Hi my name is Liz and my husband Robin is 44 years old and about to embark on the roller coaster ride that is radiotherapy.He was diagnosed with primary scc of the right side of the tongue and a secondary tumour on the left side of his jaw and neck on December 8th.Since then he has had the primary removed with laser therapy, had a bilateral radical neck dissection and removal of the secondary tumour.This treatment is being finished of with six weeks off radiotherapy to both sides of his mouth and the floor.This was decided to be the best treatment because tests and scans have not revealed how the cancer spread from the right to the left side so they do not actually know if they have got all the cells.I am a long since retired SRN and have read a great deal about radiotherapy and i would be very grateful for any tips,help and advice on how to deal with internal and external side effects of this
aggressive treatment.
Robin is a blue eyed fair skinned red head,will this make skin damage worse?What are the best cremes and lotions to use,what should we avoid?How long before eating becomes difficult .Does it hurt? will he be able to work?(he is a plumber)i have a million questions maybe someother peoples experiences will help me to help him.I would be grateful

Liz,

I'll start by copying a post I did a couple of months ago about my concurrent chemorad and I'm sure you will get useful info from others as well. You didn't mention what type of rad he will be receiving (I had IMRT) and I also had chemo concurrent with my rad tx so there may be some differences in side effects but here goes:

To, BB and Betty,

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?

Dear David
thankyou so much for taking so much trouble with your reply.Robin is having external radiotherapy only, to three different places.His left neck area,the right side of his tongue,and the floor of his mouth.Thirty treatments spread over six weeks five days a week.He was back working fulltime three weeks post op but he is not doing so well at the moment.Hyper sensitivity to cold on his facial skin,teeth and scar tissue are making him quite miserable and his jaw is aching badly where the large secodary tumour was removed(6cm*5cm)and making eating painful again.i think my questions are going to be ongoing as they arise so please watch out for my posts as i will be glad for your support.My husband is not that easy to live with at the moment ,but i keep trying to think how i might feel if i was in his position.He always uses the word"we"when talking about hospital visits and doctors appointments ,as we do everything together involving his treatment, but ultimately it is his illness and it is him who is undergoing the operations and the therapy.I look forward to the benefit of your experience in the future
thanks again

Liz,

You are his caregiver and that is not an easy task. You will experience as much pain, frustration and mental anguish as he will, only in different ways. Don't ever underestimate the value you bring to this fight. He wouldn't stand a chance without you. To this day I credit my wife as saving my life several times during the course of my Tx. You need to take care of yourself as well. He his not the only victim of this cancer, but he is the only one receiving treatment. You also will need some "treatment" mostly in the mental arena. Make time for yourself. Scream at someone occasionally (not him) like us. Just remember he needs you now more than ever, even if he won't admit it now.

There is another Forum called Caregiver/C0-Survivor where you can ask those experts how to deal with all your upcomming issues. This is a great site for all.

Hi Liz,

I only had a single tumor in the tongue with cells spreading to one lymph node on the same side of the neck. I had radiation on both sides of the mouth/neck and from the front.

Like David has posted, everyone tends to react differently. However, I can tell you that nutrition is the single most important thing you can do to help your husband right now. You really want to try and avoid getting a PEG (feeding) tube if he can avoid it to prevent a longer recover period. Without nutrition he is going to get tired quickly from the radiation process and also run the risk of having to stop the treatments and start over again. With nutrition, it allows the body to heal a bit between each session.

As for his skin, think of it as a really bad sunburn -- the worst he will have in his life. Aloe based creams help with the burn. Vitamin E creams help with the healing and scars. The best is actually breaking open Vitamin E pills and rub the liquid from the pills on the area of skin.

You may have read some of the posts about the magic mouthwash. Ask your doctor about it. It mixes several drugs together to relieve the pain inside the mouth to help your husband keep eating (back to nutrition -- am I making my point clear about nutrition?).

Working will be touch and go to be honest. It all depends on how much energy he has (which again partially depends on nutrition). Radiation really zaps you over time. I worked the first two weeks of treatment and took the next five off. It took a week or so after treatments stop to regain enough energy to go back to work. I am a software engineer and sit in front of a computer all day. My work is a lot less physical than a plumbers so you can imagine that he will not feel like working on some days.

