Hi all, my mum was diagnosed with colon cancer in May, after a miss diagnosis of a hernia by her GP, she was then rushed to hospital as the tumour had come through her bowel, a six hour operation later they informed us that the operation had been a success and they removed what was two tumours, one was aggressive 8 weeks later following a PET scan we were informed that the cancer has spread to the liver and lungs and told the cancer was terminal, mum was put in chemo in September tablets and IV but she couldn't cope with the IV so this was stopped after round two. Just before Christmas we had a staging scan which showed the cancer was spreading and new tumors were now on her adrenal gland. We are now on targeted treatment Encorafenib and Ceutximab, but mum is not coping with the side effect so dizzy and unstable and exhausted.
Has anyone else had bad side effects with this treatment, mum is 78 and lives on her own with me as her only support and I work and have two children, I'm struggling watching her go through this and trying to stay positive.
Any advice would be greatly received xx
Hi Mitch 77 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
I've done a search in the group to see if anyone else is on the drug combination that your mum is and found that the most recent poster was Dozer, so I've 'tagged' them into my reply to you and hope they'll be able to pop on and share their experiences with you.
While you're waiting for replies, it would be great if you could put something about your mum's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Hi Mitch 77
The targets treatment is very different to the chemo which accumulates. It’s as though each side effect takes a turn but diminishes after a bit .
I would speak to her team to make sure her bloods are all in order as Cetuximab really can strip magnesium and brings lots of issues and it happened quite quickly with my mum .
Also chat to her team to see if she needs the dose reduced. My mum was 81 and lived on her own and managed around 10 months on it . It got easier as time went on .
Send your mum our love and support .
Also make sure she is drinking enough fluids . That was always an issue with my mum .
Take care ,
Court
Helpline Number 0808 808 0000
Hi Court,
Thank you so much for your response, we have a call with the oncologist on Monday, so I'm going to explain how much mum is struggling and hopefully they can reduce the dose and make her more comfortble, she just needs to feel a bit better as she wants to give up all treatment and take her chances at the minute. Will check the bloods as well then you Claire x️
It’s completely understandable but I would definitely speak with her team as getting a tolerable dose which works for her takes time . My mum was out every day and went on holidays whilst on treatment . She had her ups and downs but it actually worked well .
Getting the balance of quality and effective treatment can take a few rounds to level out if that helps her any . But they will have seen this all before and know how to help .
Not easy on you either . Even from the supporting role you are trying to learn as much as you can whilst balancing so many other roles .
Hope you are holding up ok too .
Take special care ,
Court
Helpline Number 0808 808 0000
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