Update

I just got the results of my bone marrow biopsy. It has shown i am over producing in my white and red cell count. My white cell count was 40, last week 30 and i have a little more then normal immature cells that could possibly turn into leukemia. He has said at this point, i don't have it, but that i do have the cells so i need to be aware of it and he can't guarantee that it won't become leukemia later on, by the way my platelets seem to be the only thing not over producing, they are at 14 today!

He thinks the over producing in my white and red cells could be due to the 12 and a half mg of pred and the nplate i am currenty on, so he has stopped all treatment for now except tranexamic acid tablets to help my blood clot if i do have a bleed somewhere and possibly platelet transfusions (not at this stage though) I am still to have weekly blood tests and hopefully without the pred and nplate my white count will go back down. I am most likely going to need another bone marrow biopsy in a month to check again and they are doing more sophisticated tests on the bone marrow biopsy they just did.

I am relieved he has said it is not anything really bad at the moment, but am still stressed and worried it could turn out to be leukemia or something just as bad later. I honestly thought he was gonna tell me really bad news today cause the hospital rang only an hour or so after the blood test to tell me to come in earlier then i usually do for my injection.

There is no documentation apparently that this has happened to anyone on nplate, that is can cause over production of white and red cell counts, so we're not sure if thats whats causing it at the moment, thats why we have stopped all treatment to see if that makes a difference and makes them come back down. Has anyone ever heard of this happening, i think i just need some re-assurances at the moment and i know most of you probally don't have the answers but i guess i just need someplace to vent my feelings and frustrations.

I see that you also have TAR syndrome. I have read that a high white count is normal with TAR as of course is the low platelet count. I'm no doctor but why don't they consider the low platelets to be from TAR and not ITP and treat accordingly? I'm just being nosey really so don't answer if you don't want to.

See this .. www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=tar

It says..
"In addition, some individuals with TAR syndrome have been reported to have leukemoid reactions, with white blood cell counts exceeding 35,000 cells/mm3. These leukemoid reactions are generally transient [Klopocki et al 2007]."

It also says that the thrombocytopenia can be caused by an allergy to cow's milk. Do you avoid milk?

Quite honestly Lauren I wouldn't worry about it. It's likely to do with the TAR and nothing else. Your haematologist should know this stuff though so it's a bit odd that he hasn't mentioned it.

Lauren, I'm believing it's not NPlate related. I've had 5 injections with no effect on my wbc. I know...everyone reacts differently, but like I said I'm believing it's gonna be ok. I'll be praying.

Lauren I know nothing about TAR or nplate - but I do want to tell you that I hope all goes well for you!

Ann, thats fine, thats a vaild statement. The doctor told us it is very complicated and it isn't just all the TAR and not just all the ITP, it is kind of a combo of both and it is very confusing to him which is why he wants to go the way we are going at the moment.

I think my white count has always been a little higher then normal, but over the last few weeks it has been creeping up more and i think thats why he is concerned because it is going higher then where it normally does sit and because i am overproducing on the red and white cell count.

I believe i did have an intolerance to cows milk when i was a baby, and i don't drink it much now mainly cause i don't like the taste. I usually have one cup of tea a day and i only put a small amount of milk in it and have done so for many years, so i don't think it would be that and i usually only drink light milk with my tea.

Not many doctors know much about TAR i'm afraid, so thats probally why he hasn't mentioned it, TAR isn't a common thing, so unless a doctor has seen a paitent like me with it, they don't know much about it. He has gotten all my files from my old hospital so i'm sure he has read or will be reading through it, and he certainly has all my previous blood test results on computer to look back at. My parents and i have always been aware of the leukemoid reactions. We were told once when i was young that i did have leukemia from a doctor that didn't know my history, but knowing that i have more then normal of those cells in my body has just kind of freaked me out abit. Nobody has ever mentioned it before when i have had other bone marrow biopsies done, so i dont know if it is something that has always been there or something that has just cropped up recently.

I am trying not to worry about it, but there is just that small part in your head that still thinks of all the bad things that could happen, I am trying to be positive, but it is easier said then done i think.

Thankyou Gretchen and Melinda for your kind words of support, i appreciate it.

You're a complicated patient. Just think of yourself as special.

Hey girl,

I was reading all the messages in the forum and came upon yours. I'm sorry to hear your news but let's look at the bright side, right? You're fine right now! I know that you will always have the paranoia in the back of your mind but if your hema isn't acting too concerned, I wouldn't let it rule my life at this point. Also, Ann has a very valid point about your other condition, TAR. I find it very odd that your hema isn't more experienced with it. Have you ever thought of going somewhere else and getting another opinion, maybe to someone who is experienced with TAR? Also, take confidence in the fact that you are ok right now. You're getting CBCs and monitoring the situation. There are many people out there walking around oblivious to what's going on inside them, you know? I take comfort in that fact. I have a blood disorder, but at least I get CBCs frequently that would more or less detect any abnormalities. Does that make sense? I mean it does suck to have to worry, but at least we can rest knowing that we are ok. I'm praying for you and I'm confident that you will find out what is going on. And remember, you can always come here for support! If you ever need a pep talk don't hesitate and send me a message! Good luck with everything!

