Day three and my big strong man is crumbling before my eyes.How the hell is this happening so quickly? What happened to the first couple of weeks that were going to be ok? Robins neck is bright red and sore to touch,the roof of his mouth burns when he eats(which he cant or wont)his jaw is so stiff he cant open his mouth or chew and he is sitting half asleep like a stunned mullet!!!.I have done everything that was advised but nothing prepared for him getting side affects so quickly.He is devestated.He is eating on average 400 calories a day which i know is not enough,and evening meal times are turning into a war zone of cant wont and you must.His total for today being two mini quiche at 12 md and nothing since.At present it is 20.00 and he is asleep.We see the oncologist on thursday,but i wonder if i should ask to see the nutritionist when we go for treatment tomorrow.

I never thought this would actually happen this quickly i feel so helpless and so angry.

Liz,

It does seem unusually early to have such a severe response to radiation. I would definitely advise you to see the nutritionist tomorrow -- if Robin is already having serious eating problems, they need to work with him to get him back on track (and probably make sure he has a tube in place for feeding). He will probably need a minumum of somewhere around 2,500-3,000 calories eaach day throughout treatment, so if he's having this much trouble now, his medical team will have to come up with a better plan.

Cathy

I'm confused. Your signature says that radiation started on Jan. 3rd. So is he on day 3 of treatment or day 3 post treatment?!?!

If it's day 3 post Tx, then he is as beat up as he can be and it can actually get a little worse (but the skin damage should start healing as soon the beam goes off). If he is in day 3 of treatment and having this kind of reaction, I would be making an immediate appointment with his RO - his response to treatment is not typical.

Oops - I forgot that you're from the UK and they do DD/MM/YYYY where in the US we MM/DD/YYYY So ignore the first part...

Gary,

I think the treatment started on March 1st, not Jan 3rd. The Brits write dates differently than us Yanks.

Cookey,

It's awful soon to be going through the side effects you mention. The treatment hits everyone differently and not knowin Robin's dosages it's hard to say why this has all started so soon. Cathy is right though, you need to see the nutritionist ASAP. Also speak with his Docs about the early onset of the moth sores and pain. Did you say whether Robin had a PEG tube or not. Hang in there you have a very long way to go yet.

Tim

Hi Liz,

This isn't typical and I would ask to see the doctor tomorrow when you go to radiation. It seems too early for it to be this severe. Definitely speak to the nutritionist as well. If solid food is too hard for him at any point I would try liquid formulas. We put a lot of things in the blender and added water till we got a consistency Jack could tolerate. Have they given him anything for pain?

Regards JoAnne

Liz, the early onset of the side effects of rad are one thing and you've gotten good advice above. I want to address a different side of this issue and that is you. Helping Robin deal with this is going to be really tough on you. Here are some things that I believe will help. School yourself in what is going on in every step of his treatment.[the fact that you knew he was reacting badly early on to rad. is good]. The more you know what may happen, the quicker you can spot a problem and the better advocate you will be with his Docs. I don't know what your basis personality is, but mine was " genteel southern lady" before John was diagnosed. After his diagnosis, I learned to become a force to be reckoned with! You may have to insist on help,
push for pain meds, and most of all, learn to be stronger than Robin when it comes to insisting on nutrition and hydration. It is an awesome responsibility to be the caregiver to a loved one with this kind of cancer. The treatment is hard, frustrating and scary. You are going to need to be very strong and very "in the know" to help him as you want to. Keep posting, keep on the Docs and try to keep yourself well and as balanced as possible.[Yeah, I know that last part is imposible] Amy in the Ozarks

