1 MONTH AFTER SPLENECTOMY - COUNTS CRASHED

Hello,
I had a splenectomy after 1.5 yrs of trying to keep my counts stabilized. I've tried prednisone, Rituxan, N plate, Promacta back to prednisone with promacta and also IVIG. N plate seemed to keep my stabilized most but eventually stopped working.
Anyways, after surgery on Sept 12th, my numbers went up to 275, 211 a week later and then after 2 weeks dropped to 11 as of today.
My local hemotologist and my specialist i've seen briefly at Cleveland Clinic mentioned that they may want me to try Vincristine. Has anyone had any experience with this? Side effects look like its pretty nasty.

I also read that sometimes it takes a few months for the splenectomy to level off at my body's normal level. If i were on promacta before and stopped that I know that causes a drastic reduction before your body starts to level again.
Feeling overwhelmed and was thinking I was "cured" after the splenectomy only to be back in the worrying stage.
Pete

Well darn it, I was hoping to read a success story. I'm sorry.

Here is what is on this site about vincristine:
pdsa.org/treatments/conventional/chemotherapy.html

Here is what MedlinePlus says about vincristine:
www.nlm.nih.gov/medlineplus/druginfo/meds/a682822.html

Now my understanding is one side effect can be neuropathy - I have it, it's no picnic!

I do still have my spleen, have never had vincristine. I'd say read read read and ask questions questions questions!!

Hang in there Pete!

I would add one more piece of advice.


Look at the whole picture your count is down to 11. What are your symptoms? are you actively bleeding? What is your lifestyle? ie:job side effects short and long term? Being without a spleen makes you immuno-suppressed will taking this new treatment suppress you even more and what are the risk to you!

Thank you.

My only symptoms so far are 2 small blood blisters in my mouth and a couple very minor nose bleeds since my splenectomy. I did have a seizure caused by a brain bleed back in March of this year which was a wake up call to me. I feel like its only been a month since the splenectomy and maybe they are pushing a new treatment before giving my body a chance to level out. I was given IVIG right before my surgery and was on promacta and prednisone so possibly all the extra drugs in my body have caused a drop.
My job is an office job, long hours but not laborous and pretty isolated from outside germs.
Thank you for your input.

Sorry to hear that. Vincristine can be pretty nasty. I've been here for a lot of years (since 1998) and have rarely ever seen it actually work for ITP. The people who did end up with neuropathy were sorry that they ever tried it.

It's possible that some of the treatments you used before just might work now to keep you in a safe range. That sometimes happens after a splenectomy.

What sort of response did you end up with using N-Plate?

Thanks for the reply. N plate worked once we got the dosage figured out for me. I was able to maintain at a normal range with up to a 5 ml dose. But stopped working for some reason. I then switched to promacta and I haven't really had much time to work with it. At the time i was pretty low and we decided to do the Splenectomy. My local hemo has me taking 75 mg tonight of my Promacta and 10 mg of Prednisone until we figure out what we are going to do. Hopefully the promacta will work and I won't try the vinchristine.

Sorry about your counts, Pete! That happened to me too. Just my .02; when I was first diagnosed, I took the list of possible treatments (from this site) and discussed them all with my hema dr. Most of them he refused because of the side effects. I went along with what he said.

Are you trying to maintain normal counts or safe counts?

At the time I think the doctor was trying to keep levels "normal" but now anything over 25,000 works for me.

splenectomy is not a 100% fix i had mine and the next week my count went to 1k from 400k i had to get nplate to stable my count. my remissions last for 2 years then they go to 1k i think its better than be constant be taking meds to stable my count

Pete:

Unless you have a very active lifestyle (or a lot of symptoms), 30k and above is good for most daily living. Normal counts can be difficult to obtain at times and many do not even try for that. An N-Plate dose should be configured to give the patient counts of around 50k and usually it does. Maybe trying that again (or Promacta) would do the trick.

There have been a lot of studies lately that show that ITP can be a thrombic disorder, so normal counts are not quite as popular as they used to be.

Almost 1 year since my spleen removal and 14k this week. Was on pred 20mg, she up Pred to 25mg and no change with still Promacta 75mg. Having to go back to weekly CBC.

Who is your doctor at Cleveland clinic? I went to mccrae and loved him. He was willing to try a variety of things.

My doctor is also Dr. McCrae. I found his name from a post from someone here on the PDSA website. Maybe it was you? I've had limited contact with him so far but am glad I found him. Are from you Ohio as well?

I did live in Ohio for 4 years but moved to arizona in April. I will tell you once you sit down with mccrae he will listen to you and discuss options and even brings in research and will basically say well this study shows this and this study shows that and gives you choices. He treats you as an intelligent human being and will act more as a consultant. He deals with mostly itp. I have called him multiple times in tears and he will personally call me back within 5 minutes. I can't say enough about him.

Does anyone know who tried Papaya leaf extract for ITP? I read in many places that this may work but not sure.

You might want to look in the 'Natural Treatments Section' for natural treatments.
There have been an abundance of posts on leaves of all sorts; papaya leaves, bay leaves, tea leaves, leaves of a different color, poison sumac leaves, Lief Erickson, Herbal Essence, not to mention the 1960s musical group The Leaves.....

I saw Dr. McCrae yesterday. I do like him and feel he is very knowledgeable and willing to try many things. Last week after my splenectomy i had dropped to an 11,000 count. I am back on 75 mg of promacta and 10 mg of prednisone. As of yesterday my count is up to 22,000 which to me made a difference between spontaneous nose bleeds and mouth blood blisters and none. So I guess its a little better.
Our next plan after a few weeks if the promacta doesn't maintain is either vinchristine or a pill form of chemo that I forget what the name is.

Imuran or CellCept? Those are not quite chemo's, but are strong immunosuppresants. I've tried both of them (not for ITP). Side effects are tolerable for some (not for me).

Hopefully Promacta will work and you won't have to go to the other drugs.

I am glad that you were able to see Dr. mccrae and your counts are up a bit. Fingers crossed Promacta will continue to work. I remember at the conference one of the doctors saying something about sometimes once a spleen is removed there is a chance that treatments that didn't work prior may work after. Did mccrae talk about this at all?

The pill form he mentioned was Cyclosporine (CSA). Had my CBC again at my local hemo doctor and I was up again to 39,000 and 6.6 white count. So as of right now I'm on 75 mg Promacta and 30 mg Prednisone.

39,000..... That's great! I hope your counts continue to go up. I actually do not respond to steroids at all, so mccrae tried me on Nplate and cyclosporine which he weaned me off of thinking I didnt respond to and it raised my blood pressure. However, there is a guy on here that does great with the combo of Promacta and cyclosporine.

The steroids work for raising my white count up but doesn't seem to effect the platelets. He still has me on 30 mg of prednisone along with the 75 mg of promacta so I hope I can maintain at that level. I am also going to try papaya leaf extract since everything has leveled off the last few weeks and see if adding that in the mix might raise up the counts with all other meds held constant.