Feedback from radiation done TWICE : (

Viilik70

I am 43 (and a man sorry no profile pic) and have gone through photon radiation at 25 for squamous cell carcinoma of the nasopharynx and then proton therapy for the same cancer at 39. I also went through chemo for hodgkins. I was wondering if anyone has had trouble with your soft pallet. Mine does not work now so I have to pinch my nose to drink or everything comes through my nose. I also talk funny because the pallet no longer works to shut the nasal passage, so I talk through my nose and one vocal cord is paralyzed and the other one barely moves. I also had a feeding tube and a trach but had them removed to feel half normal. I also had part of my jaw removed and a chest flap done which help the lympodema or however you spell it. I was. Just wondering if I'm the only one to go though thion long list of junk? Not looking for sympathy just feel like a Lone Ranger. I read some of of the other stories on the head and neck discussion board and they help and thank you to ALL that have written in because you are truly a gift from God for me! I've just always wondered if I went with the right treatment because I was not told all of thside effects from all this radiation because if I had I think I would have just went with surgery in Pittsburg PA! and took my chances! I've given up 95% of all food to dysphagia and can't talk normal and look like a freak with the chest flap on the side of my neck. I guess what is done is done and even God can't change the past. Just wondering what others feel about what they went through or other treatments they did for the same cancer. Thank you in advance for feedback and may God bless you : )

CivilMatt

rads once only

Viilik70,

It is stories like yours that make a dry mouth and lack of taste and saliva seem trivial.  There are lots of us here with some degree of side effects.  Some are as tough as yours and others not so much, but we all understand your position.  When everyone around me doesn’t understand something about the ramifications of H&N treatment, I find that many here do.

So I am glad you found this site (my wife found it for me) and hope you enjoy some of the banter back and forth.

Matt

Viilik70

CivilMatt said:

rads once only

Viilik70,

It is stories like yours that make a dry mouth and lack of taste and saliva seem trivial.  There are lots of us here with some degree of side effects.  Some are as tough as yours and others not so much, but we all understand your position.  When everyone around me doesn’t understand something about the ramifications of H&N treatment, I find that many here do.

So I am glad you found this site (my wife found it for me) and hope you enjoy some of the banter back and forth.

Matt

Thanks Matt for your input, I

Thanks Matt for your input, I just need to know from others their struggles and what they go through daily and maybe suggestions to make things easier. As with everyone that has gone through this, it is a long and bumpy road and a lot of soul searching. God saved my life for a reason and I'm trying to figure out why...

Tim6003

Viilik70 said:

Thanks Matt for your input, I

Thanks Matt for your input, I just need to know from others their struggles and what they go through daily and maybe suggestions to make things easier. As with everyone that has gone through this, it is a long and bumpy road and a lot of soul searching. God saved my life for a reason and I'm trying to figure out why...

Hi Viilik70 ..

Kind of what Matt said, you have been through it my fellow warrior....but where I am a private in this fight, you are a general based on  your experience.  I'm sorry you have had the run you had.  I stand in awe thinking about your post being so frank and honest, yet with a tone of compassion towards others ....makes me think you are one tough guy to be honest.

My cander dx came the same year I lost my dad adn brother!  Dad from acute Leukemia and my brother from a brain tumor / cancerous.  It's been a rough two years. 

I hope someone will come along who can relate and answer you questions, but know that I for one admire and thank you for sharing our post ....we all hope for no recurrence, but when I read posts such as yours I draw hope that if ever I do have a recurrence I can get through what Viilik70 did!

Whispered a prayer that you find some similar experiences and that peace is in your heart ...

Best,

Tim

Ladylacy

Radiation

While my husband's struggle isn't the same as yours.  He has been thru radiation twice in two years (70 rounds) first for laryngeal and then for cancer at the cervical of the esophagus.  I am surprised that you are able to breathe since you say one side of your vocal cord is paralyzed and the other barely moves.  When we at first thought the radiation and chemo got the tumor on his laryx, he started having trouble with breathing and when the ENT scoped him in the office he said one side of his vocal cords was paralyzed and that he needed to do another biopsy and a trach.  He had the trach for a month before they did the laryngectomy and now has a permanent stoma from which he breathes.  He also has a second feeding tube and will have it for life (he is terminal).

