Splenectomy Next Weds..

Spent last 10 days in hospital..Preds didnt work 5 days worth if IVIG..Lookin at splendectomy next weds...Pray this is the end of my ITP!!went in hospital plates at 4k got out 10 days later 200k

Does any1 else have the really really low plates and is this normal for an ITPr

I have really really low platelets. Diagnosed in Jan 2010. If I dont treat i stay at around 2-3 k. I don't respond well to steroids and I am rh negative so no Win Rho for me. But I still would like to hold on to my spleen for a little bit longer!

Not sure think im rh positive.. guess i need to ask..rheumatologist wants to run test also

Hi, I had a splenectomy 6 1/2 years ago and so far I have stayed in remission. I had a count of 3 that would not go up when we decided to go with it. I have had a few issues of being sick since but not sue if it is really due to that. I had 2 cases of diverticulitis int he last 2 years and had part of my colon taken out in November but that may be due to a family history instead, my grandmother and great grandfather died from colon cancer or diverticulitis complications.
Everytime I go in to have my counts checked I wonder what is up. This last time he has sent me on to an endocrinologist so I wonder a bit more. Guess I will find out.
Good luck with everything.

Bear, how long have you been diagnosed for? What other treatments have you tried? There are lots of things to consider before jumping into a splenectomy. It took me 2 years before finally having it. As long as you realize that a splenectomy doesn't guarantee that you'll go into remission and have really weighed your pro's and con's, if that's what you decide, we'll be there for you. No matter what you decide, we'll be there! Good luck.

Yes, what CindyL asked.
I would most definitely look at all the treatment options before getting an organ removed. There are a lot of treatments out there. Sure, since everyone is different, you have to try a few to see what works for you. Have you looked into the two newer drugs NPlate and Promacta? I'm having pretty good luck with Promacta now (after years of immune suppressants and/or steroids).
My spleen and I have become quite attached to one another over the years. We've had a lot of fun over the decades. Ol' Spleeny and I have seen a lot and done a lot together. I'm hanging onto it for as long as other treatments keep me over 20k without intolerable side effects. Although Promacta has managed to get me above 50k at the last check (52k).
I find it interesting that they kept you in the hospital until your count was 200k.

Diagnosed with ITP May 2009..On steroids a few months..Plates shot up and stabilized by October...Cleared till 6 month visit in April '10...But before I could go to Hematologist, woke up one morning with blood blisters in mouth, petachae everywhere and massive bruises everywhere, so I knew what was up...Went in hospital 4-18, plates at 4k got out 4-28 plates at 200k,1st 3 days i was on prednisone 110mg(last year only spent 3 days in hospital) roids brought it up, this year no luck..So i had IvIg next 5 days.1st day after IvIg plates went from 4-7, then 7-23, then 23-49, then 49-70, then 70-120 then afterwards 80k in 2 more days..Doc has mentioned Nplate but also said this would be weekly for possibly rest of my life and the IvIg wasnt longterm fix as it thickens the blood and soforth..

Getting down that low is pretty common. I've been below 5 quite a few times. It happens.

just found out ivig was like 10k a bottle..yikes???

Do you have confidence in your hematologist, Bear? HAs he mentioned WinRho and Rituxin? You might want to check out other options before getting the splenectomy. I was sorry I didn't try WinRho before my splenectomy. When the splenectomy failed (which it did two months after the surgery), I learned that WinRho was no longer an option for me. Some doctors seem to me to be alarmists. Most of us haven't been hospitalized with very low counts--though your doctor may have had reasons for hospitalizing you that aren't obvious to me.

Splenectomies do "work" for quite a few ITPers, however, and though mine didn't, I haven't (to my knowledge) suffered any ill consequences from it. The laproscopic surgery itself was much easier to endure than other surgeries. (I had my splenectomy about 6 years ago.) Courage and good luck--

just found out ivig was like 10k a bottle..yikes???

