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I am new to this site and need advise/support... my dad was recently diagnosed with Squamous Cancer

AngelaLewis415
Posts: 9
Joined: May 2013

My dad, Glenn, has never been a smoker or a drinker... he was recently diagnosed with Squamous Cell Cancer. To say the least we were all in a state of shock when he was diagnosed. The location is in his neck and back of the throat. (HPV) He has been in Radiation treatments for three weeks, he has three more weeks to go. He has had two Chemo treatments and is done with them. He has Radiation everyday Monday thru Friday, twice on Thursdays. Since he began treatments he has been 100% against getting the feeding tube. He was very sure in his ability to be the exception to the rule when it came to being able to eat and drink while getting treatments... he is quickly learning that what all the Dr's and nurses were telling him about the level of difficulty would be, is certainly holding true. He did "okay" the first three weeks, drinking water, ensure and carnation breakfasts and also eatting puddings, scrammbled eggs and some soups. His last Chemo treatment was this past Tuesday and it threw him for a loop! He is not eatting or drinking anything much to speak of... he said he can swallow fine but when food or water is in his mouth, it gags him. Everything tastes aweful. He has no slyvia and finds it very difficult to get anything down. He is on nausea meds and oxycodone, has magic mouthwash and biotene toothpast. I am getting very concerned for him and his non eatting. As expected, his white blood cells are dropping rapidly. He has lost about 25 pounds in the past three weeks, has become very tired and weak. He drives to and from treatments, a little over an hour way... each way. He is 59 years old, has MS and Sugar and suffers from depression. Please offer any helpful information you can share. I am his primary caregiver and I live 3 hours away from him. I go see him as much as I can, I went to his initial Dr's appt, I have went to both of his Chemo treatments and I call and text him several times a day. To top it all off, if being honest... I found out two weeks ago that he is also a hoarder. His hoarding issue is not material items, its trash: water bottles, newpapers, used paperplates... items that anyone else would just throw away. We have been to his house the past two weekends literally throwing everything out. He has two dogs that lay on the furniture and the house was absolutely filthy with dog hair, trash and mouse poop. Im very concerned about his immune system. We are still in the process of cleaning his house and still trying to work our full time jobs and care for him. He also has a wood burning stove in the house that has made the house filthy with suit. Please give me any advise you may be able to give. I can take care of the house and cleaning... I want to try and find something/anything to help him be more comfortable so he can eat and drink so he doesn't have to have the feeding tube placed. He will not allow the feeding tube. Thank you in advance.

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

He has to take in calories and hydration... regardless of taste and saliva. You either do it, or they'll enable you to do it with a PEG.

He's not an exception, there are a few of us that didn't have a PEG... That's not to say we refused one, or avoided it, simply wasn't prescribed in my case and for me that worked... For many others it doesn't... There's even a few recently that made it all of the way through treatment and then had to get a PEG.

He only has two options...

He either takes it in orally, or through a PEG... well there is a third option, and that's to not do either, but you basically don't live.

There is no magical answer to get through without calories and water... You do waht ever you have to do to survive.

Also on the environment, you are right, a clean environment is probably essentiial with a compromised immune system. He's at a point that he can't fight off any bug that he might get.

No easy answers other than he has to take in calories and hydration by any means possible.., there's no choice on that.

BTW, welcome to the forum, sorry I can\t give you more to help you through this...

I too am about his age, not a smoker...STGIII Tonsils HPV+, but clean and clear for 4+ years.. A total of sixteen weeks, four types of chemo, seven of those weeks with rads daily...

He can survive, but he has to live to do that..., living requires calories and hydration..., lots of hydration.

Best ~ John

CivilMatt's picture
CivilMatt
Posts: 2929
Joined: May 2012

Angela,

Welcome to the H&N forum.

I was shocked to find out I had cancer too, but here we are.  As was said he needs to stay hydrated and to get enough nourishment to fight this battle.  Whether by mouth or PEG doesn’t matter, it just needs to get done.  The meds he is taking should help, but if they don’t, then talk with his doctor or nurse about what is going on (he might not be), there are often other drugs to try.

