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Brain Fog - what it really means for your life survey
by Odin999, May 20, 2008 09:53PM
I have been on Pegintron for 7 weeks now. About to have injection number 8 today. The post-injection physical symptoms, awful for me at the beginning, seem to have moderated to a manageable level now (just nasty instead of bone-crunching). I have genotype 1, hence a 48-week course has been prescribed. I am trying to eat well, exercise, take Interferon and Ribavirin as prescribed and so on. Until recently, I have barely taken any medications at all, not even painkillers or antibiotics. I hate taking medications of any description.
I am single with no relatives, no partner, and few assets. I can manage another 6-8 months of this, but it will clean me out financially if I can't work at all. I have to support myself entirely. I need to earn a decent amount to service my mortgage, and try to land on my feet when I reach retirement age. Haven't got that many years left.
I am turning myself inside out worrying about the memory and concentration problems that I now experience. I can barely work, even on days when I feel reasonable physically. I am terrorized by the thought that I may never regain pre-treatment levels of mental acuity. I feel totally useless at the moment.
I am angry at the specialist and pharmaceutical companies who play down the significance of this particular side-effect. I don't mean to suggest that other side effects aren't worth paying attention to, but this one affects your ability to cope with everything. We are talking about the computer, the central processing unit, the brain. If you knew from the beginning that most of the chips were going to be taken out as a result of the treatment, you would pay attention and take radical steps to deal with it.
Brain Fog described as “mild mental confusion, memory loss, and/or lack of concentration and alertness” sounds manageable. It sounds, well, mild.
It is completely different if you have practical examples:
-- I was sacked from my job because I couldn't keep up.
-- My income has halved because everything takes longer.
-- I walk from one room to another and by the time I arrive I can't remember why I went there.
-- I look at words on a page in a book. I see them, and I understand the meaning of each word, but as my eyes scan across, each word disappears as soon as I look at the next one. To quote from Meki's brilliant description of Brain Fog in another forum - "I don't have the story".
-- I have an almost childlike inability to follow through on anything (Quote from New York Times Chemotherapy Fog article 29 April 2007).
For me this Brain Fog is by far the most debilitating and worrying problem of all, and it will have the most significant long-term effect on my quality of life. Even with the true picture, I think I would have chosen to risk treatment. After all, without treatment, you are ultimately on a path toward cognitive impairment. The point is that I would have prepared differently. Now I want to know what is likely to happen from here on.
I would really like to hear from other people what their experiences have been over the course of the treatment. I imagine quite a few people would want to know this too. I know everybody is different but there are common themes. We aren't getting decent information from pharmaceutical companies and specialists on this. Have to gather it ourselves.
I would like to do a survey on the prevalence and severity of Brain Fog over the course of treatment. I will be my own first respondent. If anyone out there would respond and share their details I would really appreciate it. To make it easy, you can copy the survey into a message reply.
If this survey has enough useful responses I will see if I can spread it around a bit, perhaps get some media interest, see if can get it included in any medical papers.
-------------------------------------------------------------------------------------------------------------------------
BRAIN FOG SURVEY:
1. Basics:
-- Genotype
-- Liver condition at beginning of treatment
-- Treatment details: e.g. Pegintron Combination Therapy, week 7/48, dose details
-- Age
-- Male/Female
-- Any other basic information you consider important
2. When did you first start to experience Brain Fog?
3. Did the level of Brain Fog stay the same throughout treatment? If it varied, how much and when?
During treatment:
Please rate on a scale of 1=bad/incapable - 10=good/capable
-- 0 weeks =
-- 2 weeks =
-- 4 weeks =
-- 12 weeks =
-- 24 weeks =
-- 48 weeks =
-- 72 weeks =
Post Treatment:
If you suffered from Brain Fog, did you regain mental capacity after stopping treatment? How long did it take?
4. Prior to starting treatment did you engage in activities which you think required multitasking, concentration and memory? If you don't mind saying so, what type of activities were they?
5. What effect do you think Brain Fog has had on your quality of life?
6. Are you taking antidepressants? What type? Are they helping? In what way?
7. Do you exercise? What do you do?
8. Are you aware of anything other than HCV medications, such as high Ammonia levels in your blood, which may be contributing to Brain Fog? Please give details if you can.