You may also want to check with the caregivers group to see how to handle his moods, etc. They have been there. The survivors have not

Take care and tell him to fight hard.

Jim

Liz,

The best skin burn product by far for me was Silvadine. This was for pretty ugly burning on the right side of my neck and it seemed to do wonders. It was prescribed by my radiation doc.. Has Reg been fitted with a PEG (feeding) tube? This would take care of eating and swallowing problems to a great extent. I found eating/swallowing problems to begin around the 3rd to 4th week of treatment and then started using the tube. Loss of taste began around the end of the 2nd week with first horrible taste sensed being chocolate. It is difficult to address his individual ability to work as his treatment progresses as everyone is affected differently.

Bill D.

Liz,
Externally, fair skinned people tend to fare worse in RT. "Radiacare" works well (usually the rad techs can give you samples) and they may prescribe some prescription creams as well like "Desonide" (mainly for itching/scratching - which is VERY bad -NEVER scratch!) Moisturing creams ot lotions with Aloe Vera seem to work the best). Be careful to arrive for RT treatments with dry, clean skin - no lotions or creams - they can have a "bolus" effect and exacerbate the skin damage. I would avoid petroleum based products in general. The "fair skin" shouldn't make any difference internally as I will explain below.

The good news is that the skin on the neck is the first thing to heal post Tx. Internally may be another matter.

Internally, he will probably have burns, mucositus, blisters, thrush, etc., and other damage from the RT and it takes the longest time to heal. He may lose his voice for a time and will have pain swallowing (possibly even severe if unmedicated). It will also take time for the damaged eustacian tubes to recover and this can cause hearing problems and pain (from fluid build up in the ear) as well. This can take months to turn around.

The general rule is 1 month of recovery for each week of RT. I have seen very few beat this rule in the 5 years I have been on the board. He will also lose muscle tone from being sedentary from all of the pain meds, malnutrition and cancer fatigue.

As Bill stated above, we all respond differently to treatment but what he and I described is pretty much the norm. He will start to turn the corner about a month or so post Tx and progress will be very slow in the beginning - measured in 3 week increments (for any even barely noticable improvements) for another month then healing will pick up. Not having side effects from treatment is nonsense, it's a matter of degree.

I personally feel that patients should have the worse case scenario explained to them rather than a "blue sky". Prepare for the worst and hope for the best. Emotionally it is better to lower expecatations and be realistic about what to expect. Kind of like boot camp - you know that it's going to suck so you just take it one day at a time, suck it up, and get through it.

Davids "repost" is a fairly detailed and accurate description. I also lost my high frequency hearing response but it returned as soon as the eustacian tubes regenenerated.

Im summation, RT is not a walk in the park - it is more difficult than surgery and recovery is slow and tedious. Acceptance of the realities of this is the key to getting through it.

Liz,

I have fair skin that tends to burn easily, but I was fortunate to get through radiation with only a moderate color change in my jaw/neck area. However, the inside of my mouth was another story altogether -- very consistent with Gary's description of blisters, burns, thrush, etc. It started around the end of week 3 or beginning of week 4 and continued well past the last treatment. While I was able to keep working at least part time during treatment (I was 39 at the time), I had a desk job rather than one requiring lots of physical stamina, so Robin may well find that he has to take some time off pretty soon.

Gary -- I'm still getting some of the ear effects, almost 18 years later. The side where the tumor was has a chronic tendency to block with hard wax that can only be reached and pulled out by a doctor. There's always a telltale buildup of pressure, and I know it's time to deal with it again. Just a couple of hours ago I was putting in drops to get ready for another trip to the doctor's office.

Cathy

Cathy,
I have my ears cleaned at every H&N surgeon visit. It doesn't hurt, only takes a minute or so and it does help my hearing.

Liz, Cathy is correct also that some people experience no more than a mild sunburn from radiation. That was pretty much my experience.

