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Scared- please read

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

I know that I may be a little out of line here since I myself was not diagnosed with cancer. However, about a month ago my dad was diagnosed with a "highly treatable" cancer in his sinus cavity and the doctors found the same type of cancer in one of his lymph nodes. My family has had a really hard time accepting this and I am terrifed as my dad begins chemo Monday June 3rd and two days later he begins radiation. He was told that he would only have to have 3 chemo treatments(one every 3 weeks) and 7 weeks of radiation (5 days out of the week).

As you may know, you always hear the negative side of cancer. Never or rarely the positive side, which I understand. I think my family is taking the news harder than my dad- he says he has a gaurdian angel (my 2 month old niece that passed last year) by his side and he's confident he will get through this. I am confident he will get through this too, but it does not make it any less scary deep down. I am consumed with this and I don't want to see my father in pain. I have been indirectly affected by cancer in my past and now that it is someone extremely close to me, I'm falling apart. It doesn't help that I wanted to be there for my dad, but I broke my leg a few weeks ago and now I am not getting around well. He just bought a new house and I can't even help him move or prepare anything. It's put a huge damper on things and just has me feeling super depressed.

Has anyone experienced this type of cancer? I know so many people have it worse and I am blessed that doctors think my dad will be cured and that it hasn't spread, but it hasn't lessened my fear and anxiety about what he has to go through. I was just hoping that someone can give me a little more hope or make me feel better (if thats possible) about this. The doctor said worst case he may have to have a feeding tube from the radiation if he is having problems getting nutrition from swallowing problems. That just scares me more. I know my dad is strong, but I am really having a huge problem with this. Any positive feedback is really appreciated.

As for those of you that are affected by cancer, no matter what stage, what type, where the location: I will pray for a quick healing for you and hope that those family members (such as me, a wife, another child...) can find some sort of comfort in knowing that you will get through this.

TracyLynn72's picture
TracyLynn72
Posts: 732
Joined: May 2013

and  your dad!  It's terrifying.  My cancer was also treatable, removable and after rads they said I was free to live my life.  THAT is a huge blessing.  But, did it make the word cancer any less terrifying?  Absolutely not.  I read the phrase somewhere "Cancer.  It's a word, not a sentence."    

 The good thing is your dad was told it's highly treatable and they are getting started right away.  THAT is a positive.  Once I found out that is what I had, I wanted to get on with it and get the ball rolling quickly.  My family was very upset.  My husband and older son took the news harder.  My younger son was positive and used it as a learning experience and now has decided he wants to go into nursing.  Prayer and my faith in God is truly what has brought me so far.  I'm on prayer lists literally around the US!  I totally believe in the power of prayer and I give God ALL of the glory for my healing. 

 Cancer can be absolutely the scariest thing to hear, but keep things upbeat and positive as best you can.  My doctors, nurses, techs, everyone has said to me that I've had the best attitude.  Well, I can cry my eyes out in the shower and let all that emotion out and then get ready to fight again.  I'm stubborn, so that helps me too :)  It sounds like your dad is a fighter and has the right attitude about things.  That will be very helpful.  Treatment can get tough.  There are days that just stink and you want to crawl in bed and stay there....you can't.  You have to dig deep and get it done!  He's strong and you'll find out that so are you.  You have a strength in you that will come out because you love your dad so much.

 I haven't had to have a feeding tube, but there are many on this site who have and can give you advice on that if the time comes.  This site is amazing and you will learn so much, get so much support, and feel encouraged.  I find myself on here several times a day! 

 Hang in there!  You can help your dad by just being there and continuing to love him.  He can do this!  There are times that are bad, but the good far outweighs that.  

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Tracy,

Thanks so much for the positive words.  It seems I am much stronger when I'm around my dad bc I have to be...but dealing with the first treatments coming up has been a challenge.  I can tell this is a wonderful site.  Before I posted my post, I was able to read what a lot of people are going through and how they are coming along.  So many people on here really have a good thought process while going through all of this.  I am glad that you have been able to keep your head up through all you have had to face, I'm sure it is not always easy to stay that upbeat when you are feeling down.  Do you know if there is anything that I could do that would help my dad through his radiation or chemo treatments?  I don't know how long they normally last and since I'm down with a broken leg I feel that I am not much help :(  Thanks again, it is wonderful to interact with people on this site.  Very supportive. 

