CSN Login
Members Online: 13

made it thru treatments

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

I did 6 weeks of once a week chemo Erbitux carboplatin taxol
then a 2 week rest
Then 7 weeeks of radiation with doubles on friday plus dailey chemo
Cisplatin on weeks 1 4 and 7

Drove myelf 60 mile everday didnt have to use peg tube till week 3 of radiation

Like i read its worse now that treatment stopped.

Darkest before the dawn i guess.

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Let the healing begin! It only gets better from here!!!!

BILL

TereB
Posts: 288
Joined: May 2003

Congratulations Victor!! You finished treatment, you may feel you are at the bottom but now the only way is up. Healing may be a little slow but little by little you will feel better. Take good care of yourself, rest and try to relax.

All the best,
TereB

dedesert's picture
dedesert
Posts: 17
Joined: Aug 2008

No more sixty mile drives...It's all about getting rest and healing from here. Congratulations and hang in there ..we are all with you

Mark

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

You have faced the Monster and shown him your resolve. Getting back to your "new normal" will take time and patience. BUT, you are on the road my friend. I live and work in Mexico, so as we say down here.............FELICIDADES y Buenos Suerte!!

JK

dedesert's picture
dedesert
Posts: 17
Joined: Aug 2008

states. What kind of cancer facilities are near you or must you travel regardless?

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

My employer transferred us down here in 2000 but fortunately we live about 5 hours from Tucson and also have a second home at Green Valley which is about 20 minutes from Tucson. Add to that the fact that my "routine" healthcare benefits are still in the US and it was a good situation. I had 3 surgeries, 35 rads, and 7 chemos and my employer allowed me to tele-commute from the GV house during the 2 months of treatments, so all things considered it made the situation much more tolerable. I got a referral from my primary care doc to an Oncologist in Tucson who likewise referred me to his choice for radiation and ENT. It all came together, we made it through it, and now almost a year later I feel better than I thought I ever would again. I have my 1 year PET on 11/3 and am counting on another clean and clear report. Life is good thanks to God, an incredible Oncology/ENT team and my Saint of a wife. Not to mention of course the support and advice from a lot of supporters, many of which were right here at the CSN.

dedesert's picture
dedesert
Posts: 17
Joined: Aug 2008

Congratulations on your sucess and I wish you continued good health...It's nice to live in Paradise to just to top it off eh?

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

Are you still around? I have been away for a while with getting a new job and being quite busy. I dropped in tonight to see how everyone is doing and get some updates. I hope all is well with you and that you are recovering!

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

thanks for asking I was operated on friday radical neck dissection
i guess im doing ok thanks to morphine and roxicet.
I was just starting to eat again eggs and soft stuff chicken soup taste allright
sweet stuff taste bad. But now im back on the tube because of biopsys on the tonsil area
and swollen neck. started swollowing some eggnog just a few minutes ago so it is getting better maybe alittle scrambled eggs and chicken and rice soup again soon

suzhiles
Posts: 8
Joined: Nov 2008

Hi, Victor. Does 53 represent your age? I'm 55, but was diagnosed when I was 53 and after chemo and radiation had radical neck dissection surgery with the removal of 30 lymph nodes. It may take awhile for you to start eating again (I had a feeding tube for 5 months), but I recommend instant or homemade mashed potatoes (seasoned with whatever you like including chicken soup) and carbs with salt. Eggs scrambled, poached or in an omelet are great as well, because of how soft they are. And now we are in soup season again. I also recommend liquid vitamins and maybe some protein shakes.

My salivary glands were pretty much wiped out by radiation, but I can eat almost anything I like now provided I am willing to devote a lot of time to reaming my teeth and gums afterwards. On the other hand, after 5 months on a feeding tube, I'm pretty happy to be able to eat most "real food" and remember when I "graduated" from potatoes to pasta.

Hang in there.

ricklevans
Posts: 14
Joined: Feb 2009

I am 49 years of age. I have cancer on my tonsil and on two lymph nodes in my neck. That is how I found out I had cancer.(Lump in neck)I had 35 radiation treatments and 7 chemo treatments at the same time. Chemo was once a week for 7 weeks.(no side effect) Raidtion destroyed my throat. I have never had the tube put in because I refused.

I am now just starting to eat some food, not much but am getting some down. I drink ensure drinks and milk shakes also. I am still losing weight, is this normal?

I go back in three weeks to see my surgey dr, who diddn't have to do surgery and left my tonsils. If surgey is needed to remove my 2 lymph nodes, will I have to start all over again with eating?

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

Rick (I presume) you have not yet started eating in my estimation, so I would not be thinking so much about starting over as I would be about beginning.