If he doesn’t object to the house cleaning then have at it, the cleaner it is the safer he will be.

Best,

Matt

buster10
Posts: 2
Joined: Jul 2012

Hi Angela,

When I was having chemo and radaition for head and neck....all food even water tasted like bitter diesel...I knew I should eat but I also knew I was dropping down the amount I was taking in. My weight dropped from week to week and they said I would have to have a peg if I lost one more kilo. That night I saw Bear grills eating a horrible insect...and as he did he said "When you want to survive you have to eat anything" or words to that effect! It was a light bulb moment! After that I would line my food up and shovel it in,,,whatever it tasted like..."If you want to survive" you do what you have to...It worked...My weight stabilised. A year later I'm alive and playing competitive squash again and doing more than I ever did...in all ways

It's a choice thing...all you can do is offer him the choice...then I guess it's up to him?

Good luck! Rob   

Duggie88's picture
Duggie88
Posts: 535
Joined: Feb 2010

Angela

I can't add much more to what has already been said. Every new person who posts brings back old memories of my battle and one thing that stands out was family and friends helping me to push forward. It's physically hard on the fighter and emotionally hard on the supporting cast. It may get to the point when you just tell Dad how it's going to be and tell him you can fight and discuss it a few months down the road. When that time comes he will be thanking you.

      Jeff

AngelaLewis415
Posts: 9
Joined: May 2013

Thank you, I appreciate each and every reply! Although I am new to "cancer" and all that goes along with it... all the helpful information seems to be about the same. I was hoping to get some feedback and I sincerely thank each and every person for taking the time to respond to my post. I welcome all the feedback  I can get!! The more information and experiences the better!! xoxo 

longtermsurvivor's picture
longtermsurvivor
Posts: 1792
Joined: Mar 2010

Your father has a treatment team.  One member of that team is social services, who  likely has an office right where he gets his chemotherapy.  His living circumstances are a problem that needs discussed with them.  Were I you, I would start by calling to find that person or persons, have an introductory conversatio with them on the phone, then go in with him to meet with them.  

 

Pat

AngelaLewis415
Posts: 9
Joined: May 2013

I did speak (privately) with one of his Dr.s this past Tuesday (while he was getting Chemo) who said the they would set up a phych eval. for him but would call me first. I got worried that it would be too much for him to handle at this point in time, he has depression issues as well. They have not contacted me yet. I will call them again on Monday. The problem I'm finding that my dad does is... he knows what the Dr's are going to tell him he needs to do, so he says it to them first. He does know what he is suppose to be doing, he just isn't. He always says "tomorrow" Im going to try this or that. He has not eatten or drank for days. I keep giving him suggestions on foods that are soft, light in weight and that dont have much of a scent... he again says "tomorrow" Ill try that. Short of blind folding him, plugging his nose and me literally putting food into his mouth, I dont know what to do. Im at a loss... I dont want to see him hospitalized or worse. He asked today if the hospital could just hydrate him with fluids thru an IV when he goes for radiation. He just doesnt get that the food he is suppose to be eating is to repair his blood cells, nurish him and keep him strong. 

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Welcome to the list, but I am sorry you need to be here.  You are being a good daughter to be concerned and helping.  MY daughter's support was very important to me during my siimilar treatment (my radiation ended last week). 

I agree with what others have said that taste is not relevant any more.  I can't distinguish tastes any more...everything tastes bad or at best is neutral.  During the last 3 weeks I have living on Ensure, Boost and fruit-yogurt smoothies.  It takes ma a long time to get each of these done.  It's like eating and drinking is my full-time job now.  I will take a few swallows, take a break, take a few swallows, take a break, and keep going.  Ask doctors for your dad's guidelines for how many calories he should seek to take in each day and have him keep track and meet the goal if possible every day.

I have lost almost 15% of my bodyweight and I was not overweight when I started.  No PEG tube necessary, yet, but I will do it when and if they recommend it.  I hope to turn the corner soon and be able to eat and drink more easily. 

