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Just Starting the Journey

Pino Tea
Posts: 6
Joined: Feb 2010

I am 55 years old and live in the UK. I was diagnosed with tonsil cancer after having my left tonsil removed in December. My treatment plan is 30 sessions of radiotherapy to left side of my neck and throat area. I have now had 8 treatments and already I am finding difficulty eating because of the taste. I know this is normal and I know its going to get a lot worse. In these early stages are there any suggestions on how to learn to live with this as I am really struggling to find things to eat, or do you just become accustomed to this. Just like to say also how helpful this site has been to me in understanding the side effects of the treatment.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I would like to welcome you here to CSN. You are correct as the treatment continue the taste of food will get worse and will get to the point where you will not want to eat at all. Did you get a PEG tube if so this should help keep you from loosing too much weight, if not you will have to do it the hard way. My wife kept me alive on watered down grits and cream of wheat, now and then I would eat a soft cooked egg, nothing had any taste.

But the good news is that when the treatment is finish it all came back about 85%, so remember there is life after cancer. The road you are on will be difficult at times but if you read these post here you will find a lot of friendly people willing to help you on your journey.

Take care and God be with you my friend

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Welcome...

Like HONDO said, it'll get worse, and your throat will be pretty torn up inside especially the last few weeks of radiation and the few weeks following. Just so you know if you haven't heard already. You'll still be "cooking" for lack of better words for a few weeks after radiation. Some people tend to get depressed that they don't start feeling relief as soon as radiation is over, it doesn't work that way.

That being said, I didn't have a PEG either. A lot on these forums highly endorse them. I can only say from my experience (nine weeks of chemo followed with seven weeks of chemo and 35 radiation exposures) that it wasn't that bad for me. Yes, I lost about 45# which I had the extra to lose, so that wasn't a health factor. Other than you are not losing via exercise or diet, it's strictly a result of the chemo, radiation and not taking in enough calories.

During the six weeks or so at the end which I spoke of, I mainly survived on water and Ensure Plus. I needed a liquid pain solution or would dissolve a Percocet in a little water to just get enough relief to drink water and the Ensure.

My logic being that it was really hard and painful to eat much of anything solid. The Ensure Plus gives you about 350 calories per can, so 3 - 4 of those a day did give me a lot more calories, minerals and vitamins that I could have ever gained from the small amount of food I could take in. I did occasionally eat jarred DelMonte Peaches, canned or fresh cooked spinach, cream of wheat and things like that mainly to keep the muscles and throat swallowing mechanisms in good working order and exercised.

You'll soon hear or figure out that everyone is different and responds differently. Find what works for you and know that at the end of each day, you're another day closer to beating the cancer.

Attitude, faith, family and friends play a huge part in your success and general well being. Having this web site and others similar can be a huge benefit. There are so many here that have gone through the journey you are just in the early stages of. Draw from that knowledge and experience and it'll take you far.

Good Luck and God Bless,
John

Pino Tea
Posts: 6
Joined: Feb 2010

Thankyou for your advice. My aim is to keep drinking and swallowing as much as possible. I suppose its all trial and error to find which foods are 'palatable'. I did ask the Onco about the PEG after reading about it on this forum but he said it is not something he would recommend as this can result in other problems. Maybe I am one of the 'lucky ones' only needing Radiotherapy that he thinks the PEG isn't necessary. When the time comes that I can't eat anything due to the pain then I will ask for the ensure. Its really good to have this knowledge in preparation for whats to come. Thankyou

MarineE5
Posts: 744
Joined: Dec 2005

Pino Tea,

Sorry to hear that you have to walk this path, but you have found a good source for information here.

As Hondo and John mentioned, things will get worse for the next several weeks. Food will taste like cardboard and fliuds will taste like aluminum. One thing that I used to sooth my mouth and throat was a Baking Soda and Salt solution in water.

