update on me!

Hi all!
I would just like to say that I have decided to say goodbye to my spleen. Last week I dropped to 8K. My dr. gave me platelets to which I reacted so I was given steroids as well. My platelets rose to 64 but one week after the infusion are down to 14... which I kind of expected. I talked to my dr about NPlate and promacta. I decided that i would rather not take daily pills and have to have my blood checked every week. He said that 2/3 of all spleenectomies for itp result in full recovery. And that the other 1/3 might not have total recovery but would have counts they can live with. Nothing has worked to keep my platelets up. I think i am so tired of the stress, fatigue and anxiety that i am willing to go through with it. Wish me luck!

Well, I hope it all works out for you! Good luck. When is the big day?

Good luck, hope it all works out for u and it is very successful for u.

Good luck! I hope it's successful for you.

I decided that i would rather not take daily pills and have to have my blood checked every week

I know you've made up your mind....but I simply wonder why you have the idea that you'll need to get your count checked every week on Promacta?
I get my platelets checked 3 times per year on Promacta. I only had to do the 'couple times a week' check during the first few weeks to get the dosage regulated. Then a couple times before Christmas 2010, when we reduced the dosage.

BTW: I've never heard a '2/3 full recovery and 1/3 good enough' ratio for a splenectomy before.

I wish you luck in this.
.

" ..... And that the other 1/3 might not have total recovery but would have counts they can live with."

I am concerned that your Doctor has led you to believe that the 1/3 of ITP patients after splenectomy might not have total recovery, but have counts they can live with. I would be interested to hear how he/she came up with this statement?

My experience has been that after my splenectomy six years ago, my platelet count was in the low normal range for about 3 months. After this my counts dropped back to less then 10, as they had been pre-splenectomy.

I then worked my way through many treatments, with no success. In 2007 I began taking Promacta in a trial which continues to this day. Even whilst on Promacta, my count has continued to swing greatly, but currently is sitting round the 100 mark with a variation of about 50 every week.

I wish I had had the option of taking Promacta at the time I was considering splenectomy, knowing what I do now. One tablet once a day in my opinion is far more acceptable compared to the greater risk of infection that a splenectomy can create. A splenectomy does not always equate to less fatique, less stress or less anxiety. It can create more, from my experience.

I wish I had known......

Hi!
I don't know where my heme got his statistics and I know that some people still don't recover in spite of those statistics. The surgery encyclopedia on the internet actually says 70% recover. I have thought about this a lot. I feel very cautious about taking drugs that are relatively new on the market.Given my reaction to ciprofloxacin, I have become very respectful of the adverse effects a drug may have. I don't know the date of the surgery yet but will keep you posted. I have never had surgery before, ...so I'm pretty nervous. I research everything and of course find positives as well of lots of negatives for each treatment. I feel I have made the right choice for me for where I am right now. So there you go. Thanks for wishing me luck. I'm actually a little excited to get my life back. God willing.

You have to do what you feel is best for you. I wish you a surgery with no complications, a speedy recovery and a good platelet count!

Could you please give the URL for the surgery encyclopedia you found on the internet that state 70% recover, and also where that is stated in the site - I think that is something we need to see. Thank you!

I apologize. I have gone back and I can't find it. All I can find is "two thirds of ITP patients require no additional treatment for their ITP after splenectomy". www.scripps.edu/mem/itp/firstrx.html From now on, I will copy and paste any information i am quoting. :S I have decided to get a second opinion. I am feeling uncertain and a little panicked. Last week, my husband ruptured a disk in his back, this past weekend my mother almost went into a diabetic coma and fell, broke her arm and dislocated her elbow. She's now in a nursing home for the first time. Not to mention big stuff happening with my students. I wish my itp could wait until everything else is back in order.....but that's not gonna happen....

tlmons wrote: I wish my itp could wait until everything else is back in order.....but that's not gonna happen....

oh yes, if only. Isn't most of life this way though?

Good for you for deciding on getting a second opinion. It never hurts to seek the advice of another Hemo. Besides, with all this other stress going on in your life--this could affect your platelets.

Good luck to you:)
DeeDee

Hi, Melinda I have read the same article but discounted it as I have already decided that this is a last resort. I have a sister who is a nurse in a surgery unit and it amazes me that she tells me they do spleenectomy on people that have had ITP for only two months (she is always telling me it is the way to go). We have had some interesting discussion on this.


www.surgeryencyclopedia.com/Pa-St/Splenectomy.html

Immune (idiopathic) thrombocytopenic purpura (ITP). ITP is a disease in which platelets are destroyed by antibodies in the body's immune system. A splenectomy is the definitive treatment for this disease and is effective in about 70% of cases of chronic ITP.