Natalie

Thanks Natalie,

That's what mum and I were saying last night, but I think it is hard to get it out of your mind, and not just the cancer part of it, but worrying how low my platelets will go now I am not having any treatments apart from tranzamic acid to stop bleeding. I am trying to stay positive and not worry too much and like I said before TAR is a very rare syndrome, so there are no doctors who would specialise in TAR, maybe in the states, but I am in Australia and am not flying all across the world just to find someone who can deal with just the TAR. My doctor has read my old hospital files and I feel very confident in him as my doctor, so I don't feel I need a second opinion at this stage.

Angel,

Is there any way you can find the results of the other previous bone marrow biopsies? This may not be something that just "cropped up" but something you have had due to your TAR condition. I'm praying for you, but I feel your docs will figure this thing out! :0)

Natalie

My previous biopsies were fine, so it is somthing that has just come up recently. I should have mentioned that before. I'll just have to try to stay positive till my next one in a month.

Well, one week down and without treatment, my platelets have dropped to 8, although i don't have many signs of bleeding as i am on tranexamic acid, so unless i start showing any signs of bleeding, i think we are just waiting and watching at this stage to see if the white counts go down without the nplate and pred.

My platlets were 9 on friday, so i have started 25mg of pred till i have my next bone marrow biopsy. The good news is that my white count has gone down from 41 to 20, so he is starting to think it could have been the nplate. I still need to have another biopsy next week though, only bad thing is i may not been able to continue having the nplate if it is going to cause my white and red blood cells to overproduce, i guess we will have to talk to the doctor about that after my next biopsy.

Angel,

That IS good news! I know you felt some relief upon hearing that! I'm sure Nplate had SOMETHING to do with this! Keep your chin up! They will figure this out!

Here is the latest update, I have had to get my head around it all before i could update u all, has been a big week with big news.

After my second biopsy, he has ruled out the leukeumia. My white count has dropped from 40 to 15 after stopping the Nplate and the blasts he called them (the immature cells that can turn into leukemia) has gone down from 4 to 2, so that is really good news, very happy with that.

Secondly, the doctor now thinks it may not be the ITP, but just my T.A.R conditon as my body is not making enough megakaryocytes, so confusing, one second it is ITP, the next it isn't, so he has suggested a few options.

Option 1 is the Rituximab. He is going to talk to his collegues to see what they think.

Option 2 is to have platelet transfusions - which he has advised us that he thinks that may not be the best option as i would need a transfusion twice a week and would exhaust all my good veins which i don't have many of.

Option 3: Waiting and Watching, which at the moment he is not happy to do as my platelets are still under 20 and he likes to treat when under 20. If they get above 20, he may consider that. My blood count today was 13 and i am currently on 12 and a half mgs of pred.

Option 4: Bone Marrow Transplant. He is also going to talk to his collegues and the transplant team in Sydney who would do it to see if they think it would be benifical to me to have done. He thinks if i were to get rid of my crappy bone marrow and have someone else's, it may cure my problem of not making enough megakaryocytes. This is not something i would decide lightly, i have started researching it already and it is a very long recovery proccess and a lot of time in hospital and at home, so it may not even happen, it is just something we are looking into. I have been tissue typed today and my sister and parents will be typed soon as well just so we have all the ground work done so we can go further in the decsision making proccess.

It is a lot of information for my family and I to take in, which is why i haven't been on the last week. I think i needed to try to have a break from it all and not think about it for a while before i could properly deal with it and think about what could be to come and as i research even further on it, i come up with more and more issues that we would need to talk about before making a final decision, anyway thought i would let you all know whats happening and any advise or comments would certainly be welcome as i think i'll need all the help i can get in making a final decision once the doctor comes back with an answer on if he thinks we should proceed.

Lauren,

I am so happy to hear that your dr. ruled out leukemia! That is great that your numbers are returning to normal. I don't quite understand his option choices, but, I am NOT a doctor, which could explain that. I just find it hard to think of
1.) Rituxan
2.) Watch and Wait and
3.) Bone Marrow Transplant

as being 3 EXTREMELY different choices. I'm not familiar with T.A.R. but a BMT sounds REALLY drastic. Maybe I'm wrong, but people don't just decide to do a BMT. It seems like that would be a very serious decision for you to make. Again, just thinking out loud here. I'm happy that your WBC count etc. has returned to normal! Good luck and keep us posted! We are here for support! :0)

Natalie