Doc wants me to try CHOP chemo treatment

I don't know what to do. I'm so damn overwhelmed- this is what always happens. First they scramble my brains to the point of near insensibility on prednisone, and then they slap me with a bunch of REALLY IMPORTANT, REALLY SCARY choices that have to be made RIGHT AWAY. I'm sick of this. I've been on pred FOREVER, my brain is so fried I can hardly function- and he just fussed because I forgot to go from 20 to 15 and went from 20 to 10 instead. I was on 100/day for almost TEN WEEKS, jeez I cannot get off this garbage fast enough... but now he really, REALLY wants me back to 15 until my platelets improve from one of the billion or so other things we're trying. SO- here's the crib notes-
I've tried and failed everything, from Cytoxan to danazol to vincristine to Promacta to... oh heck, I forget everything. Nplate worked for years but crapped out last fall, I spent about 6 of 8 weeks, 4 weeks consecutive, in the hospital, getting out most recently on May 4. We tried EVERYTHING- all the stuff that failed still failed, platelet transfusion worked which was BIZARRE, but basically we sent me home to wait in a bubble wrap room for Tavalisse- which does not appear to be working, after about 3 weeks at the higher dose I was still at 7 today. So doc is freaking, wants me to do IVIG on Tues. and Wed. and also do CHOP- it's a chemo drip of a mixture of Cytoxan, Adriamycin which I THINK is an antibiotic but I have to look that up, Vincristine, and Pred. Even though Cytoxan and Vincristine have already failed for me, and pred just keeps me from dying but doesn't actually make things any better... but doc has only had "one other patient I thought would die, and this worked for her". GREAT. Great, that builds confidence. I know that sometimes things that don't work on their own work in combos, but does anyone have any experience with this? Is he nuts? He's willing to write me a 'scrip for Avatrombopag, which while not (yet) approved for ITP is the study drug I took about 10-12 years ago that worked for me then. It's gotten FDA approval for something liver disease related- he said "Oh, in that case, your liver looks bad to me"- but he doubts it'll work since both Promacta and Nplate failed. I say heck, Promacta is ELtrombopag and it never worked at all so maybe AVAtrombopag is just enough different to work on ME. He's willing to give it a shot but still wants to do the CHOP treatment, and if those all fail then I'll be looking for a drug trial I can get into. It would be so much easier if this just killed me and got it over with, but clearly my body is NOT ready to let go so OK, that works too. But damn- I had a brain bleed in the hospital, and then the first platelet transfusion put me into anaphylactic shock and almost killed me, I could really, REALLY deal with a break. Let's not get in to hubby throwing me out in between the nine day hospital stay and the four week hospital stay- ain't he just special? Loser bozo. He let his fear of medical bills rule his brain- for god's sake, I have INSURANCE, you IDIOT. No matter, I'm not going there. Sorry. The rest is enough, eh? Advice on CHOP- or any of the rest of it- is VERY welcome, I am so overwhelmed.

Lib - first of all, I wouldn't let any doctor scare you into any fast decisions. You have a right to take a week or so and think about it. You don't have to be overwhelmed. Second, I have never heard of this being used for ITP. That's one heck of a combo! I can't tell you what to do, but at what point is the treatment worse than the disorder? Benefit vs risk...you have to decide. Breathe, one day at a time.

As for the Prednisone, I know you hate it, but it's only 5 mg's. You'll get there. I'd worry more about the withdrawal side effects than the affect on platelets from that 10 mg. drop. You'll be better off with a slower taper.

I'll answer your e-mail tomorrow. (Took me all day to read it, lol).

It makes sense to try what worked in the past. Avatrombopag looks very interesting! I am going to look into it further. I would totally try it first if I were you. The TPOs can be unpredictable, perhaps its just different enough.? Let us know how it goes. and good luck!
www.bloodjournal.org/content/123/25/3887?sso-checked=true

I'm reading that Avatrombopag is different from Promacta because it doesn't have the risk of liver toxicity that Promacta has. Also it doesn't have the same food restrictions. www.ncbi.nlm.nih.gov/pmc/articles/PMC5971401/
"Finally, it is worth mentioning that avatrombopag is another TPO-RA, which has been licensed for use in thrombocytopenia associated with liver disease. Although further studies are needed, preliminary observations suggest that avatrombopag may confer a particularly low thrombotic risk due to the nature of its metabolites, which would induce portal vein clotting to a lesser extent than eltrombopag or romiplostim."

Just my advice after having ITP for 9 years, its hard to know whats right, but Avatrombopag just sounds like a much SAFER idea than the CHOP.
What were your counts when you had the brain bleed? Like Sandi said, taper the pred- you'll likely feel a bit better when you get below 10mg.

Lizabeth
What a dreadfully torrid time you are having I hope things start to look up soon.
Regarding tapering steroids I don't blame you for wanting to come off them. When on high doses I was off sick from work as incapable of functioning like a normal human being.
When you taper it's quite safe to come down quickly until you get to about 7.5 mg a day then take it very slowly indeed with further dose reductions.
The first time I tapered I was brought down too quickly and it was absolutely dreadful experience. 1mg/day each month is the maximum recommended decrease. I can't do it that quickly. 0.5 mg a month is all I can manage and that involves 2 weeks of about 0.25mg drop for the first 2 weeks then 0.25mg again for next fortnight. This time (my 3rd attempt) I went 3mg/3mg/2mg for 2 weeks then to 3mg/2mg which I have decided to stay on for 6 weeks as finally beginning feel like my old self and do not want to push it too fast.

Regarding CHOP there seems to be a lot of combination treatments going on at present. The problem with this is one never knows which of the components is working.

Hey there, I'm so sorry your doc doesnt understand that you need time to think about all of this, it's your life and health in question after all...

I would recommend asking your doc about taking Tranexamic acid if you're an easy bleeder for a week or so until you make your decision.. I've been on it for 2 months once while my counts were under 10 while i waited for an IVIg trial... it helps a lot (but make sure you don't have antiphospholipid sydrome or other clotting dosorders along with your ITP), I think people with hemophilia and inherited thrombocytopenias use it a lot.

Best of luck to you :***

Well I wound up back in the hospital, turns out I'm OK ish but bad headache had me very worried. I got here Sat., new roomie came in yesterday with an ITP diagnosis. How weird is THAT? But as far as ME, the heme team agrees with me that CHOP chemo is not appropriate. Whew.

Oh good - I'm so glad they agree! It blew my mind that he would try to throw that at you! I'm glad you are okay!

Me too Sandi. I need a new heme but their are no others within 90 min., so I'm looking for one maybe in Richmond. I E'd the help folks here for info on the nearest ITP expert. Meanwhile I got platelets last night which bumped me from 3 to 12 overnight. Last transfusion kept me up for a month! And we stopped the Tavalisse due to no platelet response but BP running 200/105-can you say YIKES!!? I hope to go home tomorrow. A mere 5 day stay. So I'm happier. Until I remember they also upped the Pred to 100 again- AARRGGHHHH!!!!!!!!!

I'm glad to hear you feel happier- but 100mg prednisone-yikes. That would make me unbearably crazy. Hope you can find a new hematologist who is an ITP expert-

Lib, regarding ITP experts, I know Baltimore and NY are not that close to Richmond, but I hear great things about the Hopkins and Sloan centers. We haven't been (yet?), this is from a colleague who was successfully treated there as a child.