Chemo brain.

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.

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.

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 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 .

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.

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.

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.

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.

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

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

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

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.

I finished having chemo and radiotherapy around 18 months ago for breast cancer. I found it difficult for a while to concentrate on reading books and when having a conversation suddenly found I couldn't think of a particular word I wanted to say. Over the last 6 months it has improved a lot and I can now enjoy reading books again. I still have the odd moments when I can't think of the right word I want to use but it isn't as bad now as it first was. I also think it depends a lot on the type of chemo you have and how many sessions you have to have. Some chemotherapy is much stronger than others depending on your diagnosis and this probably contributes to "chemo brain fog". I had to have chemo first before the surgery then last of all the radiotherapy. The aftercare team at my local hospital said it is not unusual for this to happen bearing in mind everything your body has been through.

I still struggle to find correct words and remember people's names my chemo finished 5yrs ago but see your GP like others have said it could be caused by something else take care .

I'm sorry to hear that you had cancer and had to go through all the treatment. I hope you make an appointment with your doctor and that all is well. I definitely think that stress can cause memory problems. It's like a kind of brain fog.

as everyone says, do go to your GP, or mention it to your specialist if you're still having hospital appointments re your cancer. I had chemo and radiotherapy for breast cancer in the early 90s, had to take early retirement (age 50) because of the aftereffects of the treatment. Also, 2 girlfriends broke off any contact because I was so woollyminded and vague. Looking back, perhaps they were a bit intolerant. Anyway, it took at least 5 years before I felt near normal. But that was 30 years ago, treatment has improved, so I hope you will feel much better soon.

It is definitely caused by the chemotherapy and is a well known side-effect. I have had this myself. You may also have suffered from fatigue which can affect cognitive skills too. If in addition you have had any hormonal treatments, this may have added to the problem. Radiotherapy can cause fatigue too. It will pass. Just be kind to yourself and rest when you need to. Information on Macmillan website. Get well soon. xx

Speak to your GP if only to put your mind at rest. This is not the same at all but I had sepsis 18 months ago - went into to septic shock and my family were told to expect the worst. Obviously I made and I'm so thankful I did but I'm not the same person. My brain is foggy and fuzzy, I get very muddled and my concentration is poor. All very real just as chemo brain is. Sending lots of love

You might even only have an infection - easily treated with antibiotics.

You have to overcome your fears and ask your GP. LET’s hope it’s a ‘waste of a worry’ and all is well.

Chemo brain quite well known but don’t let that stop you going to GP to get checked. Also ask your chemo nurses / consultant / specialist nurse

My 73 yo husband has chemo brain after being diagnosed with Myeloma in 2015 and having chemo drugs and a stem cell transplant. He's back on chemo drugs now. His short term memory is bad. His haematologist says this is normal.

Yes Chemo brain definitely exists and is mentioned by patients on many online sites. I finished my first course chemo at the end of August 2019 and while my memory is better than it was l still forget words or even what I am talking about. Am about to go for more scans to see if it has spread or if the radio therapy has slowed it down. If the first it will be more chemo. And more chemo brain.

I had chemotherapy and radiotherapy for breast cancer which finished nearly 6 years ago but was followed by medication which killed off all oestrogen. I went on a Cancer related fatigue course run by Macmillan in Bath, and this problem of poor memory, poor concentration, fatigue etc was discussed. Many people get it and, sorry to be a real "Job's comforter", it has been documented that some people still have it up to 20 years post-treatment. I still have it and, after a busy day, I have to take it easy or I am likely to faint when stood for very long!
The side effects of the chemotherapy can be brutal but we are still here to tell the tale!

Definitely get checked...there is so much more they can do these days to slow it down if it is dementia. Good luck.