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Nasopharyngeal newly diagnosed

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

Hello everyone,

My name is Paula (39 years old) and last month I was diagnosed with nasopharyngeal squamous cell carcinoma. I had one right side lymph node involved 1.5 cm which was taken out and that is how everything started. I did all the ct scans, mri,.... The scans show normal nodes and doctor does not think that other lymph nodes are involved. The mri shows a tumor of less than 1cm located in the nasopharynx (a bit below the brain) also confirmed by a biopsy through nasal scope.

My treatment begun march 21: 7 weeks of radio (33 times) with cisplatin at the same time 3 weeks apart. Rest 2 months and then 5FU.
I believe that this is the common treatment. I already got a peg and portacath.

The radiation is higher doses on the tumour and right side neck and a lower dose on the left side. This week I start the second cisplatin (3 days). So far I have been doing well. I have dry mouth, dry nose but I'm still using my mouth to eat (mostly soft foods) and I can still taste.

Basically, I would like to hear from some of you who have had a similar experience. I try to go day by day and to stay positive. This second cycle of chemo and the further radio sort of scare me but I am prepared to go all the way.

One thing that I'm not looking forward is the feeding tube and hope that I can eat through mouth all along however I am more on the thin side and I don't think I can afford to loose weight. I was given Jevity for tube feedings.
I also have the magic mouthwash and the fluoride trays for the teeth (at times they make me gag).

Sorry if this is long but wanted to give as much information as possible. I would like to hear similar stories, tricks to deal with this, if any of you know clinical trials or good web sites, suggestions, etc....

Take care and hope to hear from you,

P

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Hello Paula,
I have found that this forum could be, but in its present format, it is a very lousy discussion thread. I tried to locate people with nasopharyngeal cancer, but there are very few. As the American Cancer Society probably operates like a government organization, I do not think they are likely to change and this forum will continue to be lousy.

If you read this, feel free to PM (Private Message) me by clicking on the little envelope on the bottom left of my posting. I think that would be a better method of communication.

I too, had nasopharyngeal cancer nine years ago. I think mine was about 2 cms. I went through nine weeks of radiation and one direct radiation implant on my lymph node about 6 weeks after radiation. I was brave and tried to get heavy doses of chemo while undergoing radiation treatment. By the fifth week, I became very sick and could not eat. I gradually lost about 35 pounds. I quit the chemo therapy.

I do not understand why you believe it will be necessary to be fed by tube. You will be able to eat, but my guess is you will soon lose your appetite. Then, you may have to revert to
Ensure or Boost (the milkshake like drink). Your taste will later go away, probably at the end of your treatment. You will hardly notice it since your appetite will be gone. (if like me).

The most difficult thing after treatment is the dry mouth condition. The loss is permanent. I got some of my taste back. After treatment, you will have difficulty eating for the rest of your life. I did not realize how important your saliva is. Do not despair, since you will get used to it. You will eat soupy foods or those with a lot of gravy. I no longer can eat a steak, but can eat a hamburger with gravy. On sandwiches, I dip it in soup since the bread is too dry.

Due to the difficulty of eating properly, I have not gained my pre cancer weight back. I was slightly over weight then, so I now am just below the adequate weight for my height.

I now carry a bottle of water. Your lips will be constantly dry especially when you talk. You will have to keep your mouth, moist. Those lip salve do not work since with a dry mouth condition, you cannot swallow your food completely. Thus, the left overs will be like a paste on your lips.

You will get used to it. The biggest thing to me is coming out and am alive, but not necessarily in good health. I go to the dentist frequently to clean my teeth and repair them. The dry mouth condition will cause them to easily decay. You will need to brush your teeth after every meal, but it is okay with me.

I do wish you the very best. Think positive and you will come out okay.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Sorry that you feel that way about the site, HAWVET. I have found it very helpful. There are some problems, for sure, but I am advised they are working on them, and as a software developer myself, I understand what that involves.

In the meantime, I think your response to Paula was mostly right on, except for the initial negativity.

I am head/neck survivor, HAWVET, had half of tongue replaced with part of arm, etc., blah, blah blah

But I have always found that positive attitude overcomes a great deal of hurdles. I think from your response to Paula that you agree.

