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2005 Spleenectomy now accessory spleen showing up

  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
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10 years 7 months ago #51292 by DJM
2005 Spleenectomy now accessory spleen showing up was created by DJM
Has anyone had an accessory spleen show up and did you have it removed? I'm still fighting for platelets currently going on my 3rd Rituxan treatment after stopping Promacta. Went in Monday and they have found a accessory spleen..

Just not sure where to go from here.

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  • 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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10 years 7 months ago #51293 by Sandi
Replied by Sandi on topic 2005 Spleenectomy now accessory spleen showing up
DJ:

There have been a few people over the years who have had an accessory spleen appear years after splenectomy. Several people ended up having them removed more than once. I can only think of one person who, after his third surgery, had a rise in counts. The rest did not have any change in counts. Sometimes it is the liver doing the destruction or production is the problem. Tough decision.
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  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
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10 years 6 months ago #51559 by DJM
Replied by DJM on topic 2005 Spleenectomy now accessory spleen showing up
I go tomorrow to get a count done. Finished the Rituxan last Monday. I know my hematologist will push to have it out..and I'm ready to do what I can to get this back under control. My insurance deductible has been met for 2015..not sure I can handle another 20,000.00 in 2016 in deductible. I know the Rituxan pulls your immune system down so I'm just concerned about a surgery with no immune system...hmmmmm..always something to think about.

Thanks for your help. :)

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  • 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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10 years 6 months ago #51562 by Sandi
Replied by Sandi on topic 2005 Spleenectomy now accessory spleen showing up
Keep this in mind: For about six months after Rituxan, vaccines are not usually effective. If you need to get any of the pre-splenectomy vaccines, they may not work. It's possible that you are up to date since you've already had a splenectomy, but if not, I don't know that I'd consider it this soon after Rituxan.

How have your counts been?

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  • mrsb04
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  • ITP since 2014. Retired nurse. 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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10 years 6 months ago #51565 by mrsb04
Replied by mrsb04 on topic 2005 Spleenectomy now accessory spleen showing up
I'd be inclined to hang on for a while yet. It can take a while for the effectiveness of Rituximab to be apparent. Plus you need to bear in mind what Sandi has said regarding vaccinations

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  • 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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10 years 6 months ago #51566 by Sandi
Replied by Sandi on topic 2005 Spleenectomy now accessory spleen showing up

mrsb04 wrote: I'd be inclined to hang on for a while yet. It can take a while for the effectiveness of Rituximab to be apparent.


There's that too. It can take up to 12 weeks or longer to see a response.

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  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
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10 years 6 months ago #51568 by DJM
Replied by DJM on topic 2005 Spleenectomy now accessory spleen showing up
I haven't gotten a true reading on my count yet. It's been propped up by IVIG and steriods..but the IVIG should be worn off now..and the prednisone has been reduced to 5 mg a day..and that's when my count has crashed in the past to 1 or 2K so I'm hopeful...I'll know more tomorrow..I think most of the drugs are out of my system now. :) Fingers crossed.

I hear you all on the vaccines.

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  • 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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10 years 6 months ago #51569 by Sandi
Replied by Sandi on topic 2005 Spleenectomy now accessory spleen showing up
Good luck. You might be surprised. Let us know....we're holding our breath! Well, I am!
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  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
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10 years 6 months ago #51584 by DJM
Replied by DJM on topic 2005 Spleenectomy now accessory spleen showing up
Count was 350K yesterday. My doctor said that number still might be propped up some with the other drugs..but based on what I know...I would say the Rituxan is working. I'm only on 5 mg of the prednisone or the IVIG but that was given 5 weeks ago. That's a long time for IVIG to hold a count. I go back Friday for a count and if it's still up I can come off the 5 mg of prednisone..I can't wait to get off these drugs.

Going to get a CT scan on Friday to confirm there is a accessory spleen. We aren't going to do surgery to remove it now...I just want to know for future reference (my deductable has been met) so might as well get it done. I worry about contrast for some reason...on top of all these other drugs..I know November is going to be a drug free start to a long remission. If I don't go into remission then I might have it removed if in fact I have it. LOL! So many choices to make....I'm just glad something is working right now.

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  • 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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10 years 6 months ago #51585 by Sandi
Replied by Sandi on topic 2005 Spleenectomy now accessory spleen showing up
Well, it looks like that decision can be avoided for now. Rituxan can hold counts for a long time, some for years, so maybe you will be one of the lucky ones.
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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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10 years 6 months ago #51589 by midwest6708
Replied by midwest6708 on topic 2005 Spleenectomy now accessory spleen showing up
I'm so glad the Rituxan kicked in!
Good for you!
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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 6 months ago #51598 by EmilyK
Replied by EmilyK on topic 2005 Spleenectomy now accessory spleen showing up
I am thrilled for you!
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  • mrsb04
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  • ITP since 2014. Retired nurse. 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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10 years 6 months ago #51600 by mrsb04
Replied by mrsb04 on topic 2005 Spleenectomy now accessory spleen showing up
Great news
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  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
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10 years 6 months ago #51638 by DJM
Replied by DJM on topic 2005 Spleenectomy now accessory spleen showing up
I'm praying to be a lucky one :) Thanks!

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  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
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10 years 6 months ago #51639 by DJM
Replied by DJM on topic 2005 Spleenectomy now accessory spleen showing up
Emily how are you doing?

