My Wegener's latest

Had my 7th Cyclophosphamide infusion yesterday. Saw Dr Jayne. He's reviewing my situation and probably switching me on to Retuximab. Also saw Dr Johnny, and he's recommending a new nasal biopsy.Still have 3 more cyclos booked,which may not now take place, and possible clinic date for 6 weeks time. Also given form for blood test (full blood count) at local surgery in 10 -14 days time, and booked this for Thursday week. So I'm not too sure when my next visit/s to Addenbrookes will be!

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  • You have so much going on at the moment... you will have to let us know how things go and if they switch from Cyclophos to RTX... please keep us updated...and we hope you are feeling ok?

    all the best

    Susan

  • Yes, I'm playing a waiting game at present! Not feeling too bad, but recovering from my filling at the dentist today. A bit apprehensive about changing to Rituximab, but Cyclo isn't working very well now, so probably time to try something else.

    Still get down about my nose and the fact that no reconstruction likely for at least 18 months, but not much I can do about that.

    Hoping to go to the meeting of Cambridge support group next month, and look forward to meeting up with other patients.

    Avril.

  • My husband has just recently been diagnosed with Wegeners Granulomatosis and had his 2nd slow push infusion - of Cyclophosthamide (4 to go), early days yet but hope it works.

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