"Is splenectomy still a valid ITP treatment?"

Apparently some key ITP experts will be discussing this question in October in London (among many other ITP topics). I wonder if we could get a patient rep at this gathering to report on the presentations....

www.hartleytaylor-registration.co.uk/docs/ITP0prog.pdf

Ann?

Yes, I'm going! Patients are not allowed, so I am going as a medic albeit one that doesn't actually work with ITP patients!

Ann! That's great - you're so lucky! I can't wait to hear the news.

Thanks Ann! I can't wait to hear what the outcomes are.

Wow ann that's amazing. Would love to hear what the thoughts are! How are you sneaking in? Which medical profession are you in? I'm a speech & language therapist - not sure I can think of a good reason to get in lol!

Katsim I'm a Registered Nurse but working in MRI just now, so nothing at all relevant. I did ask them if it was okay only because it's being organised by my haematologist and I thought that it might not be so easy to melt into the background as the last time I went in 2008. Nobody knew me then. In truth anyone can go. Just send in a form with a cheque www.hartleytaylor-registration.co.uk/docs/ITP0reg.pdf . Easier than registering online because of the options the online form has you choose from! It would be good if you could go. I'd love to meet you there.

The whole splenectomy issue is a problem and I suspect that this is Dr Provan's and Prof Newland's first effort to get it off the treatment list for ITP in the UK. I talked with Dr Provan about it at my last appointment. Things need to change so that the TPO drugs are more freely available.

Ann wrote: The whole splenectomy issue is a problem and I suspect that this is Dr Provan's and Prof Newland's first effort to get it off the treatment list for ITP in the UK. I talked with Dr Provan about it at my last appointment. Things need to change so that the TPO drugs are more freely available.

That's one way to do it! You guys are bound by the NHS re: TPO's as much as we are bound by our insurance companies. I hope he manages to do it....changing the whole ITP frontier!

It's the European Medicines Agency who determine the authorisation for a medication who are the problem. Why the UK should go along with the rest of Europe I have no idea but annoyingly that's the way it is. Our own body NICE decided that with Nplate a splenectomy wasn't necessary but have now been told that they can't go further than the EMEA's edict so have recently altered their recommendation. The Agency took advice using the 2010 international guidelines where the UK participants were unfortunately overruled by other splenectomy-hungry haematologists and splenectomy was included as a second line treatment. Somehow that has to change. It will, eventually.

In the meantime UK patients will be forced, at great expense to the NHS to go for the indium scan and hope that it shows that splenectomy is contraindicated.

Regarding splenectomy in the UK (NHS Scotland) , is there any evidence that splenectomy Is contraindicated for the elderly as an ITP treatment ? At 75 I have refused a splenectomy but would like to get off the immunosuppressant drugs for obvious reasons and receive a TPO.
Derek

Derek, I know for a fact that the patient refusing doesn't count as a contraindication and they don't seem to care that the success rate falls rather sharply with increasing age. If you don't have another condition that you can call on, like heart disease of some sort or any sort of clotting issues then the best way to go is to have the indium scan and hope that it shows what you want it to show.

Thank you Ann that was much appreciated. As long as the high dose (2g per day ) is working I shall stay with it but insist on the indium scan before agreeing, or otherwise, to a splenectomy should that moment come.
Derek

In Germany it looks like the splenectomy can be refused by the treating doctors. In my case they considered the risk of the surgery being too high since my veins going into the spleen are so big.
Because of the diameter it would be difficult to close the veins once the spleen is out.

Fortunately my health insurance did not want that discussions and paid Nplate without hesitation. So not all health insurances here still want the splenectomy.

But that is a very recent development here. 4.5 years ago, when I was first diagnosed, there were no word of Nplate. Steroids and splenectomy, was all.

Fingers crossed the NHS is able to learn too.

Cheers
Joerg

It's the same in the UK, Joerg. They can't expect a patient to undergo a splenectomy if there's a contraindication. Luckily I have a good reason not to have one too so can get Nplate when necessary.

Slightly off topic, but I hope all will forgive me. I just wanted to say that a fb page for those of us without spleens found me yesterday. Have only met one person without a spleen in my life and having the chance to interact with others who live with this "condition" is a real benefit. Symptoms that I thought "were in my head", that others around me thought were just my hypochondria expressing itself are all things others without their spleen have experienced.

Valid or not, I have no spleen and enough platelets to allow me a normal life with small reservations and for that I am most grateful.

Just curious, what symptoms do you have from not having a spleen?

my experience....

diagnosed -1995

had numerous IVIG and WINRO treatments but only temporarily helped,


had my splenectomy in 2010, after my 1st brainbleed,(my mother had had complete success with her)

before-averaged 20-30k platelet counts ,
after was 200k BUT - 10 MONTHS LATER, they were back to 50-60k.
then had major brainbleed in Oct-2013 requiring brain surgery , and now since have
been holding steady between 100-200k.
so for me the jury is stll out as to the success

THANKS
STAYING POSITIVE
SUPERDAVE

Just copied the post on the spleenless fb page:

Greetings. So glad to find this group who will understand what I have gone through and continue to go through with being asplenic. I had mine removed in 1974 due to ITP. I have always had a lot of colds and strep throat even before the removal of the spleen. I find that I have a difficult time recovering from infections. I have all sorts of allergies/sensitivities, for example respiratory, Penicillin, ibuprophen, contact dermatitis from plants and also to food, also experience exhaustion and mental fog regularly. Recently been experiencing vertigo which the Doc says is from a virus and is something that is "going around." So far I have had two bouts which last nearly a month each, although not with the most severe symptoms, thank Heaven.
I can handle the physical stuff for the most part, but suffer from lack of understanding on the part of those around me. I can explain as much as i have the energy to do, but no one seems to believe or understand and just consider me to be a hypochondriac so I am very pleased to have found a group of people who get it.

www.facebook.com/groups/441535769237575/

As I am a glass half full kind of guy one of the advantages of having CVID is that a splenectomy will only ever be considered for me as a "holy **** we've tried everything else but nothing is working and we have no option"

There's always an option! But see..

