i have just read this and wanted to share our experience.
My mum has secondary breast cancer and having known it’s in her liver, bones and lungs for a few years, we learnt in January it had spread to the lining of her brain. She therefore had whole brain radiotherapy in February. She had 5 sessions from 10th February. The oncology team warned us she would be tired but honestly we don’t feel we were warned enough about how badly it would hit her. It was around the 22nd Feb we started to notice she was becoming tired and also she started to lose her hair.
On 10th March, so four weeks later, she was went through a four week period that we were not expecting. She was sleeping probably 16/17 hours a day and just really struggled with how she felt. She lost her appetite and lost 23 pounds in 3 weeks. Every waking moment for her felt like a struggle.
My mum is a fighter, she has been fighting cancer for 20 years and has had operations, chemotherapy, hormone treatment, other radiotherapy etc so has been through a lot. This felt like the hardest thing she has ever been through and I want to share this with you because although we had 3 or 4 terrible weeks of her feeling awful, all of a sudden, she turned a corner and she has now completely recovered from it.
I want to share this with you because we went through the time as a family, unprepared, feeling like it was so bad we questioned that the situation was worse than we knew and this could be at the end and if someone had told me that what she was experiencing was considered normal or common to feel and that all of a sudden she would recover, it would have taken away some of my worrying.
My mum had the results of her body scan on Friday and for her brain this treatment has made the cells so small, they can no longer see them on the scan.
so I want to reach out to you and send you my experience so you know that if things seem/ get bad for some time- I now know this is a common reaction to whole brain radiotherapy and the results of the scan now it seems worth it.
if you ever need support please message- stay strong and keep positive!
Sorry its took me so long to reply back but was having issues with the site on my mobile.
I really appreciate you replying to this and telling your mums story. My mum has brain and bone mets, she was doing ok before her radiotherapy but this has really took its toll on her, I am worried sick. After reading your reply it really did help and give me some hope as it sounds just like the way my mum is.
So how long after your mums radiotherapy did her symptoms get worse?
When did things start to improve for your mum, how long after the radio?
Sorry for all the questions but its so nice to hear positive things.
We feel the same about not being told about how severe the side effects would be, all we were told was she would be tired. It makes me so angry.
No problem! Sorry to hear you are going through what you are. I genuinely understand how hard the situation is, I really do. Nothing anyone can ever say really helps however I do find it helps to talk to someone who can relate. To just listen to worries and you know they know how you feel etc.
So I will give you full timeline of our last year as it has been our worst yet (even though this has been something my mum has been fighting for 20 years now).
August 2016 -We learn my mum's breast cancer is now secondary (after Mastectomy, Chemo and Radio 16 years prior). A couple of bumps in the road between 2000 and 2016, finding it in her womb in 2013 but a Hysterectomy they believed removed it from her body so they were confident that was sorted. We were told it was now in her Liver, Bones (few places - mainly hip) and Lungs. She was put onto oral chemotherapy with scans every three months which helped control the disease for almost 3 years.
Feb 2019 - Small tumor is found in her spine which is causing her bad back pain so she undergoes radiotherapy which successfully shrunk the tumor and remains small.
Nov 2019 -One side of my mum's face completely dropped. Naturally, the hospital thought she had a stroke, which she hadn't. She was then told she had bels palsy and was put on a course of steroids for a month and her face went back to normal by Christmas.
Jan 2020 - Face dropped again and the hospital decided to scan her (have always felt slightly frustrated this wasn't done in Nov 19 given her circumstances) and we were told that it had spread to the lining of her brain. To be truthful this was the hardest thing my family and I were ever told. It seemed the scariest and at that point, they needed to take action and change her treatment. She was told she would have whole brain Radiotherapy and then have intravenous Chemotherapy.
Feb 10th, 2020 - Week of whole-brain Radiotherapy, every day for 5 days. For this entire week, I would say she felt fine.
Friday 21st Feb - She went on a Spa weekend to rest and that was when the tiredness started to kick in. Her hair started falling out rapidly. She needed to nap maybe 3 times a day.
Monday 24th Feb- Monday 9th March - I would say she was generally tired. We work together in a family business so was coming to work most days but was having a nap during the day of about 2 hours so compared to her normal self a much more tired person.
Tuesday 10th March - It was genuinely like she fell asleep and didn't wake up for 5 weeks. Exhausted, every inch of her body ached, very irritable (and she is not an irritable person at all), completely off food. This was scary. The scariest side effects we have had of any treatment. As I mentioned, lost 23ibs in 3 weeks. Had to be carried up and down the stairs. Body shaking all the time including her mouth as she spoke. It was terrifying. We started to question and panic behind the scenes that this was something more, that this could be the end. The oncologists did introduce her to a palliative care team in our area which frightened the living daylights out of us, however, upon using them and learning more about what they are, they are not just for the end of life and she was very quickly signed off by them and no longer is under their care. This situation was made 100 times worse by the fact that we very soon after her 'falling asleep' went into lockdown, she lives with my Dad only and to be dealing with this from a distance felt impossible.
Emotionally this felt awful, trying to be strong for everyone and really help where I could. I used to cry to my partner and say I actually felt like I had lost my mum. My mum and I are very close, we live on the same road and work together so to go from that to having a brief couple of seconds on the phone every 4 or 5 days where she didn't even have the energy to talk felt awful.
It is so horrible to see people you care about go through things like this where you can really see them suffering so I understand your concern and upset.
18th/19th April- My mum was able to get herself dressed, only have one nap during the day and her appetite had begun to return.
And from then until now. It makes me sad to say she isn't the same. She appears as someone you can see is ill, whereas before (last year) you would not have known a thing even whilst on her oral chemotherapy. I do believe the radiotherapy has made her weaker and more tired still. BUT my mum is with us, she wakes up every morning and runs her house, she cooks, showers, gets herself dressed, she works (albeit at home at the mo because of COVID), we can talk, she comes for tea/ coffee, for the first time this year we went shopping this week, she walks the dog every day, shes had a few lunches/ dinners with family and friends and we now are enjoying things more like normal - just knowing she is more tired and has to take things a bit easier.
As I said much earlier (sorry I am writing war and peace) - she was supposed to have Chemo after radiotherapy. Like many people, her chemotherapy has been put on hold because of Covid but she is finally starting it next week.
She isn't allowed to drive for a year so isn't enjoying myself or my dad having to run her around everywhere (she feels guilty). I suppose it is also a lack of independence but I see it that I get to spend more time with her thank I usually would!
She had the results of her head and full body scan very recently (first ones she has had since January). Her brain scan was very positive, although it is still there, they have said the cells are now so small they can't be seen and for me, that was the biggest relief. The brain part does seem so scary so I felt stress instantly leave my body hearing those results.
It's a horrible situation, one that feels like it has destroyed my world, which makes me all the more sad because I have a lovely one. I am very lucky with my family and my partner. I have SO much to be grateful for, I am 30 with both sets of grandparents still alive and very active so for it to be my mum just doesn't seem right. Living so close with and working with my mum (and getting on so well with) makes her such a huge part of my everyday life. This makes everything about my future feel grey and I think that's what I struggle with the most, thinking its never going to get any better and in fact worse, I feel overwhelmed and devastated that this is the card we have been dealt.
Like I said, always here to talk. I am sure you feel the same way about a lot of things and always happy to share info about treatment and side effects we have experienced.
