Chemo Brain (New)

[#1]

Hi All, This important discussion about 'Chemo Brain' has been moved across to this new thread so that more Cancer Connections community members will be able to read and respond. Replies/Comments to this post have been listed by date with the most recent appearing at the bottom of the thread: -- Originally posted by www.cancerconnections.com.au/users/mark-0 10 Jul 2012 09:52: Hi! I have been in remission for about 9 months now. I have heard that chemo brain does not exist. Well, I certainly have it! Has anyone out there had problems with their memories since chemo or is it just me? I find it hard to recall things at work etc. I never had much of a problem before chemo. I have Non-Hodgkins lymphoma (not that it should matter). Short term memory recall is the main problem. eg. names etc. Maybe it is just old timers desease coming on. Cheers Mark A -- Originally posted by www.cancerconnections.com.au/users/sarah - 10 Jul 2012 - 10:25 Hi Mark, You have been told by who that it does not exist? I am surprised and annoyed if you have been told - in this day and age - by medical establishment that it does not exist - it most certainly does!! It's horrible and effects everything. Just when you think you are over it all, there's this new thing to contend with. I read a helpful book on it recently from the library - called, something like "your brain after chemo". Might be helpful for you? If what is going on is acknowledged at least you know what your dealing with. Otherwise you are struggling in the dark; it's lonely and confusion and disorientation can be added to the list of ailments. I remember making attempts to family to explain, most didn't want to hear saying - you're over it now, move on with your life, there was implication that I was somehow whining, or ungrateful for my recovery. However, there were these unseen things (chemo brain) that made it very difficult to put my life back together. What bits were worse I'm not sure. Don't under-rate the impact of chemo-brain. -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/deejjay - 10 Jul 2012 - 14:36 Hi Mark and Sarah Yes I've found changes to my cognition since finishing cancer treatment. These were memory, names for people and objects, concentration and executive type functions like planning. For me it didn't really become apparent for a few months after I finished treatment and more when I changed jobs. This was to a job that I had been temporary in a few years prior that I'd always wanted to return to. This time it was permanent. I was noticing some cognitive differences and raised it with the care nurse who covers my type of cancer. But she wouldn't meet with me to discuss it and said I'd have to wait to see the hospital psychologist (I'd found out the psychologist was on leave so asked if there was a replacement). Then when I did get in to see the psychologist who gave me 30 mins only, discounted me when I explained how important it was I didn't lose my job as otherwise I'd be without income. Neither suggested any reading or where I could go elsewhere for assistance. My manager eventually raised the issue with me having the same observations as what I thought. A few weeks ago I raised with the oncologist who didn't believe chemo brain persisted and felt my manager had it in for me. But as I've worked for this manager before, she wanted me back and has been trying to get assistance for us and work with me I felt it was not a satisfactory answer either. Unfortunately it takes time for the medical establishment to recognise something, it was like that with post cancer treatment fatigue. Patients would report it but as oncologists couldn't explain it they didn't record it so there wasn't the data to back it up. So I feel whatever symptoms the patient states should be recorded so it's easier for researchers to compile data and notice trends then research into them. Out of interest there is a Brain Training study at http://www.australiancancertrials.gov.au I did try to get on the program myself but ended up being a control. But worth looking into. -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/lizzie1040 - 10 Jul 2012 - 14:45 HI Mark, I believe it exist as well. I am out of treatment for three years and six months and it has not come back at all. I find it hard to even remember where my phone is ten minutes after I have put it down.They said if I go on HRT patches it would get better but I believe it has not improved at all. When I ask my doctors they just look at me puzzled and that pisses me more. I would just like to say i have been out of chemo treatment for a while and it is not any better now than when I just was at the one year mark. Hang in there.... -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/kaiserchick - 10 Jul 2012 - 15:07 Hi Mark, I am well into the second year of my remission. I finished my last chemo treatment in Sep 2010 and surgery in Oct 2010. I definitely suffered from a chemical imbalance following the end of my treatment. I was diagnosed with post traumatic stress and