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who has had there spleen removed? 3 years 9 months ago #63233

  • Sara28
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iv have been researching on the spleen as my doctor is wanting me to have the surgery to remove mine. I can not however find much on if it is helpful or not for itp patients on getting it removed. they have me on nplate right now trying to get my platelets up for surgery, because my platelets have stayed at 2k and 4k for almost 3 months now. iv been on dex 40mg for 3 months and 4 rounds of retuxmab and so far nothing has worked. So my doctor really wants me to have the splenectomy but im on the fence with it and scared all at the same time. so plz help any of u that have had a splenectomy and if it has or hasn't worked for you, i really want to get as most info on this surgery before i make my final decision. thanks!!!

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who has had there spleen removed? 3 years 9 months ago #63234

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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You've had ITP for 3 months. A very drastic measure and extremely old fashioned idea to offer this early on. Don't do it. Plenty more treatment options available to you and still time for Rituximab to work.

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who has had there spleen removed? 3 years 9 months ago #63235

  • momto3boys
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iv have been researching on the spleen as my doctor is wanting me to have the surgery to remove mine. I can not however find much on if it is helpful or not for itp patients on getting it removed. they have me on nplate right now trying to get my platelets up for surgery, because my platelets have stayed at 2k and 4k for almost 3 months now. iv been on dex 40mg for 3 months and 4 rounds of retuxmab and so far nothing has worked. So my doctor really wants me to have the splenectomy but im on the fence with it and scared all at the same time. so plz help any of u that have had a splenectomy and if it has or hasn't worked for you, i really want to get as most info on this surgery before i make my final decision. thanks!!!


It sounds like you have a doctor who is not up to date on modern treatment of ITP. If it were my doctor, I would switch.

Regarding splenectomy, I had one and it didn't work for me. My splenectomy was done more than thirty years ago and I am still dealing with
low counts and having to treat my ITP. One of the problems with having a splenectomy is the difficulties that can arise with clotting abnormalities
and infections as you get older. Hematologists who are eager to perform surgeries often don't tell you about all of the downside and it
is something that you will have to manage for your entire life. I wish I could go back and not have the surgery done, but I was a child at the
time and there weren't as many treatments back then.

NPlate is a good treatment to try, but it's not just "to get platelets up for surgery." In fact, for many people NPlate can take some time to work (sometimes more than a month) and start to raise counts. It is not a "quick fix" treatment. I currently use Promacta (it works in a similar method to NPlate, but is a daily pill instead of a weekly shot) and it manages to keep my counts between 30k - 40k, which is a safe enough range for daily living.

Do you have lots of symptoms and bleeding problems with your counts at 2k? If you don't, I would be even more likely to tell the doctors to wait and give the Rituxan time to work. So many doctors are in a big hurry and act like things are urgent, when some patients can hold at low counts without symptoms and this can give you some time to make better decisions than if you are rushing and going through treatments too quickly. Promacta didn't work for me until almost two months after I started treatment and I had to increase the dosage once to get my initial response. If I had just tried it for two or three weeks and then given up, I wouldn't have known that it actually did work for me. Be careful in giving up on treatments before they have a chance to work.

Your instincts to keep your spleen are good, and be sure to do lots of reading and educate yourself about your options. I hope you live somewhere with other hematologist options. You need to find one who is familiar with modern treatments.

People here are very helpful so feel free to ask more questions as you are learning.

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who has had there spleen removed? 3 years 9 months ago #63236

  • CindyL
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Hi Sara. I had my spleen out in 2006. I knew going in that it might not work but went ahead with it anyway. It didn't work. For the next five years, I was in the same boat I had been in when I decided to go for it. In 2011, I had Rituxan and have been in remission since. I waited 2 years before deciding to have the splenectomy.
Don't let the doctor push you into something you don't want. If you've only been diagnosed for 3 months, that is too soon for your doctor to push splenectomy on you. There is a better chance of it working the younger you are. I was in my 40's.
Good luck with your decision.

