Welcome back!

Side effects from chemotherapy for CLL?

Has anyone had significant side effects after having chemotherapy for Cll? I was diagnosed in 2014 and had chemo in 2016 (FCR on the flair clinical trial) about 4 months after chemo I started getting tummy pains which gradually got worse, had scan but nothing showed up. I learnt to live with it until a year later it started getting more severe and also had frequent toilet visits. Eventually got referred to gastro and after 2 & half years,obviously covid didn’t help but I have now had a diagnosis of Crohns and have seen some evidence that chemotherapy can cause this as I’m quite old to of suddenly developed Crohns (I’m 58) just wondering if anyone else has been affected this way by chemo? Thank you Maria

1 Like

Hi @Maria.G63. Good to hear from you again. It sounds as though you have had a really hard couple of years during a particularly challenging time. I’m so glad you have finally got answers, however, I can imagine it wasn’t what you wanted to hear.
Unfortunately I can’t share any experiences as I have follicular lymphoma but I’m hoping someone on hear might be able to offer more that me. I wonder if the support line might have more information? Blood cancer information and support by phone and email | Blood Cancer UK Perhaps give them a ring.
How are you feeling about things at the moment? X

2 Likes

Thank you Nichola, yes im glad to have a diagnosis at last but I’m finding it difficult as I’ve not long come to terms with the side effects from my CLL but the Crohns is a whole new ball game and not a pleasant one. I’m just waiting on the specialist nurse to contact me with treatment options but I must admit its a blow I could of done without, but heyho it is what it is and I am going to have to get my head round managing 2 chronic conditions x

1 Like

I can imagine! It’s hard enough getting your head around one chronic illness without being hit with another! Have you got lots of support around you, both with your medical team and family and friends? I wondered if your consultant had ever seen any links between the two? Like you said, it’s quite late to be diagnosed if there hasn’t been any past issues. How is you CLL at the moments?

1 Like

Gosh @Maria.G63 it sounds as if you have have had a nasty few years, not helped by Covid.
It is so difficult to get a diagnosis when similar symptoms can indicate different diagnosis.
I hope someone will be able to share their similar experiences, but I am sorry that I cannot.
What we can empathise with is living with chronic pain and the frustration with the time it takes to get a diagnosis
As @Nichola75 says we are here to support you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
How are you feeling and doing now?

2 Likes

That sounds awful @Maria.G63 . I’ve know lots of people with Crohns over the years and they seem to be able to live very functional lives without it affecting them too much. I know it’s a dreadful condition though and not what you need on top of everything else. I hadn’t heard that it was a possible side effect of chemo. I hope you’re able to find coping strategies and get through all of your challenges.

3 Likes