clinical depression after trying desperately trying to get back into the swing of things both at work and personally. I returned to work 3 weeks after my last surgery(to remove the illeostomy bag I had for my temporary stoma following bowel surgery and the removal of the portacath from my chest for chemo treatments)which was in late Oct 2010. By the end of May 2011 I was suffering from panic attacks, severe mood swings, inability to concentrate for long periods of time and exacerbated levels of anxiety. I couldn't understand what was happening to me and tried to deal with it myself. I ended up being an emotional mess and withdrew from my usual social activities as I felt I couldn't connect with people as well any more. I felt ashamed that my mind felt like a scrambled mess and whilst I was used to being an integral member of my team at work, I now couldn't discuss things in a coherent manner. Following numerous sessions with a great psychologist, support from work and friends who I finally confided to in Sept 2011, and now daily Lovan tablets which I started in Mar 2012, I feel back to normal and am back to embracing life again. I think you need to follow up and find out what will work for you and be open that you are struggling to cope. Fighting cancer def has a physical and emotional impact which lingers long after treatment has finished. KK -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/sarah - 10 Jul 2012 - 15:10 Hi Mark, hi Deejjay (nice new photo Deejjay It's refreshing to hear these stories, confirms ones own sanity. My story was that I returned to a new position where no one knew what I had come from. I was forgetting things - including names and real basic stuff, this in turn made me anxious and nervy as I became terrified of losing my job. From here I experienced some bullying and a lacking in ability to assimilate with the work culture - I felt very on the outer; a wounded animal. In retrospect, I needed more time out, but, I would not have been able to support myself. Counseling would've helped, had there been some recognition of "chemo brain" in general counselling professions, of which I did seek out. Also, if I was able to access certain cancer services that may have remained open after working hours to gain mentoring from, in order to remain employed - I felt like I had to learn new life-skills from scratch. The cancer "care" services however were only open between 9-5, so I wasn't able to access them as modes of professional support. Just a quick diversion off topic: It's very hard with work!! I have gaps in my resume that I have to cover for, I then feel that they can sense I am lying. I can't tell anyone I've had cancer - potential employers or employees (Ive been bullied badly when I have). It's left me very alone. This is my experience. Through cancer I said good-bye to so very much; I am lagging behind in the whole of my life as my peers are kicking ass. Yet, I cannot be open and upfront with all about why this is so as I would prefer to avoid the range of stigmas that come from having cancer. Back on topic: So yes, chemo brain is there, and as far as I understand it is recognised by the medical industry, but the industry opens itself to a range of "at risk" situations if it admits too liberally to these side effects of chemotherapy. If you know what you dealing with, that's half the problem solved - you, then, have some of a chance Mark All the best, -- Re: Chemo Brain Originally postedby www.cancerconnections.com.au/users/craftyone - 10 Jul 2012 - 15:14 Hi, Chemo-brain - I don't think that it ever really goes away. My memory is still not "up to scratch" after 11 years. Early on it was remembering anything that poeple said on the phone. Now it is definitely names - maybe my mind is saying "who cares about names - people themselves matter". I met someone not long after my cancer encounter and he said that he hadn't thought of himself as having had cancer - luckily he got over it quickly - but he was an engineer and used to be able to see "the whole picture" which was important for his jog. Guess what - for someone with his outlook on his experience, he had lost that ability. My job involved comparing data from different laboratory tests. When my boss would ask my to compare a couple of results, I could not recall them from my memory - had to go and look it up - very frusttrating. Nowadays my mind sometimes says no, don't read that, not going to concentrate on it - makes it hard when you require to read articles or research some subject. All I can say is that you need to acknowledge (which you have done) that this has changed and maybe try and retrain your memory - I believe that that can happen. Just keep pushing your brain and it will improve over time - just takes a long time. craftyone -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/sarah - 10 Jul 2012 - 15:14 Hi Kaiserchick, Well articulated! I felt every word of what you said, and believe I experienced same. -- Re: Chemo Brain Posted by www.cancerconnections.com.au/users/zen-moment - 10 Jul 2012 - 