I have a friend, whose ex-husband has been thru something like you have.  The jaw bone removed and rebuild due to cancer.  I don't talk to her much but she does tell me he is not doing well.  But again he is in his late 70's like my husband and has been fighting this beast for over 5 years.

For such a young man you certainly have been thru a lot and I wish you the best.  Keep up the good fight.  Thoughts and prayers for you.

Sharon

Viilik70

Tim6003 said:

Hi Viilik70 ..

Kind of what Matt said, you have been through it my fellow warrior....but where I am a private in this fight, you are a general based on  your experience.  I'm sorry you have had the run you had.  I stand in awe thinking about your post being so frank and honest, yet with a tone of compassion towards others ....makes me think you are one tough guy to be honest.

My cander dx came the same year I lost my dad adn brother!  Dad from acute Leukemia and my brother from a brain tumor / cancerous.  It's been a rough two years. 

I hope someone will come along who can relate and answer you questions, but know that I for one admire and thank you for sharing our post ....we all hope for no recurrence, but when I read posts such as yours I draw hope that if ever I do have a recurrence I can get through what Viilik70 did!

Whispered a prayer that you find some similar experiences and that peace is in your heart ...

Best,

Tim

I'm very sorry for your loses

I'm very sorry for your loses because I cannot imagine losing so much At once! You have been through so much already, but remember they have gone to their permanent home of peace and rest and last but not least disease free! Thank God for the peace they must have because their fight is over. 

I will keep my chin up and charging forward...you do the same : )

Viilik70

Ladylacy said:

Radiation

While my husband's struggle isn't the same as yours.  He has been thru radiation twice in two years (70 rounds) first for laryngeal and then for cancer at the cervical of the esophagus.  I am surprised that you are able to breathe since you say one side of your vocal cord is paralyzed and the other barely moves.  When we at first thought the radiation and chemo got the tumor on his laryx, he started having trouble with breathing and when the ENT scoped him in the office he said one side of his vocal cords was paralyzed and that he needed to do another biopsy and a trach.  He had the trach for a month before they did the laryngectomy and now has a permanent stoma from which he breathes.  He also has a second feeding tube and will have it for life (he is terminal).

I have a friend, whose ex-husband has been thru something like you have.  The jaw bone removed and rebuild due to cancer.  I don't talk to her much but she does tell me he is not doing well.  But again he is in his late 70's like my husband and has been fighting this beast for over 5 years.

For such a young man you certainly have been thru a lot and I wish you the best.  Keep up the good fight.  Thoughts and prayers for you.

Sharon

Thank you so much for

Thank you so much for sharing. It helps so much just to hear from other people just so we don't feel so all alone in this struggle. It gives us encouragement and wisdom to move forward with : ) I will pray for you and your husband and know that the caregivers have the toughest job watching their loved ones be ravaged by such a brutal beast of a disease. May God bless you and strengthen you in this life.

hwt

Viilik70 said:

Thank you so much for

Thank you so much for sharing. It helps so much just to hear from other people just so we don't feel so all alone in this struggle. It gives us encouragement and wisdom to move forward with : ) I will pray for you and your husband and know that the caregivers have the toughest job watching their loved ones be ravaged by such a brutal beast of a disease. May God bless you and strengthen you in this life.

Viilik70

You have certainly had more than your share. From time to time I start to think "why?" but try to quickly push those thoughts away by putting my trust in God's plan for me. I had cancer of the lower jaw which was replaced with a fibula flap, hadn't heard of a chest flap before. Like you, my mind starts to wonder periodically about the what ifs and second guessing my choices. As quickly as the thoughts come, I try to dismiss them by telling myself it is water under the bridge that can't be changed so move forward and think of something more positive. My little mind games that work for me most of the time to ward off negative thoughts. You have endured so much at such a young age. Prayers coming your way.