9. Was/is the prospect of Brain Fog during treatment very important to you for making the decision to begin or continue treatment?
10. Would you like to offer a comment about Brain Fog for people considering or currently undergoing treatment?
I am single with no relatives, no partner, and few assets. I can manage another 6-8 months of this, but it will clean me out financially if I can't work at all. I have to support myself entirely. I need to earn a decent amount to service my mortgage, and try to land on my feet when I reach retirement age. Haven't got that many years left.
I am turning myself inside out worrying about the memory and concentration problems that I now experience. I can barely work, even on days when I feel reasonable physically. I am terrorized by the thought that I may never regain pre-treatment levels of mental acuity. I feel totally useless at the moment.
I am angry at the specialist and pharmaceutical companies who play down the significance of this particular side-effect. I don't mean to suggest that other side effects aren't worth paying attention to, but this one affects your ability to cope with everything. We are talking about the computer, the central processing unit, the brain. If you knew from the beginning that most of the chips were going to be taken out as a result of the treatment, you would pay attention and take radical steps to deal with it.
Brain Fog described as “mild mental confusion, memory loss, and/or lack of concentration and alertness” sounds manageable. It sounds, well, mild.
It is completely different if you have practical examples:
-- I was sacked from my job because I couldn't keep up.
-- My income has halved because everything takes longer.
-- I walk from one room to another and by the time I arrive I can't remember why I went there.
-- I look at words on a page in a book. I see them, and I understand the meaning of each word, but as my eyes scan across, each word disappears as soon as I look at the next one. To quote from Meki's brilliant description of Brain Fog in another forum - "I don't have the story".
-- I have an almost childlike inability to follow through on anything (Quote from New York Times Chemotherapy Fog article 29 April 2007).
For me this Brain Fog is by far the most debilitating and worrying problem of all, and it will have the most significant long-term effect on my quality of life. Even with the true picture, I think I would have chosen to risk treatment. After all, without treatment, you are ultimately on a path toward cognitive impairment. The point is that I would have prepared differently. Now I want to know what is likely to happen from here on.
I would really like to hear from other people what their experiences have been over the course of the treatment. I imagine quite a few people would want to know this too. I know everybody is different but there are common themes. We aren't getting decent information from pharmaceutical companies and specialists on this. Have to gather it ourselves.
I would like to do a survey on the prevalence and severity of Brain Fog over the course of treatment. I will be my own first respondent. If anyone out there would respond and share their details I would really appreciate it. To make it easy, you can copy the survey into a message reply.
If this survey has enough useful responses I will see if I can spread it around a bit, perhaps get some media interest, see if can get it included in any medical papers.
-------------------------------------------------------------------------------------------------------------------------
BRAIN FOG SURVEY:
1. Basics:
-- Genotype
-- Liver condition at beginning of treatment
-- Treatment details: e.g. Pegintron Combination Therapy, week 7/48, dose details
-- Age
-- Male/Female
-- Any other basic information you consider important
2. When did you first start to experience Brain Fog?
3. Did the level of Brain Fog stay the same throughout treatment? If it varied, how much and when?
During treatment:
Please rate on a scale of 1=bad/incapable - 10=good/capable
-- 0 weeks =
-- 2 weeks =
-- 4 weeks =
-- 12 weeks =
-- 24 weeks =
-- 48 weeks =
-- 72 weeks =
Post Treatment:
If you suffered from Brain Fog, did you regain mental capacity after stopping treatment? How long did it take?
4. Prior to starting treatment did you engage in activities which you think required multitasking, concentration and memory? If you don't mind saying so, what type of activities were they?
5. What effect do you think Brain Fog has had on your quality of life?
6. Are you taking antidepressants? What type? Are they helping? In what way?
7. Do you exercise? What do you do?
8. Are you aware of anything other than HCV medications, such as high Ammonia levels in your blood, which may be contributing to Brain Fog? Please give details if you can.
9. Was/is the prospect of Brain Fog during treatment very important to you for making the decision to begin or continue treatment?
10. Would you like to offer a comment about Brain Fog for people considering or currently undergoing treatment?
Albany
week- somewhere in the 8/9 (lost count) month range of 48 wk for G1A on pegetron, in Ontario
-- Genotype = 1
-- Liver condition at beginning of treatment = Mild fatty liver.
