Indium Survival Test Coming to America????

Hey everyone! I have been doing researched and was wondering if anyone else in the US has come across this as well... When I first thought about getting a splenectomy (2 years ago); the indium test was only in the UK, France, etc. But now I've been researching. I want to know that my facts are straight. I have found that is has now been approved by the FDA ( www.ncbi.nlm.nih.gov/pmc/articles/PMC2802075/ ). Next, I took it a step further and searched to see what hospital/clinics are doing this test. I found John Hopkins, places in California, New York, Texas, Michigan, etc. I had actually found a place about an hour away from where I live. We called the office/technician and they said that they do this test. We even asked them the specifics on this test just to be sure it was the test I had been searching for and it was. The only problem is my hematologist continues to insist that this test is not being done here and what I had found was wrong!?!? There's just too many conflicting opinions... I would feel a lot better if someone else on this site had heard this information as well.

I have not heard of anyone here having the Indium done in the US. Everyone has gone to the UK. If you called and they confirmed it though, I guess it's possible. Maybe your hemo just isn't aware of it. Let us know if you go through with it!

Are you sure it's the indium platelet scan they are talking about and not the indium leucocyte (white blood cell) scan which is more commonly used, but not for ITP?

Yes. I am sure... Some places even offer both of these tests. We called the lab technician and made sure it was indium test for ITP and to see if a person is/isn't a good candidate for splenectomy.

Well that's great. Here's hoping you can get it if you want it. It's expensive so I wonder if the insurance companies will play ball. In the UK some doctors don't mention it to their patients and then it's only those who know about it and insist on it that get it.

Ann wrote: It's expensive so I wonder if the insurance companies will play ball.

Ann has a good thought - if it is the real indium platelet scan will your insurance cover it?

Know someone here who had the test, showed it was the spleen that destroyed her platelets so got a splenectomy and not long after was back in the same boat.

Did you happen to notice the date of the article you posted savvyj? 2009 December 29

Wow this is big news! Please keep us posted about the price, and the experience, and the results.
Erica

I will... I have my appt. Thursday so hopefully; I'll have all the facts. And my hema and I will be on the same page.

About prices... When we called the technician they gave me a price range from $500-2700 depending on insurance coverage.

So I'll let y'all know what happens Thursday... Keeping fingers crossed

Good luck and please let us know!

Hey guys sorry I haven't been on in a while... I got really busy with work and school. Anyway, my hematologist told me that this company had the wrong test! and she told me that she went to this conference in Cali and found out that if you have a splenectomy further down the road you will have lung complications. that after a splenectomy the lungs take on the role of filtering the blood. And after thinking about it and with this new information. I would prefer that splenectomy be my last resort. I have a family history of bad lungs and I don't have great lungs either. I tried. Maybe if things don't work out with other treatments, that'll give the indium test enough time to come to America

Thanks for letting us know about the Indium. I didn't think it was being done in the U.S., but thought maybe there was something that we didn't know. I don't know if it will ever be done here. It's not a reliable test and the cost may not be worth the effort.

We are aware of the possible lung issues after splenectomy and have been saying it for some time. Pulmonary hypertension is the term. There can also be other vascular issues that are explained in this article.

Splenectomy appears to be a risk factor for the development of pulmonary hypertension. This is perhaps the most intriguing and frequently reported vascular complication of splenectomy. The classification of pulmonary hypertension has undergone many changes in the past decade and most recently includes a subcategory of PAH in patients with hemoglobinopathies and/or splenectomy.

bloodjournal.hematologylibrary.org/content/114/14/2861.full

Personally I wouldn't have spent my $ on the test anyway - someone here [where I live] went to London and had it done and found out it was her spleen so did have a splenectomy after coming back here and it wasn't long until her count was very low again. I know I'll get flak for saying this but I don't believe the test is a good indicator.

Thanks for telling us what your hematologist told you. Take care!

It's been a long time since I posted, and I have had the Indium test in the interim, so here's an update. Before I went to London for the test (December 5, 2013) I also researched the Indium test in the USA and found some folks who claimed to do it. Turns out Indium is merely the radioactive labeling chemical that is used; it can be used to label any cell in the blood that a doctor wants to monitor. So, while there are hospitals in the US that run "Indium scans," they are typically labeling white blood cells to locate possible sites of infection in the body of people with serious illnesses. Since it isn't approved for use on platelets in the US, no hospital that I know of offers to scan platelets with Indium.

As for why I chose to have the test, I am in my 60's and the probability of splenectomy working is in the 55-60% range. My counts had dropped into the teens in November, and I was paying $200 per pill for my initial prescription for Promacta under the old health care coverage (I have since signed up for "Obamacare" and my Promacta is now paid for, but that is a whole other discussion!!). Anyway, even on 50 K of Promacta, my count had dropped to 39K, so the likelihood of a possible splenectomy as a backup plan loomed large. However, to have the Indium scan, you need to have a minimum count of 40K, and more is better (after all they need to "see" the platelets they label, so the more the merrier). So we bumped my dosage to the max of 75mg, scheduled the test in London, and got it done before the numbers possibly dropped. The results of the scan confirmed that my spleen is the location of "sequestration" (or destruction). But, as everyone on this site knows,removal of the spleen is no guarantee that the ITP won't return through another mechanism in the body.

Bottom line: I'll keep my spleen as long as the Promacta works, but I'm glad to know that I have a backup plan if the drug fails and/or if I have some problematic side effects. And, just to emphasize, if you haven't applied for health care coverage under the Affordable Care Act, you really ought to do it right away, even if you think you can't afford it (there are significant subsidies, depending on your income level) you may be surprised by the low cost, and will definitely benefit from the coverage!!

Glad to hear you have a back up plan Luca we all need a rescue drug one we can go to in a emergency! and we should all have a plan for if all else fails. Planning for both options is a part of being a well informed patient!

Having a back up medication just in case is one of the reason I am against having my spleen removed. My rescue treatment right now is Rhogam and my provincial government states your not allowed to use it on splenectomized patients.

Am I the only one who visualizes Neil Diamond belting out the title of this thread?

"Indium Survival Test.....Coming to America!!!"


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♪♪ Not TODAY!♪♪ ♪

Thanks now I'm watching Neil Diamond on youtube!

Was watching Big Bang Theory and Neil Diamond's song Coming to America was playing. So now its stuck in my head

Amy and Howard on the scavenger hunt? Funny stuff!

I find it funny that Mayim Bialik is the only Big Bang cast member who actually IS a doctor.
She has a Phd in neuroscience. The 'Amy' character is also a neurobiologist, or neuroscientist.
Blossom you are all grown up!
And unlike Robert Young (Marcus Welby MD), Bialik can say, "I AM a doctor and I also play one on TV."



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