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Update on treatment

John oldtmr
Posts: 33
Joined: Jun 2009

10 RADS down 23 to go. Got real dry mouth and tongue starting to feel like I've burned it. So far the worst is that all the food taste's like Ceeee-Rap. I can't hardly stand to eat, but am trying to get what I can down, but am not hungry at all. Sure hope that this doesn't ruin food for ever.

Mon. had real bad reaction to Amifostine shot. Felt real cold and ran fever ( 100.5 ),and blood pressure dropped like a rock. Had shakes real bad, took Benedryl, had all the sweat clothes that I own on and still couldn't get warm until after I went to bed with all my sweat clothes on. Doc said if I had another reaction we would stop the shots. Started taking more Benedryl and so far so good. I've quit taking blood pressure meds as Amofostine has knocked pressure way down.

If anyone knows of any way to make food more palatable let me know 'cause I don't want to use tube as long as I can swallow.

Thanks All,
John

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

As Larry the Cable Guy would say.

Hang in there. I cannot lie to you, things will likely get worse. BUT, I promise you they will eventually get better. I cannot repeat enough times, because it came as a surprise to me, that the radiation will continue to work in your system for 4-6 weeks after treatments stop.

Meanwhile, focus on hydration and nutrition. Keep a log. Use the tube to stay on track.

NO MATTER WHAT.............take something by mouth and force yourself to swallow at least 1-2 times daily, more if possible. This will help preserve your swallow mechanism and hopefully avoid the need for re-training Therapy later.

As for taste now, and ongoing: I loved gravy and soup type stuff. With a blender you can turn almost anything into a slurry that is more comfortable on your throat. Tastes that recovered quickest were salty stuff. PROGRESSO makes a beef stew (LIGHT) that is, and was a real treat. A lot of folks have said that fruit smoothies made a thousand diffent ways were good. Sweet has never really appealed to me so I was not a fair test, but the smoothies were soothing I will have to admit. Again, I am not a fair reference point there because even as a child I have never cared for candy, not even chocolate. My Mother used to think I needed counseling.

10 down, probably 11 by the time you read this. One heck of an accomplishment. Again, things may continue to deteriorate for awhile but they will turn around.........I guarantee it or my name ain't Nathan Arizona (Great movie by Coen Brothers....Raising Arizona, get it and you'll laugh your you know what off).

OK..............keep on a keepin on.

JK...............from wayyyyy down in Hotter Than Heck Mexico

John oldtmr
Posts: 33
Joined: Jun 2009

Thanks JK,
You're right. 11 down and 22 to go!! I am expecting it to get a lot worse. I started drinking Glucerna shakes and they actually taste good. The Rad Doc gave me a scrip for Glucerna for the tube and am waiting to here from the supply house. Nutritionist figures 7 cans a day 'cause they want me on 2500 cal/day. I'll probably start the tube for the simple reason that every thing tastes so rotten. I love food and love to cook, so hope this will eventually all come back. I'm doing everything I can to tolerate the Amofostine so that maybe I can get this back.

Now the latest is I'm tired and go to bed then wake up wide awake in 2 to 4 hours. Someone said this would happen and to sleep whenever you can and I guess they were right.

Thanks again JK and yes Raising Arizona was a crack up.
John

John oldtmr
Posts: 33
Joined: Jun 2009

I don't know if I am doing this right or not but if you all get this I want to say thanks for all the support we got from your encouraging words and knowing how others handle this is really helpful. the day after John was diagnosed, I got in computer under head and neck cancer and what I read scared me so bad I vowed I would never check again and didn't tell John I had done it. we had some bad times that first week or so and he is tough I was a mess for awhile then he got into this chat room with all of you and made me read what you had written and I felt so much better. he is done now and has really gotten thru this well or as much as can be expected the nurses kept telling him they couldn't believe how well he is doing this last week he had radiation twice a day and now we wait and have pet scan in 5 wks then back to radiation Dr. so again I want to say thanks as you really encouraged him and it ran over to me hope you are all doing well I am sue John will be getting back in here soon he did read some today but is having issues with so much mucous and ends up throwing up but this too shall pass be well all of you John oldtmr's wife Ruthie

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Ruthie,

I'm happy to hear that John has finished his treatments and is doing well. I finished my treatments a week ago and am happy to take a break before my next round of treatments start up. Tell John to rest up and take it easy for a while, it seems discouraging at first when you finish treatment as you want to be able to immediately do everything you could before. Each day he will start to feel better and before you know it he will be at his "new normal".

Please tell John I am hoping for a speedy recovery for him and will keep you both in my thoughts and prayers.

