 Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Welcome to the forum although I’m sorry you have to join our circle of friends.
What have your doctors told you about your possible treatment? Will the fact that you are on a targeted drug for CLL complicate matters? Will radiation mean that yoou’ll have to stop the targeted therapy? These are questions I would ask the doctors prior to going into radiation if I were in your position.
ChristineB may know if there is a Hope Lodge near MDA where you can stay at a very reasonable rate during treatment.
I believe how difficult radiation is going to be is partly determined by how much you’ll be getting. I have no experience with proton therapy so I can’t speak to that. My husband had IMRT. He was a very fit, active 65 year old but he had 70 grays of radiation and that meant he couldn’t escape any of the side effects. I would suggest thinking more in terms of “if I get hit by all the side effects” rather than “maybe I won’t get hit by any side effects.” Prepare for the worst but hope for the best.
Do keep us posted about how you are doing.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| 