16:56 Hi everyone, Yes of course chemo brain exists, and if health professionals dispute it, then tell them to go and do their research! I struggled post-chemo, in particular with remembering names and numbers - reality is that I couldn't function cognitively as I used to. I was really fortunate to participate in a research study that used brain training to see if it made improvements. It changed my life! I quickly improved but more importantly, my mood improved and I regained some lost confidence. I would highly recommend brain training - I now use their exercises every day - it's as important to me as the physical exercise for my body. There is no doubt that cancer and treatment has changed my life on all different levels - cognitive included. However, no matter how bad it gets, I've been fortunate to find people who understand and who are constructive in helping. And at the end of the day, no matter how bad it is...at least I am a survivor - something I know my kids appreciate I wish there was consistency in the "help" that is available to all survivors - the fact that a health professional is even disputing chemo brain really annoys me. And I wish there was consistent information for employers and cancer survivors on how work places can make the adjustments necessary to meet everyone's needs. The last thing any of us need after the s### sideeffects of treatment is ignorance and prejudice. Take care... everyone. Zen. -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/deejjay - 10 Jul 2012 - 20:10 So many people replying so quickly certainly does show that chemo brain is a common symptom of chemotherapy. Some people even report problems after surgery due to the general anaesthetic. I've read that theories mention the cause could be a combination of chemotherapy itself, stress, depression and other medications we need to take and with some women also the added impact of sudden menopause and also taking hormone blocking medications (if the cancer is hormonally driven) And then from what Sarah says if you need to change jobs or have to start a new job after losing or needing to leave a job when diagnosed then it's the discrimination you have to contend with plus trying to prove yourself in a new workplace at a difficult time. (Sounds like you've had a lot of additional stress and difficult time with the workplace Sarah which just adds to it all) Anyhow taking it seriously can at least mean that if there is an anxiety or depression aspect to it then that can be treated through medication and counselling. And with the rest cognitive retraining exercises and compensations. It's a shame the hospital psychologists/Social workers/care nurses etc don't write something up to help patients as then they would only need to see them once and give them the written material. At the hospital I went to they had something written up about how to handle fear of reoccurence which was really helpful. Zen was the study you participated in called the Brain Train study? -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/reindeer - 10 Jul 2012 - 22:54 Hi Mark, I asked a similar question many years ago right here on this site and was answered with a resounding "Yes". Chemo brain is not imaginary, rest assured it definitely exists, everything that has been mentioned in the comments above is very true. I was recently informed by my Oncology Psychologist of a study being undertaken to investigate "Chemo Brain" unfortunately I could not apply to join due to my work and study commitments. Been 6yrs since treatment finished and there has been some improvement in my cognitive abilities. Still work full-time job but have learnt to compensate for difficulties associated with memory loss. Just completed a 10wk course to challenge myself and my "Chemo Brain" ... I believe in the old saying "Üse it or lose it" so onto my next short course and then... who knows, maybe I will learn to play guitar to exercise those brain cells Been a challenging last few years but am still here to see my grandsons beautiful smile... makes it all worthwhile. Seek information from any sources available to you, be prepared that you will encounter "damn hard" days but don't hestitate to ask for help. Take care.. healing takes time. Reindeer -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/allicat - 10 Jul 2012 - 23:13 Hi all, I didn't realise chemo brain lasted so long. I finished chemo February last year and I feel like my memory doesn't work as well as it used to. I'm not sure if it is encouraging or discouraging to read that so many other people have this problem. The thing I notice the most is not remembering what I have told people. I see my sister every few days and I don't remember what news I have already shared with her. I used to just know but now I have try to think to remember and it's often just a blank. I have been doing an online program called Mood Gym which has helped a lot with anxiety and depression. I would be interested in a brain training program. I am also seeing a counsellor and am on anti-depressants. Best Wishes