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Late term radiation effects

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hi, I am a 12yr Nasioparengeal Stage 3 Survivour, I have the normal side effects, teeth are almost all gone I have like 10 real and 1 bridge, jaw scarred down to with teeth 2 inch opening, taste buds are back and fine, salavia is thicker and does nothing to break down food or wash teeth or relieve my throat. I am writing because this past Christmas I was hospitalized for 8 days with aspiriation phenumonia due to dyspagia, after many test they found that with swallow test.
I had cancer so long ago, and I was so young they really gave it to me: 3 sessions of 3hr. Cisplatin drip, 7 1/2 weeks of radition, and the partial neck dissection where I think they tool everything, and the 1 week a month for 3 months straight 24hr a day Cisplatin for a total of 15days(my safety net my Doctor said, considering everything in me was in operable, but gone at end of rad sessions and all lymph nodes removed clean). So back to why writing, I have been given a peg tube and had no food or fluid orally for about 60 days, speech therapist was positive about responses for at home exercises, and will begin outpatient speech therapy in March, I am very hopeful, but would love to hear other experiences. Please share good or bad. Sorry so long, just wanted you to have back ground...thanks Rachel

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

Good to hear from you. Your story goes to show several things.  First, that these cancers are curable, and second, that there are some potential long term problems after treatment.  There are a number of regular posters here who have permanent PEG tubes, resulting from incapacity following radiation, or surgery.  Aspiration pneumonia isn't anything to be trifled with, and not being able to eat is a significant problem, so PEG tube placement makes a lot of sense for some of us.  The bad new is, you may or nay not be able to get rid of the tube.  The good news is, you are alive to deal with the problem.  You beat the beast.

 

I have actually been through radiation twice, and have had very major surgery as well.  My last radiation was over a year ago.  I'm still not able to eat properly.  I can get solid foods down a little, but not enough to provide the calories I need.  And I tend  to aspirate certain foods, especially those that break into small pieces when chewed.  Rice is an absolute no-no, for instance.  I can get liquids down ok, so most of my calories come from boost or ensure.  It wouldn't surprise me, given my history, to have to have a PEG placed some day.  Guess I'll cross that bridge when I get to it.  I know several people on this board who have been able to maintain a very high quality existance with a PEG in place.  Patricke is a poster who  is here from time to time with a permanent PEG tube.  I know he has run marathons with his PEG in place, and I know he is prepping to hike the entire FLorida trail, a distance of over a thousand miles!

 

Glad to have you posting here.  I know you have a lot to offer.

 

best

 

Pat

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Thank you Pat! I can and will accept the tube forever if I must, I just would like to eat and drink again, and use it as a supplement. Even if the foods are limited, it would be nice to go out to dinner with my Boyfriend or have a piece of cake on my birthday. You know its like a diet as soon as someone says you CAN'T its all you want. I think if the excersises bring back some I wouldn't have such a great need, its all mental. I also think I forgot to mention that I have lost my hearing as well and wear hearing aids now.

Don't get me wrong I was 28 then and 41 now, divorced mother of the most amazing 8 year little girl, the Lord has blessed me with my life, my family, my daughter, and my new start. The big "C" and the effects have been my cross to carry and for what I have been given I will carry it the best way I can. I am a fighter I won't quit.

To answer your question, yes this thing is beatable. I pray everyday that it doesn't rear its head, and so far so good(knock on wood). If it weren't for prayer I would not be here. I can offer any adive anyone needs, I still am hopeful there is a positive outcome to this eating thing!:-)

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

I'm with you on this one.  To be able to eat a french fry or a steak would be marvelous.  They smell so good. 

 

Pat

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

lol

 

 

 

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

Hi Rachel,

 

Congratulations on beating back the beast; your story is exceptional heroic and long lived.

 

While I did go through the placement and use of 2 PEGS our similarities are limited.  The one key bit of information I might add is to do all the exercises prescribed to you.  I fully credit the members of the H&N forum (1-year ago) with enabling me to survive treatments (mostly ) intact.  Their persistence in drinking lots of water and to continue swallowing gave me a little window of activity which paid huge dividends.

