Open Splenectomy with ITP

I am wondering if anyone has had an open splenectomy with low platelets, 12.
I have had many treatments, prednisone, IVIG, platelet transfusion, and nothing has helped. My GP first noticed that I had low platelets, 40, many years ago and started monitoring them. For a variety of reasons I never managed to see a hematologist until 2 years ago.
After some poking they noticed that I had a large spleen. So I had an ultrasound, and then MRI where they noticed a large tumor on it. I had bone marrow biopsy and more blood tests that all came back negative. Seems I have some sort of benign growth on it. Could this be the reason for such low platelets?
Conventional treatments would suggest that my spleen be removed as a treatment for ITP, especially because none of the "normal" treatments have had any effect.
I have resisted for a long time as I live a very normal life. I don't bleed, don't bruise easily, and am active, and young, at 36.
There are a few concerns as the days count down to surgery on July 20. One is the fact that I have to have a open splenectomy with such low platelets, 12, The other is life without a spleen after.
An open procedure is suggested as the tumour will go straight to pathology and needs to be in one piece. Something that is impossible for a normal splenectomy done as a laparoscopy.
Also a new drug has been approved here in Canada this year, Revolade™ (eltrombopag). I have been reading about some rather unsavory side effects. This is a concern as my Hematologist had suggested that should my platelets not rise to a comfortable level after the splenectomy, that I would take Revolade™ (eltrombopag).
So a few questions to anyone willing to respond.
Has anyone had an open procedure with such low platelets?
How long can I expect to be out of commission after the surgery?
Has anyone been taking Revolade™ (eltrombopag) and have had either none or some side effects?
If anyone has any other thoughts, being new to this forum I would be happy to read them.
Thank you for reading and for all those who have posted, thanks for sharing.
J

corkdork wrote: So a few questions to anyone willing to respond.
Has anyone had an open procedure with such low platelets?
How long can I expect to be out of commission after the surgery?
Has anyone been taking Revolade™ (eltrombopag) and have had either none or some side effects?

In the US Revolade is called Promacta. A lot of people take it, seems to work well for many (as a maintenance drug, not to induce a remission), so you might want to look for threads on Promacta.

I'm not going to comment on whether a splenectomy makes sense -- the tumor on your spleen is not something I am familiar with.

I had an open splenectomy with a count of 8. The surgery went fine. A couple of surgeons were squeamish about doing surgery at that count but I found a great trauma surgeon who said "no problem, I can do this" and he was right.

I was pretty sore for a couple of days, the two days just after the surgery were pretty uncomfortable, but after that got better quickly. It wasn't too bad after a few days, and as I recall I went for a bike ride 14 days after the surgery. They gave me platelets during the surgery and, as I recall, my count just after the surgery was around 60. If they do mid-line, like they did on me, you will end up with a scar that goes from just above your belly button to halfway up your chest. I was surprised that they didn't cut more over on the left side, but the surgeon said it was easier to cut in the middle and then they use compressed air to blow the left side of your body up while they cut out the spleen.

Good luck with your surgery.

I will be having an open splenectomy soon. The date has not yet been established as we are hoping the the current treatments of Rituxan will help get my count up to a more comfortable level (they were 9k Tuesday last week). We are hoping that my counts will be at least 20k. My surgeon has said that he could do the laproscopic way but he thinks (after examining me and my situation) that the open way is best.

If the rituxan works, you might have a remission lasting years - so why don't you wait to see if it works before having the surgery? Or is your spleen enlarged or abnormal in some way?
Erica

Chasty,
Defiantly wait to see if you respond to Rituxian. It can take several weeks after the last treatment before results can be seen. I assume you have had all 4 treatments? Or as Erica stated, if it is enlarged it will have to be removed.

I have 2 more Rituxan treatments before we decide when the surgery will be.

My understanding is it takes a while for Rituxan to kick in - that it might not kick in until sometime after that last infusion.

chasty wrote: I have 2 more Rituxan treatments before we decide when the surgery will be.

I would say you have two more treatments and several weeks before YOU make a decision.

Dean I clicked the Thank You tab - but I would have much rather there be an AMEN! tab to click on instead.

You gave a good reminder - it is "your" body and "you" really are the decision maker.

"Defiantly wait to see if you respond to Rituxian."

I don't know if that is a typo or not Dean....but I like it.
Sometimes we need to be 'defiant' with doctors who insist on the 100-year-old treatment of cutting out your trusty spleen. Yes, 'defiantly' wait to see the results of Rituxan first, before they break out the leeches.
Remember that the doctors don't have to live the rest of your life, you do.

Gort,
Thanks for the words of encouragement. I have been putting this off for well over a year now, but after lots of research about this condition and the fact that my spleen is not in tip top shape I am not comfortable with my decision.
That you had such a low count and found a surgeon to do it is also encouraging and leaves me with some comfort.
Also as an avid bike rider myself of the trails in and around Whistler and Vancouver, I am happy to hear that I may not be too long off my bike.
As for the Revolade, I have a feeling that I may be part of a study group as it has only been allowed in Canada, Jan of this year in fact and it is being payed for by the drug company. Not sure weather or not I should be told if I am part of any research group, as this thought has just occurred to me, so I will have to ask my Hemo next time I sit with her.
Thanks once again for taking the time and consideration to reply. Being new to ITP, it helps to know that there are other out there with similar stories and who can offer support. This is a great group and has lots of information. I am glad to have found it.
Best to you all.
J

I think your decision about splenectomy is a tad different from those of us with plain ol' ITP. Having a tumour on the spleen changes things a lot. There's not much research you can do about that as you won't really know what the tumour is until they look at it under the microscope.

You will know if you are doing a drug study as you have to fill in forms and sign this and that first. I also got travel expenses when I was on a study for Nplate. Long gone are the days when they did research on patients without their full consent. (Have just read a book about that.. chilling!)

Cork and Gort, I am surprised about the splenectomies with such low counts only because my surgeon said something about a big dose of steroids (not oral) being standard before such surgery--and the steroids presumably would raise the platelets. It has been eight years since my splenectomy (laproscopic), however, and I may have not remembered all the details.

Hi J, this week marks my two year anniversary of my open splenectomy, so it has been on my mind today and I can share my experience with you. I did not have as low a count as you at the time of my surgery though, I was on a high dose of steroids and my count was considered safe. But l also had an enlarged spleen and an accessory spleen, hence the open surgery. As far as the recovery, I wasn't really prepared for it. I went in expecting laparoscopy and woke up with an 8 " diagonal scar on my left side. I was in the hospital about 5 days and then was out of commission about two full months. I'm not going to lie, it was very hard for me. The pain meds made me so sick which was the hardest part really, just the constant nausea. I was also low in iron after surgery and had to have a couple iron infusions. You can't drive for a while and will have to be driven to many follow up appts with surgeon and hema. You just have to be patient during your recovery and expect for time to crawl by, sometimes you just take it hour by hour. Your age is with you though and it sounds like you are fit, I was about 10 yrs older than you, so your experience may be very different. (btw, I also had a brain hemorrhage one month prior to surgery, which accelerated my decision for the surgery) On a positive note, I had my platelet count checked today and my count was 132, so happy my results have been good since spleen out. In the last two years I haven't had any problems with illness, but I do get yearly flu shots, and have my count checked every 3 months. I wish you the best whatever your decision.

Karen:

Some people do not respond to anything and therefore, they are stuck with having a splenectomy with very low counts. It can be done; I've seen a handful of people do it successfully.