I hope this is the same article.
Timons seems to me sometimes, just from my experience with my sister that some follow up with these operations would be in order as my first question to my sister is how many of the people need further treatment, she has no idea because she says their platelet counts are good when they leave the hospital.

That is not an article I would rely on for credible information. Some of those basic articles are overly optimistic and not based on true studies.

Milly I think that is so correct, that the surgical team doesn't know what happens to the patient following 'successful' surgery so it is counted as a success if the patient recovers from surgery and there is even the most temporary increase in platelets.
Erica

Thank you Milly for finding that statistic for me. I couldn't seem to located it when I looked for it the second time around and thought I was going crazy and had misquoted. I wasn't aware that stress could lower platelets. At this point with me, all it needs to do is go down 2K and I'm "critical". I've been bumping into a few things lately. I can just feel a few thousand platelets piling up at the bruise. I have a thought about the Nplate/Proacta (sp?) group. I read that the mechanism of action for these is they stimulate the liver to produce a hormone (thrombopoietin)that triggers platelet production. Does anybody know about research done about the cause of itp being low thrombopoietin levels and the liver being the cause and not the spleen. Its just a thought. I am in the hospital this fine morning receiving platelets because I was down to 7K yesterday. So I have more time to turn things around. I reacted to the last platelet infusion I received so I hope this my last one. If I have surgery it will probably be soon after Monday (second opinion day). If not, I will probably be on something else that will help at least temporarily. You people are awesome!

Try not to panic too much. It will only stress you out more. I've been to 1000 and still didn't consider myself "critical". Just try to take very good care of yourself. When I was in the hospital, I wasn't being careful and I kept bumping into the bed with my legs when I would get up. After a while, I was very careful not to bump into anything, and the bruises started to disappear. I also made sure I got a lot of rest. When I started getting better and my platelets went up, I started swimming 3 times a week. My doctor thought this was a good idea. He said it would make my platelet count go up. Eight month later--I am still swimming.

Our prayers are with you.
DeeDee

Timons:

I'm not sure how far research has gotten with why the liver causes destruction of platelets, I've just read that it does. That is one reason why splenectomy doesn't always work or fails a while later.

Information overload does not always make a decision any easier. I hope the treatment you finally decide on brings the results you are looking for. Good Luck, and I will watch for up dates on your progress.
Benny.

Just to reassure you, my counts are currently at 14 and I just completed a bootcamp training session with a PT and I actually feel really good after it

Timons I hope you find peace in making your decision, these are big decisions to make when so much else is happening. Sometimes I find my mind just gets so full I need to take a step back and breathe and think. Maybe all you really need is time to think this through, is there any reason a decision has to be made so soon? Don't put to much pressure on yourself.
I wish you well if you decide to go for the surgery.

YOU are SO awesome, Angel85!!! I need to hear stuff like this! I miss working out.

Aww, thanks Timons. I thought it would be good for you to hear that kind of stuff, that you can still your normal everyday stuff, and my personal trainer is a family member. He is married to my cousin and so he knows all about my low platelets and that i might need to take it a bit more easy then everyone else. So yeah, you can definitely still work out, you just need to be aware of limitations or restrictions and just be careful if you know your platelets are low.

I hope everything goes well for you, and if you decide to go with having your spleen removed, it is very successfull for you. You need to do what is right for you.

Hello! I am back from Mayo Clinic! I agreed to have a bone marrow biopsy. It was a little painful but over fast. And there is absolutely nothing wrong with anything. I guess I have an abundant amount of megakaryocytes (sp?). Imagine that. The doctor asked me extensively about chemicals in my life and medication/ pills i am taking. In his opinion, any "toxin" could cause ITP. He asked me if I garden and what chemicals I use on it. He said to get rid of, or stop taking, everything! I take an over-the-counter allergy pill every day. Not anymore. Also, my platelets seemed to stabilize at 51(!!!):woohoo: while I was down there. The heme. said I was probably responding to the rituxan because people usually don't respond for about 6 weeks or so. . . Was it Sandi that wrote 4 - 12 weeks? (This site is awesome.)So he wants me to wait before I have my spleen out. Yes! I see my regular heme on Monday. The Mayo dr. will be sending up all his recommendations. It is a little intimidating thinking about telling my reg. heme that I would rather follow the advise of the 2nd heme. I am feeling a little more hopeful but still wary. I'm afraid to get my blood checked. Thanks everyone for your support. phew.