I found Biafine Cream worked wonderfully on my burned skin. If use is started a few weeks before radiation starts, it is supposed to help prevent burning. It is a deep wound healing lotion and I used on scar after second ND to help it heal. It is prescription.

Take care,
Eileen

Liz,

Another point I would like to mention perhaps was one of those things that just happened to hit me during Tx and that is constipation! A couple of my Oncology nurses mentioned it somewhat in passing but didn't emphasize it nearly enough as it applied to me. It seems that heavy pain meds will tend to cause this as the meds actually block (not to be gross) the ever so slight signals/pain associated with normal bowel activity. In other words, the brain fails to get the normal sensory signals that normally tell one when to head to the loo!

Just something to mention that you folks might want to keep in mind.

Bill D.

Adding to Bill's post, I found constipation to be the worst side effect of them all. Pain can be managed, they did a lousy job with constipation and it can really make you suffer, especially when homeostasis stops. The pain meds are the culprit; dietary fiber, staying hydrated, stool softeners, Reglan, fruit in your diet all help. Talk to your nutritionist.

Oh Dear
Iam really not sure that either Robin or myself are gonna get through this experience!!! At the moment we are at t-4days.Radiotherapy starts on March 1st.Thursday we went to the hospital for the last simulator session and we had to hang about for ages.Robins stress levels just went through the roof!It minded me of when my children were small.I feel like turning him over my knee and paddling his bum.Nothing that anyone says or does is right .Its like he feels the world is ganging up on him .He seems to be deliberately trying to either hurt my feelings or provoke a confrontation so that he can ultimately say to me "stuff the radiotherapy,i am not going to have it "Every medication that he is given to try to help ends up in the bin and everything the doctors say is rubbish.God help us both!
It is a little difficult being a member from England because although you wonderful Americans are as supportive as i have ever seen in a group,treatment here is different in some respects,and medications is very different.No mention has been made of any provision being made rgarding a peg or any feeding advice(maybe they will do that as and when)I have already been told that these great pain patches you get are not available in this country which seems a great shame to me also there seems not much choice in pain relief availability between codeine and paracetamol and morphine.Nevertheless i am researching everything you tell me to see what our equivilants are and i think i am practically as prepared as i can be.As for the emotional preparation,ONE DAY AT A TIME lol.
Thanks again my friends
god blessyou all in your fight with this wretched disease
Liz

If Robin continues to work in his chosen profession, it is absolutely IMPERATIVE that you find some way of separating his neck from the slime, mold and general corrosion a plumber inevitably comes in contact with. I am a nurse, and am facing the same issues. Ideally, Tegaderm or Op-cite would be the answer, but once you glue those thin pieces of adhesive plastic on, you must ultimately tear them off. BAD SCENE! You want to hear SCREAMING? So the best thing would be to get some Silvadene or Zinc Oxide and goop his neck up, then put an ABD pad or gauze dressing over top and try to find some place that doesn't hurt to stick the tape to. Then a turtleneck shirt or sweater. Just keep the radiation site from getting an infection in it.

Best of luck, I am now 9 treatments away from being done.