Jam i am a tigress when it comes to my family and i am sure i am considered a bloody nuisance by the cancer centre already! I think maybe where i need to clarify things is
1)Robin has not been able to eat properly for nearly two weeks because of jaw stiffness and neuralgia.I have insisted on appointments with our GP and last week the oncology registrar and apart from saying he should do jaw exersises and that he has damage to his trigeminal nerve,the actual practical help is thin on the ground.He has been taking amitryptizol 10mg at night for the neuralgia but apparently this takes about three weeks to help (if it does at all.)Since his treatment started highly flavoured foods are hurting the inside of his mouth as well(on the roof part)
2)His skin has been ultra sensative since the surgery as all the nerves stared to recover Shaving hurts but he could only shave three times a week at most before the surgery as he is what we in England call an "ginger minger"(an affectionately derogatory term for a blue eyed red head)and a glance of sunshine burns his skin.
3)His mind fix makes meal times a battle and i am a bully.He says you get yours and i will eat later,then he falls asleep and doesnt eat at all.
4)Every morning he gets up full of enthusiasm about the day but once work and treatment are over he justs goes down like a pricked balloon.I want him to get as much rest as possible but i just need him to eat before he goes to sleep!!!How frustrating is this grrrr

We had a chat about it before he went to work this morning and i told him if he wont cooperate then its back to the liquidiser.Strangely he was quite happy with this suggestion as it is the chewing which seems to be the problem area so we will see how dinner goes tonight .He is due to have a full blood work up today and sees the oncologist on Thursday.his weight is now 13stone 10 lbs a loss of 12 lbs so far.
His pain meds are now including tramadol at night time which is helping too.
when i read this i see for myself that really the radiotherapy hasnt caused much more problems than he had already maybe they just seem worse because of the radiotherapy being added to the mix.
Sorry about the date thing Gary i will try to remember to put it in long hand.thanks again for all you help and support.

Hi, Liz, a few thoughts here: We bought a battery operated razor with 4 or 5 different tips for John to use after rad. started. It was much easier on his skin. Back to liquid foods is a good thing!! Any way you can get food and hydration down him will help. There are some good recipes on OCF for people with swallowing difficulties. John slept almost around the clock for 6 weeks after rad ended- it really wiped him out. Since Robin is still working, my guess is he is exhausted by the end of the day. I like hearing that you are a "bloody nusiance" That's a good thing! Amy in the Oz

Hi Liz,
I don't know if it was because of his name or the fact that I have a blue-eyed redheaded sister, but when you said he was already burnt 3 days in I knew he had to be a redhead. He is going to suffer skin damage must worst than the rest of us. I found Biafine to be the best to put on after radiation treatment. Hope it is available in UK.

I also truly understand his moods going cold turkey on cigarettes. I smoked for 37 years and quit cold turkey when dx in 1997. You DID NOT want to be around me if everything was not going well. Since he already has mouth sores, he will not be able to drink. Watch out for thrush. White stuff on cheeks and tongue. Reeks havoc with mouth.

He has to get at least 2000, probably more calories a day to keep weight up. Eating alone will not do it. He needs to drink Carnation VHC or Ensure PLUS or whatever high protein shakes are available in England. He may need a PEG tube but also remember swallowing is important to keep the muscles moving. Treat this as medicine not food. You have to get it down some how.

Sounds like he has has own business. If so, radiation wears you down the further into it you get. So I would not schedule any long term projects for the next several months and schedule longer days at the beginning of the week. Since he seems to be having symptoms early on, maybe he should plan to work only part time or not at all for the next couple of months.

Just some thoughts and remember to take time for yourself. This gets lots worst and Robin seems to getting the worst of it early. We are here for you. Rant, rave and scream. Let him rant, rave and scream. It is a release. Both of you will need it.

Hang in there, we'll get you through it.

Take care,
Eileen

Hi Liz, You go girl!!! Be a bloody nuisance and anything else you need to be to get the answers to your questions and make sure his symptoms are being addressed. Learning to be persistent is one of the basic caregiver skills.

It sounds like he has trimsus. Stretching his jaw by yawning movements, slowly opening and closing is good. Jack got something called a therabyte jaw exerciser. They have a website. Is there anything similar that your insurance would cover in England? It's important to keep moving his jaw so it doesn't get worse thru the radiation. If you do a search on this forum and on the homepage you'll get lots of information on trismus.

Interesting that he wasn't upset about the liquid food, in some ways that could take some pressure off. Jack liked Dinty Moore Beef stew all blended up. You can throw a lot of different foods in there. Think things in sauces or gravies. Jack also had problems with spices in his food during treatments so that's common.