God bless,

Candi 

Viilik70

hwt said:

Viilik70

You have certainly had more than your share. From time to time I start to think "why?" but try to quickly push those thoughts away by putting my trust in God's plan for me. I had cancer of the lower jaw which was replaced with a fibula flap, hadn't heard of a chest flap before. Like you, my mind starts to wonder periodically about the what ifs and second guessing my choices. As quickly as the thoughts come, I try to dismiss them by telling myself it is water under the bridge that can't be changed so move forward and think of something more positive. My little mind games that work for me most of the time to ward off negative thoughts. You have endured so much at such a young age. Prayers coming your way.

God bless,

Candi 

Thank you Candi and I too try

Thank you Candi and I too try to push the what if's out, but they are reocurring and sometimes get the best of me obviously. I'm trying to get my faith up to the mustard seed and place my cares on Crist because I can definitely not carry this load alone. I do need to focus on the future and take down that dreaded rear view mirror : ) I pray that I too look for what God has in plan for me because He obviously has more plans for me or I would have been gone a long time ago. It is a blessing and a curse, this cancer, but I know without it i would have lived my life like I didn't need Jesus in my life and now I see how many times He has rescued me and that I can no longer ignore Him. I am truly blessed and this is only temporary : ) thanks again and God bless and sorry for rambling on ; )

TracyLynn72

You're a warrior!

You are so brave for posting exactly how you feel!  It's funny, I called myself a freak show today.  My scars are down to my collar bone, I'm missing some teeth and now with my PEG, I walk hunched over. I lost 1/4 of my jaw and it's replaced with a metal plate.  I'm 40 and I feel like I'm about 90 most days.  I just finished rads last week so I also have the nice, bright red sunburn and I'm peeling.  People stare and I just smile at them.  God chose to heal me.  He has given me strength on days that I didn't want to get up, and He obviously has huge plans for me!  I had two surgeries and then the rads and even though I didn't want to do ANY of it, I knew I had to.  I'm sorry for what you've been through and for how you feel.  You aren't alone!  Hang tough...prayers are going up for you.  I don't know what I would do if I hadn't found this group!!  My husband tells me how beautiful I am often, and even though I know he's totally lying...he knows what to say to make me feel better  And I think he really thinks I am because I'm ALIVE  Everyone healed has been blessed beyond measure! 

CherieLW

What a soldier!

Keep marchin on!  I don't know many people who have struggled with cancer, but my dad is currently going through chemo and radiation.  I know some individuals in the past who have had problems, but with all the technology today... I think things have drastically improved.  Praying for you and wishing you the best.  I hate cancer, but love that people have been survinving it for years!

Hang in there! 

Viilik70

TracyLynn72 said:

You're a warrior!

You are so brave for posting exactly how you feel!  It's funny, I called myself a freak show today.  My scars are down to my collar bone, I'm missing some teeth and now with my PEG, I walk hunched over. I lost 1/4 of my jaw and it's replaced with a metal plate.  I'm 40 and I feel like I'm about 90 most days.  I just finished rads last week so I also have the nice, bright red sunburn and I'm peeling.  People stare and I just smile at them.  God chose to heal me.  He has given me strength on days that I didn't want to get up, and He obviously has huge plans for me!  I had two surgeries and then the rads and even though I didn't want to do ANY of it, I knew I had to.  I'm sorry for what you've been through and for how you feel.  You aren't alone!  Hang tough...prayers are going up for you.  I don't know what I would do if I hadn't found this group!!  My husband tells me how beautiful I am often, and even though I know he's totally lying...he knows what to say to make me feel better  And I think he really thinks I am because I'm ALIVE  Everyone healed has been blessed beyond measure! 

Thank you dear for your kind

Thank you dear for your kind words and I'm sorry for what you are going through, but in time you will look back and appreciate how far you've come. Just keep marking those treatments off and realize one less to go through each day. You sound like a very strong soul and you've got a great husband and I thank God for him and his support for you! I know if it wasn't for my wife's unconditional love I wouldn't have made it through! You will have such a great testimony after this is all done.  Keep your chin up and God bless!