Allicat -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/harker- 11 Jul 2012 - 08:36 Hi all I know about chemo brain too. Aren't there a lot of us! I accept the label because it is one we give ourselves. We are experiencing chemo brain. In my case I think the symptoms do match very closely with the standard symptoms of depression and are relieved by anti-depressant medication and good counselling. So I would encourage people to make sure there is some attention being paid to identifying and treating depression. But let's keep using the term 'chemo brain'...we know what we mean! H -- Re: Chemo Brain Posted by www.cancerconnections.com.au/users/sarah - 11 Jul 2012 - 09:51 Hi Harker, are you stating that, in your opinion chemo brain and depression are the same thing? As I understand it, the discussion is about our experiences of Chemo Brain. While Chemo Brain may be inclusive of depression, it encompasses much more than only this, and infact we as patients identify it as quite a seperate condition altogether. Regards, Sarah -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/desy-cares - 11 Jul 2012 - 10:15 Well for me, I have a rare form of incurable cancer that can't be treated with chemo. But I have had 14 operations/procedures in 2 1/2 yrs starting with a 13hr operation followed by 36 treatments of radiation and then lots more ops. I suffer from anxiety (dealing with the incurable part) and am selling my Financial Planning business after 20yrs because I know I'm just not "sharp" anymore, and that's not fair on my clients. I like all of you suffer the same short term memory loss include losing "words" mid sentence. I always muck around with people that it's my 'Radiation' brain. I have a theory though.... The human brain is only meant to cope with as much as evolution has allowed. For those of us that have been stuck with this horrible disease, we have to deal with more than most. Add to that mix surgery, chemo, radiation, pain killers, anti depressant, anti nausea drugs, antibiotics, immune boosters and the list goes on... Surely Tge comes a time that our poor bodies (& thus brains) go you know what? I struggling. That being said. I miss the old Desy and I like you guys get frustrated at myself, but for now, at least Im here. So Instead if getting embarrassed I'll keep blaming my radiation brain and doing my games of scrabble (don't play against me because I warn you now, I cheat sometimes when no one is looking) and be greatful that for now at least, I'm still here. Short term memory absent or not. -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/sarah - 11 Jul 2012 - 10:38 Hi Desy Cares, glad to hear you cheat at scrabble - something extra is needed to keep the opponents on their toes and awake! I enjoy your theory, and if I may add to it: It's like the brain - or the biological system asa whole - gives up entirely. This is understandable in such a traumatic situation. The chemicals that are being pumped into our body are a huge burden too. So, what I found is that, "I" was pretty much detached and dissociated from the system that I was used to living in symbiosis with, and that eveyone else lives in symbiosis with. Without intending to get "New-Agey" or spiritual here - I did suddenly know myself as something quite different and seperate to my body; I believe I got to see and know my own soul, for lack of a more appropriate word. This happened very fast, and, perhaps, as you mention too much evolution too fast for "the human brain (....) to cope with..". So, this in turn brings more trauma. In this way, if only to conjure up these topics for consideration, the experience has included blessinga as well as the obvious curses. Take care Desy. -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/maryhadalittlelamb - 11 Jul 2012 - 15:20 Desy, you certainly have a full load! All the best with it all. I am 2.5yrs since my last treatment, large Bcell, NHL/ Burkitts Like Lymphoma, stage IV, aggressive, and after 5 months hospitalisation and being given 5 days to live....that's how aggressive it was, i'm in remission now, doing better physically than mentally. I've also had stem cells harvested. Although i can relate to all the comments on brain fog and the symptoms and thank you for some of the ways people have described these symptoms, I can so relate to them, Desy, i was a mortgage broker and had to stop working in the end, you are so right, 'not sharp' indeed. Impossible to portray confidence to your client when the correct terminology just lapses from the brain! I would forget documents the client had provided, forget, forget, forget! Then all of a sudden there would be a chunk of communication i would have no recollection happening, not forget, just gone! It's so demeaning. The other reason I stopped practising as a mortgage broker is that i could not cope with the ongoing assessments and recently the thought of compulsory study for the diploma of finance scared me immensely. No way am i capable of negotiating any study. And of course the extreme fatigue, aches etc