It was recommended to me by the Nurses at the hospital. 1 teaspoon of Baking Soda and 1 teaspoon of Salt in 1 quart of room temperature water mixted up and rinse/ gargle as often as you feel you need to do to take the edge off the discomfort in your mouth and throat. As time went on, I increased the amounts to 1 tablespoon of each in the quart of water. It worked well for me.

Other people here used a solution known as " Magic Mouthwash " I didn't know about this when I went thru treatments 5 years ago. You may want to ask your Doctor about pain meds down the road.

Calories- what ever your weight is currently, multiply that by 12 and that is the amount of calories you need to take in daily to maintain your current weight, example 200lbs X 12 = 2400 calories daily. Adjust plus or minus to keep that weight.

My Best to You and Everyone Here

Dazey
Posts: 86
Joined: Sep 2009

John's reply was right on target. There is not only a light at the end of the tunnel, but the tunnel does end. (As I write this, I am eating a turkey and cheese sandwich on an "everything" rye bread with wasabi mustard)
I had only IMRT 30 tx (no chemo) and no PEG and finished treatment 10/26/09. My Radiation doctor said that he usually does not recommend a PEG for rads only. I did lose weight(extra pounds that were definitely not needed). It is do-able as John said. You do "cook" for quite some time and eating becomes a conscious, focused, time-consuming effort. You will refine the way you chew; you will relive your toddler years (eating and sleeping - hey, you may even go through the terrible two's crankiness!)Take advantage of any pain meds offered if you need them.
It is important to understand that finishing treatment does not mean "all better" immediately. It is not like any other medical experience. Each week post treatment you may be able to see some improvement. I can honestly say that at post treatment week 14, I realized I felt great. There are still times my throat is terrible; I struggle with certain pills (need to crush); sometimes food gets "caught"; but overall, I feel great - no need for heavy duty pain meds. I had one prescription filled for liquid oxycod with a dosage of .5 ml every 3/4 hours as needed. It lasted me four months - I took a smaller dosage, .25 ml most of the time and usually only 2 doses/day. I did what I felt was right for me.

I used Boost Plus (360 calories and 14 g protein) as my nutritional base - added protein powder n(110 calories, 20 g protein), yogurt (110 calories, 5 g protein), crushed vitamins, glutamine and distilled aloe water to make a shake -

I still start each day with that shake and carry a "Boost" with me for just in case.
As John said, each person is different and you will need to make the best decision for yourself. These were my experiences - best wishes on this journey from another traveler. Dazey

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I am new here and havent had anything done yet, have cancer lump on the back of my neck. PET test tomororow. I am reading all these post to learn all I can. I hope you are able to eat and to get your strength! I cant offer any advice though, just that I am thinking of you .
Mary

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HAWVET
Posts: 318
Joined: Apr 2006

I noticed one of the posters indicated that she drank boost. During this loss of taste period, I did not like the taste of Ensure so I swapped to Boost. They are about the same price. It comes in vanilla and chocolate flavor. I think they also have strawberry.

You are probably entering the worse part of the treatment phase, but the hope lies in the tales of all these survivors. Soon, you will be gliding back down to life close to normal. My recommendation is to remain positive, that you will survive this ordeal and that you too will be giving advice in a few months.

Pino Tea
Posts: 6
Joined: Feb 2010

Do you know if Boost is available in the UK and if so do you buy it from the Pharmacy? Since April last year, Cancer patients in the UK get free prescriptions and Ensure is available on prescription from my Onco, but if Boost is also available this sounds like the better option. Does everyone eventually need to take food supplements or do some patients manage to survive on liquidized foods.

Dazey
Posts: 86
Joined: Sep 2009

Here in US, I get Boost at both food supermarkets and drug stores. Cost in dollars is about $8-$9 for 6 serving size bottles - it comes in regular, high protein and "plus". The plus has more calories and vitamins. Taste is fine; even during treatment. I did use a straw during treatment - it was easier to sip it. Hope this helps. Dazey

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Pino Tea, like said here in the US you can purchase either (Booost or Ensure) in regular grocery stores. The Ensure does also come in Ensure and Ensure Plus, the Plus offering more calories, vitamins and minerals. It also comes in several flavors, Vanilla, Strawberry, Chocolate, and I think Butter Scotch. I liked the Strawberry myself....