Hugs to both of you!!

Glenna

John oldtmr
Posts: 33
Joined: Jun 2009

Hey Glenna,

Thanks for all of your support. I finished rads on Fri.the 21rst. Neck was fried up ,but have been using Miaderm through treatment but started using Aquafor. Still red but pretty much new skin. My main problem now is the mucous. Am using the feeding tube 'cause things taste so horrible, but the mucous keeps me in a state of half sick to my stomach all the time. If anyone has any answers for this please let me know.

I guess that now all it is going to take is time, and everyone is different on how long it takes to heal. Will take it day by day. Don't worry Glenna I've got this resting down to a science. Ruthie tries to wait on me hand and foot, so am trying to prevent that.

Thanks again everyone for all the support and encouragement.

John

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Good Morning John,

I wish I could give you some great advice on how to make food taste good again but I am still trying to solve that problem for myself. I've had 20 rads (15 to go) and 4 chemo and was doing fine (except the nausea) until last week when all of a sudden everything, including water, tasted so bad I couldn't swallow it. I can swallow fine, no pain and nothing seems to stick in my throat. It's like you said - everything tastes like "Ceeee-rap" and I have no appetite at all.

I had hoped I wouldn't have to use my feeding tube but had to start last week. I am determined to keep my nutrition up and keep myself hydrated. So, if the feeding tube is the only way I can do it at this time then I will gladly use it as I fully intend to stay strong so I can fight this beast. I still carry a bottle of water with me at all times and take small sips throughout the day. I have also seen a speech therapist who gave me 5 exercises to do daily which will help with my throat muscles and also help me retain the ability to swallow.

Unfortunately for me food still smells good :( I still force myself to try a bite of whatever my husband is eating to see if it tastes good, no luck yet, but I'm going to keep trying.

I'm sorry I couldn't be of any help but if you find a way to make food taste good again please let me know. I'm sure it will improve in time after all of the treatments are done, but that still seems so far away.

Good luck and stay strong,
Glenna

John oldtmr
Posts: 33
Joined: Jun 2009

Hi Glenna,

Sorry I didn't get right back to you but haven't been in computer in a couple of days. They delivered my Glucerna (9 cases) so I I've got my food. I'm dumping them in a mug and then filling it on up with milk and drinking them like shakes. Not the best shake I've had but am going to try to keep drinking all that I possibly can.

Like you my throat isn't very sore, but tongue is pretty fried up. Lips very dry and cracked even though I've kept them plastered with lip stuff. Neck and side of face getting "sun burned", but listened to SoccerFreaks, and am using cream on it all the time. I am using Miaderm that the rad doc gave me. Suppose to be developed by rad docs especially for rad burn.

Also like you I don't seem to ever be hungry. The first day of shakes I only got three down and they want me to have 7. The 3rd one I tube fed to get the hang of it and to see how it went. Thought maybe I could get more in that way, but by the time I got the 8oz in I thought it was going to run out my ears. Guess I'll do the best I can and watch the weight. If I start losing to much will have to do something different.

What about sleep? I seem to be sleeping an awful lot, but guess that can't hurt. Some one said to sleep whenever you can, 'cause there will be times you can't.

Luck to you and WE CAN DO THIS !!!!!
John

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

It's been awhile (5 years, thank God!), but I also felt crummy when I got my amifostene shot. I had to get them on Monday, Wednesday, and Fridays during my 30 treatments. I learned to love Tuesday and Thursday!

I think it was worth it. I got my taste back, and still have some saliva left.

As for eating, the radiation zapped me pretty good, and I couldn't swallow very well. I did find chocolate Boost, and that is what I lived on for many weeks. Today I eat what I want (as long as I have water to help wash it down), and things taste like they should.

Sleep as much as you can! I had a terrible time getting to sleep. And I found out how crappy late nite TV really is!

My thoughts and prayers are with you. You will get throgh this roller coaster ride.

George

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi John,

I'm on Fibersource HN for my tube feedings and they want me to do 5 of the 8.5 cans per day plus at least 4 Ensure and water. I feel like I'm floating by the end of the day :) It took me a few days to manage all 5 cans but have finally learned how to do it without it consuming half of my day. I still drink the Ensure and water by mouth as I'm trying to swallow as often as possible which can get pretty tough when your mouth is as dry as mine. The chocolate Ensure is the only one I can tolerate the taste of but at least I'm still swallowing.

The inside of my throat isn't too sore yet but the outside is burned to a crisp, I'm using a cream my rad dr gave me it's called Special Care Cream. I use this during the day as I apply it often as my neck feels like it itches constantly. I use the Aquaphor at night as it is a thicker cream and seems to last through the night. Like you my tongue feels like it's fried but doesn't hurt.