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who has had there spleen removed? 3 years 9 months ago #63237

  • packh1@yahoo.com
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I had my spleen removed and it worked for 6 months.I would caution you .My hematologist told me a splenectomy is rarely a treatment option these days.I went on Rituxin-it gave me 8 years.just started another round hoping I get at least 8or more.
Good luck.
tricia50

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who has had there spleen removed? 3 years 9 months ago #63239

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hi Sara. I know the decision of whether or not to have a splenectomy can be a hard one. I struggled with ITP for eight years before I went into remission. The subject of splenectomy came up several times and I declined. I had a feeling that I might need that spleen one day and I was right.

My story is a little different. I ended up with Lupus and had to use several strong immunosuppressants in the last 12 years. I was glad that I still had my spleen because those immunosuppressants weakened my immune system and I was constantly sick. If I'd had the splenectomy, it could have been worse. I was trying to look at the big picture when I made that decision; I didn't want to possibly jeopardize the future in the hopes that I'd get a quick fix.

What I also didn't know was the link between thrombosis and splenectomy (that info wasn't available then), and I found out after my ITP remission that I had Antiphospholipid Antibodies which can cause blood clots. I would have had a higher risk if I'd had the splenectomy.

The thing is, if the splenectomy doesn't work and a person has to keep treating, the treatments in combination with being asplenic can raise the risk of infection and/or thrombosis. That is the part that scares me. Sometimes splenectomies work for a few weeks, months or years, but they can fail at any time even if initially successful. Sometimes it is a viable option if all else fails but it is not recommended until at least a year after ITP diagnosis and after all treatments have been tried.

www.bloodjournal.org/content/121/23/4782?sso-checked=true

www.bloodjournal.org/content/114/14/2861?sso-checked=true

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who has had there spleen removed? 3 years 9 months ago #63267

  • jayinchicago
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All the advice given here all are good and are well meaning-ed.
But you do see reverse survivor-ship bias here, many posters who are against splenectomy have gone through it and have not been cured.
If you read the forum history there are many people who did splenectomy and don't hang out here because their ITP has been cured.
Iam like you sitting on the fence, Iam on Nplate but want to be medication free.

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who has had there spleen removed? 3 years 9 months ago #63268

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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That is very true, Jay. However, the people who don't do it have researched and found good reasons not to. Sometimes you trade one problem for another. It's a benefit vs risk thing. For me, it was never worth the risk. Some people do just fine, others do not.

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who has had there spleen removed? 3 years 9 months ago #63275

  • mrsb04
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I agree with Sandi.
I think the risks of removing a perfectly health organ that is doing it's job outweighs the possible benefits.

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who has had there spleen removed? 3 years 8 months ago #63317

  • Sara28
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thank u so much for replying to my message...i need all the advice i can get...i am also on nplate, it is my second week on it but so far my platlets stay at 2k

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who has had there spleen removed? 3 years 8 months ago #63320

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Give it some more time, Sara. I don't know what dose you are on, but maybe it can be bumped up.

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who has had there spleen removed? 1 year 1 week ago #70485

  • Zach Tarver
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Hey Sara, did anything end up working for you? did you keep your spleen? I have been diagnosed with ITP a month ago, been running 0-2k for about two weeks. Finished 4 rounds of rituxan, prednisone didnt work, I started cyclosporine a week ago, and am also getting Nplate. The doctor suggested getting me vaccinated to get ready for a splenectomy in 3 weeks. Trying to figure out what I should do as well.

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who has had there spleen removed? 1 year 1 week ago #70489

  • jasondema
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Hello Sara,
I had my spleen removed in March 2019.
Backstory:
I was diagnosed in May 2017 after I got petechiae on lower legs during exercise. Platelet count was 16k.
Counts hit zero twice.
Treatments that worked sporadically:
Dexamethasone, Prednisone (doses ranged from 10mg to 20mg daily for 1.5 years and only got me to 25k average count throughout, NPlate at Level 10 since levels 1 through 9 did not work, and IVIG (initially gave me good counts).