I'm glad things went well for you! Sounds like a plan.

Some doctors are actually happy to hear that their patients had a second opinion, some encourage it. I hope your doctor can handle that gracefully.

Not great news. My platelets went down to 7k and so I am going to have my spleen out on the 4th of May. I can't seem to find a dr that is ok with me living on 7 - 14K platelets. Angel85, I don't know how you do it. Even bigger problem, in my opinion, is that I have a ticket to see Elton John in concert on the 6th!!! I will be having laproscopic surgery. My heme. just looked at me ans said he couldn't change the date. But he didn't say yes or no. OK people. Should I sell my ticket or should I wait and see. Will I most likely be able to go? If so, I won't sell. ($250 ticket) What do you think? What do you know from experience? I don't want to complicate healing, but if two days is probably long enough to be able to sit at a concert (and sing my lungs out) then I WILL go.

I'm just curious; did the Mayo Clinic suggest you have your spleen taken out? I know living with platelets down to 7K isn't great (mine have gone down to 1K). But for me, I don't think I would let them take my spleen out. Now, you being young do have a greater chance of having a remission--but this still requires a lot thought. Let's see what Sandy has to say. I do hope you get to go to see Elton John. It's a shame the doctor can't put it off a few days! Wishing you good luck on both!

Yes, both drs. said that a spleenectomy in my case would be the most effective treatment for me. They are unwilling to change the date, I found out, because there will be 2 surgeons. One more in case they can't do a laproscopy in case of an enlarged spleen. yuck..... My hemetologist is awesome really. He's mostly worried about bleeding even though i don't. I wish there were more healthy itpers in my city. Even the mayo dr. isn't ok with any counts under 30K.

Dee Dee do you still ride horses? what is your count, if i may ask? And also, I'm not that young...50. The pic is my goofy daughter.

I just found this in the pdsa journal stories. I am going to ask my dr about putting me on ivig to see how I respond.

"CONCLUSIONS: Patients with idiopathic thrombocytopenic purpura who have good or excellent responses to intravenous immune globulin are likely to have good or excellent responses to splenectomy, whereas patients who have poor responses to intravenous immune globulin are unlikely to have good or excellent responses to splenectomy."

LOL - Oh boy, put me on the spot! I would not be one to discourage someone from having a splenectomy if they feel it's necessary and their doctors agree. Some people do get to that point.

However, the connection between an IVIG response and a splenectomy response has been disproven in literature many times. Anything that states that is most likely old.

"Previous response to corticosteroids (ex. Prednisone), IVIg, or other treatments are not very good predictors of splenectomy success. 3, 12, 13"

www.pdsa.org/treatments/conventional/splenectomy.html

The only predictor of success at this point in time is being under the age of 40.

My platelets were down to 1000 last July/August. Through IVIG and Decadron they started going up (it took almost a month to get them going). Last test I had was on Feb. 15 and my platelets were at 315,000. Before that, on Dec. 15 they were up to 450,000. I was riding horses when they were at 30,000--but being very careful. I am looking into buying a helmet that is comfortable (have a few around--but give me headaches).

My platelets could be a lot lower now--not really sure. I go for my blood test on May 15. As long as I don't have any severe signs of bleeding, I will continue to ride horses. Actually, when my platelets were at about 10,000 I didn't have hardly any signs of bleeding. I also work out at the gym; running and swimming. Again, if I start to show signs of bleeding, I will definitely stop running (just keep swimming). When I first came down with ITP (July 2006), I was doing a lot of running and I got this very large hemtosis(?) on my knee. So, I don't think running is good with low platelet counts.

I am 62 yrs old and the outlook once you reach 60 isn't too good when you have your spleen removed. I did see Dr. Howard Liebman at USC this last summer and he went over the odds. You, at your age, still have a very good chance of having a remission. Dr. Liebman also told me that I need to have "normal" platelet counts for a year before I can really count on havin a lasting remission. So, in the meantime, I just try to enjoy life.

Hi Timons, no advice from me, but I just wanted to say that this must be such a hard decision for you, it does my head in and it's not even me. I have been following this and I try to think what would I do, but I just bounce all over the place.
I really hope you get to see Elton John.
Thinking of you,
Milly