No platitudes for you though, my friend.

Let me just say this: the lip balms will work IF you combine them with adequate hydration.

You MUST carry a water bottle with you, as you point out, and you MUST carry the lip balm with you. Small price to pay for living, I think.

Re the weight, your response reminded me that I suggested to my rad doc that we market a new diet plan....he didn't go for it.

I don't know from your email why you have difficulty eating, HAWVET, but you are not alone with nutritional problems. I use Jevity in a peg tube and I find that I am back up to fighting weight.

I have mucho problems eating. I am eating salads mostly, and odds and ends. But STILL working on getting everything down. When I can't, I go to the tube.

I am hopeful that you do well, sir/ma'am, and that you get past this with a smile on your face that you can pass on to others.

I don't say that as a hallmark mama (I am a married man) but because I believe that the best thing we can pass on is joy.

Best wishes.

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Soccerfreaks

Thanks for your response. I opened my eyes and should not have included remarks of my dislike or anything negative. I should have accentuated on the positive, especially to a person who recently discovered she had cancer. Do not worry as I am smiling on your constructive criticism. I tried to remove my introductory remarks, but I do not think it allows it on this forum.

For your information, I am a “he”. LOL. I give credit to all us cancer survivors and still around. I do not feel disappointed because of the after effects since I have read not only here, but elsewhere of others who have far more severe problems. When I see a severely disabled person, I frequently remark to the wife that I should be happy in my present condition.

Am not trying to be negative, but I do believe the results of you being a head/neck survivor is much more severe than mine. Yet, I see that you too have a very positive outlook on life.

Johnny

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Thank you for the reply, sir. It is greatly appreciated. We clear share an attitude! I wish you the very best.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Paula, I read HAWVET's reply to you and he/she is right on the money in many regards.

BUT you have to be a bit more positive yourself, and I firmly hope that he/she will learn that too.

I am a head/neck survivor: the good docs cut out half of my tongue, wanting to take more, much more, than just where the cancer was. They also took out seven lymph nodes on right side of neck. I had 33 rads, with mask, and a number of chemotherapy treatments over that time as well.

I didn't count.

What I did was laugh.

From beginning to end. Not the crazy laugh of a lunatic or the tearful laugh of someone mad at the entire world. I laughed like someone who wanted to make the world laugh with me.

Yes, you will have dry mouth, and probably even a ton of phlegm.

These days, kids carry water bottles with them everywhere, so that is cool. Fact is, if you are in Europe and you are smart, you MUST carry a water bottle, or you are considered stupid, with the price of water over there. So...you carry a water bottle with you everywhere, and you do not forget it.

You use a lip balm for your lips, and yes, it does work. I've been doing this for almost a year, and the only problem I have is when I have forgotten my lip balm. It works.

Again, you may take that with you for the rest of your life.

In my case, of course, eating is a bit more of a problem, and I HAD to eat through the peg tube for months( they cut out half of my tongue, etc).

I did that, and in my case, we used Jevity. I have no idea which is best for nutrition. So I can't get any of them to pay me to put their logo on my car :). I STILL drop Jevity down the tube more often than not, but that is mostly my own laziness. I should be off of that by now.

The tube is NOT a problem, Paula, in your case, I don't think, and if you haven't lost it already, you will soon.

I do appreciate what you are saying about avoiding the tube if you can, and I support you there 100%, for what that is worth. If you can eat without it, you are doing great. If you need it at all, try to make it a supplement.

Your taste will come back, I think. I had half of my tongue removed/replaced, and I still recovered taste.

At first, you may feel like a baby, but maybe not. You are eating already, so you may already be past that.

Maintain your dental regime. That is critical, because it appears that rads DO mess with your teeth.

Um...back to the feeding tube...it is not a big issue going in, and it is not a big issue coming out. So don't worry about it. Use it, again, if you need it, but try to avoid it, and don't worry about it.

I had mine fall out during the night while at home, and the only worry was to get to ER before the hole closed.

If you have one, though, be sure to care for the site daily, of course. It is a potential source for infection and other nasty things, so at least use hydrogen peroxide daily, and if they give you other stuff..obviously, use that too.