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 6 months ago #51652 by EmilyK
Replied by EmilyK on topic 2005 Spleenectomy now accessory spleen showing up
DJM,
thanks for asking. I am doing well. I am down to 12.5 mg of Promacta daily, but my count is about 180 so I am guessing I will get to skip a dose a week starting next week!! YAY!! I see the doctor once a month and Monday is my day. I still check for bruises every morning, but so far all is well. I am so happy that things also seem to have improved for you. It is still totally unreal that I have a disease and know as much as I do about my blood.
Enjoy the weekend.
Emily

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  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
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10 years 6 months ago #51653 by DJM
Replied by DJM on topic 2005 Spleenectomy now accessory spleen showing up
That's awesome! I hope the count holds up :) I'm dropping 100K a week right now...down to 150K which is still good but can tell the steriods and IVIG is almost out of my system. Hoping the Rituxan works..waiting waiting waiting...LOL!

Counting bruises like you every day...HA HA!

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  • mrsb04
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  • ITP since 2014. Retired nurse. 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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10 years 6 months ago #51657 by mrsb04
Replied by mrsb04 on topic 2005 Spleenectomy now accessory spleen showing up
Glad you are holding your count Emily x
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  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
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10 years 6 months ago #51742 by DJM
Replied by DJM on topic 2005 Spleenectomy now accessory spleen showing up
Today my count is 20K back on 40 mg of prednisone. Still holding hope the Rituxan works. They want to schedule surgery to remove the spleen tissue that has grown back to see if that is causing all this to act nuts again.

I'm just deflated not sure what to do at this point. As soon as I come down off the drugs my count tanks so fast. :( Feeling a bit sad at this point.

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10 years 6 months ago #51745 by garylouisville
Replied by garylouisville on topic 2005 Spleenectomy now accessory spleen showing up
It will eventually get better.

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  • mrsb04
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  • ITP since 2014. Retired nurse. 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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10 years 6 months ago #51754 by mrsb04
Replied by mrsb04 on topic 2005 Spleenectomy now accessory spleen showing up
Could you have an indium scan to see if the spleen tissue is the cause rather than surgery?

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  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
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10 years 5 months ago #51935 by DJM
Replied by DJM on topic 2005 Spleenectomy now accessory spleen showing up
I had that done in 2005 before I decided to have my spleen out. I went to the surgeon yesterday and he said there were over 50 splenic nodules inside of me. He said they were on both sides of my abdomen and from looking at the CT scan and the other nuclear test (don't remember the name) I could see them. They want to do surgery December 14th to remove all of the nodules. I can't hold a count without the drugs and it's been 8 months now of fighting and bleeding issues. So I think I'm going to get them out. The surgeon can't do it lapo he has to open me up and pluck each one out. He said it looks like a spill from my surgery in 2005 as spread out they all are....There of course are risks..my immune system is tanked due to all the darn treatments..

Fingers crossed

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10 years 5 months ago #51943 by Winnifred
Replied by Winnifred on topic 2005 Spleenectomy now accessory spleen showing up
Here's hoping if rituxin kicks in and they postpone surgery. If you end up having the surgery here's to an uncomplicated procedure with a quick and complete recovery!
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  • 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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10 years 5 months ago #51947 by Sandi
Replied by Sandi on topic 2005 Spleenectomy now accessory spleen showing up
Good luck, DJ.
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  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
More
10 years 5 months ago #52057 by DJM
Replied by DJM on topic 2005 Spleenectomy now accessory spleen showing up
Surgery is scheduled for December 2nd. Currently my count is being held by the steroids. We lowered and my count lowered so now I'm just holding until the surgery and then hopefully will come off the steroids all together. My liver enzymes are high now so I want to come off all drugs...well..and stay alive..LOL. Going to do a gentle liver detox a few weeks after my surgery.

I hope everyone had a great Thanksgiving. I'll post back after surgery and let you know how it went. I still can't believe there are 48/50 pieces of splenetic tissue scattered all over my insides...so very odd.

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  • 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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10 years 5 months ago #52058 by Sandi
Replied by Sandi on topic 2005 Spleenectomy now accessory spleen showing up
It is odd, DJ. I've never heard that before in all of my years here (since 1997). I hope it works for you!

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 5 months ago #52081 by EmilyK
Replied by EmilyK on topic 2005 Spleenectomy now accessory spleen showing up
DJM,
I will keep you in my thoughts and prayers.
Emily

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10 years 5 months ago #52106 by Melinda
Replied by Melinda on topic 2005 Spleenectomy now accessory spleen showing up
Surgery today - thinking of you DJM

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  • 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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10 years 5 months ago #52131 by Sandi
Replied by Sandi on topic 2005 Spleenectomy now accessory spleen showing up
Good luck, DJ. Check in when you can.

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  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
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10 years 4 months ago #52205 by DJM
Replied by DJM on topic 2005 Spleenectomy now accessory spleen showing up
Well, What a surgery that was...the surgeon cut from my breastbone past my belly button and here is what he found. Pieces of splenetic tissue in fatty tissue, a large piece of splenetic tissue in-bedded in my appendix which he had to remove the organ. A large piece of splenetic tissue attached to my liver so they had to remove a piece of my liver. He showed me photos of all the tissue with the blueberry sized pieces scattered all in it.there was a huge amount..totally crazy! He said he could see where the laposcopic clamps were placed all around it pieces of tissue that he removed. His thoughts were the bag burst or there might have been a whole in it or defective...

Had blood work today 8 days later and it showed my count at 680K showed enlarged platelets...I'm hoping this is it for me for a few good years. Still on the steriods tapering slowly off..

Feeling sore but alive so I'm happy :)

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