Splenectomy failed, now what?

After 4 years of being treated for Chronic ITP, with various forms of treatment and months of Rituxan and other drugs, I could no longer keep my platelets above
25k for more than 2 weeks.

I decided to proceed with a Splenectomy.

Surgery went well, and 8 hours later, my platelet count had jumped to 134k.

Two weeks later I was at 229k.

6 weeks after surgery I plunged back to 140k, and today,routine CBC, Dec 29th, I dropped another 40k down to 100k. Not good. I know 100k is great, but these results indicate the operation has failed. Even the Hematologist is baffled.
With this amount dropping, every 4 weeks, I will be in the danger zone again in no time.


That surgery was very painful to recover from and 3 months later I still have a good deal of pain in my left side. All the incisions healed fine.


My next full consultation is Jan 19th with my Hematologist.

I have nothing to look forward to, I've been through it all now.

Has anyone else been through this much and found an different treatment that works?

I hope this can help anyone else in the same position. I had put off having my spleen removed for 4 years and then when I finally did, it failed.

I've lost my faith in the "cures". I know I'm in a small percentage that does not respond to the usual treatments. I've been told that since the beginning.

But now that I've done the Splenectomy - is that it?

Scott







.

Scott:

All is not lost. I've been on this board since 1998 and have seen many situations where splenectomies seem to be failing but counts go back up. Some people respond better to Rituxan after splenectomy, some respond better to steroids, and some just go up on their own. The downward trend is not necessarily gloom.

Have you tried the TPO's? That may be another option.

I'm not sure why your hemo is baffled. This can be a common thing.

I agree with Sandi, especially about the baffled hemo. I think it's time to get a new hemo, one who for example is aware that a not small percentage of splenectomies fail. It's worth the risk for many but you'd think a doctor would at least know the percentages and not be baffled.
Erica

i wish you can find my post for my son's surgery as will , he dropped once after 3 months from 600 k to 400 to 35k , i thought his surgery faild but at this time his count back up to normal 167k and 500 k again , dr said he might have viral infection , one month later failed to 2k , this time has to go the ER again , this happened 4 months ago and he is been treated with Decadron for 4 days this was before i took him to the hospital because after the 4 pulses his count dropped to 2k, so after ivig tow days , his count back up to 500k and his doing fine , i hope his count sustain this time, i hope he goes for remision , he is 18k , i hope the best for you , and i want tell you your count will be up again,

I had a splenectomy in 1988. In the hospital my count would not get above 50,000. I thought to myself, all this pain and ordeal and it didn't even work! They sent me home on Prednisone. Very slowly counts went up, 60,000, two weeks later up to 70,000. Pretty soon I was up to 100,000 and slowly getting of the Pred. About six months later I was up to 200,000 and it stayed there for 15 years! In 2005 I relapsed and have been struggling since then. But I did have 15 years of no problems! So don't give up, okay?


Debbbie D

I had a splenectomy is 2004 they managed to get my counts to 40 so i could do the surgery (new laser surgery that only one dr would do in Orlando) i was up walkin around the next day but that day my count didnt move, the next week it was down to 30 so back on steroids i went rituxin i was allergic my count hovered around 30-40 for about two years then i decided not to see a dr at all for the next three years i guess not decided i had no insurance no money and i felt fine so here i was 2009 sept 1k and hemoglobin of 4 in the hospital wish i would have stayed on top of now I am hundreds of thousands in debt but i guess thats what i get for pretending i was "cured" chronic itp usually cannot be cured we can go into remission and oh man i want that again lol but sorry im babbling what im trying to say dont get discouraged theres other meds and SOMETHING will work for you i tried promacta nothing i am now on nplate and my counts last week were 43k on fri and 24 on monday hopefully their up this friday but there are things out there dont worry i know its frustrating and all you want are normal platelets to be able to whatever you want to do but at 100 for right now you pretty much can you never know what will happen keep your head up! When i start feeling sorry for myself I remember there are people out there who have it way worse then me and that my disorder can be treated and I will get back to a normal life