I am NOT a tonsil cancer survivor. Instead I had cancer in the tongue and neck, so things are a bit different for you. Even so, why you opted not to get the tube, the JPEG tube that they insert into your stomach, is puzzling.

I am not sure what you mean by the phrase 'destroyed my throat' but it is not an infrequent event that radiation swells parts of the throat and makes eating food difficult. They may be able to correct that eventually via dilation procedures, depending on where the swelling is.

Surgery can also cause some scar tissue and swelling that is not correctable in many cases.

These are possibilities.

In the meantime, you need not to focus on those but on gaining nutrition, on being fit. You do not want to go into surgery, if that must happen, in a weakened state. In fact, they may decide you are not a candidate, depending on degree of weight loss.

I would advise, first, that you reconsider the peg tube, if that is a possibility now. I would also advise that you move beyond conventional ways of eating, and think about all of the ways that you can make a blender your friend.

Think about soups, creamy ones, broths, even. Think about pureed anything (I still put some of the elements of my salads, such as the lettuce and peppers, into the blender, on Pulse, until they are small enough for me to swallow). Think about mashed potatoes and gravy, about creamed corn, about yogurt (great for digestion), about ice cream, about the things you CAN eat.

And then think about changing your schedule, which was probably the last thing I figured out in my own case: you may not be able to eat three square meals a day, as they say. You may need to eat many smaller meals all day long to achieve your goals.

I also advise exercise, even if it is just the daily walk around the block with the dog (or with your significant other), so that the nutrition is properly allocated.

I recommend that highly, in fact, because it also seems to help the psyche.

Finally, to get back to the beginning, you do not want the peg tube. No one does. But if you need it, and if your doctors suggest it, I am here to say that it is not such a bad thing. The two worst problems for me are wound maintenance (not a biggie, really, most of the time) and becoming dependent on it, something that is really a dangerous possibility for type A types, because it is so easy to use and makes absorbing nutrients so much faster and convenient.

I am a survivor, and you will be too! (That is my way of saying I am NOT a doctor, so be sure to talk to your doc before taking any of these ideas on :) ).

Hope and Humor!

Take care,

Joe

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

Rick,

Soccerfreaks has some good suggestions. There is a cookbook called "easy to swallow easy to easy to chew" that has some good recipes that might help you. You can pick it up at Amazon.com. You might also want to consult a swallowing specialist or a speech pathologist who can check to see how you are swallowing and may be able to make some suggestions as to foods to eat.

I refused the peg for when I went through radiation and chemo but had to have it put in for my surgery. If I had to do it over again, I would take the peg and use it as a supplement for when I couldn't get food down. Because of this I lost 95 pounds through my radiation and chemo. At points I was only getting a single glass of Gatorade down a day.

If you are getting as much down as possible and still losing weight, there are powders that you can get at health food stores that can add not only nutrition to what you are getting down, but they can add needed calories. I had one that was 700 calories for a serving of the powder. This could be added to your milkshake or ensure even if you do a half dose, that might be enough calories to keep your weight up.

waikiki5
Posts: 2
Joined: Mar 2009

I had! nasalpharyngeal carcinoma so it is different from yours. But I did have the peg tube for 6 months. I am almost a year out of treatments so eating has been a challenge. I would recommend going to GNC stores and trying Mass XXX. It has almost 1000 calories if you mix it with 16 ounces 2 percent milk. They have different flavors so you can choose what is right for you. I also add peanut butter with vanilla and put it in a blender.
I hope this helps you. I will remember you in my prayers.

denistd's picture
denistd
Posts: 483
Joined: Apr 2009

You say you were on Cisplatin, did they give you Emend to prevent or lessen the nausea vomiting? Hope your feeling better and there is a lot of good advice here. I have radiation and chemo scheduled in a couple of weeks, I will get the Cisplatin. Denis

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

Waikiki5, you're the first nasopharyngeal cancer patient I've run across on boards. I also had j-peg, but for about a year. I've already posted this under another topic about feeding tubes. My most important piece of advice (besides "don't fight your doctor") is to keep trying to swallow or eat while on the tube. I couldn't (not even water), and when we started talking about removing the tube, I had to have speech therapy to help me "relearn" how to eat!

I still can't eat like I used to, but I'm here to gripe about it - and that's good!

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

yes i got cisplatin during chemo everyday mon thru fri on weeks 1,4,and 7 of my 7 weeks of rads and i did the emend i think it was 3 pills the first3 days of chemo mabe one was the day before.Havent read of anybody else getting it my way

denistd's picture
denistd
Posts: 483
Joined: Apr 2009

Hi Victor, did the emend help with the nausea and vomiting?