"Outcomes of splenectomy in patients with common variable immunodeficiency (CVID): a survey of 45 patients."

Splenectomy proved to be an effective long-term treatment in 75% of CVID patients with autoimmune cytopenia, even in some cases when rituximab had failed. Splenectomy does not worsen mortality in CVID and adequate immunoglobulin replacement therapy appears to play a protective role in overwhelming post-splenectomy infections.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3719932/

But I would add that you can find articles saying the opposite. All we can do is find a doctor who shares our own wishes as far as treatment options goes.

I just ran across a study that used a math equation to predict splenectomy success for ITP.
Have any of you heard of it?
Do you think it's credible?

Successful splenectomy prediction score = 0.039 + {[Age (Years) × 0.047] – [Preoperative Platelet Count × 0.018]}.

archsurg.jamanetwork.com/article.aspx?articleid=396191#soa3082t3

I ran my numbers and came up with 40%.
Not that I'd do it anyway, but it would serve notice to my two MDs who think it's a peachy keen idea.

double post

Janet,

I don't think doctors would find this study persuasive. It's a small study, 10+ years old.

Remember, You don't need to convince your doctors splenectomy is or isn't an effective ITP treatment. You just have to convince them that you are not currently willing to consider it for yourself. They need to respect that.

Ahh, yes. Of course you're right.
It's my nature to try to justify my choices, even though rationally I know I don't have to. Childish, I know.

Not childish at all! Having proof would absolutely make the discussion easier if the doctor is resistant.

It's just important to remember who's the boss. It's the person who has to live year in and year out with the decision. In other words....NOT the doctor.

Ann wrote: Katsim I'm a Registered Nurse but working in MRI just now, so nothing at all relevant. I did ask them if it was okay only because it's being organised by my haematologist and I thought that it might not be so easy to melt into the background as the last time I went in 2008. Nobody knew me then. In truth anyone can go. Just send in a form with a cheque www.hartleytaylor-registration.co.uk/docs/ITP0reg.pdf . Easier than registering online because of the options the online form has you choose from! It would be good if you could go. I'd love to meet you there.

Slight anticlimax there Ann. I was imagining a James Bond style entrance with a false identity and a theme tune lol! I'd love to go but would have no childcare. My parents are on holiday that week and my husband doesn't work regular hours. Would be lovely to meet you too - maybe at another uk ITP event?

Aww I'm sorry to disappoint but it's not quite that simple Katsim. I'll have to field the colleague's 'chat' over coffee and lunch and that might be difficult. I shall try to stay unnoticed. Last time we all got a certificate to show the Continuing Study we'd done which counts towards what doctors have to do to keep up with things. I hope to get another to show that I know more than many haematologists!

All

This is now of interest to me, to cut my story short. Diagnosed 2012, no treatment low counts, monitored for 2 years and always low counts, but bouncing all over. All the usual diagnostics. Flare up in June this year, low counts, severe bruising,bleeding straight on pred high dose.

Responded well, all the usual awful side effects, tapper off successfully over 2 and a bit months. Great bloods, even had swollen lymph nodes that they wanted to potentially remove, but the drugs seem to have shrunk them to a small, now insignificant size.

To my surprise the Doctor told me if I relapse I will have my spleen removed!

I thought, that was an outdated approach and I have been on Steroids once, not sure I want my spleen out, but the Doctor said I am young enough?

This is the NHS in UK, can they refuse other options, or if they say take out the spleen is that it!

I hope my counts never drop, but it think I am mad, to believe the steroids have some how bucked up my system, so that it will never again attack itself?

I hear of all these treatments on this site, appreciate it might be my American cousins across the pond that have access, but do the Brits just get Pred then Spleen out?

Hi John, no patient has to undergo any treatment that they don't want to. If your doctor doesn't offer any other types of treatment then you could ask for another opinion or go back to your GP and ask to be referred elsewhere. Take a look at the list of ITP Centres of Excellence here and see if one is close to you.

itpsupport.org.uk/itpforum/centres.htm

Have you watched the talk given by a British Haematologist where he tells that he doesn't do splenectomies any more?

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Oh my goodness, John. Not true! Ann will be able to tell you more, but you do have other options. I actually think those in the UK have better ITP access than we do here in the states. You have access to the Indium Scan, the beliefs about treatments are better, and you have Dr. Provan.

Young enough to have your spleen out? Hmmm, how young do you have to be? Ridiculous comment, but I imagine he's referring to the fact that splenectomies are less successful over the age of 40. They can also be unsuccessful in those who are under 40.

Steroids can trick your immune system temporarily and for some lucky folks forever, but that's not always the case.

Ah - she already did!