Promacta

My 18 yo daughter's platelet count is 8. I guess it is pretty optimistic to see this as good because it was <5 last month. Last month when it dropped after rescue treatment for a GI bleed the doctor thought we should consider treatment, and he was leaning towards TPO When we went today he and another hematologist spoke with us about starting treatment with Promacta.

When her counts were very low last winter she had many nuisance symptoms. She was bruised from head to toe,petechiae all over, lips cracked and bleeding, gums bleeding. Her nose was not dripping blood but she did have post nasal bleeding. Worst of all was her overwhelming fatigue and headaches. She had a couple of blood blisters in her mouth the week prior tot the GI bleed.

Now she has some moderate bruising and gum bleeding. No petechiae. I can see fatigue coming into play again, she is going to bed earlier and starting to drag. But she is not feeling anywhere near as badly as she was this past winter.

I am kind of struggling with the decision. The doctors are telling me there is no right or wrong answer. A part of me wants to just watch and see. But she has a lot coming up now, prom, graduation, college. I don't want to risk her missing out if she has bleeding and needs rescue treatment. And we had a discussion that Promacta may increase her counts but it may not change the quality of life issues like fatigue and headaches. The studies suggest it will but there is not enough data collected yet. (They did ask her to participate in data collection). She had heavy menstrual bleeding initially controlled with BCP and the GI bleed. Realistically the only way to know how often she could have bleeding issues would be to watch (would it be once a month? once a year? less?). I do know I would prefer to see her not as beat up and fatigued as she was 5-6 months ago. And they also said that even if her counts are up and she does not fell better then we can always reassess the plan.

My daughter wants to go through with it, and she would rather Promacta then having to go to the office once a week for the NPlate. So fingers crossed that insurance approves and it all goes well.

Terri:


If it matters, I think it's a good decision. Treatment choices are always hard, especially for your child. If I were in your shoes with my daughter, I would more than likely choose to try Promacta also. The success rates are high, remissions do occur, and side effects are usually few. It seems as though many people go through the whole line up only to end up on the TPO's anyway. Might as well skip all the toxins and side effects and go straight to Promacta. Hopefully she will be able to get off of the BC pill so that the clotting risk goes down.

Good luck with your decision.

Thanks Sandy. The choice to go with TPO is the best option, I guess. The potential for side effects or long term problems seem less than many of the other drugs. I am worried about the cataracts though, and also what we may discover after patients have been on it longer term -or the effects 20 years down the road. Interfering with bone marrow production does make me a little nervous.

That being said though if there were no choice I would probably feel better. I am struggling with the fact that right now we are in this grey zone. She may do well and I will be happy that we took this route. But if she ends up with lasting side effects then I will always wonder if I should have continued watching until the decision was clearer.

Or maybe by treating her I am crossing a bridge, some reality that I have not quite come to terms with.

Hi Terri,
Reading your post with interest & caring for you in this time of angst.
Can't offer advice as haven't been there yet . . but I certainly trust Sandi's opinion & hope all goes well for your daughter.
Big hug from Down Under.
mj

Terri:

I think you can take comfort in the fact that you have protected her from so many side effects already by holding off and knowing exactly when to step in. That is a very hard line to walk and not a line that many would even attempt. At this point though, I think you know that for her sake, in order for her to participate in upcoming activities without the ITP worry and fatigue, it may be time to intervene. I know that the long-term side effects are worrisome, but the track record for Promacta so far seems to be good. I also worried about the long term side effects of the medication we used for my daughter's Graves Disease. I'm still not sure if it was the right choice because we don't know how things would be if we'd chosen another route, but we made the decision together after becoming informed and that's about all any of us can do.

You've done your research, you've never blindly reacted, and you stay on top of things. You're doing the best you can possibly do for your daughter. No one could do any better than that.

Meredithjane and Sandi, thank you for your support.

Last night when I was considering it I thought about something the doctor said - if she has bleeding symptoms we have a treatment plan which she responds to. That is a great thing, however that plan involves very high dose steroids, IVIG and prednisone. Thank God it works when needed but I would really prefer not to have to go that route again. That gave me clarity and peace of mind in going forward with the Promacta. So now just waiting to see how the insurance routine plays out.

Very good point! Start treating now with the seemingly lesser evil before you have to bring out the big guns.