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

Emend was a lifesaver for me, but I also took two other anti-nausea medications before chemo (my cicplatin treatments, not the other two I had). I don't want to think what it would have been like without it!

denistd's picture
denistd
Posts: 483
Joined: Apr 2009

Hi Rosem, I will only be having Cisplatin 3 times, once every other week as an enhancement to my radiation. The doc prescribed Emend and the other two anti-nausea pills. Thanks for your reply, I was having trouble finding out whether it worked, of course the manufacturer said it works fine, a doctor in the UK e-mailed me to assure me that it works, at different levels for different people. Thanks again. Denis

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

You'll be in my thoughts! Your treatment is very, very similar to mine. God speed!

ST4RK3Y
Posts: 3
Joined: Jan 2009

I was Diagnosed at the age of 24 if my terrible memory is working correctly.. I do believe it was 2005.. Im about to be 28! Yeah! I like to read about people and surviveing cancer but I never usually say to much! I dont deal with it to well.. My dad has colon cancer that spread to his liver and he has been fighting 5 years now.. He was 8 months in when I got the wonderful news!

Im from Sharon Pennsylvania my dads a vietnam vet, I believe my case was derived from Agent Orange but have no way of proveing it! From what I have read and learned from my doctors is that its chemical exposure that causes Nasopharyngeal Cancer. All I know is ive never been exposed to nothing but my father has.

I was treated at UPMC Shadyside and Hillman Cancer Center and I would rate them at the top of Cancer Care and Success for anyone lookeing for a real good place to be treated. Unfortunately at first for me I went to the local ER and they said I had a branchial Cleft Cyst in my neck. Thats funny though that only occures in infants! I then was seen by my local Ear, nose and throat specialist who was terrified when she saw me! She told me that I had irregular Adenoids and they needed removed and to take some strong anti-biotics and I would be fine! Wrong! Dureing surgery she realised she was cutting out cancer from my adenoids region and decided to abort and Call the People who right the books and teach the information! University of Pittsburgh Medical Center here I come! I was frustrated and Terrified ofcourse but really confident! AFter all I loved Pittsburgh even though the 74 mile trip was not fun at all the City and the Steelers made me happy when I was their! Upmc is a bunch of hospitals in Pittsburgh and they also teach medical students. Alot of Cancer research and Protocols are done and made their! My case was put infront of a Panel of UPMC's Elite Oncologists and Doctors and they made a special formula for me! I was a Guinea pig and Signed my life away for a trial experiment that did save my life.

I had a Chemo Oncologist Dr.Agarwala(Indian fellow who I didnt like) Oncologist Dr.Ryan of Radiation and Dr.Ferris the head of Ear, Nose and throat for the the whole UPMC. Ferris was chairman of their special cancer team.

They came up with a Experimental treatment that was intense due to my age and how big I was.

At that time I was 24 and weighed 272lbs at 6 foot 4inches in height. So I was a big boy with muscle and fat to use.

They ofcourse gave me a surgery for a port a cath and I started treatment immediately. My syptoms at the time consisted of a half football sized mass in my neck that didnt allow me to turn my head to the right at all. The tumor was cutting off my sinus cavities and restricted hearing completely as if I was under water. My eye site was gone in my right eye but great in my left and I had Head pain around my temples and above my ears that was so bad I thought about committing suicide.

I was terrified by dr. agarwala because he told me I had a %20 percent chance to survive because of how far the tumor progressed in mass. He told me that the percentage would be lower if I wasnt a big of a man as I was.

I started off with 5fu in a bag running constantly for 5 days straight monday thru friday and I had on mondays, wednsdays and fridays 5 hour treatment of Cysplatin at the same time.

The catch was I was to recieve Radiation everyday monday-Friday until they say fit.

My days consisted of leaveing home and driveing 74 miles and arriveing in Pitt by 8 am at hillman cancer center and getting hooked up on mondays for the beginning of 5fu for the whole week in the bag you tote with you everywere. After that was hooked up I would recieve my cysplatin treatment that would run for about 5 hours and sometime in the afternoon everyday I would get summoned to walk from hilman cancer center over to shadyside hospital were the radiation oncology was. That was the crazy part, I had to tote a chemo bag with 5fu and cysplatin and all the other flush bags on a pump with wheels and walk that over to radiation which was about 300 yards. It was a very hard task at my time progressed ofcourse. The Journey was through a tunnel connecting the cancer center to the shadyside hospital. It was humiliating/emberassing but it was the only way. I would walk with the bag and the chemo cart thing thru a 5 star cafateria were Dr's, Nurses and families would eat and people would just stare me down.