 

Anyway, welcome to the site, I am happy you found us and hope we can (in many ways) help.

 

Best,

 

Matt

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Thank you Matt.  It took me a long time to want to be part of something like this.  I was a bury your head in the sand type of girl.  Even when I they diagnosed NPC stage 3, I didn't look anything up, I just wanted to know what I had to do to win.  I realize, that allow though rads have not left me free of effects, so many seemed to happen later than predicted.  My red ongcologist said months after therapy that my hair would not grow back and asked to remove my wig so he could take picture and show interns(it was teaching hospital, Univ. of Penn).  So 6 months later I went back with my wig on, and after check up, I said go get your camera, he said why and I took off my wig with my hair growing back and said "Don't ever tell a 29yr old women she won't get her hair back AGAIN!

I didn't loose teeth till year 8, lost hearing in 2010, and now swallowing issue in 2012.  So really God has blessed me, and I know He will again.  When sick I adopted the word "Believe" and it is still my solgan.  My life is in God's hands and He will lead me down my path and be my strength in this part of my fight!  Like I said to Pat, "I will eat again"  and I will update so that people who help me, maybe my info and story will help someone else!

 

God Bless Matt, Rachel

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

 I'm only 4-years, Rachel, with unknown Primary. Had a number of Crowns before tx, and have two new ones, so am hoping the teeth thing stays intact for me. Neck spasms are my biggest gripe over the past year, now that most of the dental bills are taken care of. My tx was a bit different than your's, and I had no neck dissection- they think mine was caught early enough that if they just blasted me in 20 places with the rads and accelerated the flooding of Cisplatin and 5-FU concurrent with those rads, then all would be good. Has been so far. 

I was PEG-exclusive for around 9-weeks, but the eating gradually came back, and hope that yours does, too.  

12 years. That is inspirational, Rachel, for all of us, and it's great that you came forward with your story. Your pix shows a very beautiful woman that's, again, 12 years!!!  You've been thru a lot already, as we all have, so you know what you gotta do- only move forward in the Positive. And, yes-

Believe

kcass 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Kent thankyou for the compliment. It is funny to me to be called an ispiration, because all I did was let God take control. I remember when I was starting Lance Armstrong was beating terminal, and I thought of that a lot, he hadn't even won a tour de France, to be stripped of, yet! You look and focus on something. I truly don't Believe the Lord bought me thus far so I can spend it this way, 41 and not able to eat again is not a great outlook, well staying thin is lol, but again I don't write my scrupt Jesus does and whole heartedly I choose to walk the path he laid in front of me and fight. He also gave me a survival instinct and that's what ill do, that's what we all do! We are all part of a family, that given a choice none of us would have joined, but non the less we have each other to learn from, draw strength from, laugh with. 4 years stage 4, that is an inspiration to me! You keep staying healthy and happy, and just like you let's enjoy everyday we were Blessed with!

Rachel

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

Hi Rachel, I just celebrated my three year anniversary of having my stage 4 throat cancer removed with an incision around my neck from one ear to the other. This coming Saturday will be my three year mark on starting my radiation. I had part of my tongue removed which altared my once deep voice forever, and I had my epiglottis removed which lead to having to learn how to swallow all over again. They threatened to put another feeding tube in me while I was going through radiation because I lost over 90 pounds but I kept muttering that wasn't going to happen. Last year I had to have 4 front bottom teeth removed because of the effects of radiation. All I wanted for Christmas was my four front teeth but I had to wait until mid January to get my new plate. At the same time I found out my teeth were rotting from the inside out I also found out that a simple colonoscopy could no longer be done  in a clinic type atmosphere but instaead i had to go to the hospital. The day before I was originally scheduled for my colonoscopy, I was driving home from work to start the happy hour ( to drink the solution that was going to allow me to catch up on reading the Readers Digest) and a scheduling nurse called and told me they had to cancel my procedure the next day because I had  a tracheotomy. Upon asking her what my throat had to do with my ass she explained that since I had a trach I had to be someplace were they could put that dam tube down my throat in the event my throat callapsed.