As for supplements, I'm sure you and your doctors can work something out that works for you. The main thing is for you to keep as many calories in you to maintain your strength and weight. Also another very important thing is to stay hydrated, drinking as much water as that takes (a lot)... I became very sick during my second round of chemo and it was all primarily due to not taking in enough fluids....water tasted like sweat which was nasty, but you gotta do what you gotta do....it won't last forever, and you'll only make that mistake once.

John

MarineE5
Posts: 744
Joined: Dec 2005

Pino Tea,

Just to add one little peice of information that John brought up. When I was going thru radiation, the Nurses told me that I needed to take in 64 ozs of water per day to stay hydrated. If you don't several things can happen. One is constipation, so I also took a stool softener called Colace, once a day because I was on some pain med's at about week 5 of the radiation. Pain med's can cause constipation also if you are not hydrated.

So as John mentioned, make sure you get plenty of fluids in yourself.

Mu Best to You and Everyone Here

Fire34
Posts: 350
Joined: Feb 2010

As Dazey pointed out that she preffered boost to ensure. I am just the opposite. I am 3 months out my last chemo was 11/30/09. I preffered the vanilla as chocolated tasted terrible which is really bad for a chocholic. I used ensure as a inpatient after my 2nd week of chemo/radiation it became hard for me to swallow. As mentioned the hospital I was at wanted 2300 calories a day. The chemo I was on inpatient was 5FU and played havoc with mouth sores which didnt help the eating process. The diflucan helped a little. Good luck to you
Dave

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marthakmason
Posts: 7
Joined: Feb 2010

My husband was losing too much weight using Ensure Plus so now he is "eating" Carnation VHC (Very High Calorie) which has 560 per can. He has a PEG tube, so of course he can't taste it, so I can't comment on the taste. I pick it up from our Home Health Care office - it's not in drug stores here. One concern: constipation is a problem, so ask your doc about how to deal with that.

I just joined this site and it has already been very helpful. It's so good to know you aren't alone in this!

Martha

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I suspect that in looking through this thread you're probably saying, "My God, what have I gotten myself into?"
I know that all of this can amount to information overload, and granted, there's a lot to learn. But take it one step at a time, and as you walk this path there will be plenty of people here to help you along the way.
Good luck and God bless.

--Jim, buried in snow in slower lower Delaware

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Trial and error- get whatever nutrition you can, as such is essential in helping your body cope with all it has to deal with. I, and many others, had (and still have) PEG tubes to have a direct access to the stomach which bypasses the mouth and throat, and it does make the getting of nutrition easier. As is, for you, I would encourage you to press your Drs. about what advice and help they can give you with this issue.

The going does get tough, Pino Tea. I'm 15-month, and that is nothing compared to the real vets. As I, and they, have survived- SO WILL YOU.

Believe.

kass

fsdman
Posts: 51
Joined: Jul 2009

I think Kent is right in the trial and error position. I cant tell how many different things I tried as treatment and damage progressed. My biggest issue became dehydration because I couldnt hold down even water. After3-4days I was in trouble and had to be hydrated for acouple of days .Then I got my PEG and usedJevity. You must continue toalso try to eat so you dont forget how to swallow.I got rid of the tube shortly after treatment.I am doing great now .It was just bump in the road.

