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meeting at sloan kettering...any info???

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

 i was hoping to hear about some hints as to how to handle side effects after chemo and radiation for anal cancer----those of you who went , please tell me what they said about those issues....i am 4 years post and still have bleeding and pain .....the pain is better but the bleeding is still there....also my thinking and response time is slow and not the same..sephie

LaCh
Posts: 509
Joined: Dec 2012

Hey Sephie,

The only mention of pain and bleeding was that, yes, there's pain and bleeding post tx. They acknowledged it but didn't address it further. Curiously, after the talk, I approached one of the presenters to ask about cognitive impairment. She had pretty much nothing to offer (she said that it wasn't her area of expertise) but I'll tell you what I know because I also notice cognitive impairments. Before treatments, I asked the medical oncologist about cognitive impairments from either 5 FU or mitomycin and he said that there were no cognitive impairments from either of those agents. I began to notice cognitive changes this summer, which was about 5 or 6 months after I finished treatment. On a whim I googled 5 FU and cognitive impairment (I say on a whim, because I was told that neither agent caused cognitive impairment) and found literature stating that it does. So chalk that up to another untruth (some people call them lies) that I was told.  I'm in the process of setting up an appointment to see a psychologist who specializes in cognitive changes resulting from chemotherapy, first, to assess what's going on, and second, to see if there are things that can be done. As far as I know, there are coping "tricks" but that doesn't adress the underlying issue, that is, you learn how to cope, but you don't erradicate the need  to cope. You address the problem, not the cause. I suppose that's because there's nothing that can be done. My concern at this point is that it doesn't progress beyond what it now is. I can deal with this, although I don't like it, but I sure don't want to end up with dementia or something similar. I'm coming to feel more and more that I regret treating the cancer. Everyone dies. I've just delayed it for a while by exchanging one problem for a litany of others.  If I had to name the overarching theme of the talk, it would be "quality of life issues following chemo and radiation to treat anal squamous cell carcinoma."  At first, this was very good to hear, since no one--literally NO ONE-- talked to me about that at any point. After a while, I began to see that there, are, in fact, interventions and things that can be done to improve quality of life issues that follow this treatment, but that none of them were relevant to the problems that I'm having.

Marynb
Posts: 1134
Joined: Aug 2012

I have noticed marked changes in my cognitive abilities and people who know me best have noticed it too. I really think I have lost about 50 IQ points, and my attention span has shortened! I was hoping it would get better, but it has not. I can not remember names for some reason. I mean names of people that I know well, historical figures, authors, poets, film actors, any names. Very embarrassing and not in my line of work!

LaCh
Posts: 509
Joined: Dec 2012

If you don't mind, how long after treatment ended did you begin to notice the cognitive impairments? Do you think that they've stablized, improved or worsened over time? I'm going to see someone who specializes in cognitive deficits that result from chemotherapy.

I have the same difficulties that you describe, same kinds of words, and curiously (or maybe not so curiously) in Spanish as well. Things that I know that I know...except that I can't remember.... My concern is that it's going to get worse until I'm just lost to dementia or something. Now there's good tradeoff. No tumor for no mind.

Marynb
Posts: 1134
Joined: Aug 2012

I didn't notice it until I went back to work, which was about 6 months after treatment. After treatment for anal cancer, I also had a long surgery for a second cancer. Between being out for many hours and the chemo, I noticed the change when I needed to use my brain and found myself havi g word find issues. As a lawyer, I had never been short for words before. LOL....maybe the change is for the better, in my case.

LaCh
Posts: 509
Joined: Dec 2012

from the little that I've read about chemotherapy-caused cognition changes, six months post tx is about when they start to be noticed. that's also when I started to notice something going on with me as well. I have an appt for next week with someone who evaluates/works with people who've experienced cognitive changes from chemo. I have a feeling that there'll be more "evaluation" than "fixing" since I don't think that there's too much that can be done about it beyond learning coping mechanisms, which doesn't really address the cause but the symptom. Maybe I'm wrong; I hope so. I'll find out next week, I guess. 

