name of the Trach to make sure ours are the same. I can say that over the years only once did my wife have a hard time putting in and after a short bit I had her start it and I worked it in very quickly. After doing it several times putting it back in becomes alot easier.

With what I know after all I been thru the problem talking may not be because of plugging the trach. I have what they call a speaking valve that connects to the trach. This allows air in and not out so you can speak. Even today and most of the time speaking for me is very hoarse and raspy. I might get one day a week for half day where speaking is the best and not challenging for others to hear and understand. After all this time most friends and family are used to it. Keep in mind I lost my voice almost totally when they first found my problem from radiation damage called congronecrosis and loss of one voice cord I had little or no voice. I am not a doctor but do understand if there is anything like swelling near the larynx it will be tough to speak with any strength or clarity.

Please share with me the Brand of trach and I would be more than happy with you on how we put it in.

Prayers for you and your father for wisdom and strength being sent your way. Without our Father above and positive attitude I would not be hear many years post treatment.

I look forward to your reply.
John

luv4lacrosse

WELCOME AND GLAD YOU ARE HERE
Hi, and glad you found us. I have no experience with a Trach Tube, but can understand all of your questions, concerns and fear as we have all been there.

I would at the very least get a second and or third opinion regarding the "conventional treatment" and then weigh that against your personal opinion. I personally have no experience with any of the alternative treatments and had 100% success with surgery, radiation and chemo.

Hang in there and keep asking questions. Things will make more sense with more information.

Best!!

Mike

FaithLyons

fisrpotpe said:

3 years
Welcome to a wonderful site and special place for support and information.

I have had a trach now for 3 years next week. First 6-9 months were the toughest time, takes time for you body to get used to it and also your mind to accept it. Not too many times now that I struggle with it.

I am not sure it makes a difference but before I share my experience I would like to know the name of the Trach to make sure ours are the same. I can say that over the years only once did my wife have a hard time putting in and after a short bit I had her start it and I worked it in very quickly. After doing it several times putting it back in becomes alot easier.

With what I know after all I been thru the problem talking may not be because of plugging the trach. I have what they call a speaking valve that connects to the trach. This allows air in and not out so you can speak. Even today and most of the time speaking for me is very hoarse and raspy. I might get one day a week for half day where speaking is the best and not challenging for others to hear and understand. After all this time most friends and family are used to it. Keep in mind I lost my voice almost totally when they first found my problem from radiation damage called congronecrosis and loss of one voice cord I had little or no voice. I am not a doctor but do understand if there is anything like swelling near the larynx it will be tough to speak with any strength or clarity.

Please share with me the Brand of trach and I would be more than happy with you on how we put it in.

Prayers for you and your father for wisdom and strength being sent your way. Without our Father above and positive attitude I would not be hear many years post treatment.

I look forward to your reply.
John

Thank U !
Thank U for responding, nice to finally talk to someone who has a Tracheostomy....

I can't tell U the name of the trach, but it is a size 8 and its plastic... The first time I ever changed it I had no complications @ all, but this last time no matter what I tried I couldn't get it in, and under normal cicumstances I was told U could breath for like a day or so without the trach before it closes, but in his case it was only like 10 minutes, I was so frustrated with myself for not being able to get it in! It scared me...

Alot of times I can read his lips and sometimes he uses a servox to speak with, we get by He does have the speaking valve to, but he says he can't breath with it on, he has alot of difficulty breathing, when he puts the valve or his filter on, or even when he wears his bandanna over it he still has a hard time breathing... I was wondering cuz he lives on a farm are U supposed to avoid dust and dirt, he really wants to do hey this year and I told him it prolly wouldn't be a very good idea, cuz he has such a hard time breathing with the filter on???

He does have alot of swelling, so I am sure that is why he has such a hard time talking.

Thank U so much for replying, it is greatly appreciated!

Prayers N hugs
Faith

fisrpotpe

FaithLyons said:

Thank U !
Thank U for responding, nice to finally talk to someone who has a Tracheostomy....

I can't tell U the name of the trach, but it is a size 8 and its plastic... The first time I ever changed it I had no complications @ all, but this last time no matter what I tried I couldn't get it in, and under normal cicumstances I was told U could breath for like a day or so without the trach before it closes, but in his case it was only like 10 minutes, I was so frustrated with myself for not being able to get it in! It scared me...

Alot of times I can read his lips and sometimes he uses a servox to speak with, we get by He does have the speaking valve to, but he says he can't breath with it on, he has alot of difficulty breathing, when he puts the valve or his filter on, or even when he wears his bandanna over it he still has a hard time breathing... I was wondering cuz he lives on a farm are U supposed to avoid dust and dirt, he really wants to do hey this year and I told him it prolly wouldn't be a very good idea, cuz he has such a hard time breathing with the filter on???

