The Mask and Weight Loss

Chicklette

Hello Everyone,

My husband will be going in for his mask fitting on the 18th.  We are both curious about the mask and weight loss.  My husband has put on a lot of weight in the past few weeks since he has been eating anything and everything while he can.  Doctor's (and wife's) orders.  ;-)  However, we are wondering what happens when he loses a bunch of weight, which we fully expect will happen.  One of the first places he loses weight is in his face.  I assume this will affect the way his mask fits.  If this happens, will he be fitted for a new mask and remapped for radiation treatment?  Does anyone have any experience with this? 

Just curious.  Thanks. 

~Chicklette~

mskitty137

Yep. My hubby had to have his

Yep. My hubby had to have his mask refitted about 1/2 way through.

CivilMatt

tighten my mask

Chicklette,

Yes, you are curious and curious good.

I have lots off mask experience, but none with loss of face weight and size.

So, I defer to mskitty137, the daily mask expert.

Matt

Kapital

mask

I wondered about the same thing. My husband lost a lot of weight (75 lbs) during treatment for tonsil cancer, but never had his mask remade. An aquaintance of mine, whose husband went through treatment for base of tongue cancer at the same time, had to have his mask remade half way through due to weight loss. I think it's very individualized. Everyone looses weight in a different way, therefore, I think the changes in the way the mask fit would also be individualized. 

SASH

Mask

If the mask becomes loose the techs will notice it and depending on how far from the end of treatment will make a recommendation if the mask will need to be remade.  They are the experts on this.  Even though through treatment I lost 95 pounds, my mask still fit at the end of radiation.  I think they may have punch some new mount holes in mine so it would still hold my head in place where they wanted it.

MMDowns

My husbands lost about 20lbs

My husbands lost about 20lbs and hasn't said anything about refitting of the mask.  That's a good question. 

sherylcv13

My husband also lost some

My husband also lost some weight during treatment (some in his face and neck) and had to have his mask redone in week 5 of 7. 

 

SuzJ

Mine

actually got tighter around week 3, I felt like it was strangling me...

Its back to what it was tho..

Chicklette

Thank You

Thanks for the responses.  I guess we will have to leave this in the hands of the experts.  My husband was weighed today and was disgusted by how much weight he has gained.  But, I'm sure he will lose a lot of it once he starts treatment, so I'm not concerned at all.  I just have a feeling he may need a refitting in a few weeks.

dw195

Chicklette said:

Thank You

Thanks for the responses.  I guess we will have to leave this in the hands of the experts.  My husband was weighed today and was disgusted by how much weight he has gained.  But, I'm sure he will lose a lot of it once he starts treatment, so I'm not concerned at all.  I just have a feeling he may need a refitting in a few weeks.

Mask and Weight

It's good that he's gained weight. I gained over ten pounds before starting treatment and lost 25 overall. I'm not that big - i was at 185 to start and now at 160 post treatment. He will lose weight, probably a lot. I hope he's tried all of his favorite foods, I'm still in the wonky taste bud stage where I have some taste but it's strange tastes. Beer all tastes like oranges for example.

I lost weight in the face but the techs didn't think I needed to re-make the mask. It was so tight at the beginning so I was glad it became a little bit loose. I'm at 4 weeks post treatment and beginning to get my strength back a little each day. Good luck on your journey and try to stay positive!!!

Don

Sprint Car Dude

Mask

I lost about 45 lbs during treatment. Personally I made mention that the mask was loose in a few places but chose to hold as still as I could rather than have a refitting of a the mask. I hated that thing. Mine was super tight at the begininng. So we have all had the walk of shame with the waffle prints on our faces while walking out of the cancer center. Wear them like a badge of courage.

Chicklette

dw195 said:

Mask and Weight

It's good that he's gained weight. I gained over ten pounds before starting treatment and lost 25 overall. I'm not that big - i was at 185 to start and now at 160 post treatment. He will lose weight, probably a lot. I hope he's tried all of his favorite foods, I'm still in the wonky taste bud stage where I have some taste but it's strange tastes. Beer all tastes like oranges for example.

I lost weight in the face but the techs didn't think I needed to re-make the mask. It was so tight at the beginning so I was glad it became a little bit loose. I'm at 4 weeks post treatment and beginning to get my strength back a little each day. Good luck on your journey and try to stay positive!!!

Don

Thanks

I'm glad to hear you are on the mend.  He's been eating and I keep encouraging him to eat what he wants.  When we go out to eat (which is often) I always make him choose the restaurant.

