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Predicting splenectomy success w/ Indium

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #18022 by Sandi
This was in the Platelet e-news. It's pretty interesting, since nothing in the past could predict splenectomy success 100% of the time. The one huge hole in the theory is this: How long did the 'success' last? Days, weeks, months, years? When did they stop testing the subjects? I wouldn't call a splenectomy a success if counts fell a few weeks after being released from the hospital. I would, however, definitely have the Indium done (if I lived in the UK or Paris) if I were considering splenectomy. It would at least tell me whether or not it wouldn't be successful. Ann had it done and it was determined that the surgery wouldn't work for her. I think that is a very useful tool since she didn't have to have it removed unnecessarily.

The other problem with the Indium predicting success is that the liver can take over destruction in time, making a once successful splenectomy unsuccessful. They can't predict that. Thoughts, anyone?

Abstract

"Splenectomy is considered the second-line of treatment in patients with chronic primary immune thrombocytopenia (ITP) in whom glucocorticoids have failed. Some patients do not respond to splenectomy or they have postoperative complications. Based on our previous experience using kinetic and scintigraphic parameters, we did a retrospective study with the aim of comparing all these parameters as a means of predicting the success of splenectomy in persistent and chronic primary ITP.

Forty-one consecutive patients with chronic primary ITP refractory to prednisone, who had been splenectomized, were included in the study. The response to splenectomy was assessed by evaluating bleeding and platelet counts before and at different times after surgery. A complete platelet kinetic study was performed before the splenectomy using autologous 111In-labeled platelets. The scintigraphic parameters measured included different indices between spleen/heart, liver/hearth, and spleen/liver.

Thirty-six patients gave a complete response after splenectomy and 5 patients did not respond. A statistically significant difference between both groups was found with initial platelet recovery and with some scintigraphic indices which also showed a variable prediction value for the success of splenectomy. Among these indices, the spleen/liver at 30 minutes demonstrated a predictive value with a 100 % of sensitivity and a 100 % of specificity. Conclusion: some platelet kinetic parameters and scintigraphic indices, in particular the spleen/liver at 30 minutes, were useful to predict the outcome of splenectomy in persistent and chronic primary ITP and, therefore, they should be taken into account when deciding whether or not to perform a splenectomy." Proteins 2011. © 2011 Wiley-Liss, Inc.

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  • Melinda
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14 years 5 months ago - 14 years 5 months ago #18024 by Melinda
I would, however, definitely have the Indium done (if I lived in the UK or Paris) if I were considering splenectomy. It would at least tell me whether or not it wouldn't be successful. Ann had it done and it was determined that the surgery wouldn't work for her. I think that is a very useful tool since she didn't have to have it removed unnecessarily.

The other problem with the Indium predicting success is that the liver can take over destruction in time, making a once successful splenectomy unsuccessful. They can't predict that. Thoughts, anyone?



Someone I know here went to London and had the indium study done, showed a splenctomy would work for her so she had her spleen removed. It worked, her count went up - but it didn't work for very long and all those other places in the body that screen blood must have stepped up to the plate and taken over for her spleen because her count bit the dust once again. Before the study, can't remember exactly when, she had a stroke.

So - her test showed that a splenectomy would work and it didn't, Ann's test showed a splectomey would not work so she didn't have one, would one have worked for Ann?

Only 41 people were included in the study? That doesn't seem like very many.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #18034 by Sandi
You just proved my point. If your friend had been included in the study, she would have been quoted as one of the successes. Not my idea of success.

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  • Melinda
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14 years 5 months ago - 14 years 5 months ago #18037 by Melinda
Nor mine Sandi!

And what if Ann had had a splenectomy after being told the indium study said no AND a few years later she still has good counts & no treatment?? The indium study would have been wrong.

You know I don't believe this hocus pocus. The spleen is not the only place in the body to destroy platelets - does the indium study tell if those areas will NOT destroy those nasty antibody coated platelets? No!

