To N-plate or not to N-plate.

Very confused here. My new/old oncologist wants to start n-plate asap. Of course my insurance refuses to cover it.(pred,ivig,spleenectomy first). So while they went back and forth I started to research it. What I found was scary.Blood clots/cancer. Both of which I have a HUGE family history of. This week I have been getting call after call from the chemo nurses telling me I have to get to an ER or come in asap cause my counts are very low. I have been presenting no odd symptoms, and am scared.
All my itp journey its been,"I only treat symptoms, NOT counts.". "I have patients with counts below 10,000 that are just fine".Why now is there such a radical change in itp treatment?I am not sure what to do. The office says if my insurance will not cover it, they will make a deal with Amgen. Whatever it takes to get me started. I am scared not of death, but of a blood clot leading to stroke. Or cancer stemming from this, and all just to possibly raise my counts to a safe level. Please if anyone has any thoughts or similar experience with doctors changing their thinking on ITP, please post.
I just hope it's not this new office(my oncologist transfered to it this year), pushing to get a few more bucks at my expense. I know this is a short version, but I am not sure what to do...
Thank you
Arnold S.

Arnold:

What are your counts?

Granted, N-Plate is too new to know what will crop up. All of the treatments carry a risk of cancer, especially the immunosuppressants, but it is rare. I think it is listed for N-Plate as a precaution and I'm not aware that it's actually occurred as of yet (too soon). I wouldn't worry about that too much right now.

As for blood clots, I admit I'd be more afraid of that one, but I just read a new article the other day that stated that side effect has not really been seen. I'll see if I can find it for you.

It's too bad you feel so pressured. How long have you gone so far with low counts?

Hi Arnold. If your not presenting any symptoms, I don't think there is such a rush. You don't juggle knives do you? Of course, with low counts the process may have a sense of urgency, but don't let anyone pressure you into anything. When I did NPlate the nurses contacted a foundation that paid for the drug for me.

Thank you both. That is what is weird. My counts hover between 15,000-20,000. For years he always stated he has patients below 10,000 that he wont treat. Yet here I am with my phone ringing every day w/ the office telling me I need to get in to be checked.The head nurse almost begging me to start n-plate. Should I be worried??? I just can't take the confusion w/ ITP anymore. Some say treat, others say not to treat. Some swear by spleenectomies, others say it's barbaric. Some say n-plate, others say prednisone while toxic is better. I do not know what to believe, think, choose anymore. I worry I will make the wrong decision and regret it either way. Don't treat, and risk cranial bleeding like the lead nurse was telling me yesterday. Treat and get a blood clot, that leads to a stroke, and me 1/2 paralysed... Is ITP "benign" or is it serious? I just can't take the confusion:S
Thank you all,especially you Sandi. You have always been there, even on the OLD boards with helpful advise for me( the itp groundhog).
Arnold S.

Just who is the Groundhog in this scenario?

I can't remember where I saw that article. Dang! I'll keep looking.

I started Nplate in December my counts would not go over 3 unless transfused and theyd go up to 7 then right back down nothing worked for me except nplate....They had me up to almost the maximum dosage but the side effects i had were swelling of my neck to the point it looked like a ball sticking out and my dr wouldnt listen to me I told him I was no longer doing that high of a dose I got that my counts were high but nplate is not supposed to make you have a normal count and i actually had felt better runnin around with 3k platelets, I am now on 480mg a week which is a small dose and I the lowest I have been in the last month was 28 highest 261. and I now have no side effects except every now and then my hands tingle but ill take it its better then being scared your gonna bleed to death all the time. Also you said your scared of blood clots it is not used for you to have a million platelets its just used for above 50 or above and yes u may not know what the future will bring, but do we anyways? not a bad thing its actually been my savior I got my life back! And i hope it continues! =)Again dont be scared all treatments are dangerous for ITP I should know ive had them all..lol keep your head up BUT at 15-20k I wouldnt do it unless they dropped because that is a pretty safe zone.
Thanks
Keli

Kelli- just wanted to say that I agree with your post! My daughter was also on the maximum dose and felt HORRIBLE with the migraines and just overall feeling of "hurting" all over when her platelet count was high. I was so close to getting her off the study because I was getting frustrated with them not dropping her down to where we felt was a "safer" count. We felt that if she could achieve a platelet count between 20-50 on a lower dose, we were fine with that. Less of a drug seems better anyways! After pleading and pleading with the drs and threatening to just get off altogether, they finally decided to go all the way down to the minimum dose and work their way up. It has been a lifesaver! She only had to go up once and then she went back down and her counts have been in the 100s for the most part!

It was just 6 weeks of nightmare when she was on the maximum dose having counts between 300-775 and she just felt absolutely miserable! I think we made more ER visits during that 6 week time period than we did with our whole journey with ITP! (We kept thinking her count was low because of how bad she felt, but it was the opposite.)