Marynb
Posts: 1134
Joined: Aug 2012

You are probably right. I am not sure what they can do to remedy this loss. I have tried Luminosity.com and I enjoy the exercises, but it has not improved my word finding problems. I don't enjoy feeling this way at all. It is embarrassing at times!

LaCh
Posts: 509
Joined: Dec 2012

yeah, I hear you. I tried Luminosity too (the free apart). Didn't help me either. I can live with it if it stays as it is (as if I had a choice) but just don't want a slow slide into dementia. Or a fast one either.

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

i appreciate all of your info....i think my cognitive abilities were slow very soon after tx but i thought they would get better as my body healed..... i would say that they are a little worse after 4 years .... sort of as if i have had a stroke.... i can not answer questions correctly.... my brain says it but my words do not.... i have had a lot of misunderstandings because i do not realize that i skipped part of the answer that i had in my mind  until minutes or hours later......it is causing me problems and i need to just be quiet and not speak which is not a good quality of life.......sephie

LaCh
Posts: 509
Joined: Dec 2012

Have you ever had it evaluated to see if it's from the treatments, something else, or maybe a combination of factors? That sounds pretty profound. 

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

no i have not had it evaluated.... will mention it to doc at MD anderson ....i live in a small town that has limited special sevices......both of my parents had great minds when they passed away so i was hoping that it was not due to alzheimer's approaching.....good point because i have never even mentioned this ..... they need to know.... i was told about Chemo brain at MDA and they did say it could last for years but they never went into detail .... they probably do not have any way to help it.... i really want the docs at MDA to know that quality of life is gravely affected by this barbaric treatment.....yes,  i am alive but there are issues..... i am grateful for how far i have come but i am tired of covering up the fact that my life is soooooo different only due to side effects....i keep the "happy face" on when people ask how i am doing.........BUT   there is no other treatment except to not do the treatment.....  I am not sure that i would do this again but probably would........sephie

LaCh
Posts: 509
Joined: Dec 2012

I agree with everything that you've said except the last. I regret having the treatments. I'm sorry that I didn't just let the cancer run its course. We all die and postponing it for a while in exchange for this isn't worth it to me, although I know that these are very personal decisions and differ from person to person. I don't endorse or advocate one thing or another. I'm just saying that for me, I made the wrong choice.

Lorikat's picture
Lorikat
Posts: 556
Joined: Jul 2011

Wow!  Same problems here at two years out.  I have a good friend who goes with me to meetings with people I worked with before I retired so she can help me place people and names!  HATE IT!  I can't remember characters in novels and am now reading what I call see spot run books!  You know, 2 people and a dog?  I go places and cant remember why until I walk around for a minute or so and it'll come to me!  my Grandkids are supplying words for me when I draw a blank.....

while I wasn't a lawyer I taught seminars on government retirement programs, health benefits etc.  I remembered so many laws, rules and regulations...  Now I get this blank look..  

Not to mention burning feet that keep me awake at night....  

LaCh
Posts: 509
Joined: Dec 2012

These is something that either a lot of oncologists don't know (although it's their job to know it) or they do know, but don't acknowledge it, relative specifically to 5 FU. I was told that 5 FU had no adverse effects on cognition (because I asked prior to treatments), and I haven't even tried to look up mitomycins's effects on cognition). It seems that the more you ask, the more people who've been treated with 5 FU step forward to say, "Yeah! I have this too!" 

I have an appt next week with someone who works with people experiencing cognitive impairments due to chemotherapy agents. I have zero hope that she can do more than assess the problem, quantify the problem, and advise me on coping mechanisims for the problem. As for the problem itself, there's only one way to address that and turning back the clock to the days before the treatments, and saying "No thanks, I accept the cancer, rather than the cure," isn't possible. If it were, I would. This is no tradeoff I would have made, had I known what, exactly, I was trading for. I asked... but wasn't told.  (And then there are the physical issues that are a result of the txs--another story entirely). Everyone makes their choices, and it was mine to make. But when you ask the questions of the people who have the information, and the information is withheld in order to steer you toward a choice that they think you ought to make, well, that may not be done with malicious intent (I'm sure that it's not) and it may not qualify as malpractice (I'm sure that it doesn't) but to me--just my opinion--it's well intentioned, but morally and ethically wrong. This was my decision to make. I wasn't given the ability to make it, with all the information that I needed to make a truly informed decision. 

pializ
Posts: 256
Joined: Nov 2012

I have seen info on the decline in cognitive ability post chem. 

