Post Chemo Memory Loss

[TudorPurr68]

Hello all. I need help, I'm getting worried now. I finished my chemo last October but am still experiencing memory and concentration problems. How much longer am I to expect this?? I'm currently on Avastin as you may have read, with massive pain. My new sympton is my nose blocks at night, only at night. Is all this ever going to end? Any advice welcome. All the best Xx

[Irisisme]

Hello TP,

You ask “is all this ever going to end?” - I hope it will but if not you’ll have to settle for it being better than it is now. That sounds harsh but the ‘new normal’ you will reach may not be without some fall-out - but also some joy.

Avastin causes nose issues, often nosebleeds- that will improve when you’re off it. I stuck Vaseline up my nostrils using a cotton wool bud - not that I’m recommending it for you! I’m not sure the professionals would like it, but it did help me - be careful as it might set off a nose bleed.

The cognitive abilities might improve in time. They have improved for me but I’m not quite as sharp as I used to be - doing puzzles (crosswords etc) will help though I found it frustrating at first when I couldn’t do them as easily as you used to.

Pain; that’s a tricky one. Joint pains are common and for all sorts of reasons but, despite the pain and fatigue, you need to keep moving. I have ‘bed-exercises’ for when I wake up because of joint pains but I will be seeing a physiotherapist soon.

Here’s hoping you see light at the end of your tunnel soon. Try to find something to bring you joy, it’s Spring in the UK and even just looking out of the open window is lovely today. If you can find no joy in anything it’s time to seek counselling.

Lots of hugs,

Iris xx

[MostlyHarmless]

My concentration improved once I was taken off Avastin but I'm still not as sharp as I was. Iris is right, you need to keep moving at least a little. I have my 'bed wiggling' exercises in the morning. I was very inactive during chemo and had great difficulty walking afterwards so try to move every half hour or so. Even just standing up and sitting down a few times on a bad day will help. My joint pain has greatly reduced now I'm off the Avastin.

[BellmoreBelle]

I found I had to actively "work my brain" to access the memories. They're still there, but the connection had be lost. I would lie in bed and think myself through things that I used to recall naturally, without effort, until I remembered. The good news is, once you forge the connection back, it stays. Case in point is that I forgot every single one of my basslines, and I've had to relearn them all, but it's astonishing. First time through, I can't remember at all, second time it starts to come naturally, and the third time, my fingers fly to the right fret as the muscle memory kicks in. Logic puzzles are brilliant. It does come back, but it takes quite a while... and exactly like those physical muscles - keep exercising! These days I have very few blanks and I'm remembering random old things all the time.

[ZenaJ]

My memory has definitely been effected. It's worse some days than others. I haven't had any chemo since January 2014 and accept the chemo damaged me in many ways.

To help improve my memory I've just started Spanish with friends and am also learning to play the guitar. These things are said to improve your brain and help with Alzheimer's.

There is improvement with some of my 'side effects' but on the whole I've learned to live with them. It's certainly better than the alternative.

I hope your memory improves, Love Zena xx

[TudorPurr68 in reply to ZenaJ]

Hello Zenaj. Yes, I'm with you on that I have good days bad days. The battle with cancer then chemo has left me with much to cope with. My beautiful cats are such wonderful therapy with their purrs. My friends are wonderful too.

Your learning something new really appeals to me. I perform comedy and music with a close friend so I have lines to memorise but after our show I want to take up something, perhaps art. God Bless, I wish you well x Jayne

[AlaNtO]

If safe to do so walk, walk walk. It will be tiring to start of course so only go a short distance, rest if need be and return. Rather do a short circuit a number of times than a long one where it is not easy to say you have had enough.

[TudorPurr68 in reply to AlaNtO]

Hello Alan. I agree, walking is excellent for mental issues such as depression.

My Gp is pleased that I walk a fair bit. I need to do more but have pain with Polymyalgia Rheumatica.

All the best - Jayne

[luluw]

Suggest you have a look at the replies to Janwen52's post (just after yours). The brain fog may well be Avastin. The joint pain probably is-it did that to me. I only tolerated 3 infusions before stopping.

I am convinced that chemo does permanent damage-it's heavy metal poisoning after all. My knees aren't what they used to be (3 years on) and my brain definitely isn't. BUT the problems are minor and I'm still here feeling well (or I was until I had to start chemo again!) and being active.

I agree that walking is brilliant. We got our rescue dog after I had recovered enough from first line chemo and it'sone of the best things we ever did. He needs walking twice a day and it has been crucial in getting me fit again and able to tolerate more chemo. I built the distance up slowly.

I really hope you feel better soon.

love Lou xxxxxx

[TudorPurr68 in reply to luluw]

Thank you Luluw x

[SuperHubby24]

Good Morning, My wife was having Avastin for some considerable time, and whilst it 'did what it was supposed to do', there did seem to be a price to pay by way of side effects. Having said that, none of the symptoms that you mention really presented (although there were lots of others). Any memory or concentration problems, which were certainly not significant was generally put down to extreme fatigue and 'Chemo Brain'. I do not recall her having a blocked nose particularly. She had the most terrible aches and pains as a whole, particularly in her neck/shoulders. She had taken to sleeping in a neck collar through the night to ease this. Sorry that I cant be of any more help really. As a final note, I would just like to add that in my/our experience, everybody seems to react differently to these medications, finding a commonality can often be difficult. It staggers me that this seems to be the case, but it is. I wish you well trying to find a satisfactory resolve, maybe chat with your consultant of the Oncology nurses as they will have seen a large cross section of people on these meds (particularly Avastin in your case). Wishing you only the very best Xx

[TudorPurr68 in reply to SuperHubby24]

Thank you SuperHubby x