I didn't have the portacath, Paula, so can't speak to that.

I can speak to this though: my thoughts are with you and I hope you do well.

Fact is, I am confident you will do well.

Take care, my friend, and let me know if I can help you in any other way.

digital_works
Posts: 8
Joined: Apr 2007

Hi, my name is Ted and I had NPC Oct 1999. I had C&R, chemo & radiation. Cisplatin followed by 5FU. I had radiation everyday for 2 months. I got burned on the neck by teh radiation and had to use aquapure. I puked from 6am in the morning, every 2 hours, till 1 or 2 am at night. I slept sitting up, proped up by pillows, since it was easier to pop out of bed to the bathroom sink, puke my guts out & sit back down in bed. No one ever told me about drinking ensure. It is easy to puke up ensure, since it dosen't sting. I was stage 3 and was given 3 months to live. I was given Cats and MRIs. During the C&R, I was loosing wt, the doc thought I'm not stabilizing and they'll install a g-tube. I said I was fine, I don't need a g-tube, I just need to stop puking. After the 2 monhts of torture, I healed for 2 weeks and then got 6 months of 5FU in a battery pack to wear 24 hr.s. And now back to puking and feeling miserable. During the 5FU it took me 6 or 8 hours to drink 1 tablespon of clean beef or chicken broth. IT took about 2 monhts to get used to cream of wheat, cream of rice. Slowly worked up to adding sbrambled eggs & cream of rice in a blender. My throat was burning from all the puking I had. I lost all my hair. I stayed being a veggie eater for 1 year. slowly added meat. I got a used crock pot and made long cooked chicken, till mushy. The dry mouth is still with me, but thing have changed the last 6 months. About 2 years ago I went to the dentist for a cavity. I found out I needed root canals for all my theeth. I found now that I have Osteo-necrosis of the jaw, due to the radiation. No One ever told me about the after effects of the radiation. The rads killed my saliva glands. If there's no saliva to wash away the bacteria in the mouth, then you get massive tooth decay. That's why you'll get a prescription for prevident. Save some money, brush morning, afternoon and before bed w/ Colgate Total. I brush, what till the toothpaste foam dies down and it's just a liquid in my mouth, spit out the Total, a quick swisch w/ water. The endodontist said I do have a tiny amount of saliva. Try chewing sugarless gum w/ xylitol. for the last 8 months I've noticed an increas in saliva! Don't chew Orbit, it is too soft and becomes very very sticky and soft w/ no saliva. Trident holds it's shape w/ little saliva and w/ some water. Don't worry so much about eating. The rads killed off alot of taste buds, but they grow back slowly. I went from 165 to 123 lb.s in 2 months. I'm now back to 158 to 162 lb.s I try to get back to 156. I feel good at 155. I had my rads from left to right, a full 180 deg. Green tea is good. When you can swallow again, try Ginko Biloba, Melatonin & Vitamin C 500 mg 1/2 hr before bed. The ginko thins the blood, melatonin helps you sleep. You'll loose some of your thinking power. I used to be able to do fourier transforms in a split second and I lost that ability. I've slowly had to train my self back to doing algebra, trig, calculus & diff equations. But I don't feel like I'm calculating like I used to. Still eat alot of greens, spinach helps lessen the ringing in the ears, brocolli, green beans, bell peppers, asparagus. It's taken about 3 years to taste asparagus as asparagus. Don't try lemon, the bottom of your jaw, where the saliva glands used to be, will cramp like a soab, hurt. Don't try foods that will make you pucker and force saliva out... it'll hurt. Chicken, fish, turkey, rice, potatoes, beef heart = low in fat, lean red meet.
Get a room humidifier, you'll be dry in the nasal cavities, a moist room helps. Snif water, hold one nostril and blow out the water & along comes the hard snot. Juice apple, carrots, bananas. Citrus fruits hurt to swallow, due to the acid. I had to use anti-acids, chewables w/ a little water. Go to Big 5 and get a fanny pack w/ 2 water bottles. That's how I always have my water near me. Osteonecrosis was my most recent shock, but I'm over it. Just keep brushing w/ Colgate Total. Limit the sugar. I do chew a few times and swallow quickly; almond joy candy, chocolate kisses, M&Ms, candy. I drink non fat, 1% or 2% milk. Whole milk has alot of fat. Green tea. In the past 3 years I've liked the organic juices from the supermarket, Odwalla. I can drink orange, pinapple, grape, apple. Just remember to drink water to wash out the fruit sugars. I can taste bacon, polish sausages, steak, lamb ... any meat I can taste as usual. I still like cream of rice, wheat and soft cooked eggs. I can pound down any pizza, pasta, donuts, twinkies, zingers, hoho's, but brush and rinse your mouth. Breads & rice cause cavities, since they get between teeth and sit there, No saliva to help wash foods away & you get cavities. have that water bottle at all times. I wake up in the middle of the nite and sip a little water for the cotton mouth. Since my C&R, I've had ringing in the ears. I got 50% hearing lost, all high end frequencies. It's had to hear women speak, I have to ask 'can you say that again?' . I go to sleep w/ orange ear plugs, the spongy kind of hearing plugs. I like quiche. Brisk Iced tea, strawberry soda, Dr. pepper, any cola, root beer. I don't like cactus cooler , taste wierd. my taste buds not making it right. I can taste any ceral, cookies, fried pork skins, doritos w/ fat free sour cream. salsa, avacado, pickles, oysters, clams. Shrimp makes my mouth dry out, so I have to eat shrimp in a clam chowder. Get s Slow Cooker from the thrift store and slowly, slowly get used to eating stews, potatoes, carrots, brocolli and chicken broth. Slowly add meat, chicken, turkey, etc. I'm cancer free since Dec 1999. I keep my hair short, crew cuts, I use a flowbee. I got used to short hair after treatment. Any health store has Whey protein mix to beef up. Keep animal fat out of foods, so don't eat the skins. Keep the calories down. Nothing you can do for hearing loss, so live w/ it. Ostenecrosis live w/ it. Vit E & other anit-oxidants. Multi-vitamins, like 1-A-Day. Nothing you can do for hart snot, just snif water and blow stuff out your nose.