Chicklette

Sprint Car Dude said:

Mask

I lost about 45 lbs during treatment. Personally I made mention that the mask was loose in a few places but chose to hold as still as I could rather than have a refitting of a the mask. I hated that thing. Mine was super tight at the begininng. So we have all had the walk of shame with the waffle prints on our faces while walking out of the cancer center. Wear them like a badge of courage.

No Shame!

You earned those waffle marks!  My husband'a mask has an open face.  I had never seen one like that.  He will probably leave treatments with "ring around the face"

Captain Australia

Dieticians and the "don't lose weight" message ...

One thing you're told in early treatment, when freshly diagnosed and trying to take everything in is "don't lose weight during treatment"

It's actually bogus.  There are a variety of scholarly articles and studies that demonstrate that losing weight during treatment has no measurable impact on the clinical outcomes and quality of life scores.  (Talking about the cohort of people who were already over-weight or obese).

In fact, if you force yourself to eat during therapy and are suffering dysgeusia (taste loss/distortion), especially the kind that makes food rancid, you can develop some pretty significant food aversions and aversion-based swallowing problems.  If a person is already heavy, they should have NO WORRIES at all about losing weight during treatment.

The radiologists and technicians and nurses will all tell you that re-fitting the mask is routine, something done on the same day, and is not disruptive to treatment.

What bugs me is that the dieticians will IMPLY that it's a major problem, and create a lot of stress around the issue.

The message should be "during treatment, make best effort to be at a HEALTHY WEIGHT (or above), if you're already carrying around extra calories it'll help you get through, don't worry too much about the loss as long as you stay above X kilos.  Your focus should be on hydration, protein and nutrition in that order, calories can be last on the list"

MMDowns

Captain Australia said:

Dieticians and the "don't lose weight" message ...

One thing you're told in early treatment, when freshly diagnosed and trying to take everything in is "don't lose weight during treatment"

It's actually bogus.  There are a variety of scholarly articles and studies that demonstrate that losing weight during treatment has no measurable impact on the clinical outcomes and quality of life scores.  (Talking about the cohort of people who were already over-weight or obese).

In fact, if you force yourself to eat during therapy and are suffering dysgeusia (taste loss/distortion), especially the kind that makes food rancid, you can develop some pretty significant food aversions and aversion-based swallowing problems.  If a person is already heavy, they should have NO WORRIES at all about losing weight during treatment.

The radiologists and technicians and nurses will all tell you that re-fitting the mask is routine, something done on the same day, and is not disruptive to treatment.

What bugs me is that the dieticians will IMPLY that it's a major problem, and create a lot of stress around the issue.

The message should be "during treatment, make best effort to be at a HEALTHY WEIGHT (or above), if you're already carrying around extra calories it'll help you get through, don't worry too much about the loss as long as you stay above X kilos.  Your focus should be on hydration, protein and nutrition in that order, calories can be last on the list"

Absolutely agree on the

Absolutely agree on the nutrionist part.  Ours made my husband feel frantic about getting in copious amounts of calories.  It was only until I posted on here and got really good responses and ideas that we both calmed down about the calories.

Captain Australia

Incomplete Advice Given Early

Yeah, the thing about the dieticians is they usually get their message imprinted on you very early in the game, when you're still dewey-eyed and impressionable and eager to fight hard and be compliant across all fronts.

But it just isn't backed by the science.  Weight loss BEFORE treatment is very bad:  indicative of an aggressive and late stage cancer eating up healthy mass... but weight loss during treatment is scientifically substantiated as FINE (unless you're already underweight or at risk of dehydration & malnutrition).

Personally, I put on 8 kilos in the early weeks of treatment based on their bogus advice - as soon as I found out I had cancer, I started a healthy "cancer diet" with all these cruciferous vegetables, lean protein, great diet .. and I felt so strong.  These idiots were advising me to eat pizza, big macs, anything and everything, because I had to pre-empt any weight loss (I was already 30k or more over my ideal bodyweight, and it was a non-issue, but because they got in early with an ignorant point of view, it caused physical problems and a lot of compliance-distress as it became harder.

Fighting cancer is hard enough, listen to your body is the best advice .. iif you can't eat .. don't.  Just find ways to maintain hydration, protein, nutrition (in that order of priority).

As a foot-note:  Apparently protein is vitally important to the recovery-speed.  You should start with your bodyweight in kilos, and then basically double it .. and that is the amount of grams of protein you should want each day.  (As protein is the foundation of body-repair).  Also raw veges and foods rich in enzymes.  (So example, if I'm 100kg body weight, I want 200grams of protein per day).

It's not that hard to do, even on a PEG, if you supplement any formula (eg sustagen) with the kind of protein supplements bodybuilders use (eg musashi)