All of this is complicated by the other issues your father has.  It is important to check in with him often to ask how he is doing and get updates on eating and drinking.  My dad and my daughter check in every day and encourage me to eat and drink. 

This must be very difficult for you.  You are doing a great job.  Be sure to take care of yourself and get the support you need from your friends, family and neighbors so that you can be a good caregivers.  Not everything is in your control....remember that.   Just do what you can and believe it willl work out okay.

 

 

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

Sorry you had the need to find this site. Make certain your Dad understands if you do not continue swallowing during tx, he could lose the ability to swallow in the future. With or without a feeding tube, he should continue to exercise his swallow muscles. Keep his medical team well informed.  

AngelaLewis415
Posts: 9
Joined: May 2013

Michael,

Thank you so very much for your kind words! I check in serveral times a day with my dad. I think it is very beneficial to him and me. I live about three hours away from him and I am the closest member of the family to him. I went to both of his Chemo treatments with him and I have made it a point to know all his dr's and keep in touch with them for every concern I have. I called his nutritianist today, once my concern for him got the best of me, because of him not eating and barely drinking... she said his calorie intake should be 2400 per day and we both agreed, his is no where near that with one ensure a day. Her exact words to me were "he wont last on one ensure per day". His main Dr, his main nurse and the nutritionalist are getting together tomorrow to go forward and approach him. :) He has three more weeks of radiation left.

From a daughters point of view, I want to say "thank you" to you for doing so well with your eating/drinking. It has to be such a blessing to your family to know that you are putting forth the effort, even though food/drinks taste the way they do. 

I have told my dad that all I ask of him is his best and to be honest with me. He text me just a little bit ago and said he ate two egg yolks... that was huge news!! This is the first of any food he has even tried to eat in over a week! Whoot whoot... happy girl, I am! 

I pray for you and your recovery, and if nothing else makes you smile today, please know that your message truely made my heart smile. I would really like to stay in touch with you and be updated on your progresses and struggles. I think it would help me understand my situation with my dad. If you are on facebook, please friend me: Angela Mcclimans Lewis. If not, please please please stay in touch me thru this site. God bless you!!

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

Sorry...

I guess on this particular thread nobody *that I saw on quick glance including myself) mentioned that how many Ensure Plus/Boost, etc...

You are correct, he won't survive on one a day, neither did any of us...

Those like myself that drank Ensure, or even those with the PEG I presume, consumed 4-6 per day, if not more...

Each having around 350 calories if memory serves me.. That in itself would mean 7/day if your goal is 2400 calories/day.

Again, you do what you have to do to survive...

JG

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Angela, I would be happy to stay in touch with you.  I am not a very consistent Facebook User, but I will friend you and we can communicate that way.

My daughter lives 2000 miles away, so we communicate by phone and email.  She came home in April to be with me for the surgery and she is coming back again in a week to spend some time together now that my radiation treatments are complete.

There are many different nutrition drinks on the market, also in different flavors.  Ensure, Boost, etc.  Ensure makes a "PLUS" nutrition drink that has extra calories compared to the regular Ensure Nutrition Shake (360 calories per 8 oz bottle).  Ensure also makes a high protein shake that provides extra protein.  Protein is important, too.  My goal each day is to drink 3 or 4 Ensure Plus, 1 or 2 Ensure Protein Shakes, and some additional calories through a fruit smoothie, milk, yogurt, soup or other soft food if I can handle it. It seems like it is a full-time job to drink and eat this much because my throat is very sore and I sleep a lot. 

Feel free to send any other questions you might have.  I can answer them in between sips of Ensure.