TracyLynn72's picture
TracyLynn72
Posts: 732
Joined: May 2013

 

 

You are very welcome!  I'm still a newbie here and am learning SO much from these wonderful people.  They have all had great words of wisdom for you :)  Tell him to eat, eat, eat and enjoy it right now.  I had NO idea about the mouth sores or loss of taste.  I wasn't warned that could happen.  I would have packed on a few pounds before treatment as I had no idea the weight loss that would happen.  I'm down 20lbs since my surgeries in March.  

 

Keep reading and posting.  Knowledge is power! 

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

I think it's wonderful of everyone who participates on these forums.   I definetly feel more informed on what to expect so I can't thank you and everyone else enough for their input. Are you still going through treatments?   How are you doing now other than weight loss and other symptoms you previously mentioned?

TracyLynn72's picture
TracyLynn72
Posts: 732
Joined: May 2013

I'm 2/3 of the way done.  I break it up into chunks and think of it that way.  I was one week done, 1/3 done, 1/2 done, etc..  It helps me make little milestones and celebrate them :)

I'm actually feeling much, much better.  Side effects hit me very early.  Literally 15 minutes after my SECOND day of treatment, I had a salivary gland get "backed up" and my face started swelling back up.  I had to eat sour candy to make myself drool, and the drool hasn't stopped! haha  They are mostly worried about me losing weight to make sure the mask I wear still fights tightly.  It does because I still have swelling from my surgeries and this crazy salivary gland.  I've lost 20lbs and feel pretty good about it! 

Stick with this site and listen to all the people who are months/years out of treatment.  They keep me looking forward to new milestones.

Your dad is gonna kick this thing.  I just know it!  

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

That's a good way to look at things Tracy. I'm going to suggest that to my parents.  I'm having dinner tonite with them.   It's hard for me to talk about,  but I'm going to try.  Maybe it will put his mind at ease.  I'm sure that's what helps you move through treatment knowing you are achieving milestones.  One step closer to feeling better!  Can you describe what radiation feels like?  I hate asking,  but I just feel like the more I know,  the more it puts my mind at ease of that's possible.  I'm glad side effects for you are minimal! 

TracyLynn72's picture
TracyLynn72
Posts: 732
Joined: May 2013

 

 

and tell him to eat, eat, eat!!  No one warned me I could lose all sense of taste and that I'd have nasty mouth sores.  If I had known I would have eaten a LOT more before starting treatment...and enjoyed every bite!  :)

The small milestones have made things MUCH easier for me because I feel like I meet a "goal" each week.  My techs tell me every treatment "one day at a time, there's another one done" and that makes me smile each time!

Honestly, radiation doesn't feel like anything.  It's like getting an xray, you hear noises and you have to be still, but you don't really feel anything.  It's the side effects that you "feel" more than anything.  Tell him to always be upfront with his doctors and if he needs medicine...get it and use it.  No shame in that at all!  I use the magic mouthwash and it's fantastic.  I also rinse every hour or so with 1 quart of water, 1 tbsp salt, and 1 tbsp baking soda.  My trouble right now is eating.  I can't taste anything and so everything tastes like snot to me.  Gross, I know, but true. 

Let him know about this site, he might enjoy reading up on things, too.  I hope you have a very nice dinner and keep things upbeat.  He's going to have tough times, we all do, but he's going to come out of this stronger and well!  

 

 

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

It would have been nice to know that I'm sure!  My dad's doc said he could lose taste for awhile.  How long have you been unable to taste?  I hope that improves for you sooner the better! Thanks again, we will have a great time!  I told mom about this site and I'm going to tell my sister too.  I find it very helpful as I'm sure they will too.

TracyLynn72's picture
TracyLynn72
Posts: 732
Joined: May 2013

I lost my taste after the first week of rads.  Totally gone.  Nothing.  The mouth sores appeared at the same time.  I was like "what in the world???"  That's why I'm so glad I found this site.  Everyone is very encouraging, but also very honest. 

I hope y'all are having a GREAT dinner and evening together :)

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Wow, that's pretty fast.  I can't even imagine what that would be like and then trying to maintain nutrition at the same time. Hope your mouth heals.  Thx we had a great night,  them they returned to my place to watch a funny movie.  Makes me feel good to see him smile and laugh.  Of course I broke down for a minute,  which is disappointing bc I need to be very positive for him.  He knows he needs to do this.  

