Skin care during radiation

[Anonymous]

Hi Angie

The Strata is meant to be applied commencing a couple of weeks before treatment and for at least 4 weeks after completion (or until skin is back to normal).  It is applied twice daily on the areas affected by radiation, but this is not always easy to recognise early on.

I asked my radiation oncologist to show me the treatment planning images that show where the radiation will be targetted, it is really important to recognise that you will get burns where it passes through your skin where entering your body, and also where it passes back out through your skin on the other side.  In my second round of treatment I wasn't initially getting it onto all the area at back of my neck and shoulder where radiation was exiting and it started to get dry and flaky until I noticed.

A little Strata goes a long way, its not meant to go on like other moisturiser that soak into your skins, Strata forms a layer on top of your skin to trap in natural moisture and oils and it only take a little to achieve this.  When you start to get sore and tender with dry skin try not to rub the strata in circles as this will aggravate the situation.  All the hard little skin flakes mix with the ointment to make an abrasive paste.

I used to squeeze some on my fingers and wipe it in a line across middle of the treatment area and then gently spread it in both directions away from that line using a wiping motion.

Your cancer care nurses should be able to help with some pointer - perhaps if your hospital doesn't use Strata they aren't sure what advice to give you.  RBWH (Brisbane) now use it as their standard care after they did a clinical trial to prove its effectiveness, so they could give me good advice.

Hope that helps, I cover it a little in my youtube vlog as well  https://youtu.be/lg0CQV1RhqQ 

Hope all goes well for you through treatment and beyond

Shane

[angieh]

HI Shane,

Thank you very much for your detailed reply to me. That is really helpful information. i have just completed my 5th week of treatment, so have 2 more weeks to go, and then however long recovery takes.

When I looked at your photo, in the post I recognised you from last Monday at RBWH. You were there with your wife/partner and I noticed you both because

1. you were there as a couple  and

2. you both looked very fit and well so it was debatable which one of you had cancer and

3. you both looked like you would be runners.  

I was there on my own (I won't let my husband set foot in the hospital) and was feeling particularly dreadful which turned out to be that I needed to go on drip and also needed potassium. Consequently spent most of Monday hooked to the drips and that got me sorted. 

Hope all is going well with you. thanks again for your help,

Angela

[Anonymous]

Hi Angieh

I guess by now you are through the 7 weeks and cancer and deep in the worst week, hopefully things are going well for you.

I smiled at your description, after two lots of radiation with chemo and some surgery I certainly notice the aging effect it has so it good to hear things must be holding up okay.  My wife also got a kick out of thinking she looks like a runner as she doesn't feel great about letting some things slide since cancer got our lives derailed over the last few years.

I'm back in there Monday for another round of immunotherapy, part of the palliative treatment program I'm now that I've had a second recurrence with no cure likely.

Keep fighting, you're nearly there, it gets easier from here!!

[angieh]

Hi Shane,

I finished my treatment on 17th April, and felt dreadful for the first 7 days. Just as I reached depths of despair, I began to improve slightly. Just enough each day to give me hope. 

Can't taste anything of course and am almost fully reliant on the PEG.  I manage to swallow some oats each morning but anything else tastes hideous.  I fantasise about being able to taste food again and have taken to watching food and cooking shows on tv (which is something I would never previously watch).  I don't know how long it will be until my tastebuds return but when they do I will be ready to appreciate food like I never did before!

I am very sorry to hear that you have had second recurrence. I cannot begin to imagine how you and your wife are coping with that news. 

I am glad my comments about you being runners didn't offend. I always notice runners because I am a runner myself. Or at least I was a runner before this detour in life.  Running has been my form of therapy and meditation since I was about 30  (I am 56 now).  I am not a fast runner, slow and steady is best description but running has been one of the joys of my life.  A week ago, I could not believe I would ever have strength to run again.  But just the little improvements in the last couple of days have given me hope.

Best wishes to you and your wife,

Angela

[CaptainAustrali]

Angela - one really important thing for you to take heart from:  if you can swallow *anything* at this stage, it's a great sign.

I was PEG reliant for almost 3 months following on from the end of treatment, and, like you - the 7 days following on from treatment were the worst in my life.