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debbiejeanne
Posts: 2233
Joined: Jan 2010

Jim, I realy liked your closing, it made me laugh outloud. We have about 10 inches in Cincinnati.
God Bless,
Debbie

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Hi Pino Tea. I also had/have a feeding tube. I am 15 weeks outs from my 35 radiation treatments and I still have trouble swallowing. I do try different foods but most don't taste right and for those that do, they sometimes get stuck in my throat and I have to cough or put a toothbrush in my mouth to get them unlodged. I could not imagine being without the tube right now as I do a lot of feedings thru it. I just saw my ENT Tuesday and he said my throat is still really swollen. As everyone has said, needs are by a person to person basis and you may not need a tube but if you feel you do (down the treatment) road, be sure to discuss that with your doctor.
I had another biopsy today and I can't explain this but it gave me back my voice. Before today my voice was almost like a whipser but when I woke up from the surgery today, my voice was back. Well, acutally I can explain it, it was a BLESSING FROM GOD! I am also positive that the biopsy will come back as cancer FREE!!
I wish you the very best with your journey. I strongly recommend that you visit CSN often. This is where I found ALL my informtion. I pray that God will bless you with the strength you will need for this jounery. Stay positive and NEVER lose hope!!
God Bless,
Debbie

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Pino,

I finished Treatment Oct 10 2009 after surgery for Cancer in the Left Tonsil Stage 1. I had this followed with Erbitux 1x a week and IMRT twice a day for 7 weeks. The going got rough in about week 3 and I had to get a PEG. I lost 20kg total (94 to 74)

I was intolerant to the Hospital supplied Nestle Products (Ensure ?? ) and found via a Websearch the Sunrider product called VitaShake. I mixed mine with 220 ml of Rice Milk (Readily Available) for each feed and that kept me alive till several weeks after i completed treatment. (You can google Sunrider and find where to get it. Unfortunately its MLM but you can join and get all gear at 20% off.) I still take one Vitashake a day with my cereal as it provides a good part of your essential nutrition. I also take a sachet of their Acidopholus product called Vitadopholis.

I consulted with Naturopaths as well and found the advice and supplement given of great value. You may not be able to benefit much while you are now in treatment but certainly worth some consideration once you're through. I take a range of supplements now and watch diet carefully.

The rotten side effect of destroyed salivary glands and some taste loss is the major legacy I have and I can live with that (the new normal) but I intend to try and improve that as I learn more.

Keep tabs on your condition regarding your Mental state as depression crept in for me once I finished treatment. I was finally diagnosed and treated fortunately. Just remember your post treatment recovery may be slower than you want or expect. Your eating will recommence but you will have remain patient and let your body heal and slowly work up from soups to rice and soup and then soft veges (and soup) and you may need to continue with fluids while you eat depending on where you are zapped.

I also recommend you search back on these pages fro info about Glutamine Powder for when your mouth starts to really hurt during and after treatment.

There is a lot of advice on this thread and I hope the above can assist in some way. you will look back someday not so far away with relief but there are still some hard yards ahead of you.

Hang in there and let the Doctors and Nurses know what you feel and need.

Cheers
Scambuster

rmkbrad
Posts: 177
Joined: Dec 2009

I am 44 years old and I was initially diagnosed with esophagus cancer just before Christmas, andiocarcinoma. I went down to the VA hospital in San Francisco to have a pet scan done and they found a tumor in my left tonsil and a small pin head size in one of my lungs. Anyway I had my tonsils out for biopsy last week. What a miserable thing, now in few weeks I am going to start chemo and radiation, they are sending me to University of California San Francisco to do the radiation, they have the new Proton therapy radiation there so I am guessing they might use that, since they said they are going to treat all three places at once. I am a kidney transplant recipient, so the conclusion since I don't smoke or drink is the immune suppressants allowed the cancer to grow and spread. Anyway I am scarred and the tonsillectomy is miserable, how does it compare with the chemo and radiation.

Brad

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Hi Brad...

Like you already probably know or have read, everyone responds differently.

For me the tonsils coming out was pretty rough, but doable and only lasted a few weeks tops. A little history, I had a right tonsil stage III SCC and a lymphnode HPV derived per the biopsy. I had nine weeks of chemo (three week cycles), then seven weeks of chemo with 35 rads.

