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Hi - I am new and would like to see how others are doing that were diagonised with cancer

patriot1
Posts: 2
Joined: Apr 2009

Hi,

I have been searching for a while to find a place to talk to other people who have been going through or have gone through chemo and radiation for head and neck cancer. Seems as thought most people on here have not talked for a while - if there are other survivors or others going through this please answer _ i have many questions and would like to talk to someone.

Thxs

bogey4on17's picture
bogey4on17
Posts: 6
Joined: Apr 2003

Good morning, Patriot1!

I'm a survivor of Stage IV H&N cancer; 2 surgeries, 38 sessions of radiation and, everyone's favorite, chemo. To cut to the chase: I've been to the rodeo. Would be happy to talk and answer as many questions as possible. You are not alone although, as you said, it seems not a lot of us are visiting this site with any degree of regularity.

The good news with H&N is that it's survivable. Treatment is miserable and debilitating, more so than with most cancer treatment, but this damnable disease can be beat. I'm 9-years out now and, according to the accuarial tables, had a 0-25% chance of surviving 5-years. But here I am, thriving, and enjoying life to its fullest. Life is a little different than pre-cancer but, here's the point, I'm alive and living large!

Be happy to talk any time. Here, online, on the phone, you name it.

All my best,

Jeff
anaerobic3@msn.com

train-nut
Posts: 101
Joined: Jun 2008

Hello Patriot1,

Lots of survivors visit this site and are happy to reply to questions. Please ask; we will do our best. Good health to all, Rich

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

There are many survivors of Head and Neck cancer on the boards. Many of us are posting on other discussion topics. I had difuse type B-NHL 6 years ago in my face. Went through the CHOP+R and 25 radiation treatments. And I am happy for each day I am here. If you have questions just ask and someone will answer. Let us know the type of cancer and the locations as that will help. And what treatments you will be going through. Slickwilly

RoseEm's picture
RoseEm
Posts: 32
Joined: Apr 2009

I had a rare type of cancer - no celebrities wearing ribbons for me! But I'm here and my motto is, "Because of radiation, X-rays and CT scans, I glow in the dark. Because of all the MRIs, I stick to the refrigerator. Because of God, my family and my oncologist, I'm a survivor."

The first thing I would say is when you are fortunate enough to hear the glorious words, "you're cancer-free," your life is changed. I call it my "new normal," because I've had repercussions from radiation and chemo. Would I change anything - even after knowing I was very close to dying at one point? No. But it's hard and I'm not always cheery and I sometimes get weary of the changes that the "new normal" has wrought. I'm hoping other people feel the same.

I try to be patient with people who ask things like, "Have you figured out God's purpose for you now that you've survived?" I lost a lot of weight and people, innocently, remark, "Man, I need YOUR diet!" Obviously, they are not close friends and don't know - but I've learned NEVER to say anything that closely sounds like that to anyone!

Ask away - everyone has had a different experience.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I am glad you survived and sorry about the side effects. And odd remarks seem to be part of our survival package. I just loved those people that asked "how are you doing" and walked away before you can answer. Even the ones that say "you look great" when I am a total wreck inside. Would I change my treatments? No. God did not give me cancer and has not helped me win the lottery. Dang. But I am sure glad I have my faith and the strength it gives me. And I never got the cancer free speech. I got the "we are hoping for the best" speech. And the 5-15 year lifespan with the 70% chance it would come back things that I was sorry my wife had to hear. 6 years out I deal with pain on a daily basis and am now on disability. But I am alive and try to get the most out of each day. And this Easter Sunday my three daughters will be home for their free meal ha ha. What more could a guy ask for. Slickwilly

patriot1
Posts: 2
Joined: Apr 2009

My soft palate cancer was diagnosed last Sept (day before Labor Day), since then as you all know have been sleepless nights and many visits to the radiation departments (35) and to Chemo (4), only 4 because I my body I guess didn't take to the Chemo. I did not have to have surgery all has been with radiation and chemo, which ended on December 8th. I spend most of my December and january in bed and trying to recoop - but February I was in the hospital the whole month (glad it was a short month) with some kind of "bug". March was a very long month of everyone telling me to eat, eat, eat - just what I wanted to do but with extreme dry mouth every bite has to follow with a sip of water.

