There is a study being presented in a short time and I know it is going to create plenty of buzz among those of us who KNOW chemobrain is real. Some of us still suffer the identical issues described in the study last week.
I'm writing this from the hallway of the convention center in San Antonio from my iPad. I have not yet mastered the interface between blogger (Google) and the iPad (Apple). They are still at odds. Google "maps" and "new ipad" if you don't know what I mean (AND if you, like me, are easily distracted by minutiae). The point of that sidebar: I'd add plenty of links to the PET Scan study. Just go back a few days in this blog.
Until I'm see the presentation, it would be really irresponsible to comment from the patient point of view. AFTER the presentation? I'm certain I will have plenty to say. I expect the women studied will be a very small number and will fit into a very specific treatment protocol.
In advance of that, I will leave you with what I heard from Dr. Patricia Ganz in the survivorship session. Someone sent a tweet that wasn't accurate. It said (paraphrasing) "anxiety and depression caused 'cancer-brain' NOT chemo." I did have the courage to stand at the microphone in a packed hall to read the tweet directly to Dr. Ganz to ask for clarification. I wanted to be certain I didn't miss something in her presentation. She reacted stongly, firmly and without hesitation.
MANY things play into the reasons why we experience chemobrain. Some of us seem to have issues that are later onset and somewhat worsening. This has been written up in paper after paper.
STAY TUNED...... I may even have the courage to question the researcher.....
Can I just say that you are fantastic? I followed your tweets and translated them in Dutch with @BRSTKNKRactie...... Thank you !!
ReplyDeleteI don't even know WHAT to say. Thank you for sharing that with me. I am humbled in ways I can't possibly express.
DeleteCongrats for standing up and questioning! Great advocacy at work!
ReplyDelete:) This was a terrific experience and nothing was more thrilling than to see Patricia Ganz step up to the microphone after the paper was presented! Exhausted.... will be processing and sorting through notes for a month!!!
DeleteThanks for representing us. I know chemo brain is real. Teaching is ever harder as I try to cope. I used to love the classroom, not so much now !
ReplyDeleteMeg
Thanks, Meg...
DeleteI know it's real, too.... Apparently, the only issue? I have to change my name to "CancerBrainFog" .... It's truly not only about chemo. Plenty of other things play into it.... But for sure...IT IS REAL ...
Hugs...
I hope you don't change your name, as the focus should remain on chemobrain primarily being a side effect of chemotherapy, which I believe it is.
DeleteDon't let the pharmaceutical companies off the hook!
I'm not changing my name... I AGREE wholeheartedly.....
Delete:)
You know what? This is not new news. It's great that another study has been added to bolster the previous evidence, but there have been many studies about how the various aspects of cancer treatment, including chemo, cause cognitive changes and how the effects can be measured. What I'd like to see is more studies about how to treat it. Love you. So glad you got to be there. xoxo, Kathi
ReplyDeleteMe, TOO... thrilling to be there. Jody got the official number of attendees.... Something like 7300 people. All driven by passion. I have to believe this is going to make a difference...
DeleteI'm listening to the discussion on my phone, now. Had the good sense to record it. Can't wait to get to the part where Dr Ganz steps up to the microphone!!
The problem with this study..... It was all about overtired, anxious (read=hysterical??? and not Ha HA hysterical, either) women... Oh, Maybe I better shut up and go re-read this thing in its entirety and make sure I got my facts straight...
Love you...WISH you were there...
AM
If you have had chemo, you know chemobrain is real. It's that simple! So glad you were at SABCS and looking forward to hearing all about it. I know from going before it's lots of information! So glad you spoke up and yes Dr. Patricia Ganz is awesome!
ReplyDeletedear anne marie,
ReplyDeletewelcome home to our championing hero! at first, to hear that people are still relegating a REAL and complex set of brain deficits to the notion of hysteria and anxiety was so maddening; but thank goodness you were able to counter that with what dr. ganz had to say. for the life of me, i cannot understand how the gang of naysayers about chemo brain can still be so ignorant; as kathi pointed out there are so many viable studies to validate it's existence. it's like listening to politicians denying credence to global warming! it begs the question - what's in it for them???
politicos and naysayers aside, thank you, thank you for being our relentless advocate - fearless friend indeed. i look forward to reading about what more you have to report on.
love, XOXO,
karen, TC