compound the problem. One example, i received an email with a very touching youtube attachment, to which I became tearful watching it, my daughter who was watching with me, said, "but mum, you received this same email and video a couple of weeks ago, don't you remember, you were tearful then too!". I was mortified! If I can touch on another question to the panel of my friendly survivor friends, please. Has anyone had the experience of claiming TPD (Total and Permanent Disability) cover there is through their Flexible Lifetime Super? My financial planner dangled that possibility to me, however when approaching my oncologist, he will no way fill in any form to suggest this. In the section of 'whether he thinks i can return to work' he states 'review in six months', which voids the whole thing for me. He claims that will do me damage psychologically. He's one of these doctors who only looks at the blood tests, never mind how i am feeling or any other physical side effects..... so this does not help my case. The payout would put me at ease, i'll be able to pay off my mortgage and not stress about a job i may not feel capable of handling. TPD eligibility means not being able to perform the job you were doing before becoming ill. As my oncologist will not entertain 'brain fog' symptoms, what do i do? Any ideas? My GP is okay with it as he filled in the forms and i now receive a disability pension. For the TPD, i need to treating doctors, one being the specialist. Thanking you, regards for now. -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/lizzie1040- 11 Jul 2012 - 16:03 I feel for you. I to suffer the systoms that is say is not there. lizzie1040 -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/sarah- 11 Jul 2012 - 10:16 I'd like to add that, in my experience Chemo Brain included symptoms such as: Memory loss, short and long term - but also weird things like, how to spell words and what the meanings were, or basic multiplication (for an example); basic routine things that I had done for years and the sequence would be forgotten; why I held a preference for one 'thing'over another (maybe clothing) Balance and coordination Social behaviours and mores - but, maybe as craftyone mentioned perhaps my soul had new priorities, something always to be considered Comprehension, basic to complex - couldn't follow conversations, or logical arguments of a book or article. Suddenly wondered why people and their writings were so complicated. Nuances were lost, I wished for everything to be spelled out And probably heaps more that I cannot remember - maybe because I'm used to living with it now and don't know any difference! Incidentally - I remember too being super teary! But not in a depressed way but an ultra-sensitive and gentle way; I felt the pain of the whole world's suffering. I could see a dead bird and just deeply ache and cry. Maybe the experience opened up new things too. All of these things I didn't share with anyone as it wasn't understood or known, by them, or by me. I was in my own private imprisonment - a world cut-off, lost and dissociated. -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/pamela - 11 Jul 2012 - 10:42 On a somewhat different causal subject, in April 2010 I felt my brain was not working properly with short-term memory loss, lack of concentration and just not thinking as I previously did. I thought this was due to bone growth inside my skull pressing on the left temporal lobe caused by my cochlear implant. I was given an Electroencephalogram (EEG) Test to Measure Brain Electrical Activity, which indicated slow response in that area of the brain, but was told it was not necessarily due to bone growth. Nothing could be done except learn to live with it, but at least I knew that it was real and not just something 'in my head' so to speak even though it actually was in my head (lol). If knowing that physical brain changes have taken place helps anyone, it may me worth asking for an EEG to confirm. If it does not show anything, you may feel that is worse. I prefer to know everything possible. Best wishes to all, Pamela -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/sarah - 11 Jul 2012 - 10:59 Hi Pamela, I got one of those too, but nothing much came up for me. I am intending to, but have not yet gone for, MRI scans next. -- Re: Chemo Brain Posted by www.cancerconnections.com.au/users/jules2 - 11 Jul 2012 - 19:02 Just a bit of quick input on this one. After 5 months of treatment I also suffered from "chemo brain" and I also believe that I was suffering from depression and most likely PTSD aswell. As harker mentioned they are all rather intertwined and I think more emphasis should be placed on the "coming out the other side of treatment" than currently is in place. It has taken me over 2 years after treatment to return to work and the last year of working has been extremely challenging and lots of 'character building' moments. I don't believe my "new normal" is yet fully formed as I have chosen to work in a completely different field which is now about to take me