Hi -
Well, I've had 12 of the 30 treatments and now I'm feeling the side effects. I didn't think they would be this bad and now I'm scared about how I will get through the rest of the treatments if it just gets worse and worse. I have a sore throat, ulcers on my tounge and my mouth is full of mucus all the time. Swallowing is very hard already. I know I have to keep eating, so I swish Ulcerase(numbs your mouth) in my mouth and then pour an ensure or two down there while it doesn't hurt too much. Does anyone have an tips or words or wisdom? Good medications? I have Vicodin but it doesn't seem to do anything. Now I can see why people get the PEG but I'm scared of that two becuase I heard your swallowing muslces atrophy.
Err...I can't believe I'm the one who posted before about working during this I answer a few emails now and then for the office but I stopped as of this week. No way could I do it.
Thanks
Melissa

Melissa,

Hang in there. I had a peg but still opted to try to get some boost or ensure down every once and a while. When I was in your stage of radiation I felt the same way. At three weeks my Dr. gave me a break for a week and prescribed a Fentanyl Transdermal System patch. I was given the 50mg and it was wonderful. You may sleep heavily the first few days but the pain relief is indescribable. After my radiation I was reduced to a 25mg until my mouth sores were reduced significantly. Ask you Dr. at your next visit and please stay in touch with your progress.

Best Regards,

Sandra

P.S. I finished my radiation and chemo Nov 11, 2006.

Hi Melissa

I feel for you. You're still only half way and it has to get worse before it gets better, I'm afraid. I too did not have a PEG and was using Ensure for my nourisment - in fact my doctor insisted that I used that for 6 months after my treatment. It is important to get as much fluid and nourishment as you can into your body and inevitably you will lose weight. Now, one year on from my treatment, I wonder whether I could have tried cold rice pudding when I was suffering, as I have just recently re-discovered it and it slides down well.

By the way - I continued working throughout my treatment - there were a couple of weeks that I called in sick - but for me, work was a detraction from "feeling sorry for myself".

I wish you all the strength needed to get through the next few weeks and will follow your posts closely - Be strong!

regards - Pete

Well whilst some can work many of us were also unable to work. I found it totally debilitating. I would go to treatment and by the time we arrived home be ready to flake out on the bed. What with all that solpadol, morphine and the rads and living off very few calories you do feel utterly exhausted. I do believ this also depends on age, your state of health when treated and how many radiation treatments you get. Surely those who get two bursts won't suffer as much as those who get 4 bursts over a larger area.
Drink lots of water before and after treament and if you can try to drink in the night. Keep very clear notes of every tablet you take. I found putting them on a teaplate and noting the time of taking them essential to make me see them.
After a while one tablet blurs into another.

Foods - go for blands - like porridge with extra milk added once its cooked to make it soupy. marks tubs of aspargus soup, milky rice pudding, plain yoghurt and anything soft and bland you can tolerate.

The ulcers actually do get better some weeks in, even with more rads on top.
Anyway just be very kind to yourself.

You can read about my taste problems in my diary. It may help you to gain persepctive of where you are with this. 10 days in it gets rough but you will cope. http://fashion-era.com/Radiotherapy_2.htm

You might also find Barrys diary at his bdssite useful.
http://www.bdssite.com/

Melissa,

Sorry to hear that you are finding the treatment rough. I was like Pauline, unable to work through my treatment. In fact I gave up work a couple of weeks before the treatment when I caught a sore throat, having returned to work for a few weeks between my surgery (tonsillectomy) and radiotherapy. It seems that we are all different, so just listen to what your body tells you, and don't overdo it. The most important thing now is to look after yourself well, and to try to eat whatever you can. For me ice cold milkshakes worked well, as did pasta in a cheese sauce. For breakfast I recommend a sweet, fluffy omelette.
You can buy tablet holders which are divided by day and time and these are useful to make sure that you don't accidentally take too much medication. But I also wrote down every time I took any medication, and then you can look back to see when you took your last pain relief. To this daily record I also added everything I ate, so that I could look back to see what nutrition I had taken. Do be careful if you are given morphine for pain relief, as one of the most common side effects is constipation. If you start taking morphine then I also recommend keeping track of how often you 'go', to avoid this very unpleasant side effect.
Hang in there, it will be worth it in the end.
Jenni

Thanks so much everybody for your replies. It is so nice to hear from people who have been there. Today the resident doctor gave me a rinse to numb my mouth before eating, and tomorrow I'm seeing the senior Dr and they will give me Fentanyl or morphine if I ask for it. I think I will go for it.

Pauline, I have read your's and Barry's sites before(one day I read through almost all of them). It's very informative. Your burns looked very painful but you look great now! Thank goodness I don't have any, I think it's because my tumor was deep inside so they said I wouldn't get too much. Maybe someday I will get a story up there- I can offer the perspective of someone with a 5 month old baby. I take his pictures with me to the treatments when I'm feeling sorry for myself to remember to "buck up".
Melissa

Hi Melissa,
To write pages about your feelings/treatment you will find it easier if you keep a hand diary of notes. I did begin typing it on the pc but in aweek 3 it was too much.