I am not complaning, as I know I got off easy compared to many others, I would just like to hear some folks talk about how it has been for them, when do things start to get better. My PET Scan is due at the end of April, and I guess thats when they let you know you are "cancer free" for the time anyway. - I am thinking of this all the time, and I believe is is driving me to depression. But just hearing from you folks makes me feel better. Anyone come up with any ideas about dry mouth, and neck pain?

Thank you all for getting back to me and please let me know more about your experiences, I am hoping you have suggestions, and comments.

Thanks a bunch.
Mary
lossofdown@aol.com

TIM_WWJD
Posts: 38
Joined: Jan 2009

Hi Mary
I havent been o in awhile as the chemo I ws going through hit pretty hard and I haven't felt like doing much.
I am only half way through my treatments for tonsil cancer and I know what you mean by the struggles every step of the way. I read and hear about how well people got though some of the steps and was suprised by how my body reacted. You will find that everyone and every treatment effects everyone differently. The one thing I see from your post is it appears you did not have a feeding tube. It is probably late in your recovery but to anyone out the early in treatment I found the tube saved my butt several times. The latest was when I wasn't eating right and getting enough fluids I developed mouth sores. It got so bad I couldn't eat or talk without burning pain. My tube got me through that. All this to say to you Mary that no matter how difficult it seems now it will all pass. Listen to your family, friends and care givers because they are giving you good council and right now you can't always count on your own judgement.
Good luck and God bless.
Tim

RoseEm's picture
RoseEm
Posts: 32
Joined: Apr 2009

I, also, had a g-tube and am surprised that, assuming you had radiation on your soft palatte, you don't have one. I, quite literally, got to a point where I could not swallow anything - even liquid. I had it for about 10 months. I had to have speech therapy to try and get my throat muscles working again. It wasn't 100% successful, but we weren't expecting that. I just wanted off the tube. Didn't hurt or anything, it was more of a nuisance as I started feeling better (my tube was so long it could have reached from Dallas to Houston - which is a long way).

I was hospitalized twice - both 3-week stretches. One of the things you learn is that the radiation and chemo quickly weakens your immune system. One of my stays was for a "simple" urinary tract infection. It led to my system going completely out of whack - I remember having back spasms so bad I wanted to pass out. I had so many bags hanging off the IV that it looked like some bizarre Christmas tree! The second stay was with pneumonia - and that almost killed me. I don't remember about a week of it (ICU).

Some things I tried to do was (1) GET UP every day - even if you spend the morning hung over the toilet seat, (2) walk as much as you're able - down the hall, down the sidewalk to the street, (3) eat as much as you can tolerate and then try a little more, (4) keep a journal - don't bottle up your thoughts, (5) don't feel you have to "put on a brave face" for friends and family if you really don't feel good. It is perfectly OK to say, "I don't feel like visitors," or, "I'm really sorry, but I need to rest now."(6) ACCEPT HELP. It's not a weakness and makes your family/friends feel like they are contributing something to your fight.

I had mouth ulcers, thrush and still have really, really bad dry mouth. I use Biotene products (order online). Also chew gum (if you can - early on, the "spiciness" of gum hurt like the dickens). They recommended lemon drops, but I was never able to tolerate them. I still cannot tolerate spices because of the pain and my diet is very, very limited. My weight is a constant source of concern for me and my oncologist. I am never without a water bottle. I've found yogurt to be soothing and also drink a lot of milk - it sometimes eases the dry mouth better than water.