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14 years 5 months ago #18038 by eklein
If I got to the point where I was considering splenectomy I would get an indium study to see if it would NOT work. I believe it would be a good predictor of a for sure failure, if platelets are primarily destroyed elsewhere then no point in taking the spleen.

I agree with Sandi and Melinda too that if the indium study says spleen, no guarantees a splenectomy would last a week or a decade or whatever.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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14 years 5 months ago - 14 years 5 months ago #18051 by Ann
The test doesn't claim to predict 100% whether a splenectomy will work or not. What it does is simply gives you a better percentage success rate to work with. The latest set of figures when I had mine done said that if the result said the sequestration site was either pure or predominantly splenic the chance of splenctomy sucess was 90+%, if the result was mixed splenic and hepatic (liver) it was 16% and if hepatic (liver) it is less than 16%.

Given the opportunity to have the test, I think I'd have been daft not to. For me, the chance of success changed from the usual 65% to less than 16%. What would you do given those odds?

Also explains why there haven't been bigger studies done. If it had been a study, at that stage I'd have opted out!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 4 months ago #18064 by Sandi
I forgot to include this part. Sorry, this was a huge section to leave out. That last sentence is misleading.

"Researchers at L'Hospitalet de Llobregat in Barcelona, Spain, analyzed the results from various blood tests and an indium-labeled platelet scan for 41 consecutive ITP patients who had a splenectomy, searching for something in these test results that would predict splenectomy success. Of the 41 splenectomies, 5 failed. After they looked at their data, the researchers concluded that the results of the indium-labeled spleen/liver scan, after 30 minutes, predicted splenectomy success 100% of the time."

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 4 months ago #18065 by Sandi
Yes, I think the conclusion still is that it will predict failure, not success. That's what we've been saying and I still believe it.

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  • Melinda
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14 years 4 months ago #18066 by Melinda
"...predicted splenctomy success 100% of the time."
If 5 splenectomies failed out of the 41 how can that be a success rate of 100%? Maybe I'm stupid but I don't get it.

And I still say 41 people cannot prove whether something will be successful or not.

We have no idea if a splenectomy would have worked for you Ann - just as anyone getting a splenectomy doesn't know if it will work. It's a crap shoot - maybe it will and maybe it won't.

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14 years 4 months ago #18069 by eklein
Melinda,
The researchers predicted which splenectomies would succeed and which would fail based on the indium study, and their predictions were 100% correct (although the successes we don't know for how long). In other words, 41 people who were planning to get splenectomies had the indium study and then proceeded with their planned splenectomy regardless of what the indium study predicted.

Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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14 years 4 months ago #18070 by Ann

Melinda wrote: We have no idea if a splenectomy would have worked for you Ann - just as anyone getting a splenectomy doesn't know if it will work. It's a crap shoot - maybe it will and maybe it won't.

It's all to do with odds. I guess if the chances of a treatment working mean nothing to you personally and wouldn't shape your choices then the test would be no use to you. That's fine but I don't get why you don't understand that some of us do like to consider the chance of a treatment working before going ahead.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 4 months ago #18073 by Sandi
I pretty much do believe that if the indium shows that the splenectomy won't work, then it won't work. It shows that primary destruction isn't in the spleen.

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  • Melinda
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14 years 4 months ago - 14 years 4 months ago #18081 by Melinda

Ann wrote: That's fine but I don't get why you don't understand that some of us do like to consider the chance of a treatment working before going ahead.

Ann my dear I don't know how or why you read that into what I posted - I used you as an example of someone who was told a splenectomy would not work BUT we don't really know if it would have worked or not because you didn't have it - just as I used the person in my town who was told that a splenectomy would work and she had it and it did not work.

I don't get why you don't understand :huh:

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14 years 4 months ago #18086 by Ann

Melinda wrote:

Ann wrote: Ann my dear I don't know how or why you read that into what I posted - I used you as an example of someone who was told a splenectomy would not work BUT we don't really know if it would have worked or not because you didn't have it - just as I used the person in my town who was told that a splenectomy would work and she had it and it did not work.

