Swallowing worsen after 12 yrs

aisha

Hi I am a cancer survivor after 12 yrs. I had nashrygeal cancer I. 2002, had radiation, chemo and neck surgery. Had feeding tube during my treatment and had it remove few months after. the side affect from all this treatment was dry mouth but i managed to have  food by mouth. Only food I can eat was anything with sauce. I can open my mouth as wide as 11/2 ins. My biggest mistake was not following up with speech/swallow therapy which was suggested at the beginning of my treatment. I was so worried about my treatment, that I was not thinking about speech therapy.

The last couple of years I started to have a hard time swallowing. Went to a speech/swallow therapy and she did an electrode therapy. That does not help and I started to lose my voice after. Don't know if that treatment cause my lost voice. By then my swallowing started to get worst. Doctor suggested to have a feeding tube as I have started to lose weight. Now I am on feeding tube full time and even my medication goes through the tube. I am still doing swallow exercise and with a little hope that it migh help. It is frustrating. Everything revolved around food and it is tough when you go out with friends or family. I do get depressed at times. 

I am open to any suggestion. Thanks. 

P.S. For those who are newly diagnosed with head and neck cancer....please follow up with speech/swallow therapy and do the exercise as recommended. 

fishmanpa

I hear that!

Hi aisha,

I'm 15 months post and while I can eat, my swallow has been compromised. I do my exercises but admittingly not as much as I should. They're posted in the Superthread. Those exercises are difficult even for someone who hasn't had sugeries and radiation! Even with work, I still have difficulty with certain foods.

I'm sorry to hear of your difficulty as it's a fear I have. That being said, a 12 year survivor? Wow! I'll take that and lose my swallow eventually. Keep working at it and don't give up hope. You're proof that odds can be beaten!

Positive thoughts and prayers

"T"

 

Hondo

Hi Aisha

            We must have been going through treatment at the same time. My first NPC treatment was also in 2002, I had a second in 2004 and it came back again in 2006. I never treated it in 2006 because I was only giving 12 months to live and that was with more chemo, but I am still here. About 2 ½ years ago I too started having problems swallowing and ended up in the hospital with Pneumonia. In the end had to get a PEG tube, lost my voice and worse my ENT found a hole in my upper palate that is growing. All in all I feel OK and I work full time as a Maintenance Manager every day. I do have to take pain meds but that is life. I would like to know more about you and how you are doing.

Thank you for sharing

Tim Hondo

debbiejeanne

my last rad tx was 10/22/09. 

my last rad tx was 10/22/09.  i still have trouble swallowing also.  i have to cut all pills in half no matter how small.  it takes me a very long time to eat as i have to chew, chew, chew and then chew some more....lol.  i've had my throat stretched several times and i'm told i will have to do that forever.  the last time was 6/27/14 and i was told then that the time could come when i would no longer be able to swallow and have to rely on a feeding tube.  i haven't really given that much thought but knowing there are a few here who use the tube is discouraging.  i'm sorry you are having this problem.  i know how important eating is to our social life.  i pray that the exercises will help you and you are able to swallow and eat again.  please let us know what works for you.

God bless you,

dj

amr2662

Same story

Hi Aisha,

I too had NPC (Stage 4) and after 13 years (3 years ago) started have difficulty swallowing and needed a feeding tube.  I also have speech issues and issues with blood pressure fluctuations.   I also have nerve damage to muscles in my shoulders and neck.   All of these symptoms have developed years after treatment ended.    I was able to eat  and speak normally for many years after treatment.   I don't think that your difficulties swallowing now had anything to do with not following up with speech therapy years ago.    My neurologist has said that it is most likely progressive damage to the cranial nerves and tissue damage from the radiation.   I have noticed several people on this forum and others that have been treated for NPC and had similar problems years later.  

I understand your frustration with social situations.  I do still go out with friends and family, but when you can't eat and it is difficult to speak it can be a struggle.

Just know that you are not alone,

Meredith

 

thennies61

amr2662 said:

Same story

Hi Aisha,

I too had NPC (Stage 4) and after 13 years (3 years ago) started have difficulty swallowing and needed a feeding tube.  I also have speech issues and issues with blood pressure fluctuations.   I also have nerve damage to muscles in my shoulders and neck.   All of these symptoms have developed years after treatment ended.    I was able to eat  and speak normally for many years after treatment.   I don't think that your difficulties swallowing now had anything to do with not following up with speech therapy years ago.    My neurologist has said that it is most likely progressive damage to the cranial nerves and tissue damage from the radiation.   I have noticed several people on this forum and others that have been treated for NPC and had similar problems years later.  

I understand your frustration with social situations.  I do still go out with friends and family, but when you can't eat and it is difficult to speak it can be a struggle.

Just know that you are not alone,

Meredith

 

When I got ready for

When I got ready for treatments was asked about speach/swallowing and went for it figuring it was another to get better.During rads she did hook me up to those elctrobs.The main reason she said was to help stop any scare from becoming hard as the rads have that effect.I also had peg tube in but as we went along and was eating more she said not to use it.My surgen said the same thing but he hasn't taken it out yet.He wants to wait till the pet scan next week.I can anything that I want as long as I can gum it.My speach needs work as some letters take harder to form.When the bone in the jaw become harder we are going for teeth.She said when I get them my speach and eating will greatly improve.She was very big on swallowing either food or liquid to help with any scarring that might happen.She also had me go to a massage specialist which helped alot.He has said the swelling I have is more soft scare tissue then anything else.

aisha

Thank you.

