I talked with my doctor yesterday and the prospect of only needing 8 treatments instead of 12 came up. He said he was going to think about it and see what my next scan shows. I am guessing I will end up doing all 12.
He said the extra treatments won't put me at greater risk for long term side effects than I already have and ensure the cancer is gone, but the thought of another 3 months of treatments feels endless.
Has anyone had to decide with their doc between 8 and 12? And why not 9 or 10, if anyone knows? Any advice?
Kmelick,
Hi. What was your original dx?
Hang in there. We've made it this far!
-Paul
Hey Paul- My dr. said it could be 8 or 12 depending on my response but didn't commit to an exact number because he didn't want me to count on 8 and then have to do 12- which he was very upfront with. Prepare for the long term. But I don't get why it can't be 10. Right now I am just wondering if the cancer is gone at 8 then is it really necessary to expose my body to 4 more treatments? I know only my dr. can make this decision but am curious what other people have heard/think.
And your right- we will get through this!
Kristi -
Your doc said, "the extra treatments won't put me at greater risk for long term side effects than I already have" and that's plain bullshit. It might be true, it might not be true. He or she has no idea whether or not you'll develop secondary cancers later in life, or other side effects. No fucking idea. If oncs had such a crystal ball, the cancer world would be so astonishingly different. He may be going off the experience he has in his practice, but he can't reasonably make predictions like that.
And let's say he's in 20 years that he's wrong, that you develop an NHL. Today nobody could convincingly link it to your treatments (maybe in 20 years they will be able to), there would just be a suspicion.
Bottom line is that virtually every oncologist is totally and completely uninterested in you 20 years from now. They are focused on fixing you TODAY-- nevermind what happens later. that's the anti-cancer mindset, and who can blame them with cancer's track record?
But in Hodgkin's, treatments have come so far that we now have the luxury of looking ahead and trying to avoid secondary cancers. that's what the German Hodgkin's Study Group's paper on HL is all about.
Ross
Ross- Thank you so much. I read the journal postings and they are so informative. I am definitely going to be pushing for 8 instead of 12 with the follow-up radiation as long as my next scan is clear!
Ross- Thank you so much. I read the journal postings and they are so informative. I am definitely going to be pushing for 8 instead of 12 with the follow-up radiation as long as my next scan is clear!
Kmelick / Ross,
Great questions and links.
I have #8 ABVD this week and since reading the articles, I'm going to have to find out the radiation dosage that is planned for me... After reading the articles, I'm thinking 20Gy of involved-field radiation therapy instead of 30Gy...
-Paul
Paul and Kristi -
Here's a link to a video overview on YouTube of the study. Of all the points to take in, one not to overlook is the fact that this needs to have long-term results to back up the findings.
But the study itself is really compelling. And among the many things to love about it is that it's not testing a new drug, or a regimen with a new drug-- instead, as we used to say in Latin cl***es (yes I took Latin) nihil novus sub solum, or nothing new under the sun. the only novelty involved is that the study is trying to perfect a treatment standard in order to see if a reduced toxicity regimen might be as good as the current standard with fewer short and long term effects.
I just love the German Hodgkin Study Group. Their web site is kind of meh but maybe it kicks *** in German. I don't care; they're a highly regarded lymphoma study group with a stellar international reputation.
Ross
Hi Ross,
The video is so informative- I have lots of questions for my doc!
Perfect response, Kristi!