The chemo wasn't bad for me, I'd lose my taste for a week or two, then it would come back for a week before I started another cycle. The chemo with radiation wasn't too bad until week 4 or 5 and lasted for several weeks after the radiation stopped.

The radiation tore my throat up pretty good, for a good six weeks. To the point of only taking in water and Ensure Plus after pain solutions or meds. The tonsils coming out only lasted a few weeks and I could eat soft foods also after pain meds. The tonsils were a little more painful, but very shorterm compared to the effects of radiation. I had no PEG nad that wasn't an issue for me.

Again, everyone is different, and I presume that everyone here can give you their version, some better, some worse.

As a side note, I don't smoke either and only drink a few beers now and then. You might have them check for HPV just for kicks. HPV derived cancer does tend to respond better to the treatment.

Good Luck, God Bless and keep us posted.

John

CellWall
Posts: 3
Joined: Feb 2010

Hello Pino Tea,
I have to echo what most of the others have already mentioned here. After your treatments come to an end things will begin to return to normal but probably not completely. This is simply something we patients have to deal with since radio and chemo therapies are extremely toxic and not just to the tumor. I was treated for a T4 neck mass in 2003 with six weeks of chemo and twice daily radiotherapy; a rather aggressive treatment plan but since the tumor was so large surgery was out of the question. The unending mouth infections and damaged throat tissues made solid food impossible so I lived on Ensure and Boost-the generic brands at most drug stores are the same and much less expensive-and at the completion of this all I was down to 117# from 155#. My doctors insisted on a G-Tube but I refused finding the idea revolting; so I guess I did it the hard way. My taste vanished after about two weeks and it was a huge shock having one of my five senses stripped from me. I cried for quite a while, but after about six months I got most of it back.
At the time I was beside myself with fear and exhaustion and pain. Looking back I do not know how I did it but I did and so will you. What helped keep me going was counting off the days on a calendar until it was all over and keeping a daily journal of all that I was experiencing as it served to transfer my fear and frustration from mind to page and leave it all there for a while. I only wish that I had been more forceful pressuring my doctors into telling me of all the possible side effects because I would not have felt so surprised and afraid each time a new one cropped up. And they did. Good luck to you.

ygfilart's picture
ygfilart
Posts: 11
Joined: Feb 2010

I was diagnosed with tongue cancer and was recommended that my entire tongue cut off. I am so glad i did not have to do it.

Pino Tea
Posts: 6
Joined: Feb 2010

Thankyou all for your replies and support. I liken this journey to having my first child. You know its going to be very painful but the end result will be worth it.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Well I guess I am one of the "Vets" and wish I had a great story to tell but I need to be honest and tell you how and what has been going on with my side effects years after treatment. First of all I agree totally with the fact that it gets worse and then better however at or around the seven year mark you may encounter some more problems. I tried living on Ensure but had too much trouble swallowing. My sons were my care takers and they would "sneak" anything they could into my drinks to help me gain weight and some of the additives (bananas for one) actually burned the raw areas of my throat. I finally found a product called Weight Gain 2000 which I was able to drink. I mixed it in warm milk and that helped it dissolve and also prevented the "clumps" from forming. Things got much better after a few months, I was gaining weight and could eat most foods but still preferred the bland foods - grits, mashed potatoes, bread pudding etc. Now I am finding out that there are other side effects which do not normally show up until the 7-10 year point. The first thing was I suddenly lost feeling in the front of my lower jaw (the chin area). It feels like I have been given a shot of Novocaine that never goes away. This is coupled with a tingling feeling shooting from my chin up to my right ear. This is a small problem but I do have to constantly wipe my lower jaw while eating since I can't feel it if I am "drooling" my food. It has also paralyzed my left vocal cord and done something to the back of my tongue making it difficult to pronounce certain sounds. These are recent events for me and I am in fact being treated as we speak My swallowing has become much more difficult however they did some tests and found that if I lowered my chin and turned my head to the left it would help my ability to swallow - it looks silly but it works. I can now usually swallow a capsule. Before this I would have to chew pills and open capsuled to take the medications. There are tests they can run to tell you if a certain position will assist the swallowing process. For about three years I was seeing different ENT specialists and getting no answers until I finally found a doctor at a University hospital who has treated numerous patients like me/us. He said this is not uncommon in patients who have had radiation to the head and neck regions. He wants to insert a feeding tube in me now before I lose too much weight and they are unable to do it. I have held off on doing this but after reading some of the comments on this board I may rethink my position. I still carry my bottle of water with me everywhere I go. One other recommendation. Find a dentist who knows how to treat head and neck radiation treatment patients. Your jaw will never heal the way it should and any type of root canal or deep filling can end up being an extraction which then brings on a whole new set of possible problems.