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

I'm glad that you found this board . Everyone on here , as you know are so knowledgable and so happy to help! I am a "Newbie" and can't offer a lot , but I can tell you that you don't feel anything during Radiation treatments . The worse part is having to wear a mask that they make for you so that you can't move your head . After the first few times it didn't bother me as much. Then after a few treatments it starts to feel more and more like a bad sunburn but they will tell you what to use for that. I started useing Aquaphor (you can buy it at any Drug store or Wal-mart.) at the very start of treatments and I never had any blisters or sores.I used it twice a day once after treatments ( they don't want anything on the neck before treatments)and again at bedtime. It feels very greasey and some on here didn't like that but it didn't bother me. If his gets bad there are some other creames that others used that will help more.  I hope this helps .

 

 

Peggy

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Thanks for the info Peggy! I'm going to write down everyones suggestions. Can you tell me about how long chemo and radiation take?  I'm sure chemo may be longer for some depending on strength... Thanks again,  everyone's so nice and willing to help.   I appreciate it.  Best of luck to you. 

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

any Chemo but seems every one is different on here . I had surgery and Radiation . I had 33 treatments , one a day 5 days a week . It was about 6 weeks . I am about 7 months out of treatments and have not gotten my salavia sp ? back and very little taste . I mostly eat soups and Ensure and for some reason Ice Cream with Dr. Pepper taste pretty normal.

Peggy

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Glad to hear some things taste normal to you!  Those are two of dad's favorites :)

phrannie51's picture
phrannie51
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Joined: Mar 2012

It's perfectly natural to be scared.....it IS scary.  We've all had our "blind sided" moment when the Dr.'s first uttered those words to us, or to loved ones.  The thing is, he WILL get thru this.  It's not a fun walk, but it most certainly can be done (as you will note from all the survivors here).  

I didn't have it of the sinus, but in the nasophranegeal area....behind the nose.  I too did 3 chemo's, and 35 radiations....and I had the feeding tube as well.....and I'm here to talk about it today.  I talked about it on here all through treatment. 

Can your dad hire a moving company to box up stuff, take it to the new house, and deliver it?  Once he's had his chemo, and the rads start he's not going to feel very good for a few days...and the rads can make us tired....but unpacking a box or two a day might be perfect....it helps to have something to do that's light and easy...it doesn't have to be done "today"....just a little per day, and on the days he doesn't feel like it, he can rest.

p

PS....He is going to be ok.....I mean that!!!

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Phrannie,

I read some about your treatments on here before I made my post.  I was very glad to see you replied to my msg since you had about the same amount of chemo and radiation.  Can you tell me what the feeding tube experience was like for you? I hate that you had to go through this (anyone who has been through it) and I hate even more asking that question...but I just hope it may ease my mind a little.  I'm 30, my dad is 64, but very healthy otherwise...

I talked to dad about a moving company (he could afford it), but he is just stubborn! ;)  He thinks we will have enough help with family and friends. I've tried to collaborate with my sister to pay for one, but dad will not allow it. 

It is a relief to see all the survivors on here and inspirational to read all of your stories.  You are all strong ladies and men.  I know dad will make it through it, I just have to stay on that positive thought trail...

By the way, is your cancer in remission? I really hope so.  I wish the best for you all.

phrannie51's picture
phrannie51
Posts: 3792
Joined: Mar 2012

 gone....hasn't been seen since last July or so Smile....I'm due for my 3 month Onc check next week....where I'm sure they'll set me up for my 9 month scan (I finished rads last June, but had 3 more chemo's after they were done, so didn't finish all treatment until the end of August). 

The tube is no biggie....honest.  I did have some pretty decent cramping the first 3 days or so, then it all subsided, and I just wore it like another appendage.  I actually never used it during radiation....but needed it exclusively after rads ended, and the new chemo began.  It is truly considered minor surgery....basically a large piercing....I too had mine installed before I started treatments and was glad I did, as getting one in the middle just kind of adds misery upon misery.  Glad to hear he's getting a port, it makes getting chemo....as well as extra hydration or transfusions (if needed) a snap....finding a vein during treatment can sometimes be a pain in the patootie. 

Trust me, you will find your place in the "helping" aspect....you might not be able to do the moving/cleaning part....but you're here, and you're learning from people who have gone thru this....the knowledge found here is invaluable.  You'll be the idea-person....the one who can say, "try this", "give this a whirl".....