Viilik70

CherieLW said:

What a soldier!

Keep marchin on!  I don't know many people who have struggled with cancer, but my dad is currently going through chemo and radiation.  I know some individuals in the past who have had problems, but with all the technology today... I think things have drastically improved.  Praying for you and wishing you the best.  I hate cancer, but love that people have been survinving it for years!

Hang in there! 

I will keep marching on and

I will keep marching on and thanks for your encouragement! Just be a cheerleader for dad and tell him you love him all the time because that's all us dads need to get us through! Thank you and God bless!

Duggie88

Viil

Just remember, all the struggles are worth it. It certainly beats the alternative. My voice has changed, my eating style has changed, and whewn you get right down to it I guess my whiole life has changed and at first I was pissed and wished I had my old self back. But my old self had cancer. My new self is without. Just my observation.

Good advice for Cherie...................cheer Dad on

Now I am trying to figure out what Matt meant by banter. Is that the name of some bait John uses when he goes fishing. LOL

Life is good

      Jeff

Viilik70

Duggie88 said:

Viil

Just remember, all the struggles are worth it. It certainly beats the alternative. My voice has changed, my eating style has changed, and whewn you get right down to it I guess my whiole life has changed and at first I was pissed and wished I had my old self back. But my old self had cancer. My new self is without. Just my observation.

Good advice for Cherie...................cheer Dad on

Now I am trying to figure out what Matt meant by banter. Is that the name of some bait John uses when he goes fishing. LOL

Life is good

      Jeff

Thanks Jeff and you are

Thanks Jeff and you are right! I just really miss doing all the things I took for granted. I just praise God I can still eat a little and drink pretty good. Some people put up with a lot more. I just need to get out of the feeling sorry for myself and move forward. This is the rest of our lives so I need to just be thankful for what I have which is a beautiful wife that loves me and 4 great kids that have given me such a will to fight and live! I just want them to feel that I didn't give up but that I was a fighter and love them with all that I have. Ok rambling again thank you again! You are a wise fellow : )

longtermsurvivor

You are not the lone ranger

My ability to eat is a little better than yours but not much.  Probably 80 percent liquid diet.  I had lots of problems swallowing without everything coming back out of my nose, but much of that has disappeared over the last year.  I don't know if that  represents improvement, or if I just learned to swallow differently.   Speaking of that, have you tried swallowing therapy to see if this can be improved?  I don't second guess my treatments, which  are pretty similar to yours.  I would be dead now without the second radiation, so I  have no  complaints.  I knew in general that the risks  of  second  radiation  were high, but they were not such that I chose to die rather than go through them.  In fact, when the radiotherapist ask if I wanted detailed informed consent (He phrased it, "do you want to hear the list of all the things that can go wrong with treatment?") I said "no, thanks."

I can see why you've had a change in body image with treatment.  Your head is on sideways  I am really very functional, considering what I've been through.  And it would be a waste of my time to speculate on what life would have been like without the rads.  BTW, there are others here who have been through rads twice.  Stick aroud and you'll meet them.

 

best to you.

 

Pat

KTeacher

longtermsurvivor said:

You are not the lone ranger

My ability to eat is a little better than yours but not much.  Probably 80 percent liquid diet.  I had lots of problems swallowing without everything coming back out of my nose, but much of that has disappeared over the last year.  I don't know if that  represents improvement, or if I just learned to swallow differently.   Speaking of that, have you tried swallowing therapy to see if this can be improved?  I don't second guess my treatments, which  are pretty similar to yours.  I would be dead now without the second radiation, so I  have no  complaints.  I knew in general that the risks  of  second  radiation  were high, but they were not such that I chose to die rather than go through them.  In fact, when the radiotherapist ask if I wanted detailed informed consent (He phrased it, "do you want to hear the list of all the things that can go wrong with treatment?") I said "no, thanks."