I hate sounding negative and at least I am still alive (and have seen the birth of two grandchildren) to be frustrated. However I also hope some of you may later what you could face in the future and not waste time as I did before I found someone who knew how to help.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Greend. Can you give us your staging and treatment so as to put this into perspective? Did you have a local tumor? Did they do surgery and/or neck dissection? What was the chemo schedule? What were the rads you got? Was it IMRT?

Thanks.

Mick

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

You're just gonna scare yourself. This could be TMI, at this point.

You are in a fragile place. Focus on the immediate future.

warmly,

Deb L.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

LOL, no that's just how I work. I wanted some context into the poster experience so to better compare my treatment. For me the more information I get the calmer I become. My fragility is worse when I don't know what I'm fighting. This is just my process.

Best,

Mick

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

I'm with you Mick, it's easier for me to confront it by knowing what I have to work with, versus not knowing and letting my mind and imagination run wild...LOL.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

I just gotta say it Mick,
Everyone Breathe, Find your center!!!LOL

Steve

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

LOL! I didn't go to that group today because I had the rad dry run. I freaked out. It was strange - once they had the mask on me I wanted it off. They were playing Otis Redding in the office and I thought that would be good, but man I started to panic and asked that they take it off. they took it off and asked if I wanted lorazepam (Adavan) next time. I thought about it for a minute.

Here I am strapped to this table under a machine that's going to zap cancer to kingdom come. What the hell am I scared about? After another minute I said "Let's go" and I got through it. The office staff were awesome through this and my buddy Noah was on the sidelines watching.

Tomorrow is day 1. Chemo (Cisplatin 100 mg/m2) at 10am and then rads (6600 cGy in 33 treatments) at 7:20pm (PST).

Best,

Mick

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick, Sorry to hear about the trouble, but I'm glad you got through it. My so called dry run, doesn't seem so dry after your post, is Thursday. I got freaked out today. I went to see my new dentist and after a semi brief cleaning, done by an intern, she came in and started asking me if this was a joke. Turns out that her sister works for the company that I work for. I just got up out of the chair and told her this was too weird, I had to get out of there. Just joking with her of course. But when I did this I noticed the patient in the next room was the girl that schedules all of the appointments, surgeries,etc., for my ENT. What the??????. Too weird. But the dentist was great, we had a lot of laughs, good times all around. So I guess that my Dental "CENTER" was found today.LOL

Best to all,
Steve

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Mick, I hated the mask too, my music of choice was James Taylor's new CD, haven't listened to since treatments..LOL.

I had a prescription for Xanax to get me through it, worked great for taking the edge off. But by the end of the day I was zonked out. I did the Xanax for two days, then pinched them in half the rest of the first week. By the following week and thereafter, I was used to it and didn't need them any longer.

Like you I think it was just the initial mental thing. Once I was used to the routine I was over the anxiety.

Glad you are making it through...