I have just returned to work 8 months post treatment. 

The first day I felt a bit overwhelmed, & even logging on to my work computer seemed too much. That said, I have returned to a new system & it was much easier this week. But I did doubt myself, & still do to some extent. It's early days yet & not much I can do about it except to keep my mind active. Que sera!

A neuropsychologist is probably the best person to carry out an assessment, but as suggested here, he/she would only be able to offer coping strategies.

There's definitely more than meets the eye with the treatment.

LaCh
Posts: 509
Joined: Dec 2012

depends on whose eye you mean.  I can't believe that if I found literature on the Internet for gods sake, about the cognitive deficits caused by 5 FU, that my medical oncologist didn't also know about them, and when asked point blank if either of the agents I would be receiveing caused them, told me "no." It was his job to tell me. That was his job. Whether or not I made a decision that he felt I should make was not relevant. He steered me in a specific direction by cherry picking information (he said, "dying from this cancer is a difficult death," which made me almost jump over his desk and clock him--most deaths are difficult deaths--and by withholding other information, also cherry picked, to effectively manipulate me toward what he thought was what I should do.) But that was not his decision to make. His job was to give me all the information that he had and to let me decide based on that information. His job wasn't to take that decision away from me. Not only was that not his job, it wasn't his right. If I had it to do over again, I'd have researched every chemical agent, every gray of radiation that I'd be receiving from a source that I could trust and would have made a much better-informed decision. Sadly, neither my medical nor my radiation oncologist were that source. They've both earned my distrust. 

Phoebesnow
Posts: 447
Joined: Apr 2011

When I signed up for tx I signed a form acknowledging all the possible side effects.  My drs  do not deny my issues, they ignore them politely.   My mother in law had colon cancer, first we did surgery only and then it came back in her lungs and we treated that with ablation.  During these 3 years she developed dementia and shingles.  In the end we put her on xeloda.  She was 90 years old.  Looking back, I think we should have let her go, she could have had a joyful 3 years with her family instead of being housebound, taking a boatload of pills and having dementia .

A year or so ago I read on here just accept the new normal and get on with your life.  It was a bitter pill to swallow.  At that time I got angry but gave it a lot of thought.  Finally I have accepted the new normal and just work with it.  I think it was a conversation between Lorikat and rosec.

My life is still really fun now even with the side effects.  But I still wonder if I did the right thing.  I wouldn't do it again for another cancer.  SurgerY is ok but none of the other.  I understand it isdifferent  with people with children.  I have given up reading or any kind of problem solving and try to avoid deep emotion.  These things cause me a lot of brain pain and consequently a lot of symtoms, as if my brain is getting injured over and over again.  I have ataxia magnified by the 5 fu.  I am fortunate to live in California where most of my time is spent outside doing physical things.  I couldn't imagine being locked up in a house with a brain like mine.  

so I am really sorry for the people who were not advised by the doctors of the possible side effects.  Of course based  on what he told me I did further research and really knew what the outcome might be.  But of course I believed that would not happen to me.  But it did.

