Indium platelet survival study

I have a date through for my platelet survival scan in manchester (uk). I'm going for a week of scans in the last week of November to see where my platelets are being destroyed. If they are largely being destroyed by my spleen, I'm currently thinking I will have a splenectomy. ITP has held up my life for long enough and the possibility of being drug free is so tempting!

I thought other uk/European members might be interested, in the future, about the procedure, information and outcome of the scan.

So far, I've been given my scan dates. The first day will be a full day in hospital - they will take blood (I'm not sure how much) and will separate my own platelets from everything else. Then they irradiate them and inject them back in. Following this I wait a while and have my first scan. I imagine that between them taking blood, injecting platelets and doing a scan, there will be a lot of waiting!! The following scans will occur everyday for 5-7 days depending on how quickly my body "kills them", and will only involve a half hour visit to hospital each day.

I have been warned that platelets are tricky little so & so's (really?? no kidding!) and some peoples platelets are resistant to being tagged with radiation. If this happens the scan will be a fail on day 1. If it's a fail, they pretty much say that's your one and only shot at it as tagging is likely to fail in the future too. I have also been warned that I absolutely must not be pregnant and they will either let me sign a disclaimer on arrival confirming that I have, ahem, "abstained" for 5 weeks prior to the scan, or they won't scan me unless they can co-ordinate with the first 10 days of my cycle. No amount of birth control is an adequate guarantee for them. Obviously, I only have the low down on how this works for women, but would assume men can do as they please before the scan

I have also been told that I am likely to feel well, will be fine to work, but no prolonged cuddles for my toddler girlie this is because there will be high concentrations of radiation around my liver /spleen and they don't want little ones exposed. I hate thinking about cuddle-free days but will follow their advice to the letter!

So that's all I have for now. I've been doing my own research and have found some articles which suggest that a high percentage of spleen sequestered platelets can give a splenectomy success rate of up to 90% and these are odds I'm much happier with (as opposed to the standard 40-60%). I'll update when I have any more info. Hope this info is useful to someone who is going through the same in time to come

Hi katsim,

I hope it goes well for you. I tried the Indium scan in Manchester, unfortunately didn't work for me. I had a count in the twenties, but my platelets refused to take up indium. The staff are absolutely fantastic. On a good note, the hospital is near wilmSlow road- Aka the curry mile ( or is that the kebab mile!).
Abuisa

Lol - thanks for the tip about curry mile! I had my letter about it yesterday and it says that I have 2 free hours between taking blood and having platelets injected back in. But as my appointment is at 8.45 in the morning, I'm not sure I could manage a curry! Shame they don't do evening appointments!!

What did you do treatment wise after your scan failed? I'm pretty sure of what I will do with the results (either way) but I'm just not sure what to do if the whole thing just doesn't work out

Hi Kasim,
I live in scotland so that Manchester is my nearest centre where the Indium test is performed. The indium test is not totally reliable but cuts down the odds in your favour of a failure. If the labelled platelets are destroyed by your spleen and none in your liver then the odds are in your favour of a successful outcome. But accessory spleens may develop and have to be removed and the body is ingenious at developing new pathways ,the liver being the main one. But if you get a remission how long will it last and an important organ of the immune system has been removed for nothing since splenectomy is only a treatment and an irreversible one at that. The chances of a successful outcome diminish with age especially over 60 .
Having said that many people get years trouble free from the symptoms of itp, and many who have failure early on wish they had had the Indium test. I would certainly have it before considering a splenectomy. Funnily enough it is not widely publicised in the UK although carried out in London and Plymouth as well as Manchester, and also is available in France(Paris) and in Spain (Madrid). I think the practice here in the UK is changing slowly to try other treatments such as Rituximab (Rituxan), before splenectomy as in the suggestions of International Concensus Report ,2010, by Proven et al.
So I wish you a good outcome to your indium test,and a good visit to Manchester where there is plenty to see and do and a great choice of international cooking---although it rains a lot!
Derek

Hi Derek,

Thanks very I much for the extra background - funny that I thought I'd describe the process but not the actual purpose lol!

