Does this belong here?

[chicagoetc]

I am writing this in a text editor in order to copy it more coherently as a post in this site. I tried writing something about it earlier but think I must have not written it right.

I am fearful, frustrated, sad... and not because there has been a cancer recurrence (that I know of). My assumption was that once surgery/chemo/radiation were over everything would be relatively easy. Herceptin in fact has been relatively easy, as has reconstructive surgery.

What is not going right is something that started fairly suddenly mid June of this year. I had worked basically fulltime through everything and that had worked. I was able to provide supervision, review clinical documents, help with annual mental health / psychosocial assessments..even a fairly complex training/seminar. Some days were harder than others but not to the extent I could not work.

My brain went goofy starting in June. I can't seem to find anyone in this forum with a similar experience (leaving me wondering if I do/don't belong here).

Sheila suggested I write symptoms. They are:

- Nausea: Extreme periods of nausea (not from eating anything). Dizziness/nausea when writing, typing, reading for 20 minutes or more (such that I have to stop for 30 minutes in order to do anything else). Dizziness/balance problems when going down stairs. Similar dizziness/nausea when looking at someone talking when I was sitting at angle to the wall behind them. Inability to look at a person and then a piece of paper or computer screen and then back again without feeling sick.

- Multi-tasking problems: Had to stop listening to the radio or doing ANYTHING but drive in order not to hit the vehicle in front of me (many, many "near misses"). Had to take the same route to work everyday and try not to pass anyone (as I was starting to have "near misses" where my car almost crashed into the car in front)

- Memory/Cognitive problems: When doing minor multiple-step tasks as I could not remember why I wrote what I did or which step I was on when going from one part of the task to another (taking two hours to do somethinig that would have taken me ten minutes or less, AND still not solving the problem even after two hours). Constant forgetting why I go from one room to another. Frequently forgetting entire conversations with friends and others. More difficulty than usual finding where the car is parked, where I put a piece of paper I thought was in a pocket.

- Clumsiness: Dropping items/liquids/other on the floor on a regular basis. Trying to cook something on the stove, spilling the ingredients on the hotplate, getting the ingredients in but then spilling them out of the pan onto the next hotplate, moving on to a third before I got it right. Frequently almost tripping because I forget/did not focus on where I was walking.

- Speech: Forgetting words or phrases (trying several times only to find a different way to say it). Not being able to talk coherently in spontaneous conversations. Becoming scared of forgetting the name of the building I worked in a group introduction where everyone said their name and where they worked.

- Attention: Not following plots on short television shows. Same for conversations. Thinking I knew what my doctor had prescribed only to look at the instructions days later to realize I had it wrong.

- Visual problems: Watching something in a street only to have the entire scene start shifting to the left. Putting my foot on the brake in the car only to be convinced that the car was still going forward (into the next car)...when it wasn't. Sudden inability to see through my glasses with a need to replace them. Having that help but not resolve the problem.

[Ok now I'm feeling sick from writing this.] ... Break time. Will edit later.

Noone can tell me what happened. My oncologist sent me to an MRI and a neurologist (the MRI was fine). Peri-menopausal symptoms were ruled out as was medications (prescription or over the counter)...at least regarding anything that had changed pre and post treatment. The neurologist sent me for neuropsych testing. Anxiety/stress/depression were ruled out. I performed ok in some places but scored poorly on others, attention being a primary problem. Other things the test said I do not remember. The neurologist sent me to a speech therapist who works not just with speech but with cognitive problems as well. We just started.

Other medical interventions: Two anti-motion sickness meds (constant Meclezine and Transderm Scop and even that is not enough...will probably be given Zofran later). Recommendations to try either stimulants or memory related meds. Right now I'm on a trial of Namenda. There are four other options to try if this does not help, I think.

Things got worse at work. With encouragement or permission from my supervisor, I dropped to part-time. Recently I was demoted. Today I set up my new office and became petrified that I would even know how to do the job I had done for many years prior. My husband and I actually talked today for the first time about the possibility that I may not be able to work at all. I'm not stopping yet.

I want to cry. I am frustrated/scared/sad. I think this is related to chemo (Taxol maybe?) but I cannot find documention that would support this. Everything seems to be getting worse (though sometimes it seems better in places). I am worried it will keep getting worse.

If you can tell me that this does not occur as a part of treatment for BC, then at least I will know. If it is related in any way, I would be glad to not be alone in this. And, if so, maybe some of you have ideas of what to do. If not, then I would assume this is a problem unrelated to cancer. At least I would know if this is/is not appropriate for this site.