I don't know about you, but my relationship with my oncologist is outstanding - and he is my biggest cheerleader - and has the broadest shoulder to cry on. I often talk to him about depression and anxiety. There are so many things I don't feel I can share with my family, but he's someone who knows where I am, how I got here and lets me talk as long as I need.

Don't freak if your PET scan shows anything - my last one did, but the follow-up MRI showed it wasn't the tumor, simply an infection. I don't know if or when you lose the fear of every little symptom that seems the same as before you were diagnosed. I'm having a routine MRI in two weeks, and, yes, I'm nervous.

By the way - be very, very kind to your caretakers. It's unbelievably hard for them, too. At least there were days I had morphine - they had to watch me sob from pain and not be able to do a thing. Harsh words can be exchanged - but realize that the journey through darkness is terrifying for everyone. Apologize - give hugs, squeeze a hand, tell them you love them. Mostly, I go back to getting used to your "new normal."

No one here is going to tell you it's easy. As my doctor said at the very beginning, "You are about to go through the worst days of your life. You will be hospitalized and you will hate me and the radiologist. You will wish it was over - but I'm here to tell you that I'm not planning on simply extending your life for a while. I'm here to get rid of this completely. I cannot do it without your help. Always remember that together with your family, we are going to get you through this." And we did.

naturenaw
Posts: 26
Joined: May 2009

I'm new to this forum too and I am a 4 year tonsil cancer (stage 4) survivor. For the dry mouth, the biotene products work well, also chewing orbit sweet mint gum (the sweet mint isn't as "biting" or stinging as regular mint). Walmart here carried the biotene stuff. Also, drinking water with everything also helped. I keep a water bottle by the bedside for the AM when my kids wake me up and want me to talk right away and yet my lips are sealed shut and crytallized dried up from no saliva and no water all night. I just moisten up and am ready to go! I drink lots of water with every meal. For neck pain, mine did go away. I will have stiffness lots now but would not call it pain at all. I will hope this lessens for you over time.

Keep on praying and I do think every day becomes such an incredible gift you receive! I remember this quote (from a kid's movie I took my kids to, Kung Fu Panda) : yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the "present."
I keep telling myself to enjoy the "present" each day and Thank God each day he has given me.

About all this stuff driving you to depression, I have felt that way myself and that is why I just looked online and found this place. Just reading a post from someone else to you just now made me realize there are other people out there that are going through the exact things I am too!

I hoep your PET scan came out OK.

Christmas
Posts: 92
Joined: May 2005

Hi, Patriot1:

I completed my treatments, radiation and chemotherapy, five years ago. Haven't posted for a while because I don't have any new advice to give. Just like childbirth, I've forgotten the pain and moved on with my new life. It's not better than my old life, but it's still very good because I appreciate every day more. Every day without pain is a gift. Every new taste re-discovered is the best pleasure.

What are you going through? This site has the best suvivors and supports.

RonInScotland's picture
RonInScotland
Posts: 3
Joined: Jul 2008

In 95 at 38 yo I was told I had Nasopharangeal Cancer PLUS 4 tumours in my neck - how does a Scotsman get Nasophar? Must have been the fried rice!!!!. I had 38 radios and 4 chemos - methotrexate. Move on to today and yes Im still kicking - HARD.

Yes it was tough - dripping neck, no hair at the back of my head, mouth ulcers, dry mouth (still got it), poor sense of smell, poor taste buds - Im a Catering Manager, no facial hair under the neck and little on the face - I used to have a beard,severe constipation with the morphine I got cos of my mouth that needed enemas to move it but I AM ALIVE and not complaining. Never give up hope or your faith in your God whoever that may be. And I still havent met another Scot who has had it.

Good luck to all in your fight and just remember all the hard times are for you to get better and be like me 14 years on encouraging others.

Ron

RoseEm's picture
RoseEm
Posts: 32
Joined: Apr 2009

Ron, I'm relieved that you're telling your story 14 years later - because I'm a 1-year nasopharyngeal cancer survivor. (And everyone involved in my case wondered how a caucasian female in Texas got it!)