Michael

 

AngelaLewis415
Posts: 9
Joined: May 2013

Michael, 

Thank you so much for contacting me on FB! Made my day!! My main question now is... how do I get my dad to eat at all and drink more? He is 100% against the feeding tube and he is only drinking one Ensure a day and not even a whole bottle of water a day. He says smells make him sick and food/liquid in his mouth make him gag. He barely uses the "magic mouthwash" given to him at the hospital. He wont use the baking soda/water mixture suggested to him to break up the thick "stuff" in his throat, he wont even use chapstick on his lips (because they are cracking), says he doesnt like the way it feels on his lips. I have been caring for him, but Im at a real loss if he wont help himself. I have been sad since this started, then the other night I was mad... and now Im sad again. Its like dealing with death and how a person goes thru all those emotions right after another. What could you tell me and/or him to get food and water in him? I just dont know what the "magic" words are that will make him understand that he has to eat or drink on his own or get the feeding tube (which he wont) or die. 

AngelaLewis415
Posts: 9
Joined: May 2013

Where does your daughter live? I think its great that she comes to visit when she can, Im sure this is hard on her... not being closer to you to be able to help. It makes my 3 hour drive to my dad seem like a drop in the bucket!! I hope you are doing well today, please write when you can. And since my dad wont listen to me, I will tell you what I tell him...Eat Eat Eat Drink Drink Drink :) Take care, I look forward to hearing from you. 

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

 I just dont know what the "magic" words are that will make him understand that he has to eat or drink on his own or get the feeding tube (which he wont) or die. 

I believe you already know the magic words, ...

"If you don't eat or drink, you will die"

There is no clear answer, you can only do what you can... At some point, he has to accept the responsibility and respond... No body can do it for him, no body can force him...

Unfortunate, but true...

Thoughts and prayers for the challenges you are having...

John

AngelaLewis415
Posts: 9
Joined: May 2013

My dad was given some "scandishakes" from the cancer hospital today. They are high calorie powder packs that get mixed with milk. Each pack has 600 calories in them and I am VERY HAPPY to say that he drank TWO of them today!!! 

 

He doesn't know it but I talk to his Dr's and nutritionalist every day... and they all met with him today after he was done with radiation and laid it out to him, no candy coating his weight loss and non eating and drinking. (He had no idea they were going to do this).  Whatever they said certainly hit home with him and I am soooo thankful! He has asked me to research the scandishakes and order some for him to continue to drink every day! Oh my goodness, the weight this lifts off me is amazing! I am so very very very proud of him for taking this step to help himself! He said they actually make him feel full, unlike the ensure which felt like a drop in the bucket. It is heartbreaking to hear your dad tell you that he is starving... even if it was his own doing. 

 

I had never heard of scandishakes, so if you think anyone you know could benefit from them, please pass the word along! Im very excited!!

 

xoxo

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Hang in there.  Tough times lie ahead but you and your dad will get through it.

 

Michael

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

Keep on his butt, he can make it through this, but he does have to participate...

Best,

John

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

discovered scandishakes while going through recovery, they're so good, expensive..I ordered through Amazon, not sure if insurance would cover, mine didn't, but worth a check

AngelaLewis415
Posts: 9
Joined: May 2013

I found Scandishakes thru www.familyotc.com They were $51.97 for a case of 24 (3oz each), plus if you spent over $99.00, shipping was free. :) Also, the order is expected to be delivered in 3 to 4 business days! Other sites I found were more expensive, shipping was outrageous and the processing times were 5 to 7 days before they were even shipped!

The Cancer Hosp is supplying my dad with them until his order is received. :)

Viilik70's picture
Viilik70
Posts: 57
Joined: May 2012

It warms my heart to hear how much you care about your dad because you will be a key role in your dads recovery. If it comes down to a PEG I would reassure him that it is temporary and he will recover a lot quicker by pumping calories through it and it will take a ton of pressure off of him to get the calories down and one less thing for him to worry about. PEG's are really not that big of deal when you get them. He'll just be a tad sore for a couple of days but it feels so good to have a full tummy in matter of minutes! Instead of trying to choke stuff down for a half hour! Also tell them all they have to do is put a siringe on the tube and draw out the saline from the balloon holding it in and it comes right out and they put a big bandage on it and it heals right up just leaving a 1/4" scar. I pray that things will start going better for you and your dad and keep up the good work! : )

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