In an ideal world I would have a splenectomy, it would last long enough for me to have another baby (I'm only 32) and then when my family is complete, I'd grow an accessory spleen so I get all the benefits of my spleen back and then nplate would work for me long term, with no side effects ever. And I'll also have a winning lottery ticket for Christmas and live happily ever after in a sunny place . I know, I know, life doesn't work like that and right now I'm just hoping that I fall into the percentage that the scan actually works for.

As for manchester, I know it pretty well. Grew up near-ish and had lots of wild nights out in my student days! So I know the bars at least!!! Happy days I'm wondering if I can make it to the Christmas market and back to the hospital in the 2 hour gap, but I'm not sure I can without running.... And that would not be a good look for arriving back at the hospital lol! Especially with all that rain too

I expect they don't advertise it because of the monumental cost involved. Interestingly, I have just tried to google the uk "NICE" guidelines for the scan as nice often publish costing, but there is no result for nice and ITP and indium scan. Perhaps some doctors unfamiliar with ITP just don't know about it in the uk - they may reference nice as a first look at ITP? Purely conjecture.

I found this study whilst I was googling variations of nice/indium scan/ITP. Just some more info for people interested In the background, research etc:

www.multiwebcast.com/esh/2010/ITP/4721/ameet.sarpatwari.how.useful.is.the.indium.labelled.platelet.survival.study.html

Katherine

Hi Katsim,
Sorry for all the Manchester detail, I should have looked at your country first under profile. The rain comment came because my wife and I had a 3day break there in September when we spent most time in the Arndale Shopping Centre because It rained continuously. I also have no idea of the cost of the of the indium test because I live in Central Scotland and come under the SDC regulations and not NICE. I don't know much about the night life because our hotel was near Strangeways prison ? Derek

No worries Derek - even if you'd seen that I'm from the uk, it's still nice to hear other people's experiences. Sorry to hear you got stuck in the arndale on your visit - it's a bit grim for just one day, never mind 3! If you ever go back, pack as if your visiting the Scottish highlands - good wellies, a big coat and you might just get around manchester without getting too soaked. I bet we get more rain here in the north west than you do "up there"

Katsim wrote:

I found this study whilst I was googling variations of nice/indium scan/ITP. Just some more info for people interested In the background, research etc:

www.multiwebcast.com/esh/2010/ITP/4721/ameet.sarpatwari.how.useful.is.the.indium.labelled.platelet.survival.study.html

Katherine

Ha! I'm one of the subjects in that study. That's a weird thought. I had hepatic sequestration and was one of those who did not go on to have a splenectomy. I went on to partake in a study using romiplostim and have now been able to stop using it and am in a sort of remission with high enough counts to forget about ITP.

Ann wrote:

Katsim wrote:

I found this study whilst I was googling variations of nice/indium scan/ITP. Just some more info for people interested In the background, research etc:

www.multiwebcast.com/esh/2010/ITP/4721/ameet.sarpatwari.how.useful.is.the.indium.labelled.platelet.survival.study.html

Katherine

Ha! I'm one of the subjects in that study. That's a weird thought. I had hepatic sequestration and was one of those who did not go on to have a splenectomy. I went on to partake in a study using romiplostim and have now been able to stop using it and am in a sort of remission with high enough counts to forget about ITP.

Fab claim to fame! (On this forum at least!!).

Good to know there's life after the scan results regardless of which way they fall. I may be asking for some morale support if my scan results are hepatic too. Really pleased to hear you're kind of, hopefully, fingers crossed, in remission. Hope it stays that way for a long time

Katsim, I wanted my result to be hepatic so I was over the moon. I had no intention of giving up my spleen, and getting that result kept the haematologist quiet! I have a different haematologist now who doesn't do splenectomies at all, which is ironic considering I see him at the hospital trust that does the indium scans.

Ann, you see one of the most famous ITP doctors in the world! Absolute top care! How have your counts been?