Other treatments used: Promacta up to 100 mg did not work. Rituximab 4 weekly injections did not work.
Mycophenolate Mofetil did not work, Fostamatinib 75 and 100mg did not work.

Went to London and did Indium Scan in September 2018 to see where destruction was being done. It said predominantly in the spleen.

Did splenectomy in NYC...platelets initially rose to 200k post surgery and hit 600k during first post surgical hemo visit.
Platelets then crashed down to 30k but then rose back up to 70k over the next year.

My next appointment is on January 29th. I am in partial remission with platelets hovering on average around 70k give or take. I only bruise now if I decide to drink wine. I exercise everyday and lost all of the prednisone weight over the past 1.5 years. I was 175 at surgery due to prednisone weight and I am now at 155 after surgery. I am not on any medications since surgery and in March, I will make 2 years post surgery.

I am not sure I will be considered a success story because my platelets are not back at 150k as of this writing but what I can tell you is that I feel so much better not being on prednisone (other meds), weekly blood draws, or having to take an NPlate shot every week at the hemo office. It feels quite liberating to get a 2nd chance as a 43 year old male at normalcy and I truly cherish it. Fatigue, weight gain from prednisone, and frontal headaches were my big issue with ITP.

I knew the risks with having a spleen out but believe me, I tried everything and I mean everything. (Doptoplet was not available when I had surgery).

Thanks.

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who has had there spleen removed? 1 year 1 week ago #70494

  • mhprice2000@msn.com
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I agree--it's a tough choice.
My spleen was removed in June 2020 about 7 months after the initial onset of ITP. I developed ITP November 2019 three weeks after an MMR vaccine booster: I went to the ER with uncontrolled bleeding in my arms and legs; my platelet count was 3k. My hematologist tried the following:
Prednisone (60 mg daily, no response)
IVIG (multiple infusions throughout the next 6 months, but would only get my counts up to about 40k-50k for a week or two, and that was at the beginning)
Rituximab (4 infusions, no response)
Dexamethasone (4-day course, elevated my platelet count to 113k but only for a week, and I experienced extreme side effects coming off of it)
Promacta (no response)
Cyclosporine (no response)
Tavalisse (no response)
My count hit 0 on three occasions throughout the above treatments, and I had another uncontrolled bleeding event that sent me to the hospital again. At about 6 months in, I stopped responding even to IVIG, which had been the go-to last resort to keep my count out of single digits. At that point, my hematologist told me he was scheduling me for a splenectomy. I asked if it was elective, and he told me that, given my lack of response to any treatment, and with no stable count above 0, it was necessary.
I went into surgery to remove my spleen 4 weeks later with a count of 7k. My platelet count shot up to 146k two days after the surgery, then slowly declined over the next 8 weeks back to 9k. I was pretty depressed, because I felt like I had had my spleen removed for nothing. However, my hematologist then put me back on Promacta (75mg daily), I responded, and my counts finally rose and somewhat stabilized, with fluctuations between 100k-200k. I've been at those levels now for about 5 months.
So, for me, it was necessary and probably saved my life, and it was relatively soon (7 months) after the initial onset of ITP.
Although the splenectomy by itself didn't resolve my ITP, it did make me responsive to medication.

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who has had there spleen removed? 1 year 1 week ago #70502

  • midwest6708
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Zach, if you've had Rituxan, you should know that the vaccines won't do you any good. Ritux kills the cells that create antibodies. You'd be foolhardy to even say the word splenectomy any time soon. Shame on a doctor who doesn't know this.
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who has had there spleen removed? 1 year 1 week ago #70506

  • Zach Tarver
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The Doctor did explain the vaccines for the splenectomy would not be as effective, hoping to get out of these single digits soon.

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who has had there spleen removed? 1 year 1 week ago #70507

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 08
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I hope that for you, too.
Hang in there.
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