Andrea

Hi Liz,
I am also in the UK, North West and am about to start week 6 (finish a week today, hoorah!) of radiotherapy and weekly chemo. I had a bilateral neck dissection & free flap surgery at the start of December -Radiotherapy/chemo began third week in Jan. I have followed many postings here and carefully read all of the advice, invaluable. However, as everyone says, we all respond differently to the treatments and in many respects, mine has passed okay so far. I hope that the journey for you and Robin will be as smooth as possible. My own experiences may not be comparable, but...
I have, so far, had 22 treatments to each side of the neck, mouth and throat and for the final 8 treatments, just each side of my face. As a result, the neck is now a little sore post radiatin, but not relly burnt. I wake up several times in the night to plaster myself with E45 cream and also use Radiance Gel which I bought on-line (Bristol Cancer Centre) very soothing and cooling. The sides of my mouth and the neck scar are the most tender but a little Aloe Vera gel has helped the mouth. I have also been drinking a cup of camomile with Manuka Honey 15 mins before and after radiotherpay as anectdotal evidence suggests this can reduce mucositis and I believe for me it has. The flip side is that with teeth being at risk from the treatment, scrupulous brushing and mouthwashing are imperative! Christies in Manchester are trialling the use of Manuka Honey for H&N patients, so I thought it was worth a try! I have a PEG fitted but haven't had to use it and although eating isn't really a pleasure at the moment, I have taken the advice to view food as medicine and eaten what and when I can, even if it tastes of very little. To be honest the taste aspect changes day by day. Week 3 I thought I wouldn't be be able to manage to eat for much longer, but that passed and I found some savoury foods ok. Sweet taste is now lost, but I am taking Zinc as I read that this helps with getting taste back, eventually.
As for tiredness, it comes and goes. I am 36 and am not used to having to give in to sleepiness, but for the last week, I have accepted that it's essential to rest as much as I can, when I feel tired. No medals for shaking off the fatigue! That said, I have been relieved not to to be utterly overwhelmed all the time:)
I drink water as much as I can, even when not remotely thirsty, as everyone who has gone through this advised; I think it helps.
As for pain relief, I was given a liquid paracetamol solution to use 4 times a day - before eating is best - and this has been fine, although it stings a bit when your mouth is sore. Also Difflam mouth wash, watered down though, as it is quite strong. The hospital also recommend Bicarb and salt mouth wash.
I don't know if this of any help, however, good luck to you both and your family inthe weeks ahead. It does pass faster than you might imagine and you're right, posters her are so very helpful and supportive, which is great for us.
Georgia

Hi Georgia
nice to meet a fellow countryman on this great site,and how good it was to hear your experience and treatment in the Uk.You seem to be coping very well with your radiotherapy and i will find it easier to source some of the products you recommended as i know they will be available here.It is very interesting to see the differences in cancer management in our two countries and i get the impression that patients in the US are a lot more involved in the whole process of diagnosis and treatment,and possibly have many more options in pain managent and more input into the whole procedure.
thanks again to you all

Hi Liz,

Just like you and Georgia, I am also in the UK, it does seem that the treatment and medication on offer are diffrent in the States, however the advise and support has been just what I have needed.

The biggest problem Mum and I have come across is people not wanting to tell her how things are, it is like they do not think she will cope with the info, what they do not know is she a stronge cookie and if they don't tell her she thinks that is because it is bad, often it has not been as bad as she will have prepared herself for.

Mum had lymph nodes 1 - 4 removed 23.1.07 good recovery from the operation, but low red blood cells meant she was short of breath and at risk of aspiration, everything now goes via the PEG and apart from WANTING a cup of tea, she is coping very well. The PEG will mean she does get her 2000 calories a day plus all the water she needs.
Go for a PEG if you can, you may be glad of the option later on.

The best thing we have found for the pain is a combination of MST (slow release morphine) every 12 hours plus Gabapentine (slow release for the nerve pain) every 8 hours plus paracetamel every 4 hpurs during the day, most of the time Mum is pain free. I say we because seeing her suffer breaks my heart.

Mum has her 1st of 34 radiotheraphy treatments today. I am concerned that her red blood count will get worse throughout the treatment, and we are trying to avoid her going back to hospital due to the pain managment not being dealt with last time she was in there. Has anyone out there be offered EPO, I have asked for it and been told it is not avaiable on the NHS and probably not worth me paying for it.

Thanks everyone for all you support.

Andrea Eve

Liz,

Tell Robin to just settle down, put on his big boy knickers and take the prescribed treatment in stride! I know it is difficult not to be mad at the world when we have to face such challenges but things do happen. I felt somewhat the same way when diagnosed last April and went through a few days of shock, self-pity and mad at everyone including myself as a smoker for 40 years. I then had to come to grips with the fact that all of the emotions in the world would not rid my body of this horrible disease. I then realized it was time to get on the offensive and "slay the dragon". Robin may think that he just doesn't have the time or patience to deal with this but remind him and stress to him the fact that any other available options are not all that attractive.

Good luck and let us know how things progress.

Bill D.

Oh Bill how i chuckled as i read your words"big boy knickers" thanks for putting a smile on my face for the first time in days.He seems to have settled down for now so lets hope it stays that way.