Hard12find gave you some great advice for this part of the journey....he might as well start eating everything he wants to.  Added weight will soon be gone.  I only lost 16 lbs during treatment, but started out at 97, so tho my weight loss was minimal, I still came out pretty skinny.  Knowing I was going to lose my taste buddies, and my saliva.....I mentally started working on myself to quit eating for pleasure, and start seeing it as a job early on....started eating by the clock instead of only eating when hungry. 

The folks here will fill you in on nifty tricks and tips for getting thru this treatment....practical things that make it more doable.  They're brilliant....plus it's kind of like putting the heads of many Dr.'s and patients from across the country together, so if one idea doesn't work, there's another waiting in the wings.

Another great part of this board, you never have to wait long for an answer....there always seems to be someone here.

p

PS....your dad and I are just about the same age....I was 61 when I started treatment....you said other than having cancer he's in good health.....that's a real plus!! 

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

I'm so happy to here that you are cancer free!  That's great news.  Also a little relieved about the feeding tube,  although it still worries me a bit.  I really believe my dad will be strong like you and "force" himself to get the proper nutrition.  I admire that about you and so many others on this site.   I really want to encourage my parents to get on here.  I wish you the best for your appt next week.  Please let us know how it goes!  

Hard12Find
Posts: 208
Joined: Sep 2012

Cherie,

You are not out of line at all, we welcome caregivers and anyone needing advice.

Let me start with the good news, Most head and neck cancers respond really well to treatment, but the bad news is the treatments and side effects can be pretty brutal. I was diagnosed last August with stage 4A Squamous cell carcinoma with a primary tumor on my right tonsil, and lymph nodes affected on each side of my neck. Since your Dad is starting treatment soon I will give you my two cents worth of what is important right now....

1. Eat everything he can, high fat content, ice cream, protiens, he will likely lose over 30 pounds during treatment, food doesnt taste good once the taste buds are radiated, then there may be mouth sores, and swallowing difficulties. He needs to swallow as much as possible through out treatment even if it is just water, soft diet stuff like eggs, malt o meal, and smoothies.

2. Ask apout having a feeding tube installed while his immunities are still good, mine saved my life.....

3. Consider having a med port installed as chemo can be hard on the veins.....

4.  For you and the family.... Read the super thread at the top of this forum, Take a couple deep breaths and embrace the fact this cancer is very beatable. My treatments ended in November, and my first post treatment PET scan, showed no evidence of disease. On a side note an older sister was diagnosed almost exact same thing about 1 month after me and she too is now cancer free.

5. If his chemo drug is cisplaitan, maybe consider a hearing test, I lost about 40 % of my hearing during treatment..

I still have a comprimised swallow, and have to be pretty careful about what I try to eat, had horrible fatigue and depression after tratment, but about a month ago, I started to get some energy back, working on stamina now.

We will be here when ever you need us and I am sure many will chime in.

Jim

 

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Jim,

Thanks for your advice, it's nice to know that so many people on here are so supportive.  I forget the exact name of my father's cancer but I know that it was not staged.  The chemo doctor informed us that my dad will have a port, so that's a relief to know that.  I will be bringing this advice to his attention as I want him to do as many things as possible to bring back a good quality of life.  Thanks Jim!! 

CivilMatt's picture
CivilMatt
Posts: 3022
Joined: May 2012

CherieLW,

Welcome to you and your Dad to the H&N forum.

You are scared, your Dad is scared, the family is scared and I am scared with you.  It was only a year ago I walked in your Dad’s shoes, heard the same “you have cancer” and came up with a plan to treat it.  If it wasn’t for a swollen lymph node I would probably be toast as I did not feel a thing on my tongue.

The positive aspects are they found it, you’ve got a good plan to treat it and it is curable.  That means Dad will be around for years to come.

There could be pain, but how much is anybody’s guess.  There are lots of medicines for all kinds of pain; it just depends on how your Dad’s body reacts to treatments.

Broken leg or not, you can be there for him, even as a sounding board or his connection to the H&N forum where you can gather info to pass along.  We all can predict pretty close what will happen and when, all you have to do is ask.

You need to read some of our posts and get acquainted with what is coming your way.  There are many here who are currently starting treatments and many who have just finished.  The more you know, hopefully the less anxious you will be.  Don’t let the cancer consume you, you need to help your Dad in any way you can.

There will be tough times ahead, but somewhere around July 24th he will be finished and much of this will be in the past.

Be strong,

Matt

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Matt,

Thank you for the kind words, I guess I was one of those stupid girls that thought I would never have to worry about cancer hitting my family.  I will be there for dad in any way I can, but the moving, cleaning, painting part is where I want to help but am unable. 