Melanie

PS: I promise to never write a post/response this long ever again. [Unless I forget of course...] I edited it several times.

PPS: Maybe I am complaining too much...most of you are posting about serious physical problems.

[Becky]

What about your ears? Or maybe even your sinuses (which when draining can clog the ears and we all know Taxol and Herceptin cause sinus/allergy problems). When I was done with Herceptin for 3 months I got a sinus infection that took 2 rounds of antibiotics to clear and I was already over 2 yrs from diagnosis (since I had late Herceptin). I was shocked as I truly (by that point since chemo was nearing 2 yrs behind me) was healthy as a horse. The ear pressure and near fainting spells almost did me in. Like you, I did a better job at work prior to this and during chemo and most of Herceptin.

I saw an ear, nose and throat doctor who tested my hearing (which was fine) but I was diagnosed with TMJ and I work hard on not clenching my jaw etc and the tricks and "rehab" for that has helped.

Naturally, you are stressed about this too and that doesn't help either. Maybe you are looking in the wrong area of the body or you might have other symptoms that seem unrelated but are related to this. (Yes - I do watch the Health Channel and "Mystery Diagnosis" occassionally).

Lastly, the first year after treatment is over (and we are in treatment longer than the non-Her2 people) is a rough year. Year 2 is the worst I think - for any bc woman. But this may have to do with the allergic effects/ears/TMJ (perhaps) and not neuro. Just thinking out loud here.

Keep posting - especially after you see various doctors as something may click with one of us that brings more perspective on your symptoms so it can be solved and you can get back to normal asap.

Big hugs to you

[Cannon]

Of course you belong here. Your problem is a serious one, and so frustrating that you don't have answers.

There is no doubt that this can be a side effect of chemo, and that there still might be no physical evidence of damage.

I don't know that much about disability, but it seems to me that you should go on disability leave instead of part-time and being demoted - this is not your choice, you are NOT ABLE to do your work - that's what disability insurance and/or SSI is for!

I actually have "extensive white matter disease" (no idea if it's from chemo, never had a brain MRI til after all my treatment) to the extent that my neurologist says it's miraculous that I am functioning, and some days I don't feel like I am, but so far holding on.

Please find a friend or advocate (perhaps your husband, perhaps not) who can help you decide what to do to best take care of yourself. If you can't even remember what the testing said, how you can make good decisions on your own?

I am sending you love and prayers, please let me know if I can help in some way.

Rebecca
aka

[webmum]

and I think you have every right to moan as it is seriously affecting your life.
I think I can relate to it to a point. Me too, have just finished herceptin and was on taxol at some point during last year (I also had tykerb and FEC).
I have dizzy spells too, never serious, but often a feeling of being lightheaded and not quite in the same room as others..I hope you understand what I mean.
Also definitely, feel a lot more forgetful and disorganised tha I was before. I don't have much to compare it with as I haven't worked in about 4 years, and only recently started again, part/time, but sometimes even finding my way around town I make silly mistakes and I have always ahd a good sense of directions. I do find it difficult to recognise myself as I once used to do a fairly stressful job too. But, because I have had such a big gap, and 2 children in between I have often put it down to motherhood and generally getting older (even though I'm only 37). Maybe it is something to do with the chemo...

I also ahve the vision problems you describe, but very rarely, maybe once every 6 weeks I'd say, I don't remember experiencing anything like this before, but then again, I was never so tuned in to what my body felt as I am now!

I don't know if this is any help to you, I hope it is in some way. And I hope someone can help you further

best of luck
chiara

[Mary Anne in TX]

Hey Melanie!
You can see the dates on the drugs I took (one was Taxol) and I have continued to take Herceptin (stopping in Dec.). I have had almost all of your problems as well, with the exceptions of the nausea and the visual problems. All of the symtoms have decreased month by month since I stopped all but herceptin. I'm still nowhere close to my "old self" mentally or with the ability to focus, but I'm good enough to get back to work more. I've just had to change the way I work. I find that stress still really shuts me down. But I have faith that after some time off of herceptin that I'll get even better. I'm counting on it anyway!!!
It has made me feel really crazy at times! But I think with time, exercise and good eats, it will continue to get better.
I don't know what your experiences really mean, but don't give up on things getting a whole lot better! This crumby disease does a number on us and the stuff we have to take to get rid of it and hopefully keep it from coming back are awful!
Keep believing in your ability. Just give it some time and be easy on yourself! The really great you is still down in there! ma

[Sheila]

Melanie
I just had my dose yesterday of Taxol and Herceptin, and with 2 hours sleep last night I may have to rewrite this.
I am just thinking, do they think it could be some sort of post traumatic stress disorder? Just a thought as many of the symptoms seem to fit into that catagory....
I am hoping over time you will feel better and the symptoms you are having will gradually decrease...you have put in a very hectic 2 years dealing with alot...it will take time to get back to the old Mel!