Are they giving him any cream for his skin? I have that same blue eye red head fair skin and it does make you feel like the vampires avoiding sunlight. It will complicate the radiation and I would keep asking about that one.

Being tired is also common, and that will get worse. Jack wasn't working thru the treatments and still came home and slept afterwards. These treatments are exhausting and take a lot of energy so it's understandable. Also it's mentally exhausting and sleeping is a way of coping. It sounds like you just need to find a way to balance the nutrition. For us that was me setting up a schedule with target amounts of food and water and hounding him. Some days it worked and others it didn't but we kept at it.

Keep us posted.
Regards JoAnne

-Well yet again you guys have come through with brilliant support and advice.I did liquidise dinner last night and he a ate some but not very much and when i asked him why? he said he had had enough.What do i do in answer to that?I felt like crying to be honest,something that i feel a lot when he wont do what i suggest or ask is that selfish?I spend my day trying to think of things to feed him and they end up in the bin and i just feel like i have my children back at weaning stage again.All i need is for him to tip his plate upside down on his head !!!
And then this morning ,just like my little boy used to, he sat on the edge of the bed and said look Liz and pulled his bottom lip down.The skin on his lips has all peeled of and the inside of his bottom lip looks like chopped liver.I feel such a cow now.
the postman has just delivered a biotene dry mouth care system that i ordered on line and some mouth spray so i will read the litreture and see how it all works,but will speak to the radiologist about his lips this afternoon.I am going to make a big pot of soup and a beef casserole today and see how we get on and most of all try to remember that this about Rob and not me lol.
see you all tomorrow(i guess you are all in bed as i write this)
love

Liz - Not all of us are in bed at this hour, and I can really feel your frustration and worry. My son also started to get the effects of the radiation very early on. He spent most of the time sitting cross legged on the bed, staring at the bowl of chicken broth before him on a tray, and after only a few sips he was finished. It is so hard to know when to push and when to hold back a little or when to just give him a gentle hug. I learned not to make too much of any one thing because I never knew when his taste would change and when he couldn't tolerate a certain drink or food anymore. There were times when he would get irritated with me, telling me I didn't understand what he was feeling. He said that trying to swallow was like sharp knives stabbing his throat. Liz, keep trying and make sure he gets enough water. I know it is so difficult to see someone you care about going through such pain and feeling so helpless especially when it looks like they are not really trying. The biotene should work - I've read lots of good about it. And make sure the doctor knows what is happening. At one point, my son said he was going to take a couple of days off from the treatment but I convinced him to at least see the doctor which he did and the doctor, after seeing his throat, put him on a week long break. It is better not to have to take a break but it did give him a chance to heal a little bit. You have gotten lots of good advice above. JoAnn mentioned setting up a schedule and that's what I did. I put a chart on the refrigerator with times and how much and what liquids he had and I insisted he write down everything he had. Keep trying - one day it will get better! You take care of yourself, too and keep us posted.

Liz,

You really have no appetite when your mouth is sore, your skin is on fire. your throat hurts, you feel tired and mentally you are battling this cancer demon.

That said...it is nevertheless exremely important for him to understand that if he doesn't swallow 48ozs of water and 2000 cals minimum a day things WILL get much worse, even spiral out of control to the point where he will end up in the ER to get fluids. It also doesn't take long for that to happen. His body is being attacked by cancer and his body is being attacked by the radaition. He MUST give the body it's food and water to fight back.

I should know, I ended up in the ER 3 times during Tx even though I had been warned and had a wife like you that nagged the crap out of me. Maybe you can convince him to be smarter than me and not put himself through additional and totally unnecessary torture. Please get him to read this post and if he wants to e me tell him I'm here to help him not make his life more complicated.

Hi Liz,

I think when he says he's full he really might be and what I'd do with Jack was going back to the total amount needed during the day. We just tried it again a little later. It's not possible to eat the same amount as he always did at this point, but he has to switch his thinking over to small amounts taken more frequently.

It's also about packing in as many calories as you can in those small amounts. Even if he's not listening to you about having a schedule, keep at that because it gives him control if he can decide when and how much to eat - as long as at the end of the day he's somewhere near his total amount.