-- Treatment details: e.g. Pegintron Combination Therapy, week 7/48, Interferon
-- Age = 51
-- Female
-- Any other basic information you consider important
2. When did you first start to experience Brain Fog?
From week 3.
3. Did the level of Brain Fog stay the same throughout treatment? If it varied, how much and when?
I haven't been on treatment long enough to be sure yet. Since Brain Fog started I haven't had many good days.
During treatment:
Please rate on a scale of 1=bad/incapable - 10=good/capable
-- 0 weeks = 10
-- 2 weeks = 8
-- 4 weeks = 2
-- 12 weeks =
-- 24 weeks =
-- 48 weeks =
-- 72 weeks =
Post Treatment:
If you suffered from Brain Fog, did you regain mental capacity after stopping treatment? How long did it take?
N/A
4. Prior to starting treatment did you engage in activities which you think required multitasking, concentration and memory? If you don't mind saying so, what type of activities were they?
Yes. I had a career which required me to visualize complex structures and remember lots of details in relation to one another. I also enjoyed reading.
5. What effect do you think Brain Fog has had on your quality of life?
It has reduced my self esteem, caused me to lose most of my income. It has greatly increased my level of stress during treatment because I am worried about my ability to support myself financially now and in the future.
6. Are you taking antidepressants? What type? Are they helping? In what way?
No.
7. Do you exercise? What do you do?
Yes. Since week 3 of treatment I walk every day for 30-45 minutes. Two or three times a week, I cycle (mountain bike). 30-40 km once, and 10-20 km the other times. When I can, I push myself a bit.
8. Are you aware of anything other than HCV medications, such as high Ammonia levels in your blood, which may be contributing to Brain Fog? Please give details if you can.
All my blood work is excellent except for Platelets and Neutrophils which are moderately low. My ALT/AST levels dropped to normal range at week 4. There are no other factors which I am aware of which might reduce my memory and concentration capacity. I was experiencing some very, very, slight loss of "my edge" before starting treatment. I would rate it at 0.002 compared to how I feel now which is 10% of my former self.
9. Was/is the prospect of Brain Fog during treatment very important to you for making the decision to begin or continue treatment?
I did think it was important, but I did not realise just how severe it would be in practical terms. I thought I could find ways to manage the problem. For example, write more lists. Given my life circumstances I will be thinking very deeply about whether to continue treatment if I am not getting good lab results as treatment progresses. I really want more information to help with my decision making. I feel concerned that this problem doesn't seem to be taken seriously by my specialist and in pharmaceutical company literature. I can't believe that the cause is "unknown". I want much more information about it.
10. Would you like to offer a comment about Brain Fog for people considering or currently undergoing treatment?
Personally I would still undergo treatment, even with this problem. I will be brutally honest with myself about my odds at every decision making stage though. It may cause me to stop treatment. I need to keep a roof over my head. To anyone about to start treatment, prepare first. Don't walk in with your eyes closed. Don't understimate what Brain Fog means.
Anyway. I know it is a pain answering questions. I sure hope people respond though. It would help us all to have some kind of idea how this Brain Fog thing pans out long term.
It scares me what you say because I am a hard core database programmer that spends hours scratching his head figuring out very difficult problems. There aren't solutions. I have to invent them and I freak out as it is when someone talks in a cube next to me. god help me if what you describe happens to me. hang in there
FAML laws don't allow you to be discriminated against, but not sure what your scenario is.
If I know that it is getting worse, or better, or that I will have some days upon which I can salvage some career then at least I can figure out a sensible course of action. Right now I am at sea in a leaky boat with sharks circling. The medical profession and pharmaceutical companies are enjoying a fine dinner together on a large cruise ship which is sailing in the opposite direction from me.
How long have you been on treatment? Maybe if it hasn't happened to you by now it never will? Everything "official" that I read tries to downplay the problem. I object to that - unless I am a freak who is suffering from this when most others don't (I don't think so)?? That's the trouble, there isn't any information available about the realities of this. It certainly wasn't pointed out to me as a real concern when initially considering treatment. It was something minor to be brushed under the carpet.
Frankly, I am terrorized by it. If I can't do business for a whole year I am stuffed.