All kidding aside I have concerns with how I have to eat. Seems like I have to chew forever and sometimes when I am in a hurry I swallow before I should and sometimes things don't go down like they should. But they did remove that punching bag thing (can't remember the name) at the back of my throat so I have no gag reflex which has also helped.

One thing I learned through all this is I was shocked what I had to go through to get rid of cancer but it was worth every dose of Oxycodone for six months. One thing I am certain of is I am really thankful that my teeth decided to break off above ground and not below. Last month I had another clear PET Scan so I am alive and spending the kids inheritance money and enjoying every minute of it. 

Enjoy the day..................I do, every one of them

Jeff

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

either your doctor, the anesthesiologist or the endoscopy suite people were being a little over cautious.  I just had a colonoscopy done a couple months ago.  I've had a trach for going on two years.  My gastroenterologist had no problem performing the procedure in an endoscopy suite setting.  They just attach their tube to mine.  He has also done a number of dilations that way.

I can see them doing that if the endoscopy suite is not in a regular hospital.  It is definitely more of a pain in the tail having the procedure done in a hospital operating room because then, you have to have a pre-op done.

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

They were really over cautious. I haven't had the trach for 3 years now. It was just the fact that I had one. I had teeth pulled a  month prior to going in for the colonoscopy and they knocked me out for that with no stand by breathing tube. Go figure.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Doug, excuse me while I miss spell everything, but you gave me a lot of hope in that response. You have a part of your tongue gone, your epigilousgone, and your uvila gone, and your still eating. I always Believed that the Lord would heal me of this current issue, I just know its in His time not mine, but forunately for me I have all my parts that way, they have just stiffened from rads and surgery and scar tissue, so even though I was using them, food and fluid was finding its way into my lungs. Just a question, your weight loss, are you coughing a lot and vomiting? Make sure you are not aspirarting into your lungs like I was, I had lost 60lbs over the last 3 yrs. Iwould say the last 15 or so I thought were intentional but it turns out I was extremely malnourished, I didn't realize how much so till the phenumonia and the effects of it cleared. 12years ago they didn't know all the side effects of rads that they do now. I too have major dental issues, I can't afford to. See dentist at this point, so hope they stay pain free for awhile longer. I wouldn't let them pull any prior to treatment, hind sight I would've pulled them all, but my teeth were beautiful and they break my heart when I look at them. But that is just vanity. I did not have a trach thank God and too young for colonescopy so ill assume ill be okay when time comes! You are funny and I welcome responses from you anytime. I may have time to uplift people, you have humor, such a gift!
God Bless,

Rachel

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

Rachel

God works in mysterious ways. My brother in law is a preist so between him and a few other preists there were quite a few prayers for me. I can say with assurance that I have been blessed. Especially with the way my epiglottis seemed to replace itself according to the Nurse Practitioner affiliated with my Radiologist.

I am not coughing per say, however I do have a build up of flem and I have to clear my throat alot. The thing I have an issue with is neck cramps. Never had them before my cancer but after they cut all those muscles in my neck I get them really bad just on the right side. I have learned how to divert them but if I can't catch it on time I have to sit. I never  had something hurt so bad. I spoke to another guy who said he gets the same thing. Leg cramps are ticklish compared to neck cramps.

After my surgery I use to torture myself and watch cooking shows and by the time I was allowed to take something by mouth the thing I craved the most was water. When the therapist gave me a  cup of water and I took my first sip and swallowed I thought I was in heaven. After a few weeks of getting use to eating real food again they took  the feeding tube out and then came the radiation. I lost my taste for alot of different foods. I hated coffeee to  the extent I got the dry heaves just standing close by when it was brewing. I lost my appetite for any type of beef, sausage, brown licorice, and peanut M&M's which are my favorite. I never regained my taste for some types of sausage. I am back to 3 - 5 cups of coffee a day.