LaCh
Posts: 509
Joined: Dec 2012

Your story about your mother-in-law is a prime example of what western medicine does, and what it's taught to do. "When in doubt, do something," rather than nothing. My father died of lung cancer; the last 18 months of his life were a barbaric hell from the treatments. My mother also died of lung cancer. She chose not to treat it, and had a good quality of life in the two years between diagnosis to the end. I hope that I can reach the peace that you seem to have found with the "new reality," in which you find yourself--in which I find myself.  I think that it's a worthy goal and maybe the only worthy goal, and one that I'll strive for. Right now, I'm not quite there yet and am a little stuck in the "if I knew then, what I know now," which, of course, is made worse in knowing that I may not have known, but somebody did--somebody who withheld from me the information that I asked for. So it's a little hard to swallow, but certainly, acceptance is the ideal endpoint for things-- for most things, I guess, but certainly, for this.  I think I'm just having a bad few days. As my mother always used to say, "This too shall pass."

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

lach,  that doc was definitely wrong not to tell you.....i did not even think to ask any questions about cognitive issues.... i still was in a fog and could not believe i had ANAL cancer, of all things....i also was in so much pain all the time , i just went from one appt. to the next like a Zombie.... i did not take pain meds because i needed to be able to function by myself.... crazy..... i agree that NOT to have done the tx is not such a bad choice.....i did not even get on internet to research this type of cancer until after tx was over.... i was just too tired and in too much pain... and struggling just to keep myself clean, hydrated, and some protein in my mouth each day....craziness.....i still do not know how you did it..... unbelievable!!!!  of course,  you had no choice other than  to just lay down one day and not get up.... your sweet dog would have been sad.......sephie

LaCh
Posts: 509
Joined: Dec 2012

 that doc was definitely wrong not to tell you.....i did not even think to ask any questions about cognitive issues....

>>>>>>>I had a whole list of questions for both my medical and my radiation oncologists, and that was just one....  For all the good it did.

 

i still was in a fog and could not believe i had ANAL cancer, of all things....i also was in so much pain all the time , i just went from one appt. to the next like a Zombie....

<<<<<<<<<<Well, don't feel too bad... I'm not the kind of person who does what I'm told, just because I AM told, and strangely, I wasn't freaked out or scared or anything, but they said, "go here," and I went there, "do this" and I did that, and in hindsight, a lot of it was just stupid and unnecessary. And I was thinking pretty clearly, to don't beat yourself up too much over it.

i did not take pain meds because i needed to be able to function by myself.... crazy.....

>>>>>>>not so crazy. I didn't take pain meds either, because I didn't want to deal with the side effects, and held out until the 4th week when I went from "Pain meds? No way," to calling over a weekend and begging for them, and then taking them for the next month or so.

 i agree that NOT to have done the tx is not such a bad choice.....

>>>>> You know, that's one of the best, kindest things that anyone here has ever said to me, and maybe one of the things that resonates the most for me. It's hard to say such things when most people fight tooth and nail to survive and accept any adverse effects that come with the treatments, but I don't feel that way. To find someone--even one someone--who feels like I feel, well... man! That's one of the most helpful things I've heard here, strange as that might seem. 

i did not even get on internet to research this type of cancer until after tx was over.... i was just too tired and in too much pain... and struggling just to keep myself clean, hydrated, and some protein in my mouth each day....craziness.....i still do not know how you did it..... unbelievable!!!!

<<<<<<<<< Well, although it probably wasn't the best decision for me to treat it, once I made that decision, I just.... did it. I'm alone in health and I'm alone in sickness and after a while you just don't even think about it. Also, I have to say that I like my privacy and my solitude, I like being single and alone, so it's not like I was bummed out by being alone. It was inconvenient but not like some major emotional issue. That's not to say that it didn't present some logistical problems because it did, especially as I got sicker and sicker, but... I don't know, you just find a way. One foot in front of the other, that sort of thing. Also, as I've mentioned before, I'm from the suck-it-up school and that's sort of how I do things. I just tell myself, "Oh, come on, just suck it up."  In the 4th week I was no longer able to walk, but before treatments began, I googled every free cancer service I could find, every private organization and came across something called Cancer...something, I don't remember, and they gave me $750 for transportation. I saved it all until the 4th week and when I couldn't walk anymore, or even take the bus or the train, I took a cab to and from treatments. I remember I had to see my gastroenterologist to get some pain suppositories (they didn't help at all, I couldn't even get them in there) and her office is about 5 blocks from my house and I had to take a cab even to there. Cabs 5 days a week for two weeks isn't cheap, but the money I received enabled me to do it. Once you commit to the thing, you just find a way to get it done and that's what I did.

of course, you had no choice other than to just lay down one day and not get up.... your sweet dog would have been sad.

