Proton Therapy at Scripps

Colorado is looking to do an epic white water rafting season, our snow pack is 150% of normal.  And I'm on blood thinners and a major bleeding risk until at least September (our rivers are pretty rocky, the fear is impact, and maybe broken bones).  Sooo, maybe day hikes.   I found my late appearing neck burns healed quickly, about 10 days.  I only started burning my last week, so I didn't have a lot.  Yes, Aquaphor is messy, but man does it work.  RadiaDres dealt with all pain, and healed things quickly.  But it runs around +$3 a 6"x6" patch, and a patch lasts for a couple of hours.  Also the patches have no adhesive so I had to hold mine in place with a scarf.

I found it took about a week after the radiation pounding stopped to where I began to be able to swallow.  From there the nutrition drinks eventually got me to around 2,000 daily calories.  I stayed there for the last two and 1/2 months, but this week started making the shift to normal food.  I might have started earlier, but the interest wasn't there, plus mucus continues to show up, vastly less, but still there.  It's actually going pretty well.  Avoiding anything acidic and hard or dry like bread, but real food makes getting 2,000 calories trival.   Had fishsticks with ranch dressing today.  Two tsp of ranch dressing are 240 calories, a single fish stick is +50.  That was just an experiment with lunch.  Lunch was Lobster bisque, 380 calories for a cup, plus a cup of potato soup - 160 calories.  Being on the side of not getting enough calories, I now look at the foods I used to eat and understand why I could never lose weight. We have sooo many calories in our normal foods.

Fruit has turned out to be good.  Surprising things on taste like I can taste cantalope, pineapple, bananas, not mango, grapes honeydew.  Apricots and pears kick in so much fiber that constipation is ovah.   Dry mouth is now my big problem.  I tried all the sprays, and xylimelts patches.  No good. but chewing gum and sipping water is working nicely.

Congrats.  I'll be interested to hear if IMPT rather than total IMRT reduced some of the post-treatment misery.  I just entered week 10 of Post, last night joined family and friends in a [mild] chili dinner, and even ate guacamole on chips (well supplimented with water).  Most things have some taste, many things have their 'normal' taste.  Some of that is changes in just the last week.  Muscus is trivial, about the same as clearing your throat when you have a cold. I've stopped counting calories, and will be making a donation of nutrition shakes to the local foodbank.  Even dry mouth, which is still present, is becoming manageable.

Beer, however, tasted really bad.

Congratulations, Don!!!  I'm sure that you were extremely happy ringing the bell and knowing your treatments are over!!!  John ate his first 100% normal meal one month after his last proton treatment so maybe you will, too. When you get to that point, remember to drink lots of water while eating solid food.  John wrote down everything he consumed for the first few months so if you need some food ideas, let us know.

In the meantime, keep drinking. You might want to try Odwalla protein shakes as an alternative sometimes. They might taste better than Ensure Plus but the calories are a little less I think. Your neck will heal quickly now that it's not being hit with radiation. Take it easy for awhile...the lingering effects of chemo and rads will stay with you and you will continue to feel tired. 

Best wishes for a speedy recovery. The worst is behind you!!

Nancy

dw195 said:

4 Week Update

I had my 4 week check up last week and thankfully there is no sign of the tumor!!! That was some amazing news, i'm beginning to get some taste back but still  mainly on liquid diet. Not eating real food is so hard :-( Fatigue is still there but not as bad, my Doctor was surprised and happy at how well I'm doing. All I could think was if I'm doing well then I pray for those not doing well after treatment. It truly is torture, but worth it in the end.

I want to thank everyone again that responded to my posts and contacted me personally. You lifted up my spirits when things were the darkest.

:-) Don

I will be very interested in details of your recovery.  Proton wasn't an option for me, and most of us here are pretty acquainted with the after effects of radiation.   So was your 4 week exam the PET?  If it was that's nearly two months earlier than for IMRT.

I was just thinking about you and thought I'd log in and see if you had posted.  Great to know that the scoping showed no evidence of disease.  Hopefully the PET will confirm that.  Let us know if you want suggestions on "real food" to try.  Hang in there!  It only gets better from here on out.

Nancy and John

Hi Don. Thanks for the update. I’ll share with John. So glad that you are doing so well.