John

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Mick, that is exactly how I feel also. I may be scared after hearing the truth but at least I know what I'm up against.
Thanks,
Debbie

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

You know I really don't remember what stage I was - I do knnow it was very advanced but had not progressed to the brain but had spread to my neck's right side lymph nodes. I had 45 radiation treatments - still have my tattoo and took chemo at the same time. I wore the pump for RFU (I may not have the right initials) and took DDP every three weeks. They did not have to remove my lymph nodes but they are very hard still. My next appointment I will get all the technical data and post it - chemo brain is rough - plus 12 years.

Denny

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Sorry about the freak out. I used to bring in a cd of dance tunes, like club music. The only thing was if I started to forget where i was for a second, which hardly happened in that mask, i would start to tap my finger and want to dance. lol I would listen to 5-6 tunes and I knew it was close to being over.

I went atavan free. that damn mask was so tight, that it left waffle marks on my face. It was so tight, they had to cut out eye holes. That made it a little better. I left the first day with a migraine.

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

LOL, Sweet, I can relate, I had those waffle marks also after most days. Also like you I grew to know about how many songs would play to keep track. I'd do several things to occupy my time. I knew where the position of the rotating machine was, how many zaps it would turn on in each of those positions and the sound that it made when they shut it off either to rotate it or for the day.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

omg! i am laughing so hard. yes! yes! yes! i think i knew every click, zap and buzz of those 9 stops per treatment! it was like a familiar tune that you hate. the last week when they gave me extra zapping, i only had 7 stops, different tune, just as crappy. lol

i felt so bad, the second week of my radiation, a new guy was starting, big guy. we talked a bit before i went in. when i walked out and he saw my waffle face, he went pale. he told me he did not really want to go in after seeing that. poor guy. he told the the next time he saw me that i must be a seriously tough cookie to go in with out the atavan. he also could not take the shots, they hurt him so bad. he was funny, he said he never had a tiny girl make him look luck such a wuss. i sometimes wonder how he made out. hope he is well.

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

LOL, yes it's funny, only another that has went through it can really relate. One time my CD got stuck and all it did was make this loud annoting sound. Man that treatment seemed like it lasted forever. All I could do was peak through the mask and see where the machine was.

I say peek as mine wasn't cut out, I could just barely open my eyes just a crack because it was so tight. It would mash my nose down and I couldn't really open my mouth either. LOL, it's funny now, but sometimes especially if I had sneezed a few times that morning, I used to worry and wonder "what if I have to sneeze, or worse yet what if I ever got sick". There's no way they could have gotten me unbolted before I would have been majorly spazzin....

Another thing, I used to give them a hard time about "jokingly". My radiation was around 2:00PM, it seemed almost every Friday they had Pizza, they left it in an area I had to walk by. Man it smelled so great and I couldn't eat anything, I'd have to give the heck for teasing me like that....

When I finally finished all of the treatments. They asked if I wanted the Mask, I looked at them like they were crazy. They said some people take them for a reminder.... I'm like ummmm noway, unless it's to smash that sucker, I never want to see that thing again.... I haven't even listened to that James Taylor CD again, LOL....

Take Care Sweet....

John

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Skiffin16, I felt exactly as you did about the mask. I told them they could burn it, bust it, throw it away, take it home with the but noway was I taking it home. When I told my husband he was disappointed, go figure. Like any of us need that mask to remind us of the hell we went thru. I don't, I will never be able to forget those trmnts!! It is nice when the posts here can be funny and make us laugh. Have a wonderful day everyone!!
God Bless,
Debbie

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

The machine here makes a noise like doors closing. I have found that when I hear a similar noise at home (kitchen cabinets closing) that I get a really queasy sensation...