I had to go through Hyperbaric treeatments for 4 weeks before they pulled my four teeth or what was left of them after they broke off on their own, and then 2 weeks again after they pulled the teeth all  because they said my jaw and gums would not suvive the extractions. They put you in a chamber Monday through Friday for almost 2 1/2 hours to breath pure oxygen while watching the game show network. They also said I was not a good candidate for inplanted teeth because of the lack of saliva and my jaw bone would not support the teeth. At least now with my false teeth I no longer have to tell people I play ice hockey.

I truely believe that your recovery is a mind set and nothing happens overnight and certainly in all cases as quickly as we want them to. I gained alot of the weight back. I just tell people there was no way cancer was going to kick my ass, I will gain the 90 back plus some. Just take your time when eating and drinking, sometimes we have to remind ourselves that things aren't quite the same. Do you feel you have to chew your food a whole lot more than you did before? I feel as though I do. Some foods also seem to be harder to eat like salad. I go to the mall close to where I work and get this cob salad and it takes me about an hour to eat it. Is salad a challenge for you?

I am the Vice President of the Teamsters Local Union in Reading PA. and one of the guys I represent just informed me today that he was diagnosed yesterday with throat cancer. I am sending him down to the Hospital at the University of Pennsylvania to the same sugeon I went to. People fly in from all over to go to him and I would never go anywhere else. To this day when I go there I feel as though I am at home. I can visit people in other hospitals and I get the heebajeebs just knowing I am at a hospital. Once I retire I will be volunteering to help others who have to battle cancer but for now 24 hours in a day isn't enough time  for my work and family. I already started to write a book mostly on Union stuff but it will include alot about cancer.

 

 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Douggie, thank you for replying! I think they have changed treatments nowadays compared to order in which I dealt with things, unless its the exploritory surgery u all are talking about? After months of being misdiagnosed by a horrible ENT( for 3 months of antibotics withlump in neck and never using so much as a tongue depressor on me, opened me up to remove said dead lymph node even though while he was ignoring the obvious I got another lump on other side of neck) I was forunate enough that my Mom knew someone and had appointment immediately following that botched surgery and I saw the Head of Head and Neck cancer at Unov. Of Penn, Dr. Weinstein. Although he has horrific(at least then) bedside manner he is brilliant. He found primary NPC with in 5 secs of placing tube in nose. My first surgery was to see it it spread to tonsils, tongue etc. And peg tube. Then I had 71/2 weeks of rad and 3 chemo treatments, then partial radical neck dissection, then for next 3 months 1 week each month in hospital for 24hr chemo that Dr. Weinstein called my safety next. I never really used my first peg, I ate lipton chicken soup like going out of style, lost 70lbs. I lost my first 8 teeth at once and got bridge, I had 20 hyperbaric treatments before surgery and 10 more the 1st day after surgery. I want false teeth and my dentist won't do it because of dry mouth and says he will only do implants which they say I would have to have multiple set ups in each tooth because half will fail, no thanks finding new dentist. I am on 2 peg, I really just wanted to know if I will be able to regain my swallow even though this didn't effect me till 12yrs. After treatment? Whew hope your still awake, so long winded I am! Rachel

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

WOW..............Mine was a walk in the park compared to your journey. I was also missed diagnosed by an ENT as having acid refux and after months on medication that did nothing for me, my family doctor sent me to a different ENT who diagonesd me with cancer. I did see the quack ENT again in the hallway of a hospital and  thought about showing him what I thought of him but decided there were too many witnesses (just kidding). Rachel you have to remember doctors call it a practice, they are only practicing on you and then they die before they become perfect. The second ENT after diagnosing me with cancer told me after taking a biopsy that he wanted me to go to the Hospital at the University of Pennsylvania to see guess who???  Yes I can see that there may be moments when you want to backhand him across the room. By the way he made it more easy to do it because he lost alot of weight and kept it off so far. You commented earlier about me being funny, well that is how I get through tough situations especially when I am scared. After my radical neck disection as they call it I asked Dr Weinstein if he gave me a chin wedgey, I said come on doc you had to but all that neck skin someplace, you pulled it up over my chin didn't you? He just laughed.  Sometimes you have to put these people into a situation when they can step back for a moment and smile a little. Look at what he is confronted with every da,y he shows up for work and the worst part is he can't save them all. Most times when I go down to see him he is late, but he never leaves the room until all my questions are answered.

