Accessory Spleens

Has anyone else been told they have accessory (extra) spleens? I was diagnosed in January with ITP with a platelet count of zero. I have since been on steroids, Nplate (on this again), Promacta, Rituxan and had a splenectomy (in July when count went back down to zero). I also had one treatment of chemo. My counts are either way high (when everything I'd been on seem to work all at the same time) or low (20s to 50s). I was pleased when my count (tested Tuesday) was actually in the normal range. I doubt that it will remain that high for much longer. My hematologist wants me to have a 2nd splenectomy to get rid of the accessory spleens and hoping that helps.

I forgot to include that I've had multiple rounds of IVIG and had platelet transfusions to no avail.

Chasty:

A few people over the years have had accessory spleens, or have even had splenic tissue grow back. Some people have gone on to have three splenectomy surgeries. From what I have seen, the surgeries rarely work, although it has, for a while, worked in one or two of the cases.

Do your counts usually go lower than the 20's?

Chasty, what kind of count is your doctor aiming for? Normal? That's not what most of us aim for! Sounds like an incredible number of treatments for someone who (1) has only been diagnosed for 10 months and (2) has lows of 20 to 50.

I'm in agreement with Karen here. What is the doctor trying to achieve?
Promacta and Nplate are designed to get a count 'around 50k', NOT to get it up to 'normal' (150k-400k).
Promacta keeps me between 40k and 50k usually...which is the 'normal' results for that treatment.
Personally, I'd slow down and settle in with a comfortable treatment before doing yet more unnecessary surgery.
But then, I find the 100-year-old practice of splenectomy to be borderline barbaric. Right up there with leeches.
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Being in the normal range on Nplate is too high. It clearly says so in all the literature.

20 to 50 is a great count for Nplate. What is your count with no treatment?

My count w/ no treatment is less than 5 usually.

My Hemo has found 5 extra spleens in me. I have had three surgeries to remove them. 3 of them were growing on my colon. I am going back in 2 weeks for another CT scan to see if anymore are growning. And the answe is NO, none of the splenectomies worked for me. I jsut finished my 3rd round of Rutaxin. Hope this helps.

Chasty, your count of 20 to 50 is good. I'd stick at that with Nplate or Promacta if I were you. Higher counts on those drugs make us prone to clotting.

At this point in time it appears that Nplate is working. We are having a hard time finding the right dose and timing for me. I know if I have another splenectomy surgery it won't be until next year. I just don't want to me on Nplate for the rest of my life.

Chasty - no one said N-Plate is for life. Some people have gone into remission during N-Plate use. Also, there could be a new treatment for ITP available in the next few years. No one knows what the future holds, so there is always hope.