How bad is chemo brain and does it last? Eye problems?

Thanks, Sjacobs146, it's good to hear that chemo brain doesn't always happen. Did the other side effects resolve (sure hope so)?

Claireinaz, I'm filing that away re Aromasin helping with chemo brain. I really need to look into the AIs more, I'm not exactly sure why the drug of choice for me (according to original oncologist) is Femara. My PCP said she has a couple of patients on that and they are pretty miserable. Good to hear that switching can resolve at least some of the problem.

Thanks for the info., I appreciate it.

Claireinaz, helps to know that if one AI can't be tolerated another one might not be so bad. Glad you found one you can stand. I also work in a communication field and am going to have serious problems if I can't find the words. But I am surely going to have to try the hormone drugs, much as I hate the thought of those.

SoCalGrl, thanks for sharing your experience, that is definitely encouraging to hear. Really glad you didn't feel chemo brain and that your side effects abated. Very happy for you that you're past all that stuff. Still thinking (probably over-thinking) and agonizing here, but I know I'll be past this phase of the process, soon, too, just need to work through it all.

Thanks again for the input, I appreciate it.

Split-bean, thanks for taking the time to clarify. For those of us in the "intermediate" range of the Oncotype DX test, the decision about chemo becomes quite complicated as medical oncologists may "strongly encourage" chemo and yet at the same time they cannot advise what the benefit will be; meanwhile, chemo is basically poison and there are significant long-term risks to consider. I am at the top of the "intermediate" range and have had three opinions re benefit: 2-3%, 2-4%, and "there is no way to calculate benefit accurately, you are in a 'gray area.'" All three oncologists said there is no real data to assess what chemo benefit will be, they are making the best educated guess they can make. The online calculators don't factor in Oncotype DX score, so it's hard to figure how much you can rely on those stats, which give me a much lower recurrence risk. As you indicated, response to chemo and SEs are very much a crapshoot for anyone, so risk vs. benefit is anything but clear, but it's important to think about risk vs. benefit. I'm not talking about "inconvenience," more about potential serious long-term effects.

Since my tumor size is fairly small, I'm guessing I'm at or near the bottom of the 15-24% recurrence risk Oncotype DX shows on the first page of my report. Who wouldn't like any percentage decrease in recurrence risk, but I want to make an informed choice about my treatment and all of its implications and not just go into chemo in a blind panic and unaware of the risks.

Some kind soul on this board suggested that I inquire whether CMF would be an option in my case (rather than TC), and oncologist said that could work. Have just begun my research, but so far, CMF seems close in effectiveness and the potential side effects seem less severe. I really appreciate all of the information offered on this board. I know some folks can just take their oncologist's advice right off the bat and be comfortable with that. I have to do my own analysis and look at treatment in a more holistic way. In my experience, cancer docs are laser-focused on cancer and less so on the whole person and the broader implications of treatment choices.

marieB, thanks for sharing your story. Really hoping there can be some improvement in your situation. Have you investigated accupuncture for the neuropathy?

What I truly hate is that (at least in my experience) the oncologists tend to soft-peddle and minimize the SEs. Patients really need to go into treatment with their eyes open and should be told about the stats re incidence of neuropathy, permanent hair loss, heart damage and the like, and should be given options if a certain drug combo is not the only alternative. I had to ask about CMF, the option was not offered to me up front.

Hi, JuniperCat, I ultimately decided to skip chemo. Had a pretty confusing situation with my score of 30: first oncologist used a "physician calculator" on the Oncotype DX website and told me my benefit from chemo would be 2-3%; second onc said chemo benefit would be 2-4%; third onc said couldn't calculate benefit, but strongly encouraged chemo. I researched the recommended TC protocol and decided the likely side effects were too severe and I would not do that for a small benefit... But was still afraid about the score of 30. So asked about an older CMF protocol that was slightly less effective (so I figured maybe a 1-3% benefit), but had slightly less severe side effects and was told by all three oncologists that this was possible. But when I stepped back from the fear for a minute, on a gut level I had a problem with using this one test conducted by just this one company that promotes the crap out of their product to the point where you basically cannot find any information on the web that didn't originate from one of their press releases as the sole basis for making a decision to do something as potentially life-altering as chemotherapy. I did do a lot of searching for more information about the test and the basis of the assumptions it uses.

Eventually I realized/learned the following about the Oncotype DX test:
1. The patient cohorts they used to come up with the recurrence score charts include people with stages I and II cancer, grades 1-3, and with tumor sizes up to 5cm. So within the category that matches some biological markers of your tumor, there is a wide variation in degree of disease.
2. Physicians have access to a "Recurrence Score-Pathology-Clinical Calculator" in which they can input patient age, tumor size, tumor grade, type of hormone therapy (tamoxifen or AI, they assume ER+ and node-negative). That's where my oncologists got the 2-3% or 2-4% benefit, because my recurrence risk on tamoxifen is estimated at 11% and on AI at 9%, and chemo is supposed to reduce recurrence risk by around 1/3. Genomic health states that the recurrence score obtained using the calculator is more accurate for the individual patient than using the recurrence score alone or pathology findings alone, however, they also state that the calculator has not been validated according to industry "Clinical Laboratory Improvement Amendments" standards. You can read more about the physician calculators and access the user guide here:
https://breast-cancer.oncotypedx.com/en-US/Profess...

I was curious what my 11% recurrence risk on tamoxifen alone would translate into as a recurrence score, and eventually found out that this would put me at a score of 17, or at the top of the "low risk of recurrence" category. Reviewed all of this information with my PCP just to get a reality check, and she agreed that my recurrence risk really isn't as high as the score of 30 implies and it would make no sense to hazard chemo for such a small benefit. So after two excruciating weeks, finally had my answer. Phew. On to radiation therapy, dreading that, but it does appear to offer a clear and significant benefit for the risk involved.

BTW, while reading Susan Love's "Breast Book" as part of my research on minimizing recurrence risk, found out that a program of pretty moderate/doable regular exercise can reduce recurrence risk by 6% (or more according to some estimates), so I am swapping out exercise for chemo, and very happy to do that. ;o)

JuniperCat, if you would like the calculator run using your stats, don't see why your oncologist couldn't do that. I had two oncologists mention that "it is not validated," however, Genomic Health specifically indicates that the results are more accurate for the individual despite this. I have also read that one of the doctors involved in developing Oncotype DX felt there was some discrepancy within the "intermediate risk" results, I'm guessing that may have been one of the factors that drove the development of the calculator. As you can see in the pie charts in the user guide, when they ran the analysis using patients from their studies, 33% of those moved out of the "intermediate risk" category.

Not sure whether I'll be getting 3-week or six-week radiation therapy protocol, guess I will find out at my sim next Tuesday. We can do this--hugs right back to you!