I don't get why you don't understand :huh:

Becuase it's irrelevant. We work on odds and not definites. But I do think that being told it will probably work is very different from being told it probably won't work. The first I'd still have to think very hard about before making a decision, the second I don't.

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14 years 4 months ago #18088 by Rhiannon
Replied by Rhiannon on topic Re: Predicting splenectomy success w/ Indium
NOt sure if I had one done or not back in 1994. In 1997 they gave me an idium scan (?) to find out where the particle spleen was. I don't think it had anything to do with determining the success rate of having the op.

I had splenectomy as mine was over grown and count was not going up at all. Two years later they discovered particle had grown and removed it.

Now its 2011 and I still have ITP from time to time. But for me the test would not have been useful since my spleen was over grown. But for how long my spleen had been overgrown I dont know though I suspect only April of 1994 when I noticed the bulge in my 'scout uniform' skirt that hadn't been there before....

So the test be only good in some circumstances as some of us may need the spleen removing regardless of whether it is the cause of the ITP problem.

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14 years 4 months ago #18089 by Ann
An ultrasound scan I'd have thought Rhiannon. Just a guess though. I had one of those early on too.

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14 years 4 months ago #18142 by lili
This is just one of several studies on the Indium scan. All of the studies had small sample sizes, which is true of most studies on ITP, but the problem is that the studies had contradictory results. Some showed that the Indium scan was effective in predicting splenectomy success while others showed the opposite. One possible reason is that the scan is difficult to do, so it's possible that the negative studies just didn't do the Indium scan properly.

In North America, the doctors side with Melinda and believe that the scan does not work, which is why it's not offered here. English and European doctors feel otherwise. For that reason it's offered there. I I tend to believe the scan probably does predict success, at least in the right hands and f I lived in England and the scan was paid for by my healthcare system, I'd probably have the scan.

Lily

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14 years 4 months ago #18146 by Rhiannon
Replied by Rhiannon on topic Re: Predicting splenectomy success w/ Indium
It wasn't ultra sound because I had a die injected into me and went back later and entered a tunnel and had to be absolutely still for 20 minutes or more (can't remember the approx time) I have had a life time of ultrasound scans for the heart to know it wasn't that :P

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14 years 4 months ago #18149 by Ann

Rhiannon wrote: It wasn't ultra sound because I had a die injected into me and went back later and entered a tunnel and had to be absolutely still for 20 minutes or more (can't remember the approx time) I have had a life time of ultrasound scans for the heart to know it wasn't that :P

Erm..<thinks> CT scan or MRI scan with contrast? I've never had either of those.

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14 years 4 months ago #18168 by Rhiannon
Replied by Rhiannon on topic Re: Predicting splenectomy success w/ Indium
I think they used it to try and identify where the particle of spleen may have got to. As far as they were concerned it could have been anywhere in the entire body. Luckily I was too niave in those days to worry about the consequences and these days I wouldn't worry if I had the hard facts..... per se. I worry about the bit before, am i/aren't i. I like things solid.... That don't mean I wouldn't be ill etc but just like to know....

I can't really remember where they eventually found it. I think it was probably within the spleen area just tucked away a little. It had grown so over grown so in a way it would have been suprising if they had got it all first time. I could have written up the story for one of those trashy mags that pay £100 for it but am not very good at dressing up the worst and actually I just took it all as a matter of course as though it natural one could say. That is how I handle things like that I think. I decided I wouldn't be one of these to sell my story because a) £100 aint that worth it and b) just isn't my style. If I was going to sell it, it be in a proper novel. Not some trashy mag that aint that bothered about sticking to the facts and will dress up words to make it readable for people.:P

Might of been CAT scan. I have had one since after the septicemia but naturally without any idium die. But I was allowed music in the later one. Where as for the spleen they didn't. Or was it that I didn't know one could. :blink:

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