As the weeks go on everything does become harder as the cancer treatment seems relentless and also you feel very much left on your own once away from the daily hospital routine after the 30 treatments or whatever complete. Once district nurses stop calling you feel even more in a void and left to get on with your new way of life and different daily living. Food tastes awful, but noone but those very close seem to understand and you feel on fire even after a long glass of water for some time after treatment stops. Expect to feel very irritated by relatives on the phone who say you must eat when they haven't a clue how hard it is.

I think in my notes I used a scale of 1 to 10 to describe my feeling for pain with 12 being beyond belief! Plus a note on my mood and a record of even small amounts of food managed.
Words/phrases like world go away, diabolical, ghastly, terrifying can all be used to guage your pain and feelings when set against softer words like cheerful, ok day and comfortable.

Jenni suggested souffle omelette and I found them especially good when cooked lightly. I found though one egg enough as your tum soon accepts food in much smaller portions. Even half a tub of caramel custard becomes too much at some point, so little and often is the key. You may also find buttery freshly cooked thin pancakes acceptable as the thinner they are the easier they slither down. I am really sorry I never drank prune juice during my treatment. It may be a fast way of getting some good fruit into you as it also has a little iron and works better for me than lactulose or fybogel or codanthromer. But as Jenni suggests do be proactive with the laxatives.

Hi Everyone-
Just an update, I'm almost done (3 days to go!). They gave me a fentanyl patch which really helps. I tried morphine for a while but it made me really sick. I also have fentanyl "lollipops" that I use for breakthrough pain. Jenni, can you explain what the sweet omeltte is? I've been on liquids for months but now I'm adding back in things like chicken noodle soup(the kid's kind with tiny noodles), and I ate some poached eggs the other day. I have a hard time chewing becuase I have a tounge ulcer which feels gross when I chew. But I figure I should try to get more solid foods in there.
Anyway, just wanted to say "hi" and check in.
Melissa

Jenni,


Hi, I am glad the Phentynol worked out for you. I thought it wast the best when I went through my treatments. I noticed you live in California so do I. Can I ask what city? I live in Redondo Beach, CA. I am so happy you are almost finished with the hard part. You sound like you are doing well.

Have you tried protein shakes, pudding or French Onion Soup?

Take Care.

Whoops. I put Jenni when I meant Melissa.

Sooo Sorry!

Sandra

Hi Melissa

Nearly over - well done. Now you have to go through the recovery process. Sometimes it may be difficult - but it does get better! I went to see my Professor yesterday (14 months after my last radiation therapy) and he was extremely positive with my recovery - and even commented on the fact that I had put on weight!!

Fingers crossed for a speedy recovery for you too

Pete

quote:

Melissa55

Melissa
Could I just give you one warning It caught me out and I think everyone will agree, It going to be two to three weeks before you start to feel any improvement. Only because the Rad treatment has finished does not mean the treatment has it’s still at work for a while. The hard bit almost over the daily visit’s to the hospital for treatment. hang in there.

Melissa,

As Rolf says don't expect too rapid an improvement. My radiotherapists didn't tell me until the last day of my treatment that I wasn't going to start getting better immediately. It was very hard to be told that when I was feeling really rough and was desperate to start recovering as soon as possible. You are sounding very positive at the moment, and I hope that you continue to feel OK.


To make a sweet omelete
Seperate two eggs into whites and yolks
Beat the whites until stiff, taking care that the bowl & fork are completely free of grease to ensure that you incorporate as much air as possible.


Mix the yolks with some caster sugar (finely ground sugar)
fold the two mixtures together, then tip into a lightly greased pan, and cook gently. When the undersiode is cooked, put the pan under a hot grill to cook the top surface. Normally I would sprinkle a little more sugar on top to give a nice crisp topping, but I ommitted this when my throat was very sore. When the omelette is cooked tip it onto a warm plate, and this can be served with jam if you like.

The wonderful thing about this is that you can add as much sugar as yoiu like, depending on how sensitive your taste buds are at the moment. It comes out as a light souffle style omelete that melts easily in your mouth and slides down a sopre throat without too much difficulty.

Melissa, the next few weeks will be the hardest for you, and it is very strange not to have the daily contact with the radiotherapists at the hospital.In the UK this is the time when the responsibility for your care moves from the hospital to your own doctor, I'm not sure if the same thing happens in the US. Make sure you know who to call if you have any problems, and do take very good care of yourself.

Best of Luck

Jenni

Thanks everyone- yes, my doctor has said that I will feel the same for about two weeks and then start to get better. It does seem wierd though that during the treatment they want to see you every two days, then afterwards you don't see them for a month!
I will give the omelete a try Jenni, thanks.
Sandra, I live in Sunnyvale, it's between San Jose and San Francisco.
Melissa