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TOPIC: In the midst of treatment... I got questions! Splenectomy or not?

In the midst of treatment... I got questions! Splenectomy or not? 5 months 1 day ago #67362

  • davepallay
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Been having declining platelet counts since 2016 (50s to current mid 20s). Completed treatment of high-dose dexamethasone therapy which raised the number but then in crashed under 20. Just completed 4 sessions of Rituximab infusion and counts are still mid 20s. Doc now suggesting either splenectomy, Nplate injections, and Promacta. He seemed to be leaning toward splenectomy. I have read a number of negative testimonials about splenectomy on this site....he suggests that is because only those with bad experiences would be here and that there are plenty of people who successfully live without a spleen. To be honest...I believe this could be a fair comment. Are there those who are GLAD they got a splenectomy?
For the record, I'm a 60 year old man, I do not have ANY symptoms except fatigue (but then, I'm a 60 year old man!) and wouldn't know I had ITP unless I saw blood test results.
Currently I'm at 27, and doc is looking for a direction from me. Any thoughts?

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In the midst of treatment... I got questions! Splenectomy or not? 5 months 19 hours ago #67368

  • mrsb04
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  • Diagnosed in 2014. I'm a retired renal specialist nurse
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It can take up to 6 months to Rituxumab to work. You have not tried NPlate or Promacta yet plus there are other medical options to choose from.
A splenectomy is not your only option. It is not guaranteed to work and has several possible complications (see www.em-consulte.com/en/article/1076888 ).
I'm nearly 63 and have had ITP for 5 years. There is no way I am parting with my spleen. It is a perfectly healthy organ doing its job.

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In the midst of treatment... I got questions! Splenectomy or not? 5 months 3 hours ago #67382

  • Hal9000
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Dave, take a look at graph at time 41 minutes and 50 seconds at this link to the most recent PDSA conference.
www.facebook.com/plateletdisorder/videos/1298013283700025/

There are reasons why splenectomy popularity is losing favor. One reason is the drug: Promacta. Another reason is the drug: Nplate. These drugs are called TPO-R agonist on the graph.

New medical breakthroughs occur all the time. IMHO, it is reasonable to expect a possible resolution to ITP to occur in the not too distant future.
"Can CRISPR resolve many chronic diseases, like ITP ?"
pdsa.org/discussion-group/6-general-itp-discussion/30308-can-crispr-resolve-many-chronic-diseases-like-itp.html

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In the midst of treatment... I got questions! Splenectomy or not? 4 months 4 weeks ago #67392

  • midwest6708
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Dave, if your doctor doesn't know Rituxan should be given at least 12 weeks to work before trying something as drastic as surgery, you may want to get some other opinions on the matter. It's not time yet. Just so you know.

I'm 69 now; was 58 at diagnosis. In the first few years, I had no less than 8 doctors - one a university-based platelet disorder specialist and others of various unrelated specialities - pushing me to have my spleen removed so that I'd "be cured". I'm a bonafide surgi-phobe, so didn't want to do it for that reason mostly. But I've also done my homework about the procedure and discovered it's by no means a slam dunk cure, nor have the odds of success changed from time immemorial. Splenectomy works about 66% of the time, but only 40% or less in people over 60. It works most often for people under 40. Some years ago, I found an informal poll taken on a social media site by people who'd had one. I made my own chart of how many it worked for, how many it didn't. It came down to just about the same odds as professionals give. It only worked temporarily for several. Interestingly, many people for whom it failed didn't really regret their choice, but they tended to be younger, active people who didn't have time to waste being sick. Since their odds of success were higher, it probably wasn't a bad idea to try. I may have done it myself if I'd been at child-bearing age. Woulda-coulda, you know?
For less than a 40% success rate, the surgery itself is too risky for my taste. Clots, bleeding, infection, anesthesia problems... name it... and the complication rate is much higher for older people.
If you read the site's page on the pros (few) and cons (considerable) of the procedure, it may help you make up your mind. It did for me.
Here's the link ~ pdsa.org/splenectomy.html

For what it's worth, I've been on NPlate for about 3 years. No problems. I recommend you consider it or Promacta before parting with a healthy organ your body still needs for doing good things.
Good luck with whatever decision you make.

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In the midst of treatment... I got questions! Splenectomy or not? 4 months 4 weeks ago #67414

  • Hal9000
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Dave, probably a couple more things you should know.
First. There is a small percentage of (steroid responding) folks who end up going into remission via Promacta/Nplate alone. Note that it can take many months of treatment. The dose gets smaller and smaller to keep counts up until eventually none is needed.
Second. Although it isn't popular, another drug to consider to give your counts a little boost higher and away from danger would be Dapsone. Your doctor may not necessarily be familiar with treating someone with Dapsone.

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