Sorry for my defense now lets go to some offense. Can you still go through the swallowing motion? How has that changed over the past 12 years? Your therapist, is this the one down at Dr. Weinsteins office? (I forget her name)  Because your ordeal started long before mine I haven't the years experience that you have but I still find myself rushing to get through a meal especially when I am out to lunch with someone and they are done and I am still chomping away. Sorry for not being much help by asking questions about your question. I am curious to know if this is something I may encounter down the road so I will help investigate this.

I am very surprised that your dentist had the complete opposite approach as mine. I just got my false teeth a month ago because he said there was no way my jaw would support inplants because of the radiation. So yes I agree, go to another dentist. A $1,000 partial is far cheaper than a single inplant that most likely will not work.

Enjoy the day

   Jeff

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Rachel

by all means FIND ANOTHER DENTIST !!!  The best thing I did was to have my bottom teeth pulled before radiation treatments so that I would not have to endure the pain of the teeth failing on me afterwards.  My dentist agreed with my rads doc on that and we went with dentures.  I have dry mouth also, but it is not an issue with the dentures (top which I already had or new bottoms).

Good Luck.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Ingrid, thank you for your response. He said there would be so much pain and ulcers, it is so reassuring that so many have been told no to implants because in my heart I just feel that they are wrong. In hindsight I wish I also had pulled my teeth, it was just because I was 28 newly married(divored now, in much more full filling supportive relationship now) and my teeth were impeckable, no cavaities and as they listed all that I would lose I thought that I could control. They held up for many years, but the years of pain and breakage(still going on) I should've pulled them all!

Being on here is so helpful, I am so happy that I found this community of people that understand, friends to make and people to pray ffor and continue to see this "beast" get the crap kicked out of it!

Rachel

Grandmax4's picture
Grandmax4
Posts: 579
Joined: Dec 2011

Rachel, I was dx in September of 2011 with cancer on my epiglottis...my Ent did not feel comforable doing such a delicate treatment, he sent me to a friend,former classmate of his, and thus began my love affair with my surgeon and his team. He gave me the choice of surgery by de vinci robot or chemo and radiation, I also knew if lymph nodes were involved I would have to have treatments after the surgery. I asked him point blank what he would recommend if I was his wife or mother. He said with surgery the problems and side effects are up front..healing, dealing with mucus and swallowing issues. With chemo and radiation the problems are at the end...dealing with all the side effects that can occur. I chose surgery( November 2,2011) and have not regretted it so far. I was blessed that the nodes were clear and no chemo or rads was needed. It took one solid year of soft food, and exercising to finally be able to eat anything I want. I had a feeding tube down my nose for about 2 months and I already had false teeth...it scares and alarms me a little that after 12 years you are having problems, but like you say, my faith is in the Lord and I trust Him and my team at The James in Columbus, Ohio to lead me right. I have no epiglottis, but have learned the correct way to swallow, for me, and am doing fine. I did have asperating pnenoomia the first month I was out of the hospital because I wasn't swallowing correctly, a barium x-ray show my speech therapist what I was doing incorrectly ..anyway, I'm long winded too :), I wish you the very best..please see another dentist and keep trusting

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Grandmax4,
Thank you for responding and don't be afraid, I am a 12 yr SURVIVOUR, I am still alive and have an 8 yr. Daughter named...Faith! If it weren't for faith I would not be here and would not have my sweet miracle little girl! My treatment was different from yours and what's happening is late term radiation effects you didn't have that Thank Jesus! I would rather have a feeding tube and spend my time watching Faith grow and spending time with my Christopher, then the alternative. People that don't have epigildeous (can't spell sorry) give me hope, that was part of my problem, mine wasn't closing over my wind pipe, so I will continue to do exercises I know and can't wait to start with new speech therapist in couple weeks. Don't u worry, I will find new dentist! Stay strong, don't live in fear, I did that through my 12 byears of new life, I will not be afraid anymore, the Lord is in charge and I Trust Him!

Rachel

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