[Christine MH-UK]

I notice that you have just finished the year of herceptin. I would wait to see what things are like over the next few weeks and certainly no earlier than the middle of November before making any big decisions about work.

When I was on herceptin, I developed many of the problems in thinking that you mention, such as an inability to follow plots and problems recalling the correct word. I started in September 2005 and was a complete mental basketcase over the summer. Like you, I wondered if I was up to my job, which is demanding and requires excellent verbal skills. Fortunately, the problems went away after I finished my year of herceptin. As I recall, I was doing much better within six weeks of finishing treatment. I tried to get my oncologist interested in this phenomenon, but he wasn't interested in investigating it.

I know some people have developed visual problems while on herceptin.

I am not sure that all your problems can be traced back to herceptin, but I suspect your mental fog will lift pretty soon.

This phenomenon has been discussed before in these forums in postings labelled 'herceptin brain,' so you are not alone.

Don't worry about the length of your posting. If it is causing you serious worry, it is worthwhile for us to help you with it.

Best wishes,

Christine MH-UK

[dlaxague]

Hi, I am so sorry to hear of your troubles. I can relate to how upsetting this all is, although my issues don't include all of the same things that you are experiencing.

I'm sure that you know and that your neurologist has noted that what's weird about your symptoms are their sudden onset, and the nausea and vision component. The nausea sounds to me like a motion-sickness kind of thing - does it seem that way to you? Even though you're not moving, your eyes are somehow rocking your brain, so it could be part of the vision component and not a stomach thing.

With the exception of the attention, the visual problems and the nausea, you described pretty closely what I would write for my symptoms. I have not had trouble with anything significant at work - although getting through a day exhausts me far more than it used to and I think much of that is not the physical work but the mental strain of constantly monitoring myself to make sure I have not forgotten something. I can no longer multi-task which is sometimes a benefit, as I have learned to focus on only one thing at a time and thus probably that one thing benefits. However, sometimes circumstances demand multi-tasking and then I get worried.

I've been wondering if I should get evaluated, but that scares me. (head firmly in sand, please do not tug). I am 7 years out from treatment. Like you, I did not think that I was much affected until 6 months to a year after treatment ended (about when I started taking an AI so I've blamed that but it could have been coincidence). And the onset was not at all sudden, as you describe yours. Of course I had the usual side effects and fatigue and such during treatment but was not aware of losing this multi-tasking ability. Since the cognitive changes began, my awareness of the problem has waxed and waned. A blunder that seems major to me will arise and I will pay more attention to my state for awhile, getting worried that it's worsening. And then things will go more smoothly (or my life will go more smoothly, demanding less from me) and I'll decide I'm okay enough, after all. Right now, I'm on high alert, after making several stupid mistakes a few weeks ago (not at work) when I was wearing too many hats during a busy period.

Anyway. I've been talking to a few others who have similar issues. One woman who was evaluated soon after completing treatment quit her high-functioning job and went on disability. Hard at first but she has found other ways to use her intellect which still remains wonderfully intact. She says that garden-variety neurologists are not up to dealing with this. She recently attended a seminar on brain injury that talked not of chemo-brain specifically but of brain injury secondary to anoxia (lack of oxygen) and what it means to lose "executive function" of the brain and the symptoms were pretty identical. So I wonder if you might get more satisfaction from seeking out a neurologist who specializes in this sub-specialty. Are you near a big city where there would be such choices?

The frustrating part of this for me is that even if we find the right provider who can evaluate and diagnose, there is not much that they can do about it. There are the ritalin-like drugs but they have significant side effects. I recently read an interview about cognitive issues on breastcancer.org and they said that "mental exercise" does not help. Here's the link to that interview: I found it interesting, but a little condescending plus I thought they spent too much time on what the problem could be, other than brain damage from chemo (depression, inactivity, blah, blah). Here's a link to that interview (click on "read the transcript"):

http://support.breastcancer.org/site....0&dlv_id=5261

tinyurl: http://tinyurl.com/5dxcbk

Debbie Laxague

[naturaleigh]

Melanie,

I do not have any anwers for you, but I do have the majority of your symptoms.