As far as sleeping - what's that?? I haven't slept much for 3 days now and am not sure why. I get tired and go to bed only to be wide awake after laying there for 3 hours. I will eventually doze off and sleep for an hour or two and then be wide awake again. I try to take naps during the day but haven't had any luck with that either. I really don't want any type of sleeping pills (I've never been a big fan of them) so I will give it another day or two before I ask my doctor about it. So, YES, enjoy the sleep your getting now.

Take care and good luck with your continued improvement -WE CAN AND WE WILL DO THIS!!!
Glenna

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

I too had problems sleeping and it didn't matter how tired I was. I found that it was a little easier to sleep in a more vertical position instead of laying flat. Use extra pillows to keep your head elevated and see if this helps.

My private duty nurse almost killed me the first time she gave me my tube feeding. She decided since I had to have 8-9 cans of nutrition a day to give me 3 at once. This was just after surgery. The following day I told her just 2 cans at a time just more often. This worked great and at no time did I feel like I was going to explode.

Everyone says more small meals are better, so span your feedings closer together with less to consume and maybe you won't feel like you are floating away.

John oldtmr
Posts: 33
Joined: Jun 2009

Hey Everyone,

Wanted to give you an update on whats happening now. Today will put me over the halfway mark on rad treatments, 17 done and 16 to go. Don't know about the rest of you but the time is flying by for me. Side effects are about the same. Throat is a little sore but no problem getting stuff down. Mostly liquids 'cause it drives me crazy trying to chew stuff up and wash it down, plus everything tastes rotten anyway. So far I've lost 6 to 8 lbs.

About the biggest things bothering now is the mucus and rash around base of my neck. Ruthie suggested Coke for mucus and it works great. 2 or 3 mouth fulls and it cuts it right away. The rash is going to put me over the edge though. I slept about an hour tonight and woke up itching like crazy. Plastered everything with cortizone cream and am hoping to take some more benedryll and be able to get back to sleep.

So for now, good luck to everyone and we will beat the BEAST.
John

pennynl4
Posts: 49
Joined: Jun 2009

Glad to hear you are half done....now it's less than half way done. Sounds like you are doing pretty good considering. You are doing great!! I do hope you can get more sleep.

My husband had to quit his Amifostine shots. Thursday was his last shot. On Friday he wasn't feeling very good.....had a low grade fever and had a different rash up and down his back. The doc said it was probably the shots. He had a low grade fever yesterday and was sick, but with Tylenol and Zofran, he is doing ok.

The mucus is really bad and I will tell him about the coke. Do you swallow it, or just rinse with it? And doesn't it burn?

My husband is drinking a few Ensure a day and trying to eat puddings and ice cream. He says the ice cream burns his throat and the pudding bothers him too. He cut back on the Magic Mouthwash as he thinks it could make him have more mucus.

He sleeps a lot. I have to wake him up on the weekends to give him Ensure and his meds. I know the sleeping will help him heal.

He will be done with treatment on August 18. When will your last treatment be?

Well, take care John, and tell your wife Ruthi hi for me. TOGETHER WE CAN DO THIS.

Take care and God Bless,
Penny

John oldtmr
Posts: 33
Joined: Jun 2009

Hi Penny,

Haven't been in computer, so just catching up. With the Coke I swallow it and after the first mouth full it doesn't seem to burn. Tonight I started taking Musinex again to see if that will help with mucus. Nurse said it would dry me out more, but that's preferable to the mucus.

Monday night is going to be my bad night I guess. Seems that after Sat, and Sun. off of the Amofostine, I have a reaction to the shots on Mon. then do pretty good the rest of the week. About went nuts from the ITCH on upper chest, upper back, and all around base of neck all last evening. Washed whole area and put Benedryll cream on everything,went to bed and slept for an hour and a half and here I am. Not itching but can't sleep. Left side of neck is a mess from rads. Cracked and oozing. Am using Miaderm cream on that area.

I've got 15 treatments left and 3 Erbitux Last Rad is Aug. 24. Nurse said yesterday that rad doc sometimes will double up on rads. Will talk to him today so maybe will find out the plan. I've got mixed emotions on that. On one hand it would shorten treatment time up, but on other hand would probably fry my neck. Whatever he says though. Got to do what we got to do. Whatever happens, this to shall pass!!!

Tell your husband to hang in there and it will soon be over, We'll heal and get back to living again. Hopefully this will seem like a bad dream a few months from now.

