TOPIC:

So, my hematologist has finally determined that after my 2nd set of rituxan treatments thay i need to have my spleen out. I meet with the surgeon tomorrow and have a list about a mile long of questions to ask him. Please help me. I am stressed beyond belief and my numbers are dropping about 60 platelets every 2 weeks...which it will bottom out soon at that rate.
Anyone have a great story of remission after giving up their spleen or questions i should add to my ever growing list of questions for the surgeon?

Mandy wrote So, my hematologist has finally determined that after my 2nd set of rituxan treatments that i need to have my spleen out.

Your haemo may have determined that but but realistically it is only a recommendation. Treatment of any condition is a 2 way process between a doctor who is up to date with latest guidelines and an informed patient with the patient making the ultimate decision. Patients should always ask the doctor for the evidence base regarding their recommendations.

Personally (as a very experienced nurse) before even considering surgery I would get second opinion from another haematologist and discuss the following

1) Other medical options, there are many available e.g. Eltrombopag (Revolade) or Romiplostim (NPlate). To remove a healthy organ without trying other medical avenues is an extremely drastic option. ITP can be a very frustrating condition. I tried 5 different treatments over nearly 3 years before I found one that worked. I still have my spleen & it's going nowhere.

2) The possibility of further investigations to try ascertain if your ITP is a platelet destruction or platelet production problem
i.e. ultrasound scan of spleen and liver to rule out any abnormalities, bone marrow biopsy to see if you have any platelet production issues. If it is a production problem it is unlikely a splenectomy will help. What if you have an undiagnosed accessory spleen? It's a shame you don't have Indium scans in the US.
Incidentally have you been tested for H Pylori ?

There is no guarantee a splenectomy will work, it is not without several risks let alone the risks associated with any surgery.

With Covid-19 around I would really advise against getting your spleen out anytime soon. People without a spleen are considered high risk in the UK and have to shield themselves - stay indoors all the time. This is not the time to be doing anything to compromise your immune system. Have you considered drugs like romiplostim and eltrombopag instead?

Good point alisonp! With the corona virus threat, I'll tell you every day I'm glad I still have my spleen. I've been to 3 hematologists in the past 10 years and each one suggested splenectomy. I refused and very pleased with myself for standing my ground.

As MrsB said, you might want to get a second opinion and do your research. In California where I live they aren't even allowing surgeries like that now during this pandemic. Its very much an "elective" surgery and not at all necessary. Doctors can pressure patients, I've experienced that, but really there's no hurry to lose your spleen when there are other good treatment options. I think you said you were a teacher, I certainly wouldn't work around children without a spleen(just my opinion) but its something to consider. Good to take everything into consideration.

I have taken Promacta and Nplate. they are both drugs designed for ITP and both have good profiles. I am on Nplate which is an injection and have no side effects from it. Promacta (eltrombopag) is a pill which is also very effective for most people with generally low to no side effects. Prednisone works for me to give my counts a short term rescue boost. Thats an option (if you respond to steroids) to buy time while considering your next move.

I want to thnk everyone for their insights. I should mention that my dr and i have been discussing and putting off this option for nearly a year. I do not have a positive reaction to steriods. To get a second opinion i would be traveling over 3 hours and that is not permitted with the covid 19 stuff right now. I saw the surgeon on Monday with a huge list of questions and we discussed many options and involved my hematologist. I was dropping at a rate of 50 platelets per week and i was down to 96 when i saw him. He recommended having the surgery and referred to it as emergent. He explained that if i continued to drop at that rate i could be in danger. I knew that myself and because i don't respond well to other "rescue" treatments i went with it. He fast tracked me...i met him Monday, had a ct on Tuesday, and had surgery on Thursday. They were able to test me for covid in the OR (which was horrible) and then i had laparoscopic surgery to remove my spleen. The next morning i had jumped from 93 the day of to 191. I am hopeful that this is a good sign. The hospital was extremely cautious about covid and my surgeon is the best in the area with a 0% infection rate. I am home and recovering now with hopes that my CBC next week shows maintained good numbers.

Great numbers!- sounds like you found your answer and got right with it. Hope you have a speedy recovery and a long remission from ITP!

Hello. It's good to hear that you're doing well.
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