spleen removal versus treatment

I went to the Dr 2 weeks ago, I had been off the steroids for 3 weeks and my platelets had come up another 30000 to 202000. I went back today after having a few beers this weekend, and coloring my hair, and on my menstural cycle (sorry for the men out there but want to be specific) and my counts were at 63000.

Dr wants me to consider a splenectomy. He believes that my platelets will bottom out again to what they were when I started all of the which was 8000.

I was just diagnosed Jan 23, 2011 that is just 2 months. My platelets came up with steroids and came up even after I was off them as I mentioned above. I think it is too soon to talk about it. I think from what I have read here that you treat for a while am I right? I do not have any bleeding, right now nor am I bruising. (I did at 8000 bruise and have blood blisters in my mouth)

Please give me insight, I know all about the fact that a splenectomy could not even fix the problem and shouldn't I treat for a while longer?
SHannon

Shannon:

There is no right or wrong answer and telling you that you should treat for a while is not our decision to make. However, most people do try treatments for a while before doing something so drastic and irreversible. There are some people, like me, who held off on splenectomy and were glad they did. It's been 13 years since I was diagnosed and I've been in remission for 6 or 7 years now. It was the right decision for me since I've developed other health issues that could be more difficult to manage without a spleen.

My thought has always been to hold off on splenectomy until you are at the end of your ITP rope. When you've had enough of the treatments and doctor visits and tests, then give it a try. Honestly though, after only two months, you are not even considered chronic yet and could still have acute ITP that may resolve. Splenectomy has been around for 50 years as a treatment and is becoming less popular as more treatments for ITP are being developed. You can always have that done at a later time, but you can never undo it once it's done.

Thank you Sandi, This was what I was thinking anyway. I guess I just needed someone else that has been where I am to tell me. My platelets did come up on their own 3 weeks after being off steroids so I would like to give them a chance. Plus I knew I had read that chronic was not until after 6 months. I have only been at 2 and have no bleeding. I have to say I was very discouraged today and the Dr said that he had been doing this for 25yrs and that a splenectomy was the best treatment. This is not true because 40% of all ones that have it still have ITP. I am praying for my platelets to increase on their own by next week.

I will keep you all updated in the mean time thank you all for being here. Because the last 2 months have been rough and a rollar coaster ride. This forum has really helped.

Shannon

My doctors also assumed I would have a spenectomy right away. That is so shocking when I think about it. In your case, you lived your whole life with presumably ok platelet counts and now after two months your doctor thinks he can predict what your counts will do and so you should have this irreversible surgery with an iffy chance of success and possible serious repercussions.

Tell him you've been making platelets just fine for 25 years except for these two months and want to try some other options first! That's my opinion and I don't even play a doctor on tv.
Erica

When I hear a statement like that "he had been doing this for 25yrs and a splenectomy was the best treatment", it makes me wonder how many ITP patients he's treated in those 25 years. I wonder how many different treatments he's tried on his patients - a few or all of them? I wonder if he ever followed up on those patients to see if they had any complications due to the splenectomy. That is a very broad statement.

I'm sure there are many people who have it done and live perfectly normal lives. But I always wondered what would happen if I ever developed cancer and had to do chemo and became very immunosuppressed, how much more dangerous would that be without a spleen? I wondered what would happen if I developed another autoimmune disorder (which I did) and had to be on immunosuppressants without a spleen? I wondered what would happen if I ended up with APS antibodies (which I did) and had more of a clotting risk without a spleen? I tried to think about problems down the road instead of just dealing with ITP now and getting it over with. ITP wasn't my biggest fear...it was being left spleenless with a more difficult problem that scared me. Having ITP can get old pretty fast. It invades your life and sometimes takes over. But - only if you let it. Looking around at other people who deal with things that are much worse made me realize that ITP is not that bad, especially if counts go up with treatment. I'm amazed at people like Michael J. Fox who endure horrible disorders and still walk around smiling. It takes an awful lot to inspire me but he does. I've also been inspired by people like Steve (who you've probably not met yet). He has had ITP nearly his entire life and has had three brain bleeds, but he'll be the first to tell you to ITP isn't the worst thing that can happen. His counts do not respond to anything, including splenectomy. I've seen people with ITP and AIHA, people with TTP and people with ITP and APS - those can be quite a balancing act and can make ITP seem like a walk in the park.

Sorry, I didn't intend to say all of that when I started this. It's just that I've had people spin my perspective on this in the past and it really helped. We used to post threads on the positive aspects of ITP and haven't done that in a while. So many people can come up with good stories...about special people they've met because of ITP, about how their attitude has changed because of ITP, etc. None of this has anything to do with your original question, but may help in the decision overall. If you do decide to do it, we'll all cheer you on and wish you the best. Everyone has to do what is best for them in the long run, whatever that may be. Your best bet for now is to ask questions, research and take one day at a time.

Shannon

my dr is also pushing spleen removal even though i dont think he can as my count is 5 ?? and like you i was diagnosed in jan (26th )2011 ,there is no way im giving up my spleen without trying everything available first and also giving myself the chance of self recovery we all pray for . Have you only been given steriods ? there are loads more treatments for you and you seem to have had a good response to steriods and 63 is still a safe number .Dont be pushed into anything always do what you feel is best.

jpb, don't forget that the Indium Platelet Study is available to us in the UK, which shows where the platelets are being killed off, either in the spleen, the liver or a bit of both. Knowing that will change the percentage chance of splenectomy success. Many haematologists don't offer it but some on the UK ITP forum have asked their doctors for it and got it.

It seems to be my role in life to bring this test to the notice of ITP patients in the UK. I'll get off my soap box now!

It seems as if ITP has been getting more attention and research lately, and new and better treatments are evolving.

Personally, I think it's better to try all other treatments first before ripping out a body part. After all, it's not your poor spleen's fault that your immune system is rebelling against your platelets!

Plus, there has been evidence that the spleen may be more important in the prevention of disease than previously thought.

Good luck!

My hematologist mentions it, but only as a passing reference as to say it is one of the options, he even says that would be a last resort and he knows my position on it and that i am not supportive of that idea. I seem to get everything when it comes to colds etc and if i didn't have a spleen, i could be so much worse off. It is a risky thing as it is not something you can reverse later on, any other treatments if its not working or your getting too many bad side effects, you can stop the treatment, but you can't just put a spleen back. Thats the way i look at it anyway.

Ann,

do or did you work with low counts? and if so what do you do and what did your employer and doctor say about it ? i want to go back to work and not knowing anything about itp especially in first 4 weeks i done what i was told however now i feel a little more confident and want to go back but my doctors are still advising me not to and with my work requesting a medical report i fear they will side with docs and not let me back . sorry everyone if this is in the wrong topic but i dont know how to just send it to just Ann

jpb, I did work with low counts. I have had counts below 10 many times and never took any time off work. I worked at a uni running the exams so part office based and part running about all over the place, and lugging papers and boxes around too. (I don't work there now as I moved from the area.)

My haematologist never thought to stop me working. It wasn't an issue. Work just accepted what the doctor said. They never did understand what ITP was about and wouldn't have known to question the doctor anyway. If your haematologist isn't familiar with ITP and panics a bit then maybe you should get a second opinion.