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Has anyone experienced cataracts post-transplant?

Hi all
This is the first time I’ve posted on this forum and I’m not sure if this is the right category, but I was wondering if anyone has had any experience of cataracts or cataract surgery?
I was warned about cataracts as a common post-transplant side effect and I’ve now developed cataracts in both eyes. My vision is poor anyway and I have always needed glasses/contact lenses to correct short-sightedness but the cataracts have progressed relatively quickly over the last 6 months. I’m still legally able to drive fortunately and hoping that’s not going to change too quickly! I’ll be 4 years post-transplant for ALL in January.
I’ve been referred to an ophthalmologist who I’m seeing on Friday but just wondered about what to expect e.g. how bad do they have to be before operating, anything to be aware of? Any advice would be much appreciated.
With many thanks!

Best Answers

  • Accepted Answer
    Hi Gill, welcome and thank you for posting on the forum. I'm one of the online forum patient champions and was treated myself for ALL five years ago.

    I haven't heard of cataracts in relation to transplant before now and I think it's the first time I've heard it mentioned on the forum. I don't recall it being mentioned as a risk at the time of my transplant but then there's lots that I've now forgotten!

    I have had a little hunt around and it seems that it is a possible side effect of a stem cell transplant and more likely to occur as a 'late effect' rather than early in recovery. It seems it can be connected to the treatment regime, including whether radiation therapy (particularly total body irradiation) was included, and also could be related to GvHD. I do know that GvHD can affect the eyes so it would be interesting to know whether you had TBI during your treatment or whether GvHD affected your eyes at all.

    My father in law was diabetic and developed cataracts after many years of laser treatment to his eyes due to diabetes affecting the blood vessels in his eyes. I think the procedure is fairly straightforward and recovery time is fairly quick so if you do go ahead with the operation it will be a short process compared to what you have already been through. I expect they would do one eye at a time!

    Anthony Nolan's nurse specialist Hayley may have more experience and knowledge of cataracts post transplant and may be able to give some advice, but I guess the fact that you've been referred to an ophthalmologist means you will get specialist advice and treatment accordingly.

    Please let us know how you get on at your appointment with the ophthalmologist on Friday as this may be something that could affect several of us here in the future so it will be of interest to those reading the forum.

    Thanks again for raising this question and I look forward to hearing updates as things progress.

    All the best,

  • HI Gill

    I am the nurse specialist in the patient team, thank you for posting.

    You are right, cataracts are a common side effect after transplant and can happen at any time. The treatment that you receive with the conditioning including radiotherapy can be the cause. This is why we recommend all transplant patients have annual optician reviews for life regardless of their age.
    You have been referred to the ophthalmologist and they will assess if you need to have them removed. If you have noticed a deterioration in the last 6 months this could be a sign that it will need to be done. If you do need to have them removed they will do one eye at a time. This is a routine procedure and you should make a full recovery. I hope it all goes well.

    Keep us updated on how you get on.

    Best wishes


  • Thanks for your replies Steve and Hayley,
    Yes Steve I did have TBI as part of my conditioning treatment, so perhaps that’s factor in developing them so soon. My Dad had cataract surgery too and I inherited my poor eyesight from him!
    I’ll let you know how I get on and I’ll be happy to share my experiences with members of the Forum.
    Thanks again!
  • Hi Gill,

    I was unaware of cataracts as a side effect of STC until, coincidentally, just two weeks ago. I have got the start of cataracts and my consultant at the Long Term Effects Clinic said this could be linked to the Total Body Irradiation (TBI) before my transplant. She said to make the optician and dentist aware that I'd had this treatment - I'd only mentioned the chemo previously.

    Do let us know if you have the surgery,
    Best Wishes,
  • Hi Sue
    Sorry for the delay in getting back to you and thanks so much for replying. Sorry to hear that you’ve got cateracts too. My appointment has been pushed back to next week but I will let you know whether surgery is on the cards.
    With many thanks
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