My legs will not move at night and when I try to move them or stretch it fells like my mucusles are going to pop. I have very little reflexes in my legs anymore. My neurologist gave me medicine for restless leg syndrome, but I refused to take it. He also gave me medicine for Altymerzers (spelling??)to help with my cognitave and memory problems. I still have not decided on that medication. (He gave me some free samples to try)

I am going to try another doctor (I hope) to see what he/she has to say about my symptoms. Another problem I am having which I did not expect is I am reaching the end of my life time max with my insurance.

Just wanted you to know that you are not alone and yes, you do belong here, even though my greatest wish would be than none of us belong here. But what a great site to belong to since we do all belong to this type of group.

[Gerri]

It sounds like a combination of things, some treatment related. Has any doctor suggested it may be Benign paroxysmal positional vertigo (BPPV)? Here is a link that describes many of your symptoms:

http://www.mayoclinic.com/health/vertigo/DS00534

I worked through chemo and beyond and thought I was doing quite well - a little slower than normal, but noticeable to only those closest to me. It really hit home how much this really did effect me when I couldn't remember the exact date of my son's birthday - very unsettling. Another instance was not remembering the last name of my aunt, whom I saw constantly growing up. I actually had to go through my address book page by page until I found it - YIKES! Now, 2+years out from treatment I still feel a little woozy at times. I just had a brain MRI and it was fine.

Keep looking for answers. Maybe throw an ENT into the mix to get another opinion.

Best of luck to you!

[rebecca0623]

Melanie - I just wanted to add my support and say that I appreciate each and every post as they all inform me, and I am sure others, and make us aware of possible treatment issues and outcomes. I echo the support from the others who have posted and please keep us updated on your condition. I continue to work daily through treatment and have had some dizziness and inattention to detail unless I focus much more than I did pre-bc. Even those few symptoms are so frustrating I can only imagine what you are feeling. My love and best wishes to you.

Rebecca

[chrisy]

Gerri stole my thought.

Melanie, much of what you describe could be residual "chemobrain" - and I agree with what others have said, it takes at least a year to really get closer to normal. That the MRI was clear is great news, although I know it doesn't help with how you are feeling physically.

I have a coworker who had positional vertigo and it was just horrible - and similar to some of the symptoms you are experiencing. But once they figured it out, she was able to get back to normal.

Hope you find some answers soon - and as Chelee said, of course your post belongs here!

[AlaskaAngel]

Melanie,

With the continuing severity of your symptoms and the impact on your daily life and your job, you are experiencing significantly disabling problems. I wish I could answer whether they all related to treatment or not, and give you specific answers to help solve them. This site is here especially for your kind of comments.

I too wonder if you have problems related to the ear(s) that an ENT doc with lots of experience might help you with. The risks you are having to take and cope with both for yourself and others are most concerning and I hope that you are able to take whatever action is truly appropriate for managing them even though it might limit your own activities. The level of disability you describe is high.

Please continue to let us know how you are doing. I'm sorry you are in such tough circumstances.

AlaskaAngel

[chicagoetc]

I appreciate the posts. [I am writing down the recommendations/thoughts in a word document to look at later...because I won't remember otherwise.]

It is encouraging to hear that some of you started feeling better once the Herceptin was done or even a year out or more.

I have always had motion problems...so I take Meclizine three times daily (total of 75mg). It would put most people asleep. This has worked UNTIL June of 2008. Then everything seemed to jump to a new, higher level. Probably seeing an ENT doc wouldn't hurt. Everything else related to the vertigo is being addressed just by medications.

The attention/memory/cognition problems I think (and so do my doctors) are in a different category some how (though the changes occurred simultaneously). No one medically is saying it will change (or not). Rather they suggest that treating the symptoms is best right now.

The correlation with brain injury is one I've already noticed. The symptoms seem to be the same or similar to those with relatively minor brain injury/trauma. I'm trying everything I can...writing virtually everything down so I remember it later, taking 30 minute breaks when I start to become nauseous, trying to talk less so that I'm not embarrassed by repeating myself or not being able to put the sentences together.

It means a lot that others here have had/still have similar symptoms. It has been a hard year and more. And maybe the trauma of it all is something I'm avoiding.

[Rebecca, just starting out? By all means do not take what is written here as what will happen with you. Everyone in general seem to have a variety of symptoms, not necessarily the same as the next person.]

I agree with AlaskaAngel...this is pretty extensive and debilitating.

I hate that this is happening. I hope that things will get better but am not holding my breath. The cost is my job and some friendships (how do I relate to those I care about if I don't remember talking/being with them?).

