Indium Scans

Hi All,

After a number of treatments, my Hemo is now recommending a splenectomy. Initially I was 'no way!', but I thought I should definitely do the research. I'm based in Australia, and there is nowhere here that does the Indium scans.

I'm rather partial to my spleen, and don't want to take it out if there is a good chance this won't fix anything. From what I have read (thanks Sandi!), the Indium scan won't guarantee a successful operation, but will predict if there is a good chance of failure.

What do people think about these scans, and are they difficult to arrange when you are from another country? Given its my only spleen, I think its probably worth the effort to travel to the UK or Spain for the tests.

I'm keen to hear from others who have done the tests.

Thanks!
Dave

I've read studies that say a good IVIG response is a predictor of possible splenectomy success. I suspect that is the reason why the scans are not available in the USA - IVIG response is just as useful.

That's good to know Hal! I respond pretty quickly to IVIG, however it only lasts about 3-4 weeks.

I 'm in the UK and was offered an indium scan early on in my diagnosis. Very interesting to watch. Mine showed splenic destruction of platelets but I'm still not having my spleen out. Perfectly healthy organ doing its job properly. The rest of the reticuloendothelial system will take over post a splenectomy so no guarantee that platelet destruction will be cured. There is no guarantee you don't have an accessory spleen as apparently up to 30% of people have one. Splenectomy not with out its risks especially as one gets past 60 i.e. me.

Darcher:

Very few have gone for the Indium, but there was a member here who did go a few years ago to the UK from the US and was happy that he did. He seemed to think that it was not difficult to arrange and gave us a very detailed description of the process. I'll try to look for his old post later...no time right now.

Newer studies have shown that there is no correlation between IVIG response and splenectomy success. I have seen many people here who responded well to IVIG but had a failed splenectomy. Also, as Mrs. B said, splenectomies can fail over time. An initial response does not mean that it will be a sustained response.

I hear you mrsb04 - I guess that's why I'm being so cautious. Thanks so much for your feedback. I've already heard back from Bart's Health in London. They were very prompt in forwarding information on the Indium screening process.

Sandi I think I posted the details after I went to England for the scan about two years ago. It was really easy to arrange from the US. I am sure sandi can find the thread for you. I still have my spleen however. Promacta has been my wonder drug. Good luck with your decision.

Thanks Emily. I searched back through the forum and think I found your older posts about the process and the decisions around it. I've already had a detailed response from St Bartholomew's Hospital in London with the full process, cost, and the offer to help arrange accommodation whilst in town. My Hemo is more than happy to refer for the tests, although they still feel its an expensive exercise given the anecdotal evidence that I show all the hallmarks of someone who would respond well to a splenectomy (screening test is currently GBP 1,525).

I must say, this forum is such an invaluable resource as it includes the scientific as well as the emotional process that we as patients tend to experience. Given the long term nature of ITP, I'm becoming more aware of just how much I need to 'own' my treatment plan and be just as informed as the doctors helping. I'm very grateful to everyone here and hope to contribute to help others over the years to come.

Good grief I didn't know they were that expensive. I'm glad I got mine courtesy of the jolly old NHS in Leicester.
Email address is nuclear.medicine@uhl-tr.nhs.uk.
It might be cheaper as not in London but of course getting trains to & from London plus an overnight stay in Leicester will bump up the price a bit.

I forgot that you went too, Emily. That's right...you met Dr. Provan.

Here is the detailed Indium adventure I was talking about.
pdsa.org/discussion-group/6-general-itp-discussion/10063-new-to-itp-my-story-attached-have-questions.html?limitstart=0