Update

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Hi everyone,

I haven’t been around for a while so wanted to check in with an update on my brother who has stage 4 bowel cancer.

He was doing reasonably well on oral capecetabine, irinotecan and panitumubab. He went for his treatment last Thursday and had some sort of episode where he felt awful, was very light headed and he almost collapsed. He recovered and came home and told me about it. He hasn’t had panitumubab for a month due to his skin being in a state with an extensive rash which is a known side effect. He is awaiting an appointment with his oncologist which is a telephone appointment next week.

At the weekend he has had a stroke which has made his cancer treatment more complicated. Thankfully he got to hospital in time to have thrombolysis which has limited the damage, his only deficit at the moment is his speech is quite slow and he has to think about what he’s saying. The stroke team have stopped the capecetabine tablets, so the oncologist will need to decide the next steps. He had a ct scan of his abdomen when he went in for his chemo last week, and so naturally he is very anxious to know the results of that but whilst I support him in any way I can, I don’t think he could take bad news about his cancer at the minute. He said that if he hasn’t had a good response to the chemo so far, he’s not going to have any more. It may all be irrelevant anyway if the doctors think the stroke has been caused by the chemo drugs. He’s having an absolute nightmare at the moment.

  • Dear Lozberry so sorry to hear about your brother, you all must be so worried about him. Let's hope his scan results are give him a boost. Thinking of you both x

  • So sorry to read this  he really has had such a tough time . When does he see the oncologist?

    You clearly acted quickly for him and I am sure he will get further improvements but it’s so hard for you all that this happened during treatment.

    I am hoping he gets some good news with the scan and a well earned break to allow him time to recover .

    Thinking of you both .

    Court 

    Helpline Number 0808 808 0000

  • Thank you, yes I’m worried sick about him, just about managing to keep things from unravelling most of the time. I have just FaceTimed him, he is okay.

  • He was due to have a telephone appointment on Monday. I have spoken to the oncologists secretary and told her that’s not going to be appropriate given his communication issues. She says she will speak to the doctor to see what he can do. He has never had a face to face review with the oncology team, and I felt I was being made to feel unreasonable by asking for it. His case has become more complex and I imagine that  my brother and his stroke team and oncology team need to discussing his treatment options in the coming weeks. I am afraid I am not impressed. Admittedly it does take a lot to impress me but really? Telephone appointment, I think not. They were aware of the stroke diagnosis because the stroke team had e mailed the oncologist so it’s not like they didn’t know what had happened.

  • Thinking of you both, , sending best wishes.

  • That’s terrible . How do they expect him to communicate? 
    I don’t think you are being unreasonable at all . It is about time he was seen in person . Other specialists are running clinics .

    So hard for you . My dad had an in person urology appointment two weeks ago ! I think you have absolutely done the right thing ,

    Hope your ok . This is another angle and more stress .

    Take care ,

    Court 

    Helpline Number 0808 808 0000