robertj1106
Posts: 2
Joined: Jul 2008

In 1996 I had 5fu, cisplatin and 35 rads but lucky my tumor was in hypopharynx so I still have fair saliva. I wake up every hour or so with dry mouth and also have to pee so get up, drink a little, pee and go back to bed. I think the lack of good sleep messes with my brain and memory. I wondered why I couldn't hear my wife and children and sermons and you explained it. Thanks. I also appreciate all your eating and weight loss struggle. I dropped 16 lbs. during my chemo phase, and it was because of stomatitis. I tried to keep moving and do some exercises thinking that would build muscle but it didn't help much. Once I finished treatment I stepped up the exercise and did gain and build some muscle though still not very quick. My best effort has been in deepening my faith in God and Jesus. I have never been a worrier and if something seems too tough just ask Jesus to handle it. I got ran over by a trailer in May and since I was heading for church at the time, my angel lifted part of the weight so I just got bruises and a torn pants. I'm 72 yrs. old so getting a little slow from age but know the treatment also took it's toll. If I had to do it again I'd ask for a lot less chemo and rely more on prayer.

Christmas
Posts: 91
Joined: May 2005

Paula:
I'm another Nasopharyngeal cancer survivor, completed my radiation and chemotherapy March 2003. Don't worry about what's coming. It's different for everyone. But feel free to post your concerns and questions. We'll all try to help. My dental routine includes a Water Pik. Brushing, rinsing, and flossing still does not remove all the food particles because when there's no saliva, everything just sticks. I agree with using a humidifier and sleep half sitting up while you're getting treatment. You will get a lot of mucous clogging you up. It was after treatment that my doctors wanted me to use a syringe to squirt water up my nostrils to keep that nasal area clear and free of gunk to avoid infection. I think that the after effects won't be as severe as those survivors who received treatment many years ago. They've fine-tuned the radation treatment to target more specific areas with proper dosages.

Stay positive. Get through one day at a time. You can worry about the after-effects later.

We're all rooting for you. Let your family and friends help.