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Greend, congrats on the grandchildren!!! I have 5 and they are so much fun. I'm sorry you're having trouble again. I am also very glad that you are honest about what is happening to you, this forum is how I learn. You will be in my prayers. I have a few questions if you don't mind. You said things show up around the 7-10 yr mark and that you are currently being treated, is your cancer back or are you being treated for the effects from the cancer you had? What type of cancer did you have and did you only have rad or rad and chemo? I only had the rad but I'm experiencing new side effects weekly. I have been thinking that I will be back to being me at my 6 mo mark but now I've changed my mind. That's me tho, I originally expected to be back to normal 4 mos after my last treatment. My last rad trmnt was 10/22/09.
I hope things turn around for the better again for you. thanks again for your honesty.
God Bless,
Debbie

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

No the cancer has not returned. I had tonsil cancer and in May 2010 it will be 13 years since last treatment. I was treated with radiation and chemo at the same time. I went through everything you read about here, carried (still do) a water bottle everywhere I go, total dry mouth, weight loss following treatment followed by a reasonably stable life since then. Several years ago - 3 or 4 - I suddenly lost all feeling in my chin. It felt like you do after the dentist gives you novacaine. This was coupled with some periodic tingling feelings (like you hit your funny bone) going from the chin area to the right ear lobe. Not painful but uncomfortable. I ended up at a neurologist and his assessment was that I had had experienced a TIA (mini-stroke). They did the brain scans and there was no damage (not a lot to work with up there ) so life went on coupled with an asprin a day. Then about two years ago my voice started getting very raspy. I thought it was probably from some anesthesia I'd had two weeks earlier for some minor shoulder surgery I'd had but when it didn't get better I went to my ENT. The ENT told me my left vocal cord was paralyzed and may or may not get better and left it at that. I was also having a bit more difficulty than usual swallowing and I found my ability to pronounce certain sounds was impaired; the hard "G" sound for example so I decided to get a second opinion. My family doctor referred me the the Kirkland Clinic in Birmingham Alabama. I was lucky in that the doctor I have has experience treating radiation patients, something that is not common. He told me that he sees a lot of patients around the seven year point after treatment with symptoms like mine. The numbness in the chin is a direct result of radiation nerve damage to two nerves in the face - good news it wasn't a TIA, bad news it was still there, damage to the back of my tongue was causing the pronunciation problems and it was causing the increased difficulty in swallowing by having further constricted my throat. It also was the most probable cause of the paralyzed vocal cord. Since I have lost so much weight he also advised me to either gain weight or he will insert a feeding tube so I have until May 27th to be at 175 lbs - wish me luck.

I asked what could be done and he basically said, "nothing". My comment was , "so you are telling me I'm just in the $h^% pile", He laughed and said "yes your are in the pile but you on top of the pile, I have many patients much worse off than you."

I am also lucky in that it happened to me at 13 years rather than 7.

Hope this doesn't scare anyone but these are the facts and being educated may help you in the future.

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Greend, it is a litte disheartening but I would still rather have the truth. thank you for telling it like it as.
God Bless,
Debbie

sportsman
Posts: 98
Joined: Feb 2010

Pino Tea: This is a hard journey and things will get much worse. You need to definitely consider the peg tube so you can stay nourished. I had the tube and still lost fifty pounds. Everyone seems to respond to the radiation differently but most of the problems are the same with this treatment. I had thirty five rads and seven chemo treatments. Four days from now will be three years since my last treatment. I have gained a lot of strength back and about twenty six pounds of the fifty I lost. Hang in there and if you come out the other side there is still life after cancer. God Bless you,

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Like you, the PEG necessity was realized with me by week #2. 15+-months. Still have the PEG and Port. I lost 17% of my prior weight, but have gained it all back! Our Chemo differed, and I only had 31 full head and neck rads (20 places/session), and 3 partials. Do wonder about what C you had. Do like hearing you are 3 years the Vet, sportsman. Hope you will tell us your experience.

kcass

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

That popping fizzling clicking noise from the machine just about drove me nuts.
The other thing that I remember (and you have to be of a certain age to identify with this) is the sound that the big heavy door to the chamber made when they closed it behind them and left me alone in the room.
Remember the opening to "Get Smart"? Every time I heard that door close the "Get Smart" theme song would start running through my head. Which, of course, it's doing now.

--Jim in Delaware

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