He does have alot of swelling, so I am sure that is why he has such a hard time talking.

Thank U so much for replying, it is greatly appreciated!

Prayers N hugs
Faith

questions
I have a few questions to understand your dad's status

- has he had his voice box removed?

- or does he just have a trach to try and help him breath?

- does his trach have what they call an inside canular?

I used to work construction and they told me no dust, having a trach is like having an open wound. If dust gets in, it will be a problem. I know my doc would not like it if I worked in dusty area. I have a light weight wrap for covering all the neck kinda like a scarf it wraps around three times, for when I cut a dusty grass. That makes we sweat alot and that help burning feeling at trach area.

I know it took me some time to get used to breathing with it but not long. How long has he had the trach.

I have not used a bandanna, the way i am is who I am so it does not matter to me what people think of it. So I have no idea if it restricts air flow or not.

I have a Shirley trach and a Passy-Muir speaking valve. Maybe you could take a picture of both and send them to me.

If your dads trach is like mine it has an inner tube filler that goes in trach when putting in. We were taught to put some KY Jelly on the tip to help when putting in. We have learned to lay on bed, try not to move or swallow, the installer to us has to move fast, pull out, clean skin and reinstall. ( granted they did not teach us to move fast, that is what helped us)

I have had the trach for so long I do not even use the trach pads. Skin is used to it now.

Your dad has to trust the trach and value to work and accept this is the way of life. Once he has confidence it works it will be easier for him. Not easy for sure and nobody likes change. I can say this has made my life better after going thru what I have.

Shortly after getting a trach if it us out for some time it will close up in 20 min. Now that I have had one for so long it would take a considerable amount of time to close up.

John

FaithLyons

fisrpotpe said:

questions
I have a few questions to understand your dad's status

- has he had his voice box removed?

- or does he just have a trach to try and help him breath?

- does his trach have what they call an inside canular?

I used to work construction and they told me no dust, having a trach is like having an open wound. If dust gets in, it will be a problem. I know my doc would not like it if I worked in dusty area. I have a light weight wrap for covering all the neck kinda like a scarf it wraps around three times, for when I cut a dusty grass. That makes we sweat alot and that help burning feeling at trach area.

I know it took me some time to get used to breathing with it but not long. How long has he had the trach.

I have not used a bandanna, the way i am is who I am so it does not matter to me what people think of it. So I have no idea if it restricts air flow or not.

I have a Shirley trach and a Passy-Muir speaking valve. Maybe you could take a picture of both and send them to me.

If your dads trach is like mine it has an inner tube filler that goes in trach when putting in. We were taught to put some KY Jelly on the tip to help when putting in. We have learned to lay on bed, try not to move or swallow, the installer to us has to move fast, pull out, clean skin and reinstall. ( granted they did not teach us to move fast, that is what helped us)

I have had the trach for so long I do not even use the trach pads. Skin is used to it now.

Your dad has to trust the trach and value to work and accept this is the way of life. Once he has confidence it works it will be easier for him. Not easy for sure and nobody likes change. I can say this has made my life better after going thru what I have.

Shortly after getting a trach if it us out for some time it will close up in 20 min. Now that I have had one for so long it would take a considerable amount of time to close up.

John

Still think it's awesome chatting with U!

My Dad just has the trach to help him breath, he doesnt' think he could handle any of the surgery or chemo/radiation at this time....Yup his trach has a inner canuala to, sounds almost just like yours I want to say its called a vortex trach, just sticks to my mind for some reason :0) It sounds just like yours to..They taught us about the KY jelly to.
He has had the trach since October of 2010.

I didn't think it would be a good idea for him to do hey this year, gets kinda dusty, and like U said it is kinda like an open wound! My dad does very good as far as getting around!

So if U don't mind me asking what type of treatment did U do? And do U still have your voicebox? Is the source of treatment working for U? I am so interested because we are still kinda in the decision making stages....and it makes it nice to talk to someone who is here with us!

Another question about your speaking valve, is it a one way valve? cuz thats' what my dad has and he has a horrible time trying to breath with it on...

My dad worries about what other people think of the trach, I told him not to worry about it, but it's easy for me to say cuz its not me, but I don't think I'd care what people think, he doesn't like the trach and I think its cuz it's sore, and he wanted me to ask U if U get alot of well lets' be honest phlem and all that with yours? Amd do U have to where a humidifier @ night to keep the secretions, thinner?

I know I will prolly have a thousand more questions for ya later, after I do some more brainstorming.....

Thank U! Your such a blessing
Faith