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Chemo brain.

(38 Posts)
mrsmopp Tue 14-Jan-20 17:15:07

After several operations for gynae cancer, I was treated in October 2018 with radiotherapy and chemotherapy.
I’ve noticed memory lapses and lack of concentration and I frequently feel very muddled. It could be my age (75) or it could be heredity ad my dad and grandfather both had dementia. I ought to get it checked, but I’m scares.
Anyone else been through this?

mrsmopp Wed 15-Jan-20 20:26:07

Some have mentioned reading and I was always an avid reader. However if I pick up a book I started yesterday, I can’t remember the characters or the plot. So I now read a short story and find that works, or going back to a book I’ve already enjoyed in the past.
Long term memory if fine- I can remember events from years ago but struggle to remember what I did yesterday.
Also constantly searching for my glasses, keys etc. Everything seems to disappear when I want it.
It’s helpful to know I’m not alone in this.

GagaJo Wed 15-Jan-20 20:43:18

My cancer was almost 10 years ago. Chemo brain still going strong.

Daisyboots Wed 15-Jan-20 21:30:30

Same here Mrs Mopp I just cant concentrate on a book. I cant concentrate on a TV programme for long either.

FarawayGran Wed 15-Jan-20 21:33:21

Chemo Brain does exist. I had chemo six years ago, and at the time I fretted that I couldn't remember things. I even forgot how to knit.
The nurses were great and assured me that it would pass - and it did.
I am now back full-time knitting for my GD and GS

sallysmum Wed 15-Jan-20 22:50:09

When I was diagnosed with breast and lung cancer I was told I had 'just months' to live. I refused to have chemotherapy and had hormone treatment insread. This consists of taking one tablet a day. Four years later I am still here and living a reasonably active life.

mrsmopp Thu 16-Jan-20 18:12:59

I wish I’d been told about hormone treatment. I was never told there was an alternative. After having surgery 8 times I really thought there was no option because they couldn’t operate any more.

Daisyboots Thu 16-Jan-20 19:21:04

Unfortunately Mrs Mopp hormone treatment isnt available for all cancers. The first time I had breast cancer I had hormone treatment for 5 years. Now I have Stage 4 triple negative metatastic breast cancer hormone treatment isnt suitable for me. In fact the doctors say the the hormone treatment Tamoxifen didn't do its job of killing off any rogue cancer cells and that it why I have what I have now 23 years later. Even people with what seems the same cancer may need different treatments.

GagaJo Thu 16-Jan-20 20:10:25

What sort of cancer did you have the first time, Daisyboots? Mine was triple neg and therefore no hormone treatment possible because triple neg isn't hormone responsive.

I wasn't aware that a cancer could reoccur as a different type.

Daisyboots Thu 16-Jan-20 23:02:35

Gagajo the first time I had a stage 1 cancer which was due to hormones they said so 5 years of Tamoxifen. That was in 1996. January 2019 they found what they at first thought was myeloma on my spine. That was followed by 4 months of scans etc of every part of me. Ending up with a bone biopsy of my spine which confirmed that it was actually bone metastases and stage 4 triple negative metatastic breast cancer. Although no breast cancer. I asked how it can change from hormonal to triple negative and was told it's not unusual. They said they didnt have enough material left to test for HER2 but considered it to be triple negative. The oncologist here said that the doctors had not found the HER2 positive made much difference in America. I wasnt too happy with that attitude and neither was my son who is head of histology at the Royal Marsden. As he said I am me and not a woman in America. I have requested they do another bone biopsy to test for HER2 because if I am HER2 positive it opens up another avenue of treatment for me. I have 5 CT scans and a PET scan coming upon the next few weeks. So hopefully after the results are in he will decide on the bone biopsy. Just to clarify I am in Portugal. So my answer is so long winded .

mrsmopp Sat 18-Jan-20 07:15:22

After years of working in an office I now find I’ve forgotten how to type! I stare at the keyboard on the laptop, thinking “where’s the brackets?” The iPad is easier than the laptop for some reason. ?

GagaJo Sat 18-Jan-20 08:25:39

Daisyboots, that is totally new to me. Really didn't know it could change type.

The Triple Negative expert is (or was a few years ago) is Andrew Tutt at Guys, in London. I saw his as a 2nd opinion (before the NHS was decimated). Possibly worth seeing him too? I found him very helpful.

Daisyboots Sun 26-Jan-20 22:36:05

Unfortunately GagaJo I am living in Portugal so I am being treated here. Luckily my oncologist speaks very good English but I dont think they are used to patients who ask lots of questions. He knows my questions are serious and not frivolous because he knows my eldest DS is head of histology at the Royal Marsden. I will note Andrew Tutt's name in my little book that I used to keep any information on my cancer so I can mention him when I next speak to DS. Thank you.