<<<<<<< Like I said, I wasn't scared or in shock or freaked out in any way when I got the diagnosis...except when it came to my dog, and the only time I cried during the entire experience was the day I got the dx and I said, "What about my dog?"  I lost it then. I really did. I wasn't afraid to die. I was afraid to die and leave my dog  with no one. THAT freaked me out.  THAT undid me.  My dog is like a hairy son. I wouldn't love him any more if he carried my DNA. So that undid me, the thought of leaving him with no one undid me. I don't know how anyone reading this will take it (and although I don't want to come off as rude, I don't really care how it's received) but I lost the love of my life, my sun, my moon and my stars eight years ago, from cancer. Since then, I've felt that I was going to die young. I just couldn't shake the feeling, it was with me day and night, night and day, it never left me.  I was expecting a diagnosis like the one that I got, I was waiting eight years for that shoe to  drop and when it finally did, my feeling was, "finally."  I wasn't surprised. I don't have the feeling of impending death anymore. I believe in precognition; I've had these experiences all my life, about myself, about other people, even about strangers or people I barely know. So I sort of felt this coming. Also, the person who I lost to cancer, got it at 58 years old and our lives and life events --many, many of them--were strangely similar. The age of cancer was the same for us both, 58. So it wasn't a huge surprise for me when I got the diagnosis. I was waiting for it. The difference is that he died from it and I didn't.  On another topic, (the topic of cognitive deterioration from chemo) I was speaking to someone tonight in Spain, through Skype, and for the life of me I couldn't think of the verb "to hibernate," not in English, not in Spanish, not for anything, although I was able to remember the verb "to sleep" in both languages. This seems like dementia to me and I swear, if I think I'm sliding into dementia, I'll find a way to make a graceful exit. To be alone and deal with cancer treatments is one thing. To be alone and have dementia is quite another, whether you're at home or locked up in a nursing home and that simply will not happen.

Phoebesnow
Posts: 447
Joined: Apr 2011

I also kNew my fate.  I know more than that.  I do 

 

Last time I saw my neurolgist he gave me this simple memory test.  He picked 5random words for me to memorize, 20 minutes later after a busy appointment (not studying) he asked for the words.  I had a little difficulty remembering one.  He said I was fine. 

 

Also look up peanut butter and altheimers and try the test!  Good luck.

LaCh
Posts: 509
Joined: Dec 2012

I looked it up. It's controversial at best; many things can cause dimished olfactory function and there's more than one form of dementia, so from what I read, it's not a very useful test (but can cause an unnecessary freak-out in those who try it and fail).  But who knows. Not me, that's for sure. I have lots of questions and more or less, no answers. So who knows.

mp327's picture
mp327
Posts: 2852
Joined: Jan 2010

I think it would be impossible to completely rule in or rule out our treatment as the sole cause for diminished cognition issues.  I am getting ready to turn 60 next week and have read lots of articles about memory loss since my mother was diagnosed with dementia.  As people age, most people will experience some memory issues as a normal part of the process.  I know that my memory is not as acute as it once was.  Is it due to treatment or my age?  I simply don't know.  Another factor complicating that for me is the fact that I was diagnosed with hydrocephalus at the age of 39, which is a condition in which there is too much fluid around the brain.  Let me tell you, when you are 38 years old and begin having memory issues, it's quite scary.  I would go to meetings at work and walk out afterwards, not remembering one single thing that was discussed.  I thought I was losing my mind.  I could not complete the simplest tasks at work, even though I had been doing them for years.  Finally, after a CT scan, I was properly diagnosed and had surgery for a shunt, which returned everything to normal for me.  The reason I bring this up is because another cause of memory difficulties in people as they grow older is NPH--Normal Pressure Hydrocephalus.  Many people are incorrectly diagnosed with Alzheimer's or dementia when, in fact, they actually have NPH.  This is a different condition than what I have, as mine was present at birth, to the best knowledge of my physicians at the time of my diagnosis.  It is referred to as Decompensating Hydrocephalus, whereas the body is able to compensate for the extra fluid for awhile, but as a person ages, the body becomes less able to do so.  That explains why my symptoms did not come on until I was in my late 30's.