I have read quite a few posts.  One of my favorites is one you wrote to a girl who was dreading going to her second chemo visit.  You named reasons to go to chemo and I want to thank you for that.  It lifted my spirits.  I actually set it in my favorites and plan on reading it to my mom later who is having a hard time as well. 

Best of luck to all of you on this site, you will all be in my thoughts and prayers for a fast recovery! Thanks to those keeping my dad in yours as well.

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Matt,

Thank you for the kind words, I guess I was one of those stupid girls that thought I would never have to worry about cancer hitting my family.  I will be there for dad in any way I can, but the moving, cleaning, painting part is where I want to help but am unable. 

I have read quite a few posts.  One of my favorites is one you wrote to a girl who was dreading going to her second chemo visit.  You named reasons to go to chemo and I want to thank you for that.  It lifted my spirits.  I actually set it in my favorites and plan on reading it to my mom later who is having a hard time as well. 

Best of luck to all of you on this site, you will all be in my thoughts and prayers for a fast recovery! Thanks to those keeping my dad in yours as well.

Skiffin16's picture
Skiffin16
Posts: 8097
Joined: Sep 2009

Welcome to the forum.., you are more than welcome here..., and you and your father do beling here...

Your MD's seems to be in the know, and have given you good advice and communication... Also the plan yo mention is fairly consistant with what many of us have went through... Oh, and even better, that many of us have survived and been diagnosed with No Evidense of Disease (NED) after the fact.

Myself, Phrannie and many, many others here are NED...

Myself, I'm going on four years post treatment clean and clear in about two weeks or so...

I was STGIII SCC Tonsil Cancer, also with lympnodes involved..HPV+.

Like your father, I also had nine weeks f chemo (three week cycles) of Cisplatin, Taxotere and 5FU (in a pump for four days). Then the seven weeks of concurrent, weekly Carboplatin and daily rads...

No feeding tube, but I'm an exception to the rule (myself and a few others)...

It's rough, but very doable... hydration and calories are huge as is a good attitude...., which sounds as you father has.

He's going to feel crappy some days..., about half way through rads, his taste and salive will go... you eat and drink to survive, not pleasure nor taste...you just do it.

If he's like me and many, he's going to hurt during that period... with no PEG (feeding tube), I just swapped over to all liquids... Ensure Plus, water, numbing meds, and other liquid meds...

Again, he will survive, and more than likely, a very high chance he will come out also NED...

Check the first thread on this forum...SuperThread, it has tons of excellent links and information...

Best,

John

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Thanks John, I'm glad to hear that things are looking up!  Thanks for all the kind words.  I'm terrified of the feeding tube, but I notice many on this site have had to have them and now lead normal lives.  Thanks for giving me some heads up.  Talking to you all is already making me feel a lil better about things. 

Sunshine60
Posts: 75
Joined: Apr 2013

I hate to see anyone new come on this forum, but am happy they found it.   I am a caretaker also, my husband is going through his tx at this time. We are half way through rads.... and its scary and hard to watch.  However, as many have said already, it is a curable cancer and attitude is a huge part of recovery.   Although i don't post often, i go here almost everyday because the others give me comfort.   I hope you will get that from all of us too.   Come here often!

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Thanks Sunshine. Trying to stay as positive as possible at this time!  I will be visiting! 

CivilMatt's picture
CivilMatt
Posts: 3022
Joined: May 2012

CherieLW,

Need tube, no tube,

No tube, eat food

Eat food, no taste, can’t swallow, must haste

Need tube, one tube, two tube, PEG tube, feed tube,

Use tube all is well, drip, drip, feel well,

Feel well all is better, pop the PEG now it’s over.

 

I did it twice, 2 PEGS (one for dessert).  After I finished I think I could have gone PEG free.

PEGless (now) in Oregon,

Matt

fishmanpa's picture
fishmanpa
Posts: 1120
Joined: Jan 2013

Awesome post Civil "Dr Suess" Matt  :)

"T"

phrannie51's picture
phrannie51
Posts: 3792
Joined: Mar 2012

You missed your calling Matt....

I'm still laughing out loud.

p

fishmanpa's picture
fishmanpa
Posts: 1120
Joined: Jan 2013

Hi Cherie,

Out of line? Not at all! Cancer affects everyone and everything around it and a caregiver's role is as challenging if not moreso in some ways than what the patient goes through. This site and the people here are wonderfully supportive and encouraging. They helped me prepare for my journey and have been there all hours of the day and night to respond. You're definitely in the right place.