I'd love to hear more from others of you. It helps that more of you have had similar experiences than I thought.

I will try to keep you up-to-date if something significant changes or works (or gets worse).

Melanie

[Gerri]

Melanie,

One more thought. If you are on a lot of different meds for different reasons - and it sounds like you might be - you may want to "brown bag" all of them and bring them to your pharmacist and ask for a consultation. More times than not, pharmacists know a lot more about drug interactions than physicians do.

[juanita]

my heart really goes out to you! i am now over 2 years out from treatments and i can tell you that things do get better. i do still have slight chemo brain, but it isn't as bad as it was. and i developed an ulcer during treatments, have you been checked for that? that has gotten better and i just watch what i eat. i do still have problems with my right ear, and so far no relief for that because they can't figure out what's wrong with it. so hang in there and anytime you need to vent we're here for you!

[Jackie07]

Melanie,

Please make sure you have follow-up clinical exams the next couple of months. Here are two postings I made under the thread I had started in July: 'cognitive function (IQ) decline, anyone else?':

Just learned that my IQ had dropped 21 points since my last test in 2003 - based on the 19 neuropsychological batteries I took on the last day of June.

"Cognitive decline likely attributable to post-chemotherapy encephalopathy and the effects of frontal neoplasm and gammaknife treatment" is the 2nd heading of the 2-page report.

Were we depressed about the result? No. Actually both me and my poor hubbie were elated. He no longer suspects that I purposely try to irritate him. I no longer feel bad about losing my teaching jobs.

The neuropsychologist recommends a one year follow-up to "identify a possible concomitant dementia, such as Alzheimer's disease."

XXXXXXXXXXXXXXXXXX

1. Given her memory difficulties and memory decline, she may benefit from an acetylcholinesterase inhibitor, such as Aricept.

2. It is recommended that the strengths and weaknesses contained in the report be taken into consideration for present and future job training...preferably in a job that does not have a lot of memory or organization demands...

3. Her memory deficits may be augmented with external cues, such as calendars, journals, day planners, and lists. [But I often forgot 'where' I had written it down, or just couldn't find it. I also noticed that sometimes I would miss certain words I was reading - it's like I've got a selective attention problem.]

4. Neuropsychological re-evaluation is recomended in one year, or sooner if there is a prominent cognitive decline.

************

Our brain is a 'use it or lose it' organ. Please be sure to keep youself 'busy'
with good mental exercises.

[fauxgypsy]

Melanie, I have been having similar problems, though yours sound more extreme. I finished Herceptin in August and had Taxol as part of my treatment as well as carboplatin. Most of these symptoms have come up in the lsat few months. Or maybe I just started feeling well enough to notice them. I am hoping that it will resolve. I had wondered about vertigo. I have had it in the past but this feels different. Andi keeps telling me that I will have to learn a new normal but I haven't been able to let go of the old normal yet. Hope you feel better soon.

Leslie

[Bill]

Melanie, it sounds like you have received good counsel from these wonderful warriors on this site. I wish I could help more, but all I can offer is a bagful of warm wishes and a bucketful of prayers. Also, it seems like over the past year I have read many stories similar to yours, so you are not alone. Oh, by the way, please feel free to post as often and long as you like. We are all in this together, and you are helping others by sharing your knowledge.

[chicagoetc]

It is encouraging to me (but sad too) that others of you are or have experienced similar symptoms.

An update:

Oncologist sent me to a oncology neurologist. He sent me for neuropsych testing. The neuropsych tester sent me to cognitive rehab and to a psychiatrist to try meds that might help. They are addressing symptoms only. There is some improvement in memory/attention. I also have organized my life around several notebooks that carry information I need depending on where I go. I've also started taking notes every time I meet with someone at work.

No one is doing much about the nausea yet (had to choose to start by addressing the memory/attention part or the nausea....but not both at the same time). Maybe too the Herceptin is wearing off? Hard to tell. I'm on two nausea meds from before (not enough) and have started drinking ginger ale (ginger is good for nausea) and, surprisingly enough, put a plug in one ear when I am typing, writing etc. I was able to be at my computer for two hours this afternoon at work...which is a good sign.

Work is good. I'm there halftime and can't count on getting better as fast I need to (with respect to work). HR told me I could go forward with my plan to move from half time to three-fourths starting in December and then back to fulltime starting in January. They also have in place a fall-back plan (various ways they can plug in short-term disability if things revert and get worse...or if I find I can't do my job...which I won't know for a few weeks).

So I'm not as scared as I was. Nor feeling as alone.

Thanks to each of you,
Melanie