Hi everyone, Simon is now at the end of week 5 of 7 weeks RX, and doing pretty well, all things considered.

His weight is down to 72 kilos down from a pre-diagnosis weight of about 82 and a start-of-treatment weight of about 78. I think that's not too bad, but his RO says if he he loses anymore, there's a risk they'll have to re-do the mask and start the rx all over again.

The technicians say all is going ok so I am wondering if she's talking tough to encourage him to put more down the peg tube. He is putting as much down as he can, in small amounts at a time, as he brings a lot back up. But my main query is can you re-do radiation? Or can they re-callibrate so it goes to slightly different locations. I thought I read somewhere that there is only one shot at rx. Take care everyone.

They may remake the mask to ensure that their targeted tumor masses are subject to the least amount of wiggle room when under the rad but they won't repeat the amount of rad that he's already had.

Loosing weight and this treatment are like a horse and carriage and love and marriage. It happens to probably 90+% of all of us. Heck I lost 30 pounds on a 150 frame. Some weight challenged patients loose 100 pounds during Tx. Not saying you don't pour as much down him as possible but believe me it's just plain hard to maintain ones weight while our body is being subjected to this Tx and the related stress of the Tx and cancer itself.

Hi there Dave's right she's likely trying to push him. The can redo the mask but will not begin at the beginning. Can you do rx a second time...? Yep a few people here have but they've done it after time off and a recurrence - as for the tube - ask what kind of tube it is first - then try adding a little bit of protein powder to each can - mix it very very well to avoid clogs - that will add more calories and help with immunity by boosting his protein intake. it may also help slow his weight loss, good luck!!! I lost 20 lbs during rads - and 10 more after due to dietary change afterwards - almost everyone loses weight... Take care.

Sounds like Simon needs a better RO. Ten kilos is less than 23 pounds. Simon is still almost 160 pounds. I lost over 40 pounds, double what Simon has lost and my RO was worried but treated me like an adult
. Plus your face does not lose that much weight. My mask fit. Last but not least, a new mask does not mean you have to start over. Just get a new mask, 20 to 30 minutes and miss one day.
In this case the technician seems to know more than the RO.
No need to even talk about re- radiation, there is no apparent legitimate reason to stop radiation.
My advice is to escalate this up in the hospital to an administrator if this RO does not shape up.
Charm

If you do not have a feeding machine or a feeding pump then ask for one. Simon can have it running while he sleeps and get extra nutrition in. Running it overnight can get an extra 2 or 3 cans in. That should help with the weight loss. Its darn hard to get thru treatments without losing weight. So far his weight is doing ok, the goal is zero weight loss but thats almost impossible. I lost 65 pounds when going thru chemo/rads. Unfortunately there are a few tough weeks where things will get a little more difficult coming up. So try your best to get those extra calories in. Maybe adding some water to the formula would help with keeping it down. Also, have Simon sit still for about 30 minutes after a feeding to help him with digestion. He should not lay down after a feeding, he needs to sit up.

Thanks David, Charm, Christine and Cheryl. Everything you say makes perfect sense and will be passed on to Si as soon as I stop typing.

One thing this experience has certainly taught me is that you don't go through any medical situation meekly. When the illness is not life threatening you probably don't notice the glitches and inconsistencies in treatment, but when it's the Big C, and you're watching everyone like a hawk, and reading every syllable on every report, it's a real eye-opener.

In our house, we keep wondering how people with, for example, poor literacy skills or not much family support manage these situations. Take care and many thanks. Linda

I was one of those weight challenged persons. I lost 100 lbs by treatment end, my mask did not fit any longer. I had to make sure I was perfectly still and not moved. Even the radiation therapist told me I need to stop losing weight. Hello, I can't eat. Now I have gained about 20 of that back unfortunately. Trying to maintain where I am right now.

My Alex is 6"1"(184cm) tall and of slight build. So his normal weight was 70-75kg. He was 60kg by start of treatment which is why getting the PEG was the first thing he did after diagnosis. Even so, with complications related to the chemo round (collapsed lung) he dropped from 60kg to 48kg which caused another hospital admission for malnutrition. He was so emaciated, that the doctors even refused to complete his chemo round if he didn't gain weight. In hospital he was put on a pump which Christine mentioned and he was able to hook up and get 2000 calories into him overnight. Now this is not easy but beats certain death because treatment can't be completed.