I had many of your after-effects. My hair has revived, but my tongue and swallowing problems remain, so low weight is still a huge concern. It's a good thing I wasn't a caterer - I would be in torment every day!

I remember what my doctor said just after the diagnosis, "You are getting ready to go through the worst experience of your life. At times you will hate me, but I am here to get rid of this - not just extend your life for a few months. Remember, at the very worst times, you WILL get better." He didn't lie about any of it.

Hondo's picture
Hondo
Posts: 5887
Joined: Apr 2009

I am glad to hear you are getting better and yes the worse is over, your body will continue to get stronger and your health will get better. As far as the weight you are young so your body should adjust well and start to gain again.

My NPC came back on me for a 3rd time now the last time about 3 years ago; I treated it the first two times with radiation and chemo but the 3rd time we just used natural herbs and high alkaline foods. The affects of the 2nd time treatment has left me barely able to open my jaw because the doctors did not know much about NPC and what all they needed to do to help me keep the jaw motion going. I have the normal side affects like headaches, pain in the neck, numbness in tongue, deafness in my right ear, and lost of memory, but all in all I am glad that God has extended my life because my Son is getting married May 24 and I will be able to be there for him.

One thing you can do to help your body so that the NPC does not come back is to stay away from process sugar products, sugar is one of cancer main food source, eat a lot of fruits, the natural sugar in fresh fruits helps the body to fend off radical cancer cells. Eat a lot of Veggie and mix the colors, green, yellow, reds, all are very good for your body. Don’t eat your fruits and veggies at the same time, they don’t mix well eat one or the other at each meal.

Most of all Pray asking God each day to give you strength and guidance and have as many people praying for you, I will also add you to my list. God bless you always.

RoseEm's picture
RoseEm
Posts: 32
Joined: Apr 2009

Thatnks for all the insight and advice.

Right now, I'm in a "Catch-22" cycle with my eating/weight. I want to eat, but even after months of therapy, it's been determined that my swallowing has come back as much as it's going to and there are whole categories of food I physically cannot eat. Spices absolutely set my tongue and throat on fire (not good when you live in Texas where Mexican food rules). I've been known to down two large glasses of milk in under two minutes! Therefore, when everyone else is chowing down on a porterhouse, chile relleno, tortellini - I'm sipping on my Ensure. I basically stay alive via supplement drinks, yogurt and smoothies (mainly banana).
Funny, I just had this conversation with my radiologist two days ago! He fears I am anorexic, but not in the "normal" way. He thinks (and I do agree) that I'm so tired of being disappointed when I try again to eat, that I just don't do it. I treat eating as taking medicine - I try to remember to do it!

I lost hearing in both ears (about 60%). Was fitted with hearing aids a couple of months ago and we're still adjusting them. I miss hearing the true sound of my great-nieces voices and birds, but don't really mind not hearing the leaf blowers!

I guess I sometimes really struggle with what I call my "new normal." There are things I won't do again and I feel like I'm being ungrateful when I miss them to the point of tears. I have been so blessed with caring doctors who have gotten me this far. I'm guessing I will get used to the new normal, or reality, and I try always to see the big picture. Sometimes, it just gets a little cloudy.

Your thoughts and prayers are very much appreciated. I also pray for you and eveyone on this board who have traveled a very long, long road.

Hondo's picture
Hondo
Posts: 5887
Joined: Apr 2009

You are a strong young lady with a lot of willpower, keep up the positive attitude. I was almost 4 months the first time before I could start tasting food again and little by little it just got better and better.

You are right we all have to get use to our new normal; and I find it hard for people who don’t understand cancer let along a cancer I can pronounce to know what I have to deal with each day. But as time goes on and the affects of the radiation and chemo ware off you will get most of your ability back, accept for the hearing.