These drugs are not cheap. I've been on 75mg of Promacta since January. My prescription is a tad over $8,000.00 per month. I believe NPlate is about the same. Luckily, I only have a $60 co-pay for Promacta and insurance covers the rest.
I chose to try Promacta over NPlate because it's oral (tablets). I don't have to go to the hospital to get an injection every week. They both do the same basic thing as far as ITP treatment goes.

I've learned over the years that spots and dots and bruises (oh my!) doesn't mean that I must go to directly to the ER (do not pass GO, do not collect $200). Everyone is different, but you will figure out when it is and is not critical for you. Your doctor SHOULD help you with all of that. I've had so many 4k and lower counts over the years that it ceased to be scary. I also stopped "living for the count" and got on with life. Again, everyone is different though....
Personally, I have been very keen to avoid tossing my spleen into the garbage. My Hematologist is right there with me on that. Primarily because there is no guarantee that cutting out your spleen will work. It's just another "try and see" approach, like every other ITP treatment. Some get lucky, some don't. But unlike most of the other treatment methods, it not reversible and there can be lifetime-long issues afterward.

Now if money is an issue, I had rather good luck over the last few years with Cyclosporine.... it was only a $5.00 co-pay per month. Although, it eventually stopped working for me (as did Cellcept), but it worked fine for several years.

So far, Promacta has given me the most "normal" life of any treatment I've done.

Jack

Well what scares my hema is that after last year and the success of steroids and this year steroids wouldnt even budge my plates, is that my body wont be able to respond to certain treatments..and in cat scans both surgeon and hema noted my spleen is quite enlarged..possibly due to gobbling up my platelets..other than minor colds im in good health most of year and wouldnt be as succeptible to as many colds, infections,etc and would be able to function w/out spleen..I have a few days till surgery so more research and i lean on God for guidance..plus my friends here..either way God will guide me and remember God Heals!!

All my friends on here if u have facebook u can add me Joe moore..paducah ky..Keep up the goodfight..God Heals!!

Bear, I'm not sure if your doctor's told you you wouldn't be as susceptible to colds and such, but that just isn't the truth. You could become more susceptible to colds, flues, whatever is going around. I have been lucky, I've only been sick once since my splenectomy 4 years ago. I generally try to avoid anyone who I know is sick, tho. Yes, you could function with out your spleen, but it plays a big part in our immune system.

I hope you do do more research. Good luck on your decision and remember, we're here for you!

Bear, it sounds like it's been a wild ride for the last couple of weeks. It's a bit overwhelming the first time you have really low counts. I was diagnoised with counts in the 70's, held in the 50's for 15 years with no treatment, then started the downward slide. Even after that long, the week when it was confirmed I'd dropped to 6 was emotionally rough. Thank goodness for insurance, Winrho, and a long term relationship with a hemotologist so that we had a plan we were both comfortable with. I've been treating every 5-8 weeks and trying to stretch it out even more. If I can stablize in the 50's or above we'll stop treatment. Currently I've held over 70K for 6 weeks, yeah!

An enlarged spleen can be a concern. My sister has a myloprolific bone marrow disorder rather than ITP and hers was monitored for several years because it was enlarged before they decided to remove it. It continued to get larger and began to push up against the stomach until she could only eat a few ounces at a time and then she was full, but hungry again in a short while. The concern was it was getting so large that by just bending over she might burst it. She was restricted from impact activities like riding her horse. Because of the size, they could not do a laproscopic surgery and she had a large incision. Because it was displacing other organs and the blood supply to the pancreas and stomach are shared with the spleen, she was kept in the hospital and monitored closely for a few days.

Now, I didn't share that story to scare you. My sister always seems to be far outside the "norms". The point is that you should make sure that you and your doctor are having the right conversations and that your comfortable with the possible outcomes and options. As I said, my sister was monitored over years before they made the choice to do the surgery.