WillieP
Posts: 6
Joined: Apr 2007

Hi Chrismas and everyone w/ NSC experience,

I am on treatment for NSC right now and waiting to start the last 3 cycles of chemo (FU5)in about a couple of weeks. My question is when did you get your taste back, and you can eat solid food properly. My radiation ends about 2 weeks ago. My sore throat did go away about 80% but still bothers me at night when I sleep. When will the mucous clogging disappear, chrismas. Please respond thanks.

Christmas
Posts: 91
Joined: May 2005

Hi, WillieP
The taste buds came back gradually. You're going to try to eat different things to find what works for you. I remember lots of vegetables at first. Lunch meats work better than regular meats because they have more moisture. Your taste will depend on the quantity and quality of your saliva. The mucous will go when your scarring goes away. Does your doctor tell you to use a syringe to irrigate your nose/nasal area? I was using a saline spray/aerosal at first. But a fat syringe gives you more fluid.
There's no set time line because everyone is different. The amount of chemo depends on your body weight and how you will react to it may be different from my experiences. Be patient.

TLWilliams
Posts: 1
Joined: May 2007

Dear Paula,
I was diagnosed with the same thing June 2005. Its pretty scary when a doctor tells you, you have cancer. The best news he gave me though was that its usually 100% curerable. That made things a little better. Mine had spread down to my lymph nodes in my neck on both sides. They said surgery was really not an option. They decided that a concentrated dose of radiation on my nasal area and my neck would be the best. They also had me go through chemo exactly what you are doing. Radiation was ok, except it burned my neck area, which was expected. Get Aquaphor which helped me when the skin got dry and cracked. It's like a bad sun burn. Don't worry it heals fine, there is just a deeper tan line around your neck. As far as Chemo, well that was not great I won't lie to you. I got sick as expected it wasn't pleasant but if I have to do it again strap me in. I had the feeding tube put in my stomach because the radiation closed off my throat. They said try and use your mouth as much as you can, use it or lose it. They tried the feeding tube through the nose but that came out when I got sick and it wasn't pretty. They due have a clinical study for people diagnosed with Nasapharyngeal Cancer. I was in it. You lose your ability to produce saliva and your taste buds will go by the wayside. My saliva has come back some, but I get dry if I talk too much, keep a lot of water around. My taste buds have changed, I eat mostly chicken now, can't due steak or certain other meats because of dryness. One thing I did notice from the Chemo you may have a numb feeling in your arms and legs from your elbows down and your knees down. My Chemo doctor was also asking me about my hearing and everything was fine until after the last time I saw him and he said all is good I don't need to see you and a week later my hearing went. Funny thing It's like my warranty ran out,HA HA. Well after all this, the good news all is well. I deal with the small things and go to my check-ups every three months. I will say I also lost weight which for me was great, not the best way to go on a diet.

vale20042005
Posts: 3
Joined: Aug 2007

Hello , my husband has undergone through 2 rhinoplasty and now he needs a nasal reconstruction surgery. Anybody knows an excelent surgeon on this? Please email me at vale20042005@hotmail.com Im really worried on this
If you can help

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

Hello everyone,

Thanks for all the replies. Very appreciated and helpful. I have answered all of you directly.

I just finished my Cisplatin treatment and this coming Tuesday I will be done with my radio.
Things have been going relatively well.

I did hear that my next chemo treatment, the 5FU will be combined with a lower dosage of Cisplatin.
I was under the impression that it was just 5FU for the last treatment and not a combination.
Can anyone clarify me on this subject?

All the best and take good care,

Paula

WillieP
Posts: 6
Joined: Apr 2007

Hi Paula,

You are right. It's a combo 5FU w/ lower dose of Cisplatin for 3 cycles with 4 weeks in between.

Omachka
Posts: 1
Joined: Oct 2006

Hi Paula, I'm very sorry to hear of your diagnosis. My husband has just come through the same type of cancer. Borderline between stage 2 and 3 with one lymph node involved and another just starting to be involved. They decided to give him radiation and chemo before doing any surgery to try and shrink the tumor.

He had 38 radiation treatments and was also treated with Cisplatin at the same time. He is now cancer free for the last two PET scans and for the moment they will not do any surgery. It has been less than a year since his initial diagnosis.