I have lot about 80% hearing in my right ear and about 60% in my left. But I find that the lost of the hearing is not so bad as there are a lot of things I don’t like to listen too, so all I do is pull the hearing aids out. I find this a good way for just me and God to get together and spend some quality time with each other.

As for your swallowing believe me I know where you are coming from, all I could do for months was to barely swallow water, but it too will get better, just like anything the new normal will be to drink a lot of water with each meal.

Keep a strong attitude and keep God by your side he is the best healing medicine in the World.

God bless you

souplady's picture
souplady
Posts: 10
Joined: May 2009

Hi ,
i having been reading the posts and find yours of interests in regards to holistic type of treatments you mentioned in your last treatments. I would love information as to where you found it so I can do a bit of research on possibilites for the future. I was surprised when I received my diagnosis since I live a very healthy life in regards to what I eat, no smoking, drinking and I only eat fish and some chicken and mostly natural foods so who would have guessed I would get this cancer. Any infor would help.
Thanks

Hondo's picture
Hondo
Posts: 5887
Joined: Apr 2009

I was a Vegetarian for 15 years before I got Cancer; I did all the right things and ate all the right foods. The problem was not in what I ate but in the environment all around me, I had no control of it. As a Vegetarian it gave me the added help I needed to fight the Cancer as many times as I did. Three things are needed to fight Cancer and win, first is Faith in God, second is a strong will to survive, the third is the right herb combinations. I am more then happy to share what I did with you if you like, my e-mail is biblefortruth@aol.com

souplady's picture
souplady
Posts: 10
Joined: May 2009

Hi ,
i having been reading the posts and find yours of interests in regards to holistic type of treatments you mentioned in your last treatments. I would love information as to where you found it so I can do a bit of research on possibilites for the future. I was surprised when I received my diagnosis since I live a very healthy life in regards to what I eat, no smoking, drinking and I only eat fish and some chicken and mostly natural foods so who would have guessed I would get this cancer. Any infor would help.
Thanks

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Please read this previous post and discuss with your Docs. It may be interesting.

http://csn.cancer.org/node/167887

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

that's a load of bunkum about sugar - herewith info from McMillan Cancer in UK

"What evidence is there to suggest that cancer patients would benefit from reducing their sugar intake and use other sources for calories (e.g. fat)?"

I, for one, found their answer very informative. Thanks Macmillan. Here it is:

"The study of the effects of diet on cancer is a growing area of research. But at present there is still only a small amount of studies that are carried out with the same strict research guidelines, which other areas of cancer research tend to follow.

Unfortunately this often leads to differing views amongst professionals in this field.

Research into diet tends to look at two separate areas - cancer prevention and treatment once someone has a cancer diagnosis. There is evidence that diet can affect our risk of developing cancer. However, once a cancer is diagnosed there is no clear evidence that diet can influence how a cancer grows

Sugar is needed by every cell in our body not only cancer cells. Our bodies need glucose, or simple sugar, for energy.

Although cancer cells need sugar there is nothing particular about sugar that “feeds” cancer cells any more than sugar feeds all cells in our body. By cutting out sugar you are potentially depriving healthy cells from getting the sugar they need.

Sugar comes from various sources including simple sugars, fat and protein. So even if you cut every bit of sugar out of your diet, your body will make sugar from other sources, such as protein and fat. Usually it’s a good idea to limit the amount of simple sugar you eat as this is not good for general health.

Most people can get all their sugar from other sources like fat and protein. However, some people with cancer may not be able to do this. So for them simple sugars may be a good way of getting the energy their body needs."

I believe this to be a well considered and rounded response, and found it useful to read each paragraph a few times to make sure a) I wasn't missing anything, and b) I wasn't reading anything into this that isn't actually there.

Clearly, if someone has details of scientific, repeatable, evidence-based, double-blind, peer-reviewed trials on this subject then this would be a good place to let us know - whatever the results show. Otherwise, I think this is about as good a reference point on the subject as we're likely to get right now.

