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

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 said:

Cognitive impairment
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!

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.

sephie said:

thankyou

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

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. 

Marynb said:

Cognitive changes..LaCh
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.

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 said:

laCh
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!

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.

Lorikat said:

Wow!  Same problems here at

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....  

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 said:

cognition affected by chemo

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.

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 said:

Tx

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.

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 said:

lach, what a mess to not have been told

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

 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.