My new follow up plan – Stage IV NED 30+ mos.

This seems to be a common topic so I will post what we decided to to with me :).

I wasn't able to "graduate" to yearly scans and I understand that.  (Gotta respect ol' Mel, the ultimate enemy).  This is what the new game plan is in light of my NED following IL-2, and the great article on long term survivors who underwent treatment with success.

This seems to be a common topic so I will post what we decided to to with me :).

I wasn't able to "graduate" to yearly scans and I understand that.  (Gotta respect ol' Mel, the ultimate enemy).  This is what the new game plan is in light of my NED following IL-2, and the great article on long term survivors who underwent treatment with success.

I will continue to get scanned every 6 months until????, but instead of doing everything I will alternate between whole body CT (without GI contrast – yippee), and PET/CT.  Any small bowel lesions should show up on the PET if missed on the CT without contrast.  My brain MRI's will be done annually instead of every 6 months.

I am so glad to be able to reduce the types and numbers of scans, yet keep an eye on things every 6 months by doing some sort of whole body scan.  This reduces cost, time spent away from home (I fly to Oahu and usually have to spend the night), and exposure to contrast materials and extra radiation, yet still keeps an eye on things twice a year.

Not bad.  Makes sense, great compromise.

My doc and I still don't care for the idea of scan only if you have symptoms, especially in light of the newer drugs and clinical trials.  By the time you have symptoms, you might as well be planning your funeral.  I never had symptoms of stage IV disease, and the only reason my mole was even biopsied was because it was black and began to itch.  IT never followed the ABCDE or ugly duckling criterion.  At most there was the itch and uneven elevation with very subtle asymmetry.

Oh… and I got sort of scolded for not doing more regarding patient advocacy.

1. Our pre-vet club is highlighting skin cancer for our college RFL next week.  I also plan to add our veterinary patients to that as well.  Carole K had some great materials that I have kept for just this purpose.

2. There is upcoming legislation for HI to enact a tanning bill similar to other states that have done so previously.  I may need y'all to blast our legislators when the time comes.

3.  I went to a school meeting to fight against the No sunglasses or hats allowed rule.  It is stupid, NOT sun-safe, and I don't see what the problem is about calling a kid out who's wearing a cap gangster style or wearing sunglasses indoors about the proper ettiquite of hats and sunglasses in public.  I was extremely pissed about no sunscreen in school because you can apply it at home.  (Like the stuff lasts all day?!).  I am currently trying to come up with an idea on how to survey our schools on their sunscreen policy so we can allow for it in school.  Perhaps even develop a sun-safety curriculum.

4.  I wish we would pass all playground equipment be covered by 99% sunproof sails or shades that will protect the play area from 10-3.  Not only will it prolong the lifespan of the equipment and prevent burned backsides on slides, but will encourage excercise.

I have taken on steps 1-3 and am trying to work on 4.  I guess I have to put more effort and voice behind what I have done so others will finally listen.

(Hi Dr. Morita if you are reading this ;O)