Why some of itp patients need a chemo? And spleen removal.. why does it worth for you to remove a spleen? Or the platlets count still same..

[Manchopot]

I don't know .. im 19 years old next month and im slowly learn about what is actually itp is .. i suffered with this disease about 3 years ago.. and i had no idea.. before my platlets always low.. and it is stresssful the platlets no improvement 20k-50k.. last year on march is the most remarkable platlets counts for me.. it jumped to 150k.. then it turn back what my platlets.. was before.. should i go for splenectomy.. does it worth..

[DJ99]

Not sure if this will help but it’s my story. I had my spleen removed a month ago....was originally diagnosed with stage 4 CLL in October but also had symptoms that matched ITP. Spleen was massive and causing issues. Platelets was down to 30 and dropping fast. Was told by an oncologists and hematologist they needed to biopsy my spleen ( can only be done via removal) to confirm my diagnosis so that they could treat with the proper chemo combination. I wasn’t very comfortable with getting my spleen removed due to the increased long term risks but at some point you need to take a leap of faith and trust expert advice. To soon to know if it was the right decision but now my platelets are 500 and I do feel and look healthier. Rest of my blood work is still not all that good but that is not surprising since the splenectomy was not a treatment in my case.

[Northlea]

Hi Manchopot.

I was offered a splenectomy and said no to the doctor because if it does not work you will be in a worse position and suffer even more. Think very carefully, read about the splenectomy on google speak to other doctors THEN DECIDE. I have heard that there is a test to see if the spleen is blocking platelets but did not follow up on it as it apparently is not available where I live.

God bless

Northlea.

[RobertSp]

Hi,

I had a splenectomy in 1990 as treatment for ITP. I have not suffered as a result of the surgery. My platelet counts went up for several years then slowly slid down again. Living without a spleen does not seem to be a problem for me. I get some extra vaccinations for various viruses that the body might have trouble fighting off without a spleen. I have heard of a test to see if the spleen is the problem but that test is not available where I live. My doctor does not think the test works well. I live quite happily with a count of 20 to 30. I am told that my platelets are larger and more active than normal. I guess that means that each person has to be treated in a manner that is best for them. That means having a good doctor that you can trust and following his advice. Good wishes for your future.

[lillaa]

Hello!!! People remove their spleens because 60-70% of time it gets rid of ITP. People who get the splenectomy usually have counts under 10 and they want their life to be normal again (you can't even go to the dentist with that count). Chemo is there for people who didn't respond to any other treatment and their count is still dangerously low and they have bleeding symptoms. 20-50k is what I would call an intermediate ITP. My doctor wouldn't give me any medication for those counts unless I had to have a surgery or something else that required a higher number of platelets. I hope this helped, good luck!!

[rjsmyth]

At 19 yrs old only a butcher would give you a splenectomy. 150 is within the normal platelet count range. At your age ITP could still go into remission as fast as it arrived. Having a splenectomy may not make any difference anyway as you could grow a secondary spleen or your liver could just take over killing off your platelets. Plenty of people with ITP would love a count of 20-50 - unless you are and individual who has dramatic symptoms you can easily live your life with a count in that range.

Get better advice - read everything you can on the internet and arm yourself with this knowledge for when you next speak to your hematologist.

itpsupport.org.uk/index.php...

[cardcowsports]

I'm currently 34 and was diagnosed with ITP when I was 14. My platelets hover anywhere from 20,000 - 50,000. I never removed my spleen, nor will I ever unless it's absolutely necessary. My thought process has always been with science, technology, and medicine advancing a lot and quickly, it wouldn't surprise me if they found a treatment that cures or successfully treats chronic ITP in adults at a very high success rate. (There are many treatments outside of the splenectomy that do work for many people.) Usually splenectomy is a last resort for ITP if no other treatments are working and you have severe symptoms.

My advice would be since your so young, if your ITP really isn't causing you any problems outside of having low platelets, do not get your spleen out. Try other treatments that may boost your counts. I'm currently going down the homeopathic road and trying natural ways of boosting your platelet counts. Your spleen works to fight off many infections that you could run into worse problems if you remove it. It also isn't a 100% cure for ITP. Try and find another way to boost your counts before your even consider taking your spleen out, unless it's absolutely necessary because it's causing other problems.

[Manchopot in reply to cardcowsports]

Thank you..so much🙏🙏 for the explaination..

[cardcowsports in reply to Manchopot]

No problem. Try not to stress about your platelet counts. I live a very normal life with little to no symptoms. If you have little to no symptoms, do not stress. Get regular check ups and look for tell tale signs that your counts are low (red spots (petiechiae), bloody nose, red spots in mouth, blood in stools/urine, etc etc.). All things i'm sure you're aware of.

Live your life and don't stress. Just stay away from high contact sports and anything where you're at a higher risk for internal bleeding!

[Manchopot in reply to cardcowsports]

Yes so far, i spotted a petechiae.. on my left leg then it dissapeared.. but most all the time i play football and get bruised easily.. all the time if i get injured.. so most of the itp symptoms that i had is bruise.. i will try my best.. to be a positive i know im not alone thanks🤙🙏🙏