The only reason I am sharing this with all of you is to make a point that memory difficulties can be attributed to many different things.  Yes, we all had the same treatment and it's quite possible that the chemo is to blame.  However, we are also all aging and many of us are past the age when the memory begins its normal decline.  So I just think it's impossible to know the exact cause or to blame just one thing.  That's just my take.   

LaCh
Posts: 509
Joined: Dec 2012

I had the usual memory hiccups prior to tx and attributed them to aging. There was an acute exacerbation and a noticible change in frequency, duration, what I was forgetting and how able or unable I was to recall what I was trying to recall about 6 months post tx. It was an acute change that I noticed. On a whim I googled 5FU and cognitive issues (I say "on a whim" because I was told that there were none) and as it turns out, there's literature, studies from insitutions mostly outside the US and seemingly, if this forum means anything, plenty of people reporting cognitive issues post 5FU. Often, the time of onset is 6 months post tx as it was for me.  With due respect, yes, I had the usual forgetfulness prior to receiving 5FU and it was just something that I noted and shrugged off. This is a different animal all together. I'm told by the person who's going to assess me next week that there's a way to determine what changes are due to the normal aging process and what changes are due to chemo induced deficits in cognition. I'm not sure how that can be; without a baseline, I don't know how one measures change...change as compared to...what? In any case, she said that there's a way to do it, so I'll go hear what she has to say and then do my own research, and make up my own mind. At this stage in my life, I'm skeptical of pretty much everything that I'm told, by members of a community--the medical community-- that I've come to distrust. But we'll see.

mp327's picture
mp327
Posts: 2852
Joined: Jan 2010

It will be interesting, indeed, to see how that determination is made, or attempted to be made.  Like you, I don't see how that's possible.  Let us know!

LaCh
Posts: 509
Joined: Dec 2012

If there's anything worth telling, I'll tell it. I go with an open mind (as in, "what do I know?") but low expectations.

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

lach,  i do so appreciate your responses to my statements....(i have been at MD anderson for check ups--- all good but nothing to help the side effects).....my cat ( i lost my dog) is my child so i understand about your dog.....so sorry about the love of your life because someone like that is truly very hard to find.....i agree that dementia would be horrific ..... i agree about finding a way to make a graceful exit , if possible..... my DAD always told me that if he reached a point that he could not function,  he would handle it.....i knew what he meant and it did not bother me at all....i could not find him one time ( he lived on 50 acres) so i thought he had handled it but i did find him later down the road....he was a WW2 vet , so they fear nothing..... thx again.....sephie

LaCh
Posts: 509
Joined: Dec 2012

sephie, you've always been more than kind, really....  yes, these are complicated issues.... sometimes made more complicated than they need to be but often, inherently complciated. Would I take myself out if I sensed a slow slied into dementia? Yes, in a way that wouldn't burden anyone with cleanup or tying up my affairs and with minimal problems. There really arent many people who would be affected; my sister, maybe, but we're not at all close.  So I understand your dad's thinking. Regarding the appointment with the cognitive doctor tomorrow, I'll post any information that I think might be germaine to other people or helpful in some way, but won't post anything specific to myself, I don't think. After a very short while, I get sick of talking about myself, and talking about all this.  It just gets boring after a while. As for the love of my life...  well, there's a lot and there's nothing to say about that, except that it's the heaviest burden that I bear, and the worst thing that's ever happened to me, by far. But no, there's no need to ever thank me; you're always welcome and your kindness, always, is very  appreciated.

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