doctor on thursday need questions

I have a doctor appointment on 10/10/13 he is pushing to take spleen out. I do not want to! And most of you know that we are trying everything... I am going to ask for a parvo test and another CT before I will even think about surgery. The last CT showed normal spleen. What else should I ask for or what other labs/meds can be done? In infusion center now waiting on CBC yesterday 4k and of course platelets. I just don't know what to do I am at a loss. This is really starting to get to me! I normally am worry free but I can only take so much. Any help would be awesome! This is the knot place I can turn too....

How about, why aren't you even waiting long enough to see if the Rituxan has worked, since it can take up to 12 weeks to see Rituxan effects?

Erica

Hi Amber,

I don't post much but do read a lot on this board. I have been following your posts. I have also been following posts on another board, I think it is in the UK. On that board, I have seen a couple of posts regarding using a combination of a TPO agent like Promacta with an immunosuppressant like Cellcept (MMF). You may want to ask your doctor about using a combination like that. Here is the link to and detail of the post in case the link does not work.

healthunlocked.com/itpsupport/questions/130112206/hi-my-daughter-has-been-on-a-combination-of-eltrombopag-and-mmf-for-sometime-75mg-eltrombopag-1gm-mmf?ref=email_dailyB

Hi my daughter has been on a combination of Eltrombopag and MMF for sometime (75mg eltrombopag 1gm MMF)

Her count has risen steadily to a very healthy 230 and it was decided to taper off the Eltrombopag to 50mg, within 2 weeks she has dropped to 103 (which is still good), has anyone else had this type of experience while on this combination, she is back up to 75mg Eltrombopag to try and get a higher count as her doctor is worried that she may drop again next week. Any experiences on this combination and the effects when tapering off the medication would be gratefully appreciated.

COUNTS TODAY 19K, OH YEAH......

thanks, i've tried promacta but a comb may work. I was looking at the Cellept (reading about it)

Counts yesterday 4k today 2k

Like Erica said why aren't you waiting to see if Rituxan will work? How long does it take for Vincristine to work? The decadron and prednisone should have worked by now but a different combination of treatments may work. My son was on prednisone and cellcept together. Go through the treatments listed on this site. If there are any you haven't tried {and I know you have tried a lot] ask about them. I am impressed how you are holding up through this. I pray every day that that something will work for you. Joan

I am going to wait 3more weeks to see if the rituxan kicks in and the vincristine only take a week or two. Just don't know if I should still the platelets and cbc daily? Then will look at cellcept and or imuran.

So I will wait 7 weeks but what about the platelets daily couldn't I go every other day or third day?

That is up to you and your doctor to decide. Is there any real benefit to having a count every day?

I think getting platelets everyday is overkill...do you think the platelet transfusions are working for you? If you're getting them everyday, shouldn't your count be higher?

They only last about 12 hour in me and normally maybe 24 hours to 72 hours.

Amber,

Just worried that you might become refractory to future platelet transfusions. I can't remember when you started getting them...I got 4 so far since I been diagnosed in March of 2011, and my dr is already worried about that. Normally, a transfusion for me will last about 3 weeks.

15k today and got the last round of Vincristine. Also talked to the doctor about Sunday night the crab boil and the strawberry margaritas. And the fact that the report read large and clumped together, I said since they were clumped together and alcohol thins the blood, I figured they were easier to read since they were clumped together that day?? All he said was I am not going to tell to drink or not drink but I wouldn't be surprised with ITP. I've seen weirder things happen.... Long story short he didn't get mad that I have one margarita and didn't say I should have one once in awhile. Even when numbers are so low.

Slammed:

A platelet transfusion lasts you three weeks? What sort of counts do you hold afterwards? Are you sure you have ITP? That's really unusual.

Amber:

I am one who generally believes that anything in moderation won't cause too much of a problem with ITP. But in this case, with counts so low, I'd reconsider the alcohol for a while. Is it really worth the risk? I've had to give up alcohol because of my medications. I haven't had a drink in 5 years. It stinks big time because sometimes I'd loved to have one or two once in a while, but death isn't worth it.

Sandi

I haven't drink in along time and wanted a special dinner and wanted something to go with it. Haven't had anything since, I had a good time with the hubby good food and a nice drink. I just throughout it out there with the doctor to see what he had to say about it. I don't do that normally and have no reason to do it in the future other than hope to celebrate HIGH numbers one day soon.

Sandi,

At beginning, I refused to be treated with prednisone, I was at 5k, get 1 bag of platelets, which will bring me to about 22k, and this will slowly go down until I get another transfusion. After a couple times of this, I realized I don't have time to keep going to the hospital to get transfusions. Yes, I'm pretty sure I have ITP since I have been tested for everything under the sun...you know how it goes with ITP...everyone is different...

Amber:

I get it and you can drink if you want to. You don't have to defend your choices to me. It's just that you seem to be going through a lot to avoid a bleeding episode and a drink just sort of reverses that a bit.

Slammed:

Everyone is different, true, but transfusions typically only last a few hours. Your body must have found a way to hang onto them!

Sandi,

For me, I think it also depends on the bag of platelets/donor too...it seems that I get a higher count afterwards than others...and how long it will last.

Slammed

Yes I also think that it depends on type O+ works for me longer as well as A+… I've gotten a double bag of O- and it was gone in hours.

I think your at the stage you need to sit back and look at what you have done and are doing?

A part of me wonders if you are having so much trouble because of the aggressive treatments. Not saying you don't need them.

Could all these different treatments be counter acting each other?

Again how bad are your symptoms because in the single digits you should have bruising and petechiea. Are you having nose bleeds? gums bleeding? internal bleeds?


Make a list of all the treatments you have tried and the dates how close together? As well as results and mixture of treatments. Compare side effects and look into contraindications of each.


I know I have been out of this for a bit but I thought getting transfusions of platelets stimulated platelet destruction?

My daughter has lived with ITP for 2 1/2 years with counts around 10K or below. Never received platelets. If has some bleeing &/or major fatige issues she gets IVIG. Other treatments have not worked for her- steroids, rituxin, winrho. Otherwise, she lives with the low counts. Honestly, she does pretty good. Is on the high school golf and swim teams. I used to worry A LOT about the chronic CRITICALLY low counts... we have learned to adjust our thinking and go with her symptoms not the count.

does she still have her spleen, my count yesterday 7k and today 19k.

My first transfusion lasted 2 days. I canot remember if it was before or in between Rituxan treatments. I also wonder if the success of a transfusion depends on the doner? My last transfusion 4 weeks ago was delayed due to someone else needing the Platelets more than me. Last week count was 109k.

Yes, my daughter still has her spleen for now... a splenectomy is a real consideration for her/us though. Right now she is in an N-plate study.... pretty sure she is getting the placebo (at least we hope). Her counts have gone no where. 25 week study. Ends first week of November. On a side note, we are extremely lucky to have a great doc that specializes in ITP. He also has an APN.