Ooh, who do you see Ann? I'm intrigued!

I would really like to have my spleen out and be 'normal' again. Well, as normal as I ever have been

I have fertility problems and no gynaecologist will support me & hubby in having another baby if I'm not drug free. And yes, I've asked around! Counts bottom out at 1 if I'm not on treatment, plus I work with children with autism, some of whom lash out occasionally when they're frustrated. If I wasn't in this position, I wouldn't necessarily be so keen, but hey ho, it is what it is :S

I see Drew Provan. He's the guy giving the talk in the little film which is a bit old but worth watching.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Sandi, I haven't bothered to get a count done since June and I didn't find out the result then. The time before that was in April when I had a count of 145. I had a count of 54 in December and either of those will do me. Will get a count done next month.

Katsim, you have an unenviable problem. My ITP waited until I was older before making an appearance and for that I'm grateful. With regard to work, I know that one. I work in the NHS and have avoided my original specialty of learning disabilities because with counts of 1 and 2 I felt unsafe. Good luck to you, and I hope you get the result you want from the indium test.

Had my first day of scans today and I am absolutely shattered! Was at hospital at 7.30 for an 8.30 start (traffic is awful in Manchester!) and had my last scan at 6pm - left hospital at 7pm.

Quick summary of the first day is;

8.30 - took some blood. Probably just over 100ml total and in exactly the same way as a normal blood test. I had wondered how much they might need!
9.30 - they told me they were able to successfully label the platelets so I could come back at 11.30.
11.30 - injected small vial of platelets, scanned me for 30 mins, put a cannula in to do repeated blood tests with each scan. The they did the blood tests.
2pm - scan for 5mins & blood tests
6pm - scan for 5mins & blood tests.

They said the scan shows where the platelets are being destroyed & the blood they take shows the timespan in which the irradiated platelets are destroyed. I did ask if the scans were pictures & if they could give me any details or hints day to day, but they can't so will now be scanned once daily until Friday & then hopefully my consultant will have the results by Monday when I go to see him.

To be honest, apart from waking up at 5pm and being tired to start with, the day was pretty easy. The hard bit was that I was tempted into town to do some Christmas shopping in the arndale and at the Christmas markets so walked about 7 miles to & around the shops in between scans!!!

Bedtime for me!

I'm up & getting ready for day 2 of scans! Today is just one scan & blood test so should be in & out of hospital within 30 minutes.

Thought I should add side effects - I have none apart from very sore leg muscles after walking a long way without doing stretches. Otherwise all good

Day 3: more of the same. A 5 min scan of my front, 5 minute scan of my back and then a quick blood test. In and out within 20 mins - the staff at manchester are great! Very efficient!

I did catch a glimpse of my scan today. The screen was entirely black, apart from one thumb print sized white glow and all seemed to be in one localised place. I thought it was on the left, but the nurses assured me it was on the right of the screen. I'll take their word for it as I was lying down and looking at the screen upside down whilst they were actually sitting in front of it! Unfortunately when I spoke to them, we couldn't decide on the orientation of the screen and whether the right on the screen was my left or my right.

Not that it matters much, I need to wait & see what the proper results say anyway.

If anyone knows where I can buy patience in a bottle I would appreciate being pointed in the right direction!

Kat

If you find that patience let us know!! We will all make a run for the store until it us sold out!!!

Hope the results are helpful!! I always hate the wait too!!! And I always try to see on the machines too... And read far to much into anything they say or ask!!! Good luck! It is interesting hearing how involved these scans are!

Day 4: more of the same. One 5 min scan each side & a blood test. I grabbed several nurses today (after hearing that patience isn't for sale ! And "we" reckon the right of the screen is my left - so possibly spleen

In other itp news - the official "dr drew proven" (aka Ann's amazing itp consultant) is following me on twitter as of today! I started following him last week after following Ann's link & a couple of others. I feel I should comment on slightly more intelligent things on twitter now!

Last scan today with a blood test. All done now! Should find out the results on Monday so will keep you posted.

