Splenectomy successes

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!

Had my splenectomy may 10th had ivig and methyl pred on may 7th and 8th and got my count to 90 for surgery count of 74 on may 11 th and count of 126 on may 15 th on may 19th had blood blisters and count of 8 back on pred 19th and 20th and today count of 1 and had Ivig and will be getting the same tomorrow the doctors say they still need to give splenectomy some time before starting the next treatment however things don't look good

So sorry to hear that JPB. That must be terribly discouraging. Can there be a delayed response from splenectomy? I don't know, but if not, You gave it a try and that takes courage. Its about all we can do it seems, just try everything on the list. Take care and have a speedy recovery

Thanks poseymint,and I don't know about a delayed response I think you usually get a quick response but the surgeon did say counts can bounce around before settling down but I'm not sure he meant bouncing around at 1 if not I think they will try rituximab I think it's the only drug left to try .

My first splenectomy was in 2000, as a last effort to get my platlets up. I was in remission for 4 years, they dropped when I had my daughter but went back up, then dropped again 7 months after I had my twins in 2010. I got an ultrasound and it revieled that I had an acessery spleen! My counts didn't come back up after steroids, ivig and Rutaxin (sp?). I just got my 2nd spleen removed 4 weeks ago, the surgeon found kidney shaped tissue on my colon and tested then... what do you know more spleens, so he had to remove 4 inchs of my colon to get rid of them all. As of right now my platlets counts are sky high. The highest I have ever had them (over 500k). I pray it works this time.

My son Mark was first diagnosed with ITP at the age of 16 months, we went through a few years of multiple IVIG, prednisone. IVIG was successful at first with temporary results. He then got to where his platlets would stay at 2 even with IVIG. Finally at 3 and a half the hematologist and myself made the decision to go ahead with spelenectomy. At that time nplate was just coming out but the doc felt that Mark would still need the splenectomy. Mark is 7 now and has not needed any additional treatment - his platlets hang out around 300-400. I think he has had some relapses, like right now I see alot of bruises on his legs. But none of the massive nose and mouth bleeds he was having. He has had a severe bout of post splenectomy sepsis 6 months after the operation which was terrifying. He has also had a few hospitalizations for IV antibotics due to fever and rule out sepsis.

I also work in the ER and ICU at a major research hospital so I know what the risks to splenectomy are. Its all about risk and what risk you are willing to take. I have also had two children die in our PICU due to head bleeds with low platlet counts/ITP and I've had more than one sickle cell die of sepsis (sickle cellers often have no functioning spleen or post splenectomy.

Overall it was the right decision to go ahead with the splenectomy.

I wanted to update everyone on my recent splenectomy. I had my surgery on 7/6, and as of 8/23 my counts are at 203K. So far so good. My doctor had told me that the first year will be very telling. She stated that usually if you make it a year that you have a good chance of long term remission. Keeping my fingers crossed. I will keep everyone posted.

Sandy

Great news, Sandy! I'm just curious as to what the doctors definition of "long term remission" is?

hello again,
I have to tell about the events after my last post. The N-plate did help and my platlets went up to normal levels. I got N-plate four times and now (2 months after the drop) the levels are OK with no additional therapy.

Hello Everyone, So I was searching for some answers to some new symptoms I've been having and thought I would pop in here and reply to this as well. I was diagnosed in 2004 with ITP (my platelett's dropped as low as 21k I think...it was a long time ago) and I started seeing a hematologist. I was put on prednisone (as much as 80mg a day) for a year. My count would be normal while on high doses but would drop back down when the doses were low. The side effects were really bothering me and my hema suggested a splenectomy and I went ahead with it a year later. (April 2005)

My platelette count has been fine ever since. I have them checked every 6 months to be sure and my count was 340k last week. The surgery went fine. Though when they got in there, my spleen apparently was quite a bit larger than expected, had two baby spleens, and it had it's very own blood supply which surprised the surgeon. All in all, it went very well.

I am going to make another post about my current question to see if I can get any help from the community with what is going on now. I used to come here years ago when I was having ITP issues and I found the community to be a big help.

I am sort of in Brittany's shoes, 26 and been diagnosed with ITP since Dec. 2006. I have been through every treatment, and currently recieving weekly NPlate injections as well as weekly blood draws. My counts are holding in the 30s. Been in NPlate for going on 2 years. The IVig worked wonderful for me, until I started getting horrible headaches and nausea two days after treatment. My hematolgist has been pushing the spleenectomy for a few years now and I haven't been ready to take that step. I am constantly fatigued, and having three kids 6 and under plus a full time job I am always worn out! I am just about willing to risk that my spleenectomy will be a success to relieve some of my issues. Weekly injections and blood draws are not what I want to be doing for the rest of my life. I don't know what else to do...

Jenna