Study results - good news?

Please let me know what you think about this. I'd really like to know.



Background. The treatment of choice in steroid-resistant immune thrombocytopenia is still controversial, due to the recent advent of new drugs (anti-CD20 antibodies and thrombopoietin mimetics) which have encouraged a generalized tendency to delay splenectomy. Consequently, the importance to define the efficacy and safety of splenectomy in the long-term is substantial. Patients and Methods. We retrospectively analyzed the data of 233 patients affected by immune thrombocytopenia, who underwent splenectomy between 1959 and 2001, in 6 European hematological Institutions and have now a minimum follow-up of 10 years from surgery. Results. Of the 233 patients, 180 (77%) achieved a complete response and 26 (11%) a response. Sixty-eight out of 206 (33%) responsive patients relapsed, mostly (75%) within 4 years from first response. In 92 patients (39.5%), further treatment was required after splenectomy, which was effective in 76 cases (83%). In 138 patients (59%) response was maintained, free of any treatment, at last contact. No significant association between baseline characteristics and likelihood of stable response was found. Overall, 73 (31%) and 58 (25%) patients experienced at least one infectious or hemorrhagic complication, which were fatal in 2 and 3 patients, respectively. A stable response to splenectomy was associated with a lower rate of infections (p=0.004) and hemorrhages (p<0.0001). Thrombosis developed in 18 patients (8%), fatal in 4. Conclusions. Splenectomy achieved a long-term stable responses in around 60% of cases. Complications mainly affected non-responding patients and were fatal in a minority of the cases.

www.ncbi.nlm.nih.gov/pubmed/23144195

As with all meds/operations its always good when the outcome is on the positive side. If only we had a crystal ball to ensure that! (If I had a big giraffe he'd have to take a real long bath) :laugh:

I have had three splenectomies and none of them worked for me...

I also had a splenectomy. My result was more favorable,however it seems relapse is almost inevitable. I find myself having tried most of 1st,2nd and 3rd line of treatments. Having said this I'm not going to second guess myself. I was proposed the splenectomy option in 1985 with almost the identical stats as the study given. Everyone on here is looking for insight and hope so hang in there. Your amongst friends.

I've been carrying this paper around in my stack for a week now. I'll let you know once I get to it....

My splenectomy in 1994 was successful. After extended prednisone use as first line treatment, the decision to go forward with surgery was fairly straightforward as there was no other realistic option at the time. This was what I was told and I went with the advise.

So spleen removal bought some much needed time, but the relapses did occur every 4 or 5 years or so. These relapses were brought on by a combination of things, for one stress, also allergies (sensitivities to chlorine, possibly food intolerances). I managed through most of the relapses with a short course of prednisone (with the big exception of last year).

So the moral of this story is that a splenectomy, if successful, will buy you time. If you don't deal with the underlying causes/triggers and manage your ITP, you will be back to square one before you know it. Third line treatments are inevitable if ITP symptoms keep reappearing.

At the 2011 PSDA Conference, I sat with some hematologists. I mentioned that I had had a splenectomy but yet had occasional relapses. One of the hemas responded in saying that he was under the impression that most who had splenectomies were "cured". It ain't so.

If I could have done in '94 what I did last year to get off prednisone, I believe I could have avoided the splenectomy. I believe it will be a long time before the medical community figures this out.

Thanks for posting the results.

cheers,

john

At the 2011 PSDA Conference, I sat with some hematologists. I mentioned that I had had a splenectomy but yet had occasional relapses. One of the hemas responded in saying that he was under the impression that most who had splenectomies were "cured". It ain't so.

Wow. That is the type of doctor who needs to attend those conferences to learn a thing or two. I wonder how many patients have been misled.

John, you wrote

"At the 2011 PSDA Conference, I sat with some hematologists. I mentioned that I had had a splenectomy but yet had occasional relapses. One of the hemas responded in saying that he was under the impression that most who had splenectomies were "cured". It ain't so."

It seems to me it is indeed so-

But according to the abstract Sandi posted,

"Splenectomy achieved a long-term stable responses in around 60% of cases".

I appreciate that the wording “in remission” makes more sense than “cured” but word “most” means more than 50%. So the Dr's statement wasn’t inaccurate.

Also, I’m happy that you identified the underlying cause of your ITP, but we need to acknowledge that for most (all) autoimmune syndromes this is very difficult, if not impossible.

Mark

Mark,

The hema spoke as if all those that had a successful splenectomy were in remission. Permanently. He was surprised to hear about my experience.

I think of my history with the splenectomy as follows. Although I had it done in '94, my 4 or 5 relapses were always fairly brief affairs. I would go to my family doctor, explain the situation and take a course of prednisone for several weeks. I'd never bother with a hematologist. This always got me out of the situation. So I can see why I would be off the "radar", and one would assume that I was one of those in long term remission.

That was until last year.

You would never have heard from me unless I had my episode last year. So I think most ITPers that have successful splenectomies wind up like me. The spleen removal works for the long term, but yet I can get into trouble now and then.

This of course is different from those in situations where nothing seems to work. Trying to figure your way out is a challenge and I have been there. Read Joan Young's book "Wish By Spirit". Many have been in that situation and I understand it well.

cheers,

john

Mark,
I think the key wiggle word is 'long-term' rather than 'cured'. What is the definition of long term? I'd be surprised if it is even as much as five years.
Erica

This study was on-going for 10 years, which is actually the longest follow-up I've ever seen. I hope they are still going with it. Why stop? But yeah, Erica, you're right about those words.

Here is another study that had long term follow-up. I think it's pretty dismal. They are talking about patients who were refractory only though.

"Among 98 RefITP patients, no response to splenectomy was noted in 23 patients. The remaining patients had relapses after splenectomy at less than 1 month (19 patients), 1 to 3 months (28 patients), 3 to 6 months (6 patients), 6 to 12 months (7 patients), 1 to 5 years (10 patients), 5 to 10 years (4 patients), and more than 10 years (1 patient)."

bloodjournal.hematologylibrary.org/content/104/4/956.full

You're right Sandi about the other article - it looks like 'long-term' is going to mean at least 10 years. I should have looked up the article first. That's reasonably long-term if you are at least middle-aged.
Erica

Sandi, I wasn't able to access the full text of the first article you referred to, but the Blood Journal article mentions age. Do you think this statement from the abstract of the first article refers to age? "No significant association between baseline characteristics and likelihood of stable response was found." I have been told quite a few times since my unsuccessful splenectomy (in 2004) that my age (63 at that time) worked against me.

Karen - I honestly don't know. I can't access the article either. I have no idea what they included in their 'baseline characteristics". I think I'd still go with the assumption that age is a factor until we hear differently.