Hondo's picture
Hondo
Posts: 5887
Joined: Apr 2009

There are two types of sugar, one we get from the natural foods we eat, this is the good stuff that our cells need in order to build new cells and stay strong. Also our bodies make sugar from food with a lot starch again this is again the good sugar.

The problem comes in the man made form of Sugar that is called process Sugar. I was doing a PET scan a few years ago and the doctor had to inject me first with a low level radiation solution. I said to him that is a lot of radiation you are injecting into me, he laugh and said this is not all radiation. This is a micro size bit of radiation mix with sugar water, I ask him why, he told me because the sugar carries the radiation with it and the Cancer cells are attracted to the sugar. I could only wonder as to why the cancer was attracted to the sugar

Johns Hopkins did an article on sugar and Cancer I am going to try and send it to you. When my cancer came back for a 3rd time there was nothing that my doctors could do for me except more Chemo that was in May of 2006. I opt for no more treatment, all I did was to Pray and change what I put into my body.

My last PET scan was two months ago and it showed that nothing has changed, the cancer or what the doctors believe to be cancer is still there but it is not growing or giving me problems anymore. The problems I have are all side affects of the cancer treatment I took in 2003 and 2004.

sonichirag13
Posts: 5
Joined: May 2009

hello scot
i m chirag, i was living in glasgow but now m back to india as my father has this cancer.
he aslo has taken 35 radiations, 6 chemos and 6 mab therapy.
he is facing the problems like mouth ulcer, dry mouth and its horrible.
how much time did u take to recover?
was ur cancer stage 4?

Hondo's picture
Hondo
Posts: 5887
Joined: Apr 2009

It’s hard to say how long the mouth ulcers will last people heal differently due to many reasons. I had them all through the first treatment and then about 4 months after the radiation treatment stopped. The second time I did radiation and chemo they lasted longer, I am 3 years from the last treatment and they still sometimes come back but not for long and not as bad. I don’t know how it is in India and if you can get the medicine we get here but there is a mouth wash that helps with the ulcers check with your doctors. I use stoppers 4 mouth spray at night and I am able to sleep all night long with out having to get up every hour to drink water. I get this on line at www.woodridgelab.com or at any CVS pharmacy

sonichirag13
Posts: 5
Joined: May 2009

hello hondo,

when my father finished radiation he was able to swallow without any difficulty but after 10 days of radiation it was more painful and he needs more amount of lignocaine to sooth before drinking.
and did u feel weakness for long time? my father is still weak. he is doing his daily activities on his own but he is not going outside home. does this also take time?
we are givig him total nutrition so he has only loast abt 15 pounds and were you able to work after diagnosis?

sonichirag13
Posts: 5
Joined: May 2009

Hello,

I am from India and my father also has this cancer.He has finished 35 radio's and 6 carboplatin.Yesterday we did a CT scan and still something is remaining so doctor has suggested biopsy.
Can anyone tell me that how much time it takes for the report to come normal? Did anybody have any other chemotherapy after finishing concurrent radio and chemo?

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

Sonichirag, normal is in the eye of the beholder. In the case of cancer, any predictions are suspect at best. We have no expiration dates, but we also have no stamps of approval.

So the answer to your ultimate question is No. No one can tell you how long it will take to receive a 'normal' report.

I can tell you that I DID have additional chemotherapy (and surgery) after my initial bout with surgery, 33 radiation treatments, and chemo, (although in a different area), and that I handled it well. I can tell you that I am now NED (No Evidence of Disease). So there is no reason to give up hope.

And there is no reason not to do the treatment as long as your father's health is up for it, along with his mind, his heart, his spirit.

This disease CAN be beaten, and is beaten often. There are many people on this site who can attest to that!

I am only one of them.

Best wishes to your father and all of his family and friends, especially yourself.

Take care,

Joe

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