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