It got better over time, a slow process for me.  If you can take food/water by mouth at this early stage, you should be really encouraged that your recovery will have a pretty quick trajectory.

[angieh]

Hello Captain Australia (great name),

Thank you for pointing out the positives, it really helps me.  

I can swallow a little water too, although it tastes quite dreadful so I only drink the minimum and do the rest of water via PEG.  I long to be able to eat some other soft foods but my mouth ulcers are too sensitive at this stage. The oats are ok because they are so very bland and don't irritate. It's a slow process, lots of milk and safe, careful swallowing but I can manage it.

How long did it take for your tastebuds to return (even a little bit)?

[CaptainAustrali]

I couldn't eat for months after treatment due to the rancid taste dysgeusia and when I could eat it was only liquid - basically taking the PEG shakes but via mouth.  After a week or so of doing that, taste started to slowly come back.

If I had to think back and guess a trajectory it looks something like this:

Reliant on PEG:  for me 3 months / guessing for you no more than 4 more weeks

After PEG removal:  spent about 3-4 weeks taking shakes only / based on you eating/drinking this early, would guess a week or less

From there:  soups, then mushy stuff like ice cream, custard, etc

I think rich foods like crème brule etc helped to stimulate taste - but once you're eating again, it just gradually improves week for week until it hits a ceiling .. I think the ceiling might physically be reached after only a few weeks, but you kinda spend a few months experimenting with different foods and trying to work out where you're at.

I think you might lose things at an ingredient level - eg, milk is good for me, and I can taste most of milk-related food products, but potato is no good, can't taste it in mash potato or whatever, through to chips and batter and anything that might have potato in it, for some reason I just can't taste it at all.

But yeah, if I had to guess based on where you're at now, I'd frame my expectations toward gradually transitioning from PEG to shakes & soups over the next 4 weeks (and once you've consistently not needed the PEG for nutrition/hydration schedule to get it yanked).   Once you're on soups, allow a month or something like that to slowly get the bulk of your taste back.  

After that, you may still make discoveries after six months to year, or maybe that's just the adjustment period to finally get used to the new normal.

[Anonymous]

Hey Angieh

Glad you're climbing out of the treatment hole, you'll be running again soon if you haven't already started.  Before I got sidelined I mainly kept fit by competitive surfski paddling, with a few 5k runs thrown in each week - 3 years of atrophy and deconditioning makes the prospect of getting to that level of fitness again a hard thing to contemplate so I really encourage you to get out there as soon as you can to hold onto whatever fitness and strength you can.  Lots of articles out there about the benefits of exercise to cancer treatment and recovery + the mental benefits.

So far immunotherapy is treating me well in terms of side effects, I have a CT scan next month to see if the new cancer is receding or not.

Cheers

Shane

[angieh]

Hi Shane,

How lovely to hear from you and very happy that your immunotherapy is going well.

I have continued to improve every day and last week I returned to work in a part time capacity.  The only problem I have is that my hearing has been effected by either the chemo or radiation or both. Sounds are not as sharp as they were previously. It is particularly noticeable in the work space and I find I have to ask colleagues to repeat some words when they are presenting complex issues to me. I recognised quickly that this means I need to give the speaker my full attention from the first word. It is a skill that I will have to work on!

I had my first check up post treatment yesterday and my specialist is very happy with how well I am healing. My PET scan will be done in mid July, and as you know, it is the scan that will tell the truth about how effective the treatment has been.  Time will tell but until then I am just getting on with life.

On physical side, I am now eating all my meals (no peg feeds at all) and my weight is stable. I will be able to have the peg tube removed in another week or so.  I am trying to be more active with walking each day.  I reckon I will soon be ready to start gently running again (especially after peg removed).  I am hoping that my body has retained some running fitness but am prepared for being a beginner again if that is what it takes.   Aside from the other health benefits, exercise is the best stress release for me. Running is my own form of meditation and it doesn't matter what time or distance I run. Every step taken is a positive thing and a good run can be outright joyful.

Hope all continues to go well for you. Please stay in touch.

Angela

[Anonymous]

Great to hear you're doing so well Angie!   Yes tinnitus is a curse, they blamed mine on chemo and it did get better over time, though background noise still makes it hard to join in conversations in public places.

Keep safe and well (: