Splenectomy

Hi guys. I'm Jethro. Was diagnosed almost two years ago now and my ITP has got worse since I've been on Prednisone. I've had two IvIg fusions now and am up for a splenectomy.

My hematologist told me there is a 50% chance the surgery works. The doctor said 60% chance and the surgeon told me there's an 80% chance of living a normal life with no ITP.

I don't know who to believe because I read so many stories of people who have major platelet drops after spleen removal and then you can't get your spleen back.

I just wondered if there was anyone here who could share their own thoughts. It's just that I'm not sure I'd be better without a spleen anyway since it is a pretty important organ, despite what my surgeon has to say.

Cheers

Jethro:dry:

Last June I was diagnosed and ten months later I had my spleen taken out. It didn't seem to help me much since my platelets dropped two weeks after getting tapered off prednisone. The spleen helps fight infections and such, so if you do decide to get it removed you'll just have to be careful about germs and getting sick, but think, if it does work there is a possibility of living the rest of your life in remission.

Hello Jethro!

First off, the surgeons job is to remove the spleen. Do you think he takes the time to do long-term follow up on each patient? All he sees is what happens right after the surgery. A good bit of the time, counts are up then either because of pre-surgery treatments or because the counts respond immediately to the surgery. Wouldn't use his percentages. After your splenectomy, he went on to remove someones tonsils.

As for other statistics, we've had some recent discussions here that none of us have ever seen any percentages that include long term remission rates. This is all I have been able to find:

"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

It is a pretty important organ and there are reasons to keep it other than risk of infections.

I had my spleen removed in Janurary, 2010. For a year, my counts were well in the normal range. Now, they're dropping (presently 106). I work in a mental health center where I'm exposed to everything you can imagine. My hemo made sure I had several immunizations before my spleen was removed. I've had a couple of stomach viruses and a cold, but there has never been a problem due to not having a spleen. The decision to remove your spleen has to come from you and no one else. If I had it all to do over again, I would still have it removed. (Anything to stay off steroids..) I don't know what's ahead but I trust my Hemo doctor completely. I had a liver and spleen tissue CAT scan last week to see if there was possibly an accessory spleen, but there was none. ITP is mean little sucker that's always in the background... I've considered all the herbs, accupuncture, everything, but I have to go with trusting my doctor. If they keep dropping, I'll be asking for lots of advice regarding different treatments. For now, I'm on hold.

Have you tried treatments other than steroids and IVIG? Most of us prefer(ed) to try more other treatments before considering splenectomy. Keep in mind that splenectomy is a treatment, not a cure. Even if it works (meaning it raises your counts), for many ITP comes back.

What are your counts?

If you look at the statistics that Sandi quoted, the results of a splenectomy are pretty dismal. Since 98 patients were included in the study, which is really close to 100, we can consider the numbers used as percentages. So 23% had no improvement with their counts after losing their spleen. If you add up the people who relapsed within the first year with the no response group, then 83% of the patients had no response or relapsed within a year. Pretty bad statistics. Only 15% of the patients had a remission longer than one year. Only 5% lasted 5 years or longer. Doesn't sound worth taken out a vital organ to me.

I would certainly not call the results 'dismal'. About 2/3 of splenectomy patients get a long (many year) response, including about 1/2 who get a 10-year typical response. I have posted my own analyses of the risks & benefits:

www.pdsa.org/forum/16-general-discussion-for-teens/9886-splenectomy-on-thursday.html#9994

www.pdsa.org/forum/7-treatment-general/13127-splenectomy.html#13186

www.pdsa.org/forum/6-general-itp-discussion/14074-splenectomy.html#14089

I consider mine a great success. It got me (so far) 4+ years of not fiddling with all the medications. Of course, your mileage may vary. If you are one of the roughly 1/3 who don't respond, you will feel cheated. I thought that odds better than a coin toss for a long remission were really very nice.

I hope you do well whatever choice you make.

Marcus

The problem is that every article you can find quotes success rates, but they don't say for how long. To me, that is the most important part. If they are measuring success after a week, that shouldn't be considered 'success'.

Oh Jethro you live in a great place, some day I would love to visit there!

When my hematologist, back in 1989, couldn't tell me a splenectomy would cure me I decided against it - but that is me [also I'm not big on being put under ].

The surgeon told you ".....living a normal life with no ITP." I'm one of those who was told there is no cure for ITP - remission yes, but no cure. So to me even with a splenectomy one still has ITP. Also there are various places in the body that clean the blood so those places can take over once the spleen is gone.

There is this "chance" and that % - this % and that "chance". No one knows where they will fall in the "chance" and % columns. So what it boils down to is a person has to weigh the pros and cons and then do what they feel is best for them, period.

You have to do what is right for you.

Good luck with your decision!

I was diagnosed in March 2007 and just had a splenectomy in June 2011. So far, so good--counts have been between 60k-100k which means I haven't had to have any weird, possibly harmful drugs injected/infused into me since Memorial Day. The surgery was easy (reaction to pain drugs was the worst of it) and if the splenectomy keeps me above 40k for the rest of my life, I will consider it a complete success. A lifetime of doctor appointment, Nplate and IVIG is worst than the (very small risk) of OPSI and infection. I am a healthy person other than ITP. I was reluctant to have the splenectomy, but I am very glad I did. Good luck in your decision!

Just out of interest.. what's Memorial Day. And what does OPSI Mean?

I can only give my personal experience but here it is. I tried steroids, ivig, and rituxan before my splenectomy, with varying degrees of success. I didn't like my other options so decided to go with a splenectomy in December of 2010. I've had counts over 300k ever since. Even if I have a relapse I think it was worth it. I've had very few side effects from the splenectomy and it has allowed me to live normally again! I'm once again rock climbing, bike riding, etc without the thought if tip and bruising. I am fairly young (27) and have heard that it is more effective on those under 40 so that may have played into my remission. I am glad that I waited as long as I did( 3years) but also glad that I decided to go ahead with the surgery. It's all about informed decisions.

Ann:

Memorial Day is at the end of May and it's an American celebration/memorium for those who have served and died in the wars.

OPSI = Overwhelming Post Splenectomy Infection.

Being younger, your odds might be better for a remission with a splenectomy. But I still view see the odds as all that great for what it entails. I've yet to see conclusive evidence of the success rates many surgeons claim...especially for folks my age. I think Sandi said all of that though.
Note: For the handful of people I have read of who experienced splenectomy success, I am very happy. I truly hope your success continues.

There are many treatment options out there these days. Splenectomy was the cutting-edge ITP treatment 98 years ago, but a few tools have been added to the kit since then. I think they were still using leeches to bleed people when the splenectomy for ITP was hot news in 1913.
But seriously, I live a 'normal life' with ITP...I just have to take a couple of Promacta pills every day is all. I also live a 'normal life' with high blood pressure, I just have to take a couple pills every day for that as well. Thanks to the Promacta treatment, I actually see my hematologist less often than my GP now. I'm down to twice a year now for my Hemo. Yes, unless I notice bruising or such, I only need to have my counts checked every 6 months now. The scars on my arms are thankful.

While it is true that I don't sky-dive or surf any longer, that is not because of ITP.
BTW: I learned to surf in NZ when I lived there many years ago. You live in one of my favorite countries.

Jack - you're not so weird, ya know. I might replace that word with 'wise'.

Statistics are used to prove what ever one wants to prove so I never really follow them....

However, I had my spleen removed in 1994 and immediately they raised my count from 0-1 to normal numbers. 18 month later they crashed again. They discovered spleen had grown back. Removed the residue and counts went back up again.

Every so often I do get platlet drops and in the last 17 odd years this year has been the hardest of all on the ITP front.

Some years a go I contracted meningitis and then later septicemia. What ever you do, make sure you are properly educated.

ITP is a doddle, a walk over for me any way but since having septicemia I would ten times rather have ITP than Septicemia again. I have to two 5 year breaks of ITP through out the time but as I say one of those when I was at my extreme illest and don't want to repeat that experience if I can help. Some of it was partly due to lack of proper education on my part. I didn't know I had to say to the GP every single time that I don't have a spleen. I now know :sick: And I am back at the practice where I grew up per se and whilst they are extremely busy for a small town in England, they do well on patient car in my experience.

Other than the two major illnesses I haven't experienced any other issue. I been told not to catch malaria and don't know if that is still the advice but fine by me.

We all respond differently but the main thing is that you must visit a doc if you have a temperature so that they can give antibiotic. Even if its a cold. It don't cure the cold but it stops it going into the blood stream.

I am English so I can't answer any insurance etc questions. I can only say my own experience which is positive in that I don't have persistent ITP and am sooo glad because I be really tired I discovered after this year.

You may pick up more infections the first two years after the op and this may steady up for you. Not at all sure the relevence of age.... but as I was 25 when I had mine removed and now 43. For some it may make a difference but not sure about that one.

I do have platelet drops periodically though like I say, well, I might not be still here per se if hadn't had it removed as my spleen was so over grown too.

Any further questions then please ask because I may have forgotten something but I have had my spleen removed since 1994 and still have periodic platelet drops. (And am English so probably wouldn't enter the american stats....)

Like Jack, I think I live a normal life WITH ITP. My splenectomy (in 2004) "worked" for a few months. My surgeon and my hematologist were both optimistic that it would put me into remission, but even they didn't give me statistics as high as your surgeon's. I was sorry I didn't try a few other treatments before the splenectomy--like WinRho.

Thanks so much for that! I also marvel at how old these treatments are. you learned to surf in NZ? Piha by any chance?

Hi guys

I just wanted to thank everyone for the overwhelming response. I have never felt so alone with something so to log on and find all this information and people with really good advice is such a blessing. and very much appreciated

I was in hospital on the IvIg and back on the Pred after my count dropped under 10K so they were just referring me for the surgery as a possible emergency.

It just seems like every time I drop off 10mg of Pred the platelets just hit rock bottom over night.

The statistics aren't that good really but it's nice to hear some positive things about the splenectomy too because at this point I've decided if I absolutely have no choice then I will have to have it taken out. I can't live on the steroids like this.