Good luck and God Bless,
John

pennynl4
Posts: 49
Joined: Jun 2009

Hi John,

You will be finishing up your treatments a week after my husband. We are counting down the days and crossing off the days on the calendar. It's amazing that July is over. He has 13 more rad treamtments and 3 more Erbitux treatments.The 18th will be his last radiation treatment and the 19th of august will be his last Erbitux treatment.

Are you taking Lorazapam? I know this helps my husband with any anxiety and helps him sleep. Sleep is so important right now. Maybe you could talk to your doctor about the Lorazpam.

My husband took the Mucinex last week, but it burned his throat so bad, he didn't take it again. He is trying to swallow the Coke and that did seem to help.

My husband had a reaction to the Amofostine also. His last shot was last Thursday. My husband had a fever and a different rash than the Erbitux rash. He has the Erbitux rash, which isn't bothering him too much. I do see him scratching some, but it hasn't been an issue. He is taking an antibiotic for that. It is all over his chest, back and some on his face and neck.

His neck is pretty burned too. He has been using Aquafor, Benafine and Aloe Vera.

He is still having difficulty eating, although he has the Magic Mouthwash and the morphine. The pain is horrible for him.

He started using the Fentanyl patch last night. I am a little nervous about the patch and will watch him closely for any reactions.

You are right!!!!! This will be over soon and life can start over again for you both.

Take care John and we will talk soon. It will soon be over!
Penny

lolojldunn
Posts: 37
Joined: Apr 2008

I've been away from the H & N discussion board for a while as I recently had to deal with some SCC skin cancer issues that are hopefully behind me.

I noticed in your post to John that your husband is taking Lorazepam for anxiety and as a sleep aid. Lorazepam was a life saver for me when I was going through my treatment. It was the only way I could get to sleep and it provided quality sleep as well.

Unfortunately for me, I became addicted to the Lorazepam and couldn't sleep without it. It was a monumental challenge to brake the habit. I would like to think that my situation was unique and it won't happen to someone else.

As such, I would encourage you and your husband to discuss it's use with your doctor(s).

Take care,

Jim

pennynl4
Posts: 49
Joined: Jun 2009

Thank you for your feedback on the Lorazepam. How long did you take it and how often? And how did you go about getting off of the Lorazepam? This has been my concern, as well.

Glad to hear your SCC skin cancer is behind you. How long did you have treatments? Did you do both chemo and radiation?

After my husband had his radical neck dissection, the ENT doctor gave him a prescription for Lorazepam for anxiety and his heart palpitations. He takes it maybe once a day, sometimes twice depending on the anxiety.

He will finish with his treatments around August 18 or 19th and we will have to talk to the doctors about his medications. I agree the sooner he can get off Lorazepam the better.

The chemo doctor prescribed a Fentynal patch for pain as he cannot even drink Ensure or Boost without a great deal of pain. Even though he has been taking morphine and the Magic Mouthwash, swallowing is indeed very painful. I was concerned about the Fentynal patch after reading a post about someone hallucinating. After talking to the doctors and pharmacist, I thought I would monitor him closely. He has had the patch on for 33 hours and hopefully if he would have had a reaction he would have had it by now. However, I do know that as your body builds up the medication, it can still give him a reaction.

Thank you for your input and anything else you can add would be appreciated.

Penny

lolojldunn
Posts: 37
Joined: Apr 2008

Hi Penny,
On August 16th I'll be two years post treatment for stage 4 SCC of the right tonsil. The tonsil was removed and the port and the PEG tube were installed. I had 56 radiation treatments (2 a day for 28 days) and 5 or 6 chemo treatments (Cisplatin). I was given Amofostine (sp) every day prior to my 1st radiation treatment. The Lorazepam was prescribed for nausea.

I didn't have any issues with nausea until I was about half-way through my treatments and I got really sick. The Docs decided to suspend treatments for a week to allow me to heal a bit.

I had issues with several of the drugs (including morphine), they all made me sicker! Liquid Motrin and Lorazepam were the only drugs that got me through.

I took two Lorazepam before going to bed as a sleep aid. It was the only way that I could get any form of quality rest. I tried to work through my treatment schedule with moderate success. Fortunately, my job allowed me a great deal of latitude to work around my treatment schedule.

I stayed on the Lorazepam for approximately six to eight months after treatment. My Doc continued to prescribe it without question. I tried sleeping without it to no avail.

I finally mustered up the courage to discuss my apparent problem with the Doc. She wanted to prescribe a sleeping pill! I told her that I wasn't going to trade one addiction for another. I quit Lorazepam cold turkey. After enduring cancer treatment, I figured that I could certainly handle the withdrawal from quitting Lorazepam.