He had a lot of trouble eating through all his treatment but never did need a feeding tube. For the last few weeks all he could tolerate was the high calorie Boost which I gave him about 5 times per day. He did lose a lot of weight but since he was a bit over when he started, he's decided to try and maintain the way he is. He is able to do that by eating regular foods now. No more Boost.

The biggest problem he is having now is dry mouth. That makes it nearly impossible to eat bread or other dry foods but there are many other things he can eat instead. Everything is still improving int he eating department and we expect it will continue to do so.

The thing for you to remember is to keep things as positive as you can and know that there are others out here who have had good outcomes. There is no reason you won't have a good outcome as well.

I have made a blog about his journey at http://omachka.com/survival (I guess you have to copy and paste that into your browser as I don't know how to make a link on this message board) There are some resources listed there including a support group for head and neck cancer.

I wish you luck Paula and I hope you do as well as my husband has.

spitfirecole
Posts: 3
Joined: Aug 2007

Paula, I just found out that my neck mass is due to a nasopharynx cancer yesterday.

I'm looking at either Stage II or Stage IV NPC. Mine is non-keratinizing (which my docs tell me is a good sign that it will respond well to radiation).

I go for my CT Sim and Mask fitting on Tuesday, and chemorad soon after.

Thanks to everyone for sharing their experiences and outlook here. Even the hardship descriptions are a comfort, because I know what to expect and to get myself mentally prepared for the fight.

I wish you all the best!

mermaid52
Posts: 9
Joined: Oct 2009

Hello paula
my husband was diagnosed 7 yrs ago with dysplasia to naseopharnyx and was stage Iv aggressive unknown primary tumor. He had Lymphnectomy and then 8 weeks of chemo and radiation. Immediately after the last radiation I had him treated in Hyperbaric Oxegen to heal the burns inside the throat from the radiation...I highly recommend this-may want to line it up a head of time. Also Please get the PEG tube. My husband went from 160 to 107 lbs even with the tube. He has a high metabolism naturally so it was hard to keep the weight on him even with 6-8 feedings a day.Stay away from Ensure and Jevity _they are full of sugar_. Instead get some whey protein and mix with your foods in the blender. We used Immunopro protein powder from Metagenics and Jay Robbs Whey protein which do not have any sugar in them...but taste good. They are sweetened with stevia. Cancer loves sugar and feeds on it. Try to supplement your diet with Flax oil and Fish oil and a very good multi vitamin from a reputable company at a health food store.
My prayers are with you.... Also for fatigue and to fight the cancer take Green tea extract in water every day.You can pick it up a a health food store. American Gingseng also helps with fatigue after treatment. Ginseng was tested at MD Anderson Hospital in Houston Tx for fatigue in cancer survivor and they found 1,000-2000mg helped them to have a more normal energy level. My husband uses both the green tea and the American Ginseg every day.
Hugs

mermaid52
Posts: 9
Joined: Oct 2009

Hello paula
my husband was diagnosed 7 yrs ago with dysplasia to naseopharnyx and was stage Iv aggressive unknown primary tumor. He had Lymphnectomy and then 8 weeks of chemo and radiation. Immediately after the last radiation I had him treated in Hyperbaric Oxegen to heal the burns inside the throat from the radiation...I highly recommend this-may want to line it up a head of time. Also Please get the PEG tube. My husband went from 160 to 107 lbs even with the tube. He has a high metabolism naturally so it was hard to keep the weight on him even with 6-8 feedings a day.Stay away from Ensure and Jevity _they are full of sugar_. Instead get some whey protein and mix with your foods in the blender. We used Immunopro protein powder from Metagenics and Jay Robbs Whey protein which do not have any sugar in them...but taste good. They are sweetened with stevia. Cancer loves sugar and feeds on it. Try to supplement your diet with Flax oil and Fish oil and a very good multi vitamin from a reputable company at a health food store.
My prayers are with you.... Also for fatigue and to fight the cancer take Green tea extract in water every day.You can pick it up a a health food store. American Gingseng also helps with fatigue after treatment. Ginseng was tested at MD Anderson Hospital in Houston Tx for fatigue in cancer survivor and they found 1,000-2000mg helped them to have a more normal energy level. My husband uses both the green tea and the American Ginseg every day.
Hugs

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