The happy ending is that Alex gained 7kg, finished his chemo and went on to complete his chemoradiation too. At 55kg, he was 5kg under what he was when fitted for the mask and nobody even suggested that he delay treatment.

I think your RO is trying to impress upon your brother how important it is for him to push as hard as he can to maintain his nutrition. Unfortunately, your RO is ignorant of how hard this is, when 100mLs of liquid nutrition makes Simon feel bloated, he is frightened that any more will make him sick thereby negating his initial efforts and the whole thing is time consuming and soul destroying whilst he is probably feeling the worst he has ever felt in his life! A little bit of empathy please!!

Ignore the RO and get help from the nutritionist. Alex couldn't handle TwoCal as it was too rich. We were also advised to water it down which didn't suit Alex as it prolonged the process and made feeding a daylong exercise at a time when he couldn't even think straight enough to follow a half hour TV show. Alex's turning point was the pump and a new formula (Nutrison) which gave him enough calories to keep him at 55kg and gave him the opportunity to have small amounts of nutrition through the day. The pump feed did have to be switched over half way through the night though so we were advised to sit down early in the evening and let the first bag run through while Alex was still awake, and then put the 2nd bag through while he was asleep. Alex elected to get up in the middle of the night for the changeover (much to the annoyance of me and the cat). He had it down pat, and 1 month on, he was doing it in the dark, just before the alarm went off to wake us and the neighbours, in about 2 minutes. He was snoring within minutes of the changeover. I almost wrote that he could do it in his sleep because there were times that he was so quick I would wake him up to do the changeover, thinking he had turned of the alarm and just gone back to sleep and discover that he had already done it.

Does your brother actually need any further help with his feeding? I say this because I don't know how tall he is and how much weight loss he can get away with. His losses may be acceptable to him so may not want to explore other options. If he is inclined to explore options, I would definitely get him to talk to the nutritionist about changing his feed formula to see if he can tolerate something else better. I would also float the idea of a pump as something to consider.

Alex continues to struggle with his weight but he has gained a further 8kgs and sits around 63kgs. Still underweight but at least he doesn't look like his father any more.

Hi Linda, my husband Steve completed his treatment in August 2009 at Newcastle in NSW. He's 181cm tall and prior to cancer weighed around 72kg. At diagnosis he was 66kg and during treatment he dropped to 51kg fully clothed in winter clothing and steel capped boots. We are now over 2 years out and he is still hovering around 56-57kg. He is way underweight but his energy levels are good, back to normal and in all other respects he is going well apart from some jaw issues. But the weight issue, or should I say lack of weight is a never ending battle on our end. Steve had the peg during treatment and had his 2cal that way. After chemo we always had to drop a couple of tins as it made him feel worse. Our dietician worked with us and we mostly let Steve lead the way at these times but made sure when he was feeling good that we worked on putting weight back onto him. We had a pump set up so that he got his 2cal overnight while we slept. Made a very difficult experience a bit easier to get through by doing this.

Steve only ate icecream towards the end of treatment and drank apple juice. Everything else was via his peg. And yes the horrid mucous was an issue in the last couple of weeks. We found the better hydrated steve was the better it was overall with regards to nausea and mucous. Didn't get rid of it but made it a little easier to deal with.

Hopefully some of what I've written will be of some help to you and your brother. I'm very glad that you found the guys here. They are a godsend and will help you and your brother to battle this disease.

Most likely the RO was talking about needing to re-planning the IMRT treatments, not re-starting them.

Some CCC take weight loss quite serious - as did mine!

From a MDA article:

"...Some patients receiving radiation therapy to the head and neck region will have significant anatomic changes during their course of treatment, including shrinking primary tumors or nodal masses, resolving postsurgical edema, and weight loss [4�7]. An example of such a case is shown in Figure 2. This illustrates how common on-treatment anatomical changes render an original IMRT plan to be less conformal than its original intent..."

Source: http://www.hindawi.com/journals/jo/2011/690595/