It took approximately two months of many sleepless nights. But finally I could sleep without any chemical assistance! It wasn't easy.

I know that you've read it here on several different posts but it's imperative that your husband stay hydrated and keep trying to swallow as often as possible. It's very painful
but he's got to try to keep using those muscles!

I wish you both the very best. It's one hell of a fight but you will beat the demon into submission.

Take care and may God Bless,
Jim

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

SASH,

Thanks for the advise about using extra pillows. It took me a couple of days to get used to having my head elevated (I kept knocking the pillows off the bed while I was sleeping) but I am now sleeping like a baby. Thank you!!

I have finally been able to do 2 cans during my morning feeding, 2 for lunch and 1 for dinner. This leaves me enough time during the day to drink all of my water and Ensure. Doing much better now thanks to your advice.

I am finally down to 8 more radiation treatments - HOORAY!! The outside of my neck is so red and itchy that I don't think I could take much more of the treatments. I am putting on the creams quite frequently and using Aquaphor but it still tends to feel dry and itchy. I only have 2 more chemo which were scheduled for next Tuesday and Wednesday but now the doctor isn't sure if I can have them. My platelet count is down so they may have to postpone the last 2 treatments if my counts aren't back to normal. He also said he was decreasing my dosage by 5% to see if I could tolerate them better. I asked him if this would effect the effectiveness of my treatment and he said no, he said I was receiving the "big guns" (cisplatin) and a 5% decrease is not that much. I have faith in his decision and am just crossing my fingers that everything is fine by Tuesday. If all goes well I will be finished the treatments for the larynx on August 12th. Not sure when and what they will do for my lung after that.

How is everything going with you, are you able to do the trials you mentioned in an earlier post?

Wish me luck and take care.

Glenna

pmfennell's picture
pmfennell
Posts: 28
Joined: Jun 2009

Hi Glenna,

I am a 6+ year survivor of Squamous Cell Cancer and I too had a feeding tube in. I found that if I did my tube feeding overnight and did oral feedings during the day, I was able to maintain my swallowing abilities and keep the calories coming. I had to do 7 cans a day in the tube so I would load it up with 4 cans and go to bed and when the alarm sounded I would put in the last 3. About 4 am I would be done for the night and happily so. Up for work at 6:30 am. This part was after treatment ended. But, I did not have to do the tube during the day. Check with your nutritionist and see what he/she thinks. But DON'T stop eating by mouth. I would eat 1 scrambled egg in the am and one special type of shake for lunch and sometimes for dinner as well. It was so filling. At my peak I was doing 4000 calories a day and not gaining weight.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Thanks for the overnight feeding advice, I may try it. I haven't given up completely on trying to eat by mouth, if my husband is eating something I always try a bite to see if it tastes good. Unfortunately I still haven't been able to find anything I can tolerate the taste of, not even his delicioius strawberry shakes :(

My nutritionist has me on 2000 calories per day through the tube and my weight is staying the same, which is good. I just finished my last radiation treatment yesterday and am hoping within the next couple of weeks I will be able to start tasting food again. I am still drinking 8 glasses of water per day by mouth so I am still swallowing. My speech therapist also gave me 5 exercises to do daily to help with my throat muscles and swallowing. I'm sure I will get better in time.

Thanks again, Glenna

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

I remember the day of my last IMRT. I had over the 7 weeks become good friends with others in my "class" of folks who treated the same time I did. Every few days we had a graduation celebration for one of us that finished their last treatment. It was an emotional moment and still is, 2 years later. I think often about that "class" and wonder/hope if they are doing as well as I am.

Now, don't go rushing the process. It may be that your taste takes a little longer than a couple of weeks to recover. Remember that the radiation continues to "cook" for 4-6 weeks after the last treatment. Not to be negative here, but in my case my taste and throat situation continued to slide until about a month after treatments. Then, things started to improve but oh so slowly. So don't get discouraged if your progress is not as fast as you would like.

Also don't forget the number one purpose of the feeding tube which is hydration management. It sounds like your caloric intake is perfect. But, over the next few weeks you will have to really focus on hydration. In my case (190 lbs. at the time) I had to push 80-100 ounces of 50-50 Pedialyte and Water each day. Even at that rate I had to have an occasional IV boost of hydrates. So, keep a log of hydration intake as well.

The main thing is you are a Survivor, you have been through a brutal battle with The Beast and you have won. Very few people will ever in their lifetime encounter what you have gone through. Be proud of that. Be positive because of that.

You will do fine................but it will take time. Be patient.............easier said than done, I know.

JK

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