You and Rob are a team here and it's not easy to be either a patient or a caregiver. You both are seeing this from different perspectives - and that's the point. He can't be left to just ignore the basic routine that will get him through these treatments and you can't decide for him. So we all struggle to find the right balance on when to push and when to back away. If there was an easy answer to that then none of us would be posting.

Be patient but realistic on how serious the side effects are from not getting enough water and food. Jack ended up in the hospital with an infection towards the end even with me hovering all over him. You can't prevent every bad thing from happening, but being creative in getting in enough attempts at eating and taking water during the day is one we at least have a good shot at.

Regards JoAnne

Cookey, and anyone else interested: A year ago I found the following websites and got some very good info on high calorie, easy to swallow, easy to blend in a processor, recipes.
http://rex.nci.nih.gov/NCI_Pub_Interface/Eating_Hints/eatdiets.html
http://www.cancer.org
http://web.cancernutritioninfo.com
http://kidshealth.org [look for recipes for kids with cystic fibrosis] high nutrition recipes
Also, the University of Virginia Health Center has a Digestive Health Center section with High Calorie Liquid Diet recipes and hints.

I still have about 100 pages of printed recipes and hint that I would be happy to mail anyone who wants them. Amy

There were tears this morning i am afraind ,and they weren't Robins.Is it unusual for a carer to feel totally useless and not valued at all?We have reached a stone wall where Rob is saying "its my cancer and i will do it my way"He wont even look at the products i have got ,he considers fighting it to mean "the doctors told me this would happen so why are you stressing about it"he justs believes he has to suck for it.He didnt tell the radiographer his lips and mouth are burnt ,and when i asked why, he said "they told us this would happen"I spent the whole day yesterday making stew and casserole, and fresh soup to put in his flask for work,and this morning he went to work with a packet of cup o'soup which is just processed crap.
The thing is he knows he is hurting me by rejecting all my attempts to help,and undermining my contribution,but he keeps doing it.Then all of a sudden he will try one of the things i have bought to help and come into the room and say" that new mouthwash is good love".I dont know wether to back off and let him get ill and then pick up the pieces or just live in a war zone.My gut tells me to speak to Dr Whitikar when we see him today and tell him that he is not eating and that his mouth is burnt .Its a trying time ,but he did manage a little dinner last night.

Liz - It is not at all unusual to feel totally useless and not valued. As CG to my son I felt that often. The "processed crap" that Rob took to work was probably his way of being in control and his way of coping or just something that he felt he could tolerate. At least he took that. And going to work is amazing! My son just started a full time job 3 weeks ago (almost 3 months post Tx) and told me he realizes that not being able to find a job before now was actually a blessing since he couldn't have been able to handle a work schedule any sooner. I made all kinds of nutritious soups and casseroles (and I am a good cook) but what my son ended up getting the most out of was the canned Campbell's chicken noodle soup. I felt replaced by a can of soup but I did manage to say "Wow! you ate 3 whole noodles this time. Maybe tomorrow you will be able to eat 6 noodles with the broth!" The next time Robin says "that ___was good love" hang on to that, jump up and down and yell "hurray"! When I found something helpful that could apply to my son's treatment on the OCF site, I would print out copies for my son to read so that it wasn't just me telling him what to do and I was overjoyed when he said something like "Well, that does make sense". Fighting and surviving cancer is a really rough road and so difficult for a CG to know when to back off or when to be firm but we can get through it and there are small successes along the way that we can celebrate. Celebrations are definitely better than war zones.

Today is a better day.When he came home for his treatment ,he told me he couldnt eat the packet soup because it made his tongue sting,so he went to the kitchen and warmed up a good size bowl of mine,and ate the lot!!!!His jaw stiffness seems much improved and his neuralgia seems to be responding to the tryptizol at last.Last night he ate beef casserole and two dumplings and then fell sound asleep.Treatment today was rearranged for 9am due to a linear accelarator breakdown so i will be interested to see how he copes with treatment before work.I got him to eat two poached eggs on toast before he left and he took a flask of soup so.....fingers crossed.Weekend off treatment now so a couple of days to see how he is feeling.

Thanks for those links, Amy! As I make the transition back to a person who can eat again, some of those recipes will come in handy...

Nelie