I don't know how much I can add that hasn't been said. All I can say is the feeding tube thing is nothing to be afraid of. I made it through treatments without one... for a few hours anyway :)  Because of weight loss, issues swallowing and mouth pain, I had a PEG installed a couple of hours after I rang the bell. Other than being a little sore for a few days it was no problem. I'm glad they did it even though I didn't want it as it's made my recovery much easier. 

Positive thoughts and prayers for you, your family and your father.

"T"

CivilMatt's picture
CivilMatt
Posts: 3022
Joined: May 2012

Cherie,

I agree with Big ‘T’, we are all behind you, your family and your Dad as you all help each other on this journey.

Often a little humor helps to take some wind out of cancer’s sail.  Believe you I know how alone and helpless you feel.

Best always,

Matt

Skiffin16's picture
Skiffin16
Posts: 8097
Joined: Sep 2009

Matt, I love that you share my Abi-Normal humor, and can break wind with the best of us..., LOL.

JG

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

CivilMatt and Fishmanpa- Thanks for the encouragement and I agree that you have to laugh.  It's just still really new news to my family but believe me there isn't a day I don't try to laugh and make the best out of things.  I had never heard of a PEG tube so I looked into it.   How is that different from a g tube?  

Duggie88's picture
Duggie88
Posts: 550
Joined: Feb 2010

I can't add much to what has already been said. Just keep in mind we are all here to help you and your family get through this. One thing that helped me get through treatments and recovery, make sure your Dad has something down the road to look forward too that has nothing to do with cancer. It's easy to get totally wrapped up into treatment where each and every day seems to totally consumed with just the cancer battle. I needed something to take me beyound that.

Many of us on here are living proof that cancers butt can be kicked. Keep Dad positive and focused and he too will become a survivor.

Just my two cents worth.

      Jeff

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Jeff, 

Thanks so much for the kind words and support.  I know dad will make it through this.  I'm very close to my parents,  just hate seeing loved ones go through this as we all do on here :(  I reached out to this site and I'm glad I did bc I really was scared about dad starting chemo in 2 days, but I feel a little more informed,  which makes me feel a little better. If you don't mind me asking,  what type of cancer were you diagnosed with and what was your treatment plan like? Thx again! 

Duggie88's picture
Duggie88
Posts: 550
Joined: Feb 2010

Mine was at the base of my tongue Squamous something. I never really cared what it was called I just wanted to get rid of it. December 18, 2009 they sliced me from ear to ear and took out part of the tongue, my epiglotis, my uvula, and some lymphnodes on the left side of my neck. The surgeon was so sure he got it all he only wanted me to do 30 radiation treatments. I finished radiation and started my new life March 30, 2010. Now I am spending the kids inheritance.

Your Dad is lucky to have such a loving daughter. Again, never be afraid to ask  questions. I found this site after my operation and never really got involved until a few months back. I've never met anyone from the site but I feel like we are all family with one common goal..............TO KICK CANCERS BUTT.

Enjoy the day

      Jeff

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Wow,  you really are a strong guy!  I'm glad to hear that you are doing well and I hope you continue to do so.  I hate to hear that treatments are so expensive.  I am completely in the dark with how expensive this will end up being.  I just know I will do whatever it takes to make sure dad stays on top of things. Thanks again for the info,  if there's anything anyone else or you would like to add that you think may be helpful feel free to msg me or reply.  

Dad is lucky! He has a very loving wife (my mom) married almost 36 yrs.  He of course has me and 2 other daughters that care immensely.  I hope he knows I'm always going to be there and make sure he has the best care possible.  He helped make me the person I am today. .  I think it's awesome that everyone here is like a family,  I have felt very welcome since minute one. 

yensid683
Posts: 239
Joined: Apr 2012

You've found a good site for support.  I honestly think that caregivers have it worse than we patients, they worry more about us then we do.

I was surprised in March of 2012 to find that what I though was a sore throat turned out to be SCC base of tongue with left lymph nodes involved.  My wife was beside herself while I was confident that I'd be fine, sure, I would not feel all that chipper and it would take time, but I was very positive that I'd get well.  It sounds like your dad is positive as well.