I'm also busy trying a whole detox and natural supplement diet approach but not without steroids. It's too scary!

I will say that the more I learn about this thing the more scary it becomes that it is something that you just live with now for the rest of you life in some way or form.

The IvIg worked for a couple of days but had some nose bleeds again this morning. I'll keep posted on the splenectomy. At this point due to my poor response to steroids and IvIg I think I'm running out of choices.

Again, thank you all so much.

Hi Gort

Yeh, I'm on a whole barrage of natural suppliments at the moment. It seems like if you have the spleen removed or not the count may stay the same so I'm just trying EVERYTHING i can (within reason) My counts were under 10K so the doc was stressing a bit

Hmm - I think you will find that for most people on here anyway, their count goes up so the immediate short term life is good. It may be that you experience periodic drops rather than a permament drop as of my expierience of a spleenless life. That is better than where you are now by the sounds of it. But the choice is yours. I didn't have a choice but I wouldn't have done it any other way as it happens.

Jethro:

ITP is not necessarily a lifetime gig. Many people achieve good, long remissions. It just takes time to find what works for you.

The intention of this Forum is to help you feel better about ITP, not make you more scared. Is there anything we can do to help with that?

Hi Sandi

Yeh, I've heard of some cases where it disappears completely without treatment. I guess I'm just more scared now since it seems like it's getting worse.

I feel a lot better having read this blog though and it has helped heaps knowing you guys are here as it is.

Reading all the posts just made me realise I wasn't alone and reading other people's experiences, some of which are just the same.

Thank you again

Hi Rhiannon

I think you made a good point though in that periodic drops would be better than where I am now. I'm giving it till November and then I speak to the surgeon. It gives me some time to try the natural remedy and see how things go. My biggest fear is just having a bleed. So far though I drop under 10K with hardly any signs other than a little nose bleed I thought of just sticking it out but the exhaustion makes it impossible to do anything I guess

Yours and the everyone else's posts here on this site have helped immensely in making this decision easier. thank you

It's true what you say about the stats on the surgery. My surgeon only quoted the stats on immediate response. I'm not sure he would even be referring to a "full recovery" or one on steroids.

Is it just me or does it seem impossible to come off Prednisone without feeling like death?

Hi Jethro, been following your story, such a big decision isn't it just think about what is right for you, ask lots of questions of the people in the group.

I don't think it is possible to come off pred without feeling like a truck just run over the top of you and then reversed just to make sure he didn't miss you. You will get there, and you will be ok.
I have a quick question for you though what else have you tried apart from prednisone and Ivig.
I hope to cross the Tasman and visit New Zealand one day, I am from Oz.

at this point in my treatment, my doctors have said a Splenectomy is too low on reward, and too high in risk factors for me... (we all have differing experiences, and or results)

Jethro:

People can have good, long remissions with treatment also. It took me about 8 years to get a long remission, but I have had a good count for about 7 years now. It took two rounds of Rituxan for that to happen.

Sandi:
I wanted to ask about Rituxan because I've also asked the hematologist about low dosage Naltrexone. They always say the immune suppressor drugs are post surgery options but yeh, I always wondered why they were so bad. So awesome that you are now 7 years on a good count!

Here's a link to the low dose Naltrexone:
www.lowdosenaltrexone.org/

Milly: your comment about pred made me laugh. Its difficult explaining to people around you why you end up so grumpy haha. You're in Oz! Geographically, you're the closest person I know now with ITP!

I have been on Pred since January and wasn't given the proper dose so I ended up going on and off and up and down dosages all throughout the year.

The pred failed as soon as I weaned off so they had to IvIg me and that failed to produce desired results so they referred immediately for the surgery.

After the second round of IvIg and Pred together the platelets went of to almost 100K

Now I've decided to try and natural detox and supplement diet under the supervision of a proper natural medicine practitioner. Cutting out allergens like wheat and gluten and heaps of other stuff. Even with the Pred weaning I'm feeling WAY better and since Saturday my nose bleeds have gone away almost completely.

I was expecting the platelet drop when coming of Pred so I've self medicated myself this time in 5mg increments rather than the prescribed drop from 60 to 40. I'm not a doctor but I just feel like the weaning off pred was causing more shock to my system and as a result the platelets were plunging. (plus feeling like death) I'm in email contact with the hematologist and the natural therapist and going for CBC tomorrow to make sure I'm still OK but so far no other signs other than nose bleeds.

The only thing that makes me nervous is my platelets can drop to 9K before I show any symptoms. I always wonder how low can then drop and can you have none?

Grumble:
Are you too high risk to undergo surgery? It is weird how each person has this unique ITP profile.

I will say that stress has been one of the most significant triggers in this whole thing. Here's to less stress and more peace and love all round!

Jethro:

I've read about Naltrexone before and actually even considered it for Lupus. My Rheumatologist wasn't too happy about the suggestion. If you can get a doctor to prescribe it - good luck! I don't think they consider it a viable option; no one here has ever reported trying it.

Yes, getting off of Prednisone can make you feel like death. Been there! I'm actually still there, I've been on Prednisone for 7 years and can't get off, but I think it's Lupus-related.

You won't try Rituxan before splenectomy?