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Jenslp #137889 08-09-2011 06:07 AM
Joined: May 2010
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klo Offline
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"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Joined: May 2010
Posts: 638
Yes, Alex and I too suffer chemobrain (and me without having HAD chemo). What this tells me is that the stress of the whole debacle must have had some effect on top of the physiological changes brought about by chemo. I also agree with Eric that there is a degree of PTSD which manifests as irritability and mood changes - especially when a doctors appointment is on the horizon.

Like Jenslp, Alex can watch the same episode of Law and Order over and over again, without quite remembering the storyline. He loves his sci-fi books, but was unable to follow storylines for about 6 months after treatment. TV shows also became the "take your brain out and put it on the coffee table" type. Repeats were favoured as well. Alex had more chemo than many (triple therapy over 4x3 week cycles, 6 weeks break, then cisplatin split into weekly doses with his radiation x 7 weeks) so we wonder if the effects were cumulative thereby causing an extended period of confusion, memory loss, trouble keeping his focus and misunderstanding communications.

Whole conversations disappear into the ether and I find myself repeating myself often or checking if he remembers the conversation about ...before launching into an update. The thing I have noticed most is that he gets the order of our conversations muddled and will respond to something I said two topics ago. This causes some grief as his brain seems to connect the dots to make a logical picture for him but might bear no resemblance to what was actually said. I don't know if anyone has ever worked with alcoholics but it reminds me of them. I have worked with alcoholics so badly affected their short term memory is nearly completely gone. I remember one particular gentleman who, when asked about what he had for lunch, would give me an elaborate and detailed response which was completely made up(to my knowledge, Morriset hospital never served Beef Wellington or Chateaubriand for lunch). I never got the sense that he even knew he was making it up. Somehow his brain substituted a plausible scenario for the missing one, and by the time it came out of his mouth, he believed it to be the truth. Alex is nowhere near this bad but it seems to be a similar mechanism.

We are 12 months out and Alex is still stuggling to focus although improving every day. What would have taken 15 minutes to do BC, might be a couple of hours today. He writes lists for everything.

I was complaining about this to a friend of mine who had undergone chemotherapy 5 years ago and who understood the issue immediately as it had happened to her. Her doctor put her on an anti-depressant believing her to be depressed and she found her ability to connect thoughts improved like magic after about 3 weeks on treatment. Alex has been on antidepressants for 2 weeks now and whilst we have not noticed a full return to cognitive function, I have noticed he is more inclined to tackle a problem that he would not have even bothered with a month ago. He is also more inclined to perservere with a problem for longer than 2 minutes.

I am assured by others that thought processes do return to normal and the breast cancer survivors I have spoken to who have undergone 3 cycles of triple chemotherapy have quoted 12 months as the point where they feel normal again. Not sure how this matches with OC survivors who tend to have slightly less chemo but closer to the brain???

Like Eric, I also wonder if hormones are out of kilter and obvious culprits would be testosterone and thyroid levels which can be checked with a blood test and corrected with replacement therapy.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
klo #137934 08-10-2011 07:13 AM
Joined: Jul 2011
Posts: 131
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Jul 2011
Posts: 131
Well I seem to have found my culprit. I had paid very close attention to the onset of the fog this week and discovered that it happened with hours of taking my post chemo steroid, dexamethasone (decadron). I take these pills the three days following my cisplatin doses which are on Mondays. I noticed this past week that my deepest fog was on the weekend. Saturday and Sunday was the worst. But by Monday, I was basically clear minded and able to function almost normally. And then all day Tuesday as well. I did not take my decadron until late in the evening last night. Lo and behold, within an hour or so of taking it... the brain fog started. My lucidity started to slip, all the symptoms I had described ramped up. So it seems that the decadron is what is doing it. Looks like I am affected for the three days I take it and then it takes another three days to get through my system and by the time Monday rolls around for chemo again, it wears off, only to start again when I take them on Tuesday.

So ... while I am not happy about these side effects, at least now I am fairly certain what is causing them and that they wear off after I stop taking the decadron.


Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]


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