My two cents on my experience

Infusion port - I had one and it made the issues of iv's and blood tests so much easier.  No fishing for a vein in my arms or hands.  Be aware that there is a potential side effect from ports that is not always communicated to the patient.  There is a risk of deep vein thrombosis with a port.  Watch for sensitivity in whichever side they install it on, I had a swollen neck and what I thought was a sore muscle, turned out to be the clot.  it is rare side effect

Hydration - treaments are killing off the cancer cells.  The body will break down the dead cells and then flush the residue through the kidneys.  Lots and lots of water, no matter how uncomfortable it might be facilitates clearing the by-products and keeps you feeling fairly good.

Feeding tube.  I would not have made it without mine.  It is an easy procedure, tender for a few days and takes some getting used to, but absolutely essential to maintain good nutrition. 

Swallowing.  Keep at it, swallow whenever and where ever he can.  It will hurt - doctors will prescribe pain medications, TAKE IT, he won't become addicted.  The swallowing muscles can 'forget' how to work.  I kept swallowing and endured my wife's well intentioned nagging to keep swallowing.  Without it, you can wind up having to have the tube permanently.

Food.  Eat the 'un-diet' while he can.  Proteins, fats, calories, calories, calories.  His body will need protein reserves to heal the tissues that radiation will impact

Infection - while on chemo most people's immune systems are comparable to a new-born.  An infection that you or your siblings would easily deal with can be a big issue for your dad.  Watch contact with others, watch for higher temps.  Check with his doctors but for the most part, anything over 100 or so is something serious. 

Attitude.  is EVERYTHING.  He sounds positive,  he will likely need emotional support but will likely not ask it.  It will be up to his caregivers to 'be there' for him, even if he never asks, he will need 'hand holding' from time to time.

He already sounds like he has a good support system with a loving daughter, even if she is a peg leg at the moment. 

Best wishes.

Peter

 

BTW, my cancer was squamous cell, stage IVa, I had induction chemo, then concurrent chemo (weekly for 8 weeks) and 33 radiation treatments, daily for 7 weeks, and a neck dissection for the lymph nodes in October, and my cancer is gone. Some side effects that will improve over time but I'm back to my 'normal' life, no evidence of disease, and a very good outlook!

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Thank you Peter. I truly appreciate all the helpful info and kind words.  My dad does have awesome support and I'm glad my parents are getting ready to move which is something he truly looks forward to.  I think that will occupy a lot of his time.  He typically is a very busy man!   The new house he bought had a small pond which my dad enjoys.  I fish with him so at least with my broken leg I know I can do things like that with him if he's up for it.   

 

I'm so happy to hear that your cancer is gone!  That gives me a new hope every time I hear that. Glad to hear you've returned to feeling normal for the most part!   Best wishes to you as well

. :)

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

Cherie

Welcome to you, your dad & family.  I can't add much to what my fellow survivors and caregivers have said.

And you've already figured out how to read the older posts which is what I did when I was new 2-1/2 years ago.  Your dad will get thru this and you will be a huge help by relaying things to him and staying in touch with all of us if you/he have questions.

I am a huge fan of the feeding tube -- I truly think it saved me hours of anxiety worrying about how to keep eating and drinking enough to stay alive.  So tell your dad not to fear the PEG !!  It was a lifesaver. Once he learns how to use it, it will become second nature and literally become a part of his every day routine (like Phrannie says).

For most of us.....99% probably, the feeding tube is TEMPORARY and can be removed after treatment is over and recovery is well underway.

Definitely check out the SuperThread.  It is filled with lots of tips on getting thru the treatment.  It covers just about anything that might cross your dad's path in the next few months, and if you can't find the answer there, just ask us.

Sending hugs to you and your dad's way that he may have an easy journey.....(and Phrannie will put him in her pocket for safekeeping which is a great place to be)

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Thanks Ingrid.  It touches my heart that so many ppl on here have created such a strong support system.   Also Thx for the positive info on the peg tube.  I can see how staying positive can work wonders!  I hope that you are doing great and hugs returned!  

 

P.s. I will check out the super thread by the way!  A few of you have mentioned that.  :)

D Lewis's picture
D Lewis
Posts: 1540
Joined: Jan 2010

What everybody here has already said...  Your Dad will survive this.  I was diagnosed as a Stage 4, and I'm still around and doing well at my three year anniversary.  I had the PEG tube, and needed to use it every day.  It was easy to get used to, and worked very well for me.  Shortly after treatment ended, it was removed.  Now I have a neat little 'second belly button' scar to remember it by.

Remember to breathe.  Try to relax. And take it one step at a time.