off in another direction again. All my best to everyone on the board and I do try and read and keep up to date on everyone's progress. Unfortunately, working up to 92 hours a week (mostly not 92, but that is the most I have done up to now) precludes me from participating generally. Julie -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/zen-moment - 11 Jul 2012 - 20:43 Hi Deejjay Sorry I just saw your question now - The research I participated in was done through University of Woollongong, and was in 2010. And - LOL - I can't remember the name of it!! Sorry Have really enjoyed reading everyone's comments here - for me the whole time during and after treatment was about dis-integration of mind, body and spirit. My mind got angry at my body for failing me, my body just got completely separated from my spirit, and none of them worked in unison anymore. Post-treatment has been all about integration of the three - and all three have been changed and need time to get to know each other - not an easy task. But a very necessary one otherwise a part of me is out there in the wilderness - lost. I need integration to be "I" again. It interests me to see govts putting money into survivorship programs - there's some great things being done, but they're all a bit too surface for me. I would like to see some better approaches taken to the PTSD that many survivors are dealing with; the existential challenges; the really deep deep things that we all talk about freely here but often don't find space or audience in our treating teams. I wonder how many of the applications for funding for survivorship programs actually consult with survivors?? Sorry - I"m off the chemo brain topic and on a soap box :-) -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/harker - 12 Jul 2012 - 10:46 Hi Sarah To me the lines are still pretty blurred between the two. I know my depression is directly related to post treatment let down/ exhaustion/toxicity/lack of direction/impaired cognition (including memory loss). I know that because I have experienced it twice now, four years apart. I am happy to call it chemo brain. H -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/mark-0 - 16 Jul 2012 - 14:31 Thanks to all who participated in this forum, you have all been of great help. Mark A -- Re: Chemo Brain Originally posted by www.cancerconnections.com.au/users/gazania - 1 Jun 2013 - 18:08 My husband finished treatment for NHL 12 months ago, we are extremely grateful he is in remission, but all our focus was on getting throught chemo and radiotherapy, we were nt prepared for the issues that come with survival. I am increasingly frustrated, dissappointed and finally angry that the medical teams write off chemo brain and fatigue. i feel all they want is to stamp "cured" on the file as another statistic Apparently all side effects disappear after 3 months they say definitely not possible 12 months on! Its so good to read all your comments as we have felt more and more alone, the support doesn't seem to be there anymore. I m not living ith the same man I was pre cancer, we don't want to blame anyone, the alternative was no good, but acknowledgement of the problems would help us all. -- Re: S Originally posted by www.cancerconnections.com.au/users/sarah - 2 Jun 2013 - 19:36 Hi Gazania, I think it's fair to say that you'll be receiving collective understanding and nodding from us all here; we've most likely experienced the same. Perhaps it has something to do with the medical industry covering it's legal butt or something? There must be some logical reason to the denial; it waay past a time when chemo brain is thought not to exist. That is - what I mean is that, chemo brain is fairly well recognised now in the medical industry anyone denying it must only be left looking plain silly. He will improve Gazania, but it will take time. The other thing to consider is the trauma factor. The body and brain has been under enormous trauma, when this happens, there is an amount of disfunction that occurs in the fontal part of the brain that can render a person pretty "off" mentally. I feel for you, it's a very difficult and lonely time. -- Please add comments below and continue this important discussion about 'Chemo Brain'.

[Pamela]

I did not have chemotherapy but have a similar problem from radiotherapy - referred to by some of us as "Rad Fog". Both have been discussed by many members of Survivors of Head and Neck Cancer on their facebook page: https://www.facebook.com/groups/45891977828/ It definitely exists! http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/chemotherapyeffects/chemo-brain http://www.mayoclinic.com/health/chemo-brain/DS01109 http://news.cancerconnect.com/chemo-brain/

[Gazania]

I am struggling to understand why the medical profession(the ones we see at least) refuse to consider chemo brain and want to tag it with anything else they can. Its impossible to get help for what that are all but labelling imaginary. I feel like I am shadow boxing and I want to know what to do about chemo brain? Can it be improved?