Hi Everyone,

Thank you for your thoughts and encouragement. I am hanging in there and trying to deal with it. Always open for new suggestions.

@Hondo, here is my story.

On 2002 when I had Nasophryngeal cancer, I had 37 radiation treatments and only 2 Chemo. Doc suggested feeding tube, knowing that soon I am unable to eat. On my last day of radiation, I collapsed due to being dehydrated. Because of that they did not continued with my chemo.  Few months later, I had surgery to removed the lump on my neck. Like everyone else, I have dry mouth, stiffed neck and limited to the type of food I can eat. A year later, I was fortunate to be able to eat by mouth as long as there is a lot of sauce on it. And life goes on. Just have to adjust to the eating habit, small mouth opening, regular dentist visits...etc.

in 2009, I have my first heart attack. Survived that and then 2012 I started to lose my voice and beginning to have a hard time swallowing. Finally got Jaw Dynasplint. Saw ENT and was told I had scarring near my vocal cord. To wait and see in few months time. A month later early 2013 I had another heart attack.  After recovering from my heart attack, I am beginning to totally lose my voice. Saw my ENT, my vocal cord was getting worst that I needed a surgery. They had to use a pediatric surgical equipment to do the surgery. Surgery went well, voice came back but slurring and unclear. My swallowing got worst, losing too much weight and was advised to have a feeding tube.  I still tried to eat by mouth but most of it I ending up spitting it out. Just thrilled to get to taste it. 2013 was not the year for me. 

My swallowing has not improved and was getting worst. My ENT suggested to see a neurologist. I was prescribed a new meds for my vocal cord spasm. Suggested speech/swallow therapy again. So now they told me that my Epiglottis is not working. They gave me exercise and hopefully the muscle might improve. I still use Jaw Dynasplint. i hope the exercise will help and maybe someone out there may have a suggestion or advise. It is frustrating  and can be depressing at time, but I am trying my best to stay positive. I am blessed to have great support from my husband. 

 

Hondo

aisha said:

Thank you.

Hi Everyone,

Thank you for your thoughts and encouragement. I am hanging in there and trying to deal with it. Always open for new suggestions.

@Hondo, here is my story.

On 2002 when I had Nasophryngeal cancer, I had 37 radiation treatments and only 2 Chemo. Doc suggested feeding tube, knowing that soon I am unable to eat. On my last day of radiation, I collapsed due to being dehydrated. Because of that they did not continued with my chemo.  Few months later, I had surgery to removed the lump on my neck. Like everyone else, I have dry mouth, stiffed neck and limited to the type of food I can eat. A year later, I was fortunate to be able to eat by mouth as long as there is a lot of sauce on it. And life goes on. Just have to adjust to the eating habit, small mouth opening, regular dentist visits...etc.

in 2009, I have my first heart attack. Survived that and then 2012 I started to lose my voice and beginning to have a hard time swallowing. Finally got Jaw Dynasplint. Saw ENT and was told I had scarring near my vocal cord. To wait and see in few months time. A month later early 2013 I had another heart attack.  After recovering from my heart attack, I am beginning to totally lose my voice. Saw my ENT, my vocal cord was getting worst that I needed a surgery. They had to use a pediatric surgical equipment to do the surgery. Surgery went well, voice came back but slurring and unclear. My swallowing got worst, losing too much weight and was advised to have a feeding tube.  I still tried to eat by mouth but most of it I ending up spitting it out. Just thrilled to get to taste it. 2013 was not the year for me. 

My swallowing has not improved and was getting worst. My ENT suggested to see a neurologist. I was prescribed a new meds for my vocal cord spasm. Suggested speech/swallow therapy again. So now they told me that my Epiglottis is not working. They gave me exercise and hopefully the muscle might improve. I still use Jaw Dynasplint. i hope the exercise will help and maybe someone out there may have a suggestion or advise. It is frustrating  and can be depressing at time, but I am trying my best to stay positive. I am blessed to have great support from my husband. 

 

Hi Aisha

Wow you are an amazing Woman, the very fact you are still alive if mystery in itself. I too have been to Hell a few times and back again, guess it is all a part of the treatment. Like you my Wife has been my back bone in all of this, she never left my side but was there to hold me up when I could stand by myself, God has blessed me with a wonderful helpmate. Also I got a lot of support from my family & children especially my oldest daughter who does all my research, I would not be here if it was not for my daughter research. So I am truly blessed and have a very strong faith in God who has prepared the way before me.

I don’t hope you plan to stay as I feel you have a lot that you can contribute to other here on CSN

Tim Hondo  

aisha

Hondo said:

Hi Aisha

Wow you are an amazing Woman, the very fact you are still alive if mystery in itself. I too have been to Hell a few times and back again, guess it is all a part of the treatment. Like you my Wife has been my back bone in all of this, she never left my side but was there to hold me up when I could stand by myself, God has blessed me with a wonderful helpmate. Also I got a lot of support from my family & children especially my oldest daughter who does all my research, I would not be here if it was not for my daughter research. So I am truly blessed and have a very strong faith in God who has prepared the way before me.

I don’t hope you plan to stay as I feel you have a lot that you can contribute to other here on CSN

Tim Hondo  

Faith and support

Hi Honda,

Support from my husband, family and friends has helped me through all this. Faith plays a bigger part too. i am glad you have the support from your wife and family. I am taking day to day. Some days are good, some are bad...more frustration I guess. Who knows somewhere somehow someone might come to a better solutions to our ailment. Dream and hope ....

God bless and take care.