Have a great weekend everyone

Results are back!

My platelets are being destroyed "predominantly in the spleen". I've asked for an official number/percentage as I don't really like the word "predominantly" - does it mean 51% or 85%???! So I'm waiting on tht figure.

I'm feeling very mixed about the result. Have a lot to think about & discuss with hubby before making any decisions. I think the reality of possible surgery is a scary thought when I feel so well in myself

In the end it will honestly be your choice. This scan just gave you another bit of information to help you in your choice.


All that matters is you make an informed choice and no one is making it for you!

Predominantly destroyed by the spleen gives you something like a 90+ per cent chance of a successful splenectomy. I still wouldn't do it but it's your decision.

Thanks guys.

After having several very long talks with hubby, it seems that the bottom line is that I've got good odds for splenectomy and I want more kids. In a different world I'd love to take nplate, but it's not safe for pregnancy & hasn't been in the market long enough for any reliable pregnancy related studies. Rituximab does have some studies showing safety in pregnancy, but do I want to be a guinea pig? Plus I've mentioned I have fertility problems & no gynae will help me until I'm 12 mths out of rituximab treatment, by which point I'm more than likely back in the same position I'm in now

I've stopped taking my pill & in the past I haven't responded to steroids when I'm not in it. I'm going to see where my count settles - is be happy with anything over 10 & wouldn't treat if I have no symptoms. But even as recently as September my counts plunged back to single figures without steroids. I'm going to put off surgery as long as possible - but I think that's the best chance of living my life the way I want to live it. And at the end of the day - I want to follow my dreams. I won't settle for less & let itp stop me without putting up a damn good fight. If it doesn't work at least I'll know I tried my hardest.

Kat:

You have very valid reasons for wanting to go that route. I'd probably do the same thing. I'd already had my kids when I got ITP so that never had to be factored into my decisions. I do think that splenectomy has it's place and although it's getting harder and harder to justify that place, you nailed it. Having the Indium was a very good back-up for your decision.

I don't mean to make this sound like you have my blessing. I'm just letting you know that you are making a good, well thought out decision. I wouldn't want to be the one to make you second guess yourself. I think we all tend to tell each other like it is here, just like a family would. Your choice is to give up children or your spleen. I'd choose giving up the spleen too.

Glad you got results! And it does sound like Sandi said a great reason to decide to go for it! So hard to make decisions isnt it? Hold out as long as you can and keep us posted- both on a splenectomy and upcoming children!!! Thanks for sharing your indium journey!

Thanks for your replies ladies

I do feel that this is the right decision for me at this point in time. It helps to know I have this fab community to come back to however it goes.

I will keep you all posted....

Katherine

I've had my letter about the scan results back so my formal results are (drum roll please....)

Destruction to pooling ratio for the spleen is 1.59 and for the liver 0.77

The increase in spleen to liver ratio during the course of the study is 2.07

And that is all completely meaningless to me lol! Interestingly the letter then summarises that the values are on the borderline between predominantly splenic and purely splenic destruction. Also, my platelets last around 27 hours as opposed to the normal 7-10 days. So, in theory, doing something my platelets dislike for a day could affect my counts and then they could bounce back? Hmmmm - very interesting! Thought I'd update here as the final instalment in the indium scan saga (not to be mixed up with any more riveting saga's!!!)

Hello Kat,

Thank you for sharing! I was not aware about the existence of this test and I'm evaluating the possibility of an splenectomy but my hematologist is still doubtful about it because they realized I have several liver hemangiomas that could also be responsible for my platelets destruction.

Same as Ann, I don't really want to give up my spleen so easily so I'll definitely ask my doctor about this test, and see how it goes for me!

Hi Katsim,

I'm so pleased the scan worked for you. And you have a result that hopefully will inform your future choices. I'm now two months after Rituximab treatment, and my count has increased to 76 as of yesterday. My consultant is going to ask Manchester to give me another chance with the scan, now that my count is higher(-last time 18 months the count was 22, and the scan failed).
All the best
Kalim