Splenectomy successes

I would love to hear from people who have had success (or NOT had success) with their splenectomy. It just seems like I've heard a lot of people who have had a recurrence of ITP in the years after, and I've only heard of a few successes.

I'm sure this could also be because once it worked, they dropped off the boards. But if you are out there, I'd love to hear from you, for balance sake.

I just had my spleen removed 3 weeks ago. Pre-surgically my platelets were 3000, so they gave me 2 days of IVIG and then 4 units of platelets right before surgery. Platelets were 108,000 immediately after surgery, then dropped for 8 days after the surgery to 28,000. They appeared to stabilize at 28k in the hospital, and I was discharged.

A week later they were at 27k, and then 3 days after that they were at 7k, when I got sent back to the ER. I received IVIG post-splenectomy, and 2 days later my platelets were at 158,000. 2 days later (this Friday actually) they were at 17k. I'm currently sitting in an infusion center receiving my second dose of IVIG (I received it yesterday too).

This certainly isn't the success I was hoping for, but my spleen was only removed February 24th (approx 3 weeks and 2 days ago), so I'm trying to be hopeful that I may still get some kind of stability or remission in the next few weeks.

I've also had 4 doses of rotuximab, and am on nplate, and predisone. So far, nothing has worked, and my counts seems to just keep dropping to below 10k with no bottom in site...

Benji:

How long were you diagnosed before the splenectomy? Just curious as to how long it was and what the drs tried first.

My husband was diagnosed 28 yrs. ago and back then, the only treatment we were told about was prednisone. He took huge doses (100 mg a day) for at least 6 months, but the count dropped when he tapered off so he had his spleen removed. His count went up to about 300,000 immediately after the surgery and stayed up for quite a few years, but then started gradually drifting down. About 15 yrs. ago the count was below 100,000 and it continued downward. About 4 yrs ago he went below 20,000. Three yrs. ago he started Nplate and was stable until last week when the bottom fell out.

He has never had any ill effects from not having a spleen. He had the pneumococys and meningococys vacines as a precaution. (Those are probably spelled incorrectly)

Kittie,

It was two years after my diagnosis that I finally agreed to have my splenectomy. It worked for less than a month and I was back to the counts I had before. The only reason I agreed was because I wanted off the pred., which I didn't get off of until 2010. My counts fluctuated between the high twenties/low thirties. I finally did Rituxan in 2010 which got my counts to the normal range. My last count was yesterday and I'm sitting at 247.

KittieG

I was diagnosed around '02, and my numbers dropped far enough around '03 to require treatment. Prednisone got them up - but then I was prednisone dependent - my platelet values were around the same number as the dose (ie 20 mgs kept them around 20). I tried Rituxan as well as three immunosuppressants to get off prednisone, all to no avail. This past Autumn my numbers plummeted and bounced around zero to 6 for about 6 weeks. Neither high prednisone nor IVIG had any effect. After a series of increasing doses of Nplate, I responded to that and used the high platelet values for a safer splenectomy. Since the surgery (Nov 3) I've been around 300, no drugs except for the pred tapering, which was down to zero 9 days ago (finally!)...

Mark

Hello Cindy,

I am so happy to hear your count is nice and stable. Enjoy!

Thanks, Rita! How's Marty doing?

I had a splenectomy in December 2010. Prior to that I had tried many treatments for 3 years. My counts have held steady post-splenectomy at around 200k ever since. I'm aware that are lots of ppl that it didn't work for, and that I could still relapse but for me it was the right choice. You may not be hearing from a lot of ppl who achieved remission as lots of ppl tend to drop off the board afterwards. I only check occasionally now.

Kittie,

I was diagnosed with ITP in October 2010. My counts were 4K and I had a platelet transfusion, and then IvIg and steroids. IvIg was the only thing that kept my counts in the 70-100K range. But within a few days of completing an IvIg treatment, my numbers plummeted right back to the single digits and I would be back in the hospital. I made the decision to do the splenectomy in December 2010. Had some post recovery complications, mainly due to prednisone withdrawal. It also took me some time to catch myself both physically and mentally… but thankfully my counts are good 265k and I have had no illness due to the splenectomy.

For me this board provided great comfort and advice. I hope my post helps.

Barrelgal wrote

" You may not be hearing from a lot of ppl who achieved remission as lots of ppl tend to drop off the board afterwards. I only check occasionally now."

This is a very good point....

I had my splenectomy about two years after diagnosis--but before I joined these discussion groups. Had I known then what I have learned since, I probably would not have had the splenectomy--at least not so soon. I have responded (so far--for the past 11+ years) reliably to relatively small doses of prednisone. I chose to have the splenectomy because I feared the long-term side-effects of the prednisone. (Thus far, I've apparently not suffered those side-effects.)

My hema and surgeon were optimistic that I would be one of the lucky ones for whom the splenectomy "worked." It worked for just a few months. Then I was back on prednisone.

The splenectomy itself--laproscopic--was relatively easy surgery, quick to recover from. I've not noticed any problems because I have no spleen.

Thanks all who have responded so far - I hope this conversation continues and more people continue to give their stories. I agree that there is probably a drop-off rate for those who have had success.... Just makes sense.

Keep em coming!

Hi, My daughter was diagnosed in December, seems like forever ago. She is currently holding steady at 18, her doctor doesnt want to do anything until she drops below 10. And then she wants to do a splenectomy. I dont get why they arent trying something less invasive to start with? Anyone have some advice in this area?

I am no expert, but that seems ridiculous! There are other less invasive ways of putting someone into remission that may work for your daughter WAAAAAY before you should get to splenectomy. I'd ask for a second opinion if I were you.