Deb

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Gosh I'm so late getting on here but I echo what all the others have had to say. I'm sorry you found the need to join us but welcome welcome welcome! We are here to help but most of all to show you that this is so doable!!! I know you're scared, trust the word cancer scared the crap out of me! Mine was (notice the word WAS) stage IV laryngeal SCC HPV negative. I had 8 erbitux treatments which is a form of chemo but not exactly the same as other chemos and 35 rad treatments too. I won't lie to you, it's tough but again so doable. I also had a feeding tube and like Phrannie said, peice of cake! A little crampy/achy for a few days but totally worth it. Unlike Phrannie I got mine in the middle of treatment, I tried to get it before treatment started but my oncologist is so conservative and had hopes I wouldn't need it. I too started out really thin and I only lost about 13-14lbs but for me that was a ton! I started out at 100lbs. Better to get the tube up front.
I dont know where your dad is located and how far from you but you being able to pass on all this info to him will be the most valuable help he will have and need.
Stay with us and ask us anything you need to, no question is off limits.
Take good care,
Billie

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Thanks for the positive feedback Billie! I appreciate everyone's input!  I'm learning a lot and I'm glad to hear that the feeding tube wasn't as big of a deal as I thought.  Hope that you continue feeling better and stay that way.  I'm going to pass this info along to the family.  

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Thanks Deb, I'm trying to work on that relaxing thing.  

My dad thought he had a sinus infection that wouldn't go away for a long time.  When he did finally go to the doc they tried several antibiotics and nothing.  I hope me just putt8ng that out there it will encourage others to get checked out if they think something isn't right or it doesn't go away.  Im trying to look at it positively,  they caught it early. Congrats on your anniversary!   3 years cancer free is great!   I will pray that it stays that way!  :)

 

D Lewis's picture
D Lewis
Posts: 1540
Joined: Jan 2010

You have a question buried somewhere above, asking what the difference is between a PEG Tube and a "G" Tube.  They both perform the same function, i.e. they both supply liquid food directly to the stomach.  PEG stands for "percutaneous endoscopic gastronomy" which means installation of the tube is a simple outpatient process where they send an "endoscope" (and then the tube) down the throat, and all the way into the stomach.  Then they make a small incision, and pull out the end of the tube, so that the end of the tube sticks out through the tissues and skin (percutaneous).  The tube stays in place because it has a bit of a balloon, or a flare at the end still in the stomach.  Removal is a simple process of de-inflating any balloon stoppers, and just jerking the tube out.  A "G" tube, or gastric tube is similar but requires surgery to install and surgery to remove, and stitches.  Both tubes have the little connector on the outside end, through which a syringe, or a gravity feeding bag, or a pump feeding bag can be connected. I had a pump on mine.  Made it simple.

Keep those questions coming.  That is what we are here for.

Deb

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Deb, thanks once again for giving me valuable information.  I am so glad I found this site,  you all have been through it and it's so nice that you can help others through it too.  How long do people typically have to have a feeding tube?  Is it just temporary?  One thing that I love about my dad is that he had handled this news better than the rest of us.  I don't know if it was that way for you,  but I really admire how strong he is.  I know that it won't be cake,  but I have more faith that he will recover quickly. . Thx again :)

phrannie51's picture
phrannie51
Posts: 3792
Joined: Mar 2012

limit on the tube.  Generally, it stays in until a person is able to get enough food in them per day to either maintain thier weight or gain some after treatments are over.  I had mine in for 7 months....the last 2 of which I never used it.  I wasn't gaining weight, tho....so they kept it in (it didn't make sense to me, tho....since I wasn't going to use it for food, when I could swallow fine....I think they thought I'd eat more if they refused to take it out....blackmail Laughing).....

Some folks have a lot harder time getting food down after rads, tho....the one thing that is truly consistant with HNC is everybody's experience is a little different.....

p

Skiffin16's picture
Skiffin16
Posts: 8097
Joined: Sep 2009

Cherie, nobody recovers quickly....

It's a battle that none of us have ever encountered before..., and survived, LOL.

My saying, and don't take this wrong..., "If the cancer doesn't kill you, the treatment will come close"... It's very rough, but also very doable and very survivable.

Don't get wrapped around the PEG.... I didn't have one, as others haven't either... I survived and never suffered at all by not having one... Others swear they wouldn't have survived...

My advise, do what the MD's prescribe..., they are the pros..

There will be plenty of other things that will come up that are much more important and that will challenge you more...

Best,

John

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