After arriveing at the Radiation center Dr. Ryan would always ease me. I love that man, he is a genuine good person that cares. The indian oncologist Agarwala acted as if I was a specimen with no hope. The experience with him almost has given me a complex about all indian doctors here in the states.

Dr. ryan would set me up for my 33 min radiation treatment, like I said they would call me everyday when they had a spare minute I never had a scheduled time like the other patients. The most intese thing about it all was the amount of exposure and time I spent under that mask. 33 mins everyday is long, very long he told me then I was first patient he ever seen go that long with that much exposure to radiation. He was nice enough to let me see the program he wrote for the philips radiation machine. I have an Inoformation Science Technology Degree so I could Understand him. THat is when I realised the difference between Dr's back home in SHaron and in Pittsburgh.. THe technology available and the Dr's Useing them are innovateing Health. He was able to write computer code commands with geometrical angles to shoot radiation beems into me in any length, width, direction, and size. Back home they just shot radiation through your whole body. He was able to pin point a radiation beem from this machine under my jaw line and exactly to the tumor. Not past the tumor not through it or too wide. It was like he made the safest route possible to his destination. THe tricky party he told me was haveing the radiation dodge my nerve endings on my eyes. Their was a slight chance I could have lost my vision forever. Under my jaw was the point of the beems entry so their was no avoiding the teeth and saliva/mucus glands in that area..

Anyway, I had Immediate response to the Chemo and the Intese Radiation Treatments. With in a week I got my hearing back and my complete eye site. That is when I started totally believeing I could beat cancer. I learned one thing from my cancer patient peers that were older then me while being their. Believe! It doesnt matter what you believe in as long as you believe in something and allow that to motivate your drive you will be succesful. I seen what cancer does and if you allow cancer to depress you and destroy you mentally you have no chance!!!!!!!!!!!! Believeing is the Key to Cancer Fighting!

THey say you dont feel Radiation or see it.. When I was treated I swear when my eyes were closed dureing treatment I could see wavie Radio wave like lines.. I could smell burning in my nose.. I didnt feel it though.. Ofcourse after a month my chest and neck looked like a indian Scalped me.. Bloody raw mess.... Before my hair fell out I just went bald.. I could see the lines around my head were radiation killed the roots of my hair.. looked weird.. but I didnt care.

I actually swear around a month into treatment I hockered down a piece of my tumor, it was a dark fried up smelly lookeing skin cell organism.. weird.. through out my treatment more pieces followed but much smaller. I lost around 100 lbs.. I went from 272lbs to around 168 if I remember correctly. I do believe im the only patient not to recieve a feeding tube as well. I refused it once my trachea area stopped functioning and I could no longer swallow. I pretty much lived off of chickent broth and water that I had dropped in my mouth with a eye dropper. It was a terrible experience once I lost the ability to eat food and swallow. I remember my mouth the insides were bloody and raw.. my gums would just bleed and my teeth were gloweing white.. It was like the radiation whitened my teeth.. I got scared when I witnessed a older women who was a friend of mine die dureing her radiation treatment she had cancer all throughout her body. She just found out two days before her death that it spread to her brain. I remember takeing to her husband while she was being treated and she had a feeding tube. I watched her wilt to nothing, she was small to begin with. In my mind the feeding tube was the end of the line. Call me crazy but i do believe I was borderline dillusional at the time. I remember how jealous I would get when I would see people eating or drinking even water. It was like the moves and someone is trapped in the desert with no water and they started hiluscinateing. I decided I would not get a feeding tube. I made it barely I lost all muscle mass I had and all body fat as well. I was a big guy and I was lucky for that, now tha tI think about it I had no chance if I wasnt a big fellow. She passed away that day and it put me in the wrong thought process. A week later I couldnt even mumble words..

In the end I came out alive to be able to tell the story...

I believe I was treated for 3 months strait.. I can not confirm that though..
After the lump in my neck went away and all my syptoms were gone I had a bad reaction to anything relateing to the word cancer itself.