Ali

Thank you! We really want a second opinion. The problem we run into there, is that we would have to leave the state to get a second opinion. Anywhere I go in Arkansas, They are going to send us to Arkansas Children's Hospital. We are not well off, or I would just go to a different state. But I just dont see myself being able to allow someone to cut my child open, when there are other options.

-Brit

Oh my! Your daughter is just 7. They so very rarely do splenectomies on children one has to wonder why they want to do it. Also 80% or more of children have acute ITP which clears on its own in the first year. They are so out of touch with modern thinking.

If you can't get a second opinion at another hospital, can you not at least see a different haematologist at the same hospital in order to get another perspective?

We are going to go ahead and try to see another Hemotologist, but my pediatrician doesnt think that it will help, because the other Hemotologist at ACH are going to just agree with what ours is currently telling us. But I figure it's worth a shot.

brit623 - I second Ann's opinion. Like she said, so many children have acute ITP that eventually goes away given enough time. Also it is my understanding from my hemo that the spleen is far more important in a child than an adult who has had time to develop a mature immune system. If it were my child I would be trying to do what I could to keep the counts up and just see if you can ride it out.

Hi I read your post questioning splenectomy... curious what you decided????

I am 25 years old and have tried steroids, IVIg, rituxan, and currently getting Nplate injections bi-weekly. Also like you nothing has lasted much longer than 1month.
My hemotologist is pushing for splenectomy. Im trying to make up my mind....

Brittany - depends who you are asking the question to!

I started this thread, so if it is me you are asking, the answer for now is no, I am not getting a splenectomy. But every case is different - even though my numbers are usually around or below 20k, I have no outward signs of bleeding, so I am in a "wait and see" sort of position. From what I've read, this is not really the norm, but it's what's working for me. No meds at all - for now.

My new hematologist said it best: "we can always remove your spleen later".

Kittie - what's not the norm?

I was in your position. Counts in the 20's for months and I didn't treat either. I had a few bruises here and there but nothing to get upset about.

That's also how I felt about splenectomy. It was always an option but I preferred to just keep it as one and never did get to it.

kittie & sandi

I guess "the norm" is getting your spleen removed in our situation. example: our platelets remained below 20s (with the exception of all the treatments we've tried but results dont even last a month) Sooo we've been dealing with the hassle of ITP for in my case 3years and are tired of treatments.
I have decided to go along with getting my spleen removed because for 3 years Ive been trying treatment and I cant imagine living the rest of my life going to the hemo every/or every other wednesday for Nplate injections for the rest of my life. Not to mention the fear I have if my husband looses our insurance nplate is $7,000 per shot.
So im at the point where I am ready to take the chance and hope splenectomy works. If it does I may never have to live this stressful life with ITP anymore.... so im hoping for the best and a future of NO more treatments!

Bittany - you have very valid reasons for your decision. I've always said that splenectomy has its place, mainly when the person gets to the point where they have had enough. It sounds like you've had more than enough. I hope it works for you!

Sandi - I meant that not treating at really low numbers was not the norm. It seems from the posts I've read that many people have some symptoms at those lower numbers and have to treat.

Brittany: If my numbers were low and I also had symptoms, and I HAD to treat all the time, I'd be sick of it as well. I was sick of it before this new hematologist said we could try "doing nothing" and I certainly entertained the idea of splenectomy.

Good luck with your decision - every case is different. I could be right at that point again in 6 months!

Sandi - I meant that not treating at really low numbers was not the norm. It seems from the posts I've read that many people have some symptoms at those lower numbers and have to treat.

Yup - you are right about that!

i have a date for splenectomy thursday 10th may , i hoped that nplate was the answer but its no longer working after 1 year this week i had no meds for the first time in 18 months and my counts are 0 im covered in petechia and mouth blisters and im pretty scared by this so i need to try splenectomy and pray for long lasting safe numbers

jpb, just wanted to wish you good luck with the splenectomy and I hope that the hospital treats you well! Ali

I had my spleen removed in december 2010, it was succesfull for 2 months, than the numbers dropped under 20000. I got IVG (Kiovik) and it helped me at that time. Everything was OK till this april, when the numbers dropped again, this time very low - to 4000. I was on eltrombopag for 3 weeks now (first week 50 mg and the second and third 75 mg) and nothing happened, today my counts were 5000. So today they decided to put me on N-plate and I really hope it will work. I also got Medrol (corticosteroids) - 32 mg as additional therapy. I have been in the hospital for 3 weeks now and my optimism is really starting to dissapear. well hopefully on monday counts will go up...

I am new to the PDSA website and just read your post re. being scheduled for a splenectomy. I am an 'old timer' who was diagnosed with ITP many years ago (back in early 1990). There was very little information available at that time...I was treated with Prednisone for about 9 months, then it started to lose its effectiveness and I underwent a splenectomy in October of that year. After all this time I am still fine and my platelet count has been in the normal range for many years apart from the time immediately following the surgery when of course, the count was very high for a while...but that was expected. So for me, it was the answer and I have had no problems whatsoever. I had a Pneumovax shot preceding the surgery and have had a follow up shot every 5 years since, also regular 'flu' shots every year...I guess I am one of the fortunate ones. I had no idea until I was diagnosed that day in January that there was anything seriously wrong with me, I was transfused with 24 units of platelets within 48 hours of being admitted to the hospital and understand that at that time my platelet count was the lowest ever recorded at that particular hospital! I do hope that your splenectomy surgery will bring about the successful results that mine did. 'Good luck' from a long time ITP and splenectomy survivor in Ontario, Canada!