I can see why you've had a change in body image with treatment.  Your head is on sideways  I am really very functional, considering what I've been through.  And it would be a waste of my time to speculate on what life would have been like without the rads.  BTW, there are others here who have been through rads twice.  Stick aroud and you'll meet them.

 

best to you.

 

Pat

That would be me!

I'm a three timer, but this is not a contest!  One inch of my right upper lip was removed Aug. 2010 followed by radiation (thrush, burns, open sores in mouth), returned to work 2 months after treatment ended--lymph node Aug. 2011, neck dissection followed by radiation.  Burn baby burn!  Returned to work one month after treatment finished.  Fast forward to Nov. 2012, eye removed due to cancer going up nerve to optical nerve, followed by chemo and radiation.  Chemo was no picnic.  Either my age or three hits of rads--I am now retired, no way can I go back to work BUT I am able to enjoy my grandchildren growing (Sofia is standing on her own, she will be walking by the time we see her next month!) Twin 5 year old grandsons will be going to Kindergarten in Aug.  Dealing with eating issues but I can eat.  Sinus abcess in the middle of my last treatment is acting up again, will be calling doctor's offices as soon as they open today, snot is not supposed to be coming out of my incision site! 

Life is good, handle with Prayer!

CherieLW

Viilik70 said:

I will keep marching on and

I will keep marching on and thanks for your encouragement! Just be a cheerleader for dad and tell him you love him all the time because that's all us dads need to get us through! Thank you and God bless!

I sure will!  I call dad

I sure will!  I call dad every day that I don't get to see him to check on him and tell him I love him very much.  He has 3 of us girls, so he hears that a lot! Lol.  God bless you too Viilik.  Praying for you!  Hope things start looking up fast.  I'm sure things haven't been easy for you, but God has kept you going bc you are meant to beat all these obstacles!  Wishing you luck!

CherieLW

TracyLynn72 said:

You're a warrior!

You are so brave for posting exactly how you feel!  It's funny, I called myself a freak show today.  My scars are down to my collar bone, I'm missing some teeth and now with my PEG, I walk hunched over. I lost 1/4 of my jaw and it's replaced with a metal plate.  I'm 40 and I feel like I'm about 90 most days.  I just finished rads last week so I also have the nice, bright red sunburn and I'm peeling.  People stare and I just smile at them.  God chose to heal me.  He has given me strength on days that I didn't want to get up, and He obviously has huge plans for me!  I had two surgeries and then the rads and even though I didn't want to do ANY of it, I knew I had to.  I'm sorry for what you've been through and for how you feel.  You aren't alone!  Hang tough...prayers are going up for you.  I don't know what I would do if I hadn't found this group!!  My husband tells me how beautiful I am often, and even though I know he's totally lying...he knows what to say to make me feel better  And I think he really thinks I am because I'm ALIVE  Everyone healed has been blessed beyond measure! 

Tracy,
You have battle scars

Tracy,

You have battle scars but you are still beautiful! I'm looking at your pic and I think you are just gorgeous the way you are- metal plate, sunburn, and all!.  Considering what you have been through, the results could have been much worse! I'm glad you have a positive outlook on things because if others who are judgemental towards you ever had to walk in your shoes they would be singing a different tune real quick! I don't know you well, but you seem like such a beautiful person inside as well.

Prayers and well wishes!  Hope you feel better fast!  

TracyLynn72

CherieLW said:

Tracy,
You have battle scars

Tracy,

You have battle scars but you are still beautiful! I'm looking at your pic and I think you are just gorgeous the way you are- metal plate, sunburn, and all!.  Considering what you have been through, the results could have been much worse! I'm glad you have a positive outlook on things because if others who are judgemental towards you ever had to walk in your shoes they would be singing a different tune real quick! I don't know you well, but you seem like such a beautiful person inside as well.

Prayers and well wishes!  Hope you feel better fast!  

CherieLW

You are so sweet...you made me cry!!  I am used to the stares, glances and whispers.  I want to scream....I AM ALIVE!!  THAT is the most important thing to me!  All of y'all on here are AWESOME people!!  It's a family