See now I have a problem acknowledgeing it. I swear all day everyday all i hear is the work cancer or read it or someone is talkeing about it. Before It was like it never existed in my life or vocabulary. Hell I didnt even understand what it was or what it ment when my father was first diagnosed. The word ment one thing to me and that was instant death game over. I dont even go with my father who is all alone at his chemo treatments. I can not stand to be their at the local cancer treatment center in hermitage pa. It bothers me deeply but its so hard to go their. People look at me now when I go their like I dont know or like they would kill to be in my shoes. I can tell the look because I been their and I can sense it. My life is so tuff with all the side effects closeing in on me. My teeth are rotted beyond repair and without health care I have to spend massive money on Vicodin and teeth repair just to make it through everyday. Fortunately I will have them all pulled when the state finally gives my dentist the ok. Im probably the only person in america dieing to see a dentist. I cant sleep from the pain at night.. thats why im writeing this now.. in the early hours of the morning. My saliva glands and mucus glands are destroyed from the radiation treatment. Every couple of days a waxy glue like substance slides down from my nasopharnyx area and I either hocker it down real quick and cough it up in one motion or it falls on my gag reflex and im guaranteed to be pukeing until it works its way out.. I imagine its my mucus gland trying to make mucus but can not make it correctly. When I eat food (especially with dairy products) it seems to flare up. SO I lose my lunch and dinner alot, which really sucks since my teeth are so bad its a task just to eat again.. The memory really sucks.. I work under the table for a local jeweler and do ebay work for him but I have no insurance or benefits.. He is nice enough to give me work. I find my self paceing around trying to remember what the hell im doing when im at work all the time. I have had to quit writeing this and start over in different spots because I forgot were I was going with the story and im starting to ramble..Sometimes I think it was just a dream, sometimes I smell the smells while driveing somewere that remind me of that radiation chamber and that mask that confined me to not moveing. Its like a plague that will never leave me alone. I still fear it till this day.. I have not recieved a check up in over two years. Unlike most people that talk on these forumns I have had a lot of bad experience and bad life since becomeing a cancer survivor. I feel as if I was robbed of my life. Since im younger I have been robbed of being able to have a child. I am now sterile and the last too carry on my fathers last name. Its like last of the mohicans the sad part is I dont even have his last name to die with, only he does. I live with my Girlfriend and her two children. I am a step dad and its great but hard to deal with since I am not a father and would love to be one. Im in debt up to my ears like most of the other americans.. Unfortunately mine was occured while driveing to Pitt and liveing in hotels throughout treatment. I had a decent starter job for Mid western Intermediate unit four as a computer tech at a local high school. Thank god I had excelent Insurance when I did get sick.. Highmark payed 1,274,000 dollars for my treatment my co pay on that is another big credit screw! Eight months into being cancer free I started liveing on the razors edge.. My father was still bed ridden at the time and I was back to work but I couldnt handle it or creditors.. I started selling marijuana and became pretty good at it since I didnt smoke it. I eventually got caught in 2007 and got a felony and another problem to my life. My goal for the wrong doing was to try buy my life back. I was able to pay of my trailblazer and two credit bills.. Let me say this it wasnt worth it.. I think maybe im paranoid that I wont live to see fifty. I feel like I have to live now and try to make double the money each day to catch up. Unfortunately in todays economy it isnt working...

Their is one thing though out of the whole cancer experience that was worth it!

my treatment plan is exorcised now by UPMC as the treatment for Nasal Pharyngeal Cancer

Although my journey hasnt been good at all and everyday it gets more depressing and harder I still have the one thing that pushed me through then.. Believe! Just Believe!

Craig_Griffin's picture
Craig_Griffin
Posts: 32
Joined: Feb 2009

st4rk3, I liked your write-up. Yes, it is correct to just believe. In my fight with staqe 4 throat and neck cancer it got to a low point where I just wanted to wake up and see the dawn one more time. But now I have been "cancer free" since October, 2008. I coughed up the last nasty bloody phlem out of my throat right about that time. My PEG tube will be removed in 1 week. I am learning to live with severe fatigue from radiation, and with some muscle and flesh missing out of my neck. But it gives me confidance and a feeling of peace that I beat the big "C" through all of this. Congratulations to you on winning. -Craig.

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

I had nasopharyngeal cancer and none of my specialists, or anything I read, suggested it was caused by chemicals (Mayo Clinic, MD Anderson). It could very well be the reason you got it, but I never had any such exposure. All of the literature I read (and it was encyclopaedic), said it was an extremely rare cancer for anyone born on non-Asian contents. It is not rare in Asian countries. For some reason, black teenagers also seem to have a higher incidence. Almost no caucasians get it.

I have or had many of your symptoms. I took FU5, but it was my last treatment. (Cisplatin, then Carboplatin then FU5) and daily radiation. I never regained my hearing and have gotten hearing aids. My tongue is still a major source of concern and there are very few foods I can eat.

Despite that and numb toes and fingers, I feel I learned so much about myself and my family that nothing is so horrible that I wouldn't be there for a member of my family who needed me. Had it not been for my brother and sister-in-law rotating weeks and driving 200 miles to stay with me for 6 months, I do not know what I would have done.

I hope you reconsider your fear of going to your dad. You've beaten the worst. He needs your strength.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network