Timothy-side effects from Nplate possible

It looks like he's having some nausea related to the Nplate. He was throwing up tonight. He had some last week, and I thought maybe it was just a bug, but he's had it more this week too, so I think its the Nplate. Just thought I'd let you all know. I know there was someone else that had some nausea too last week or maybe a few weeks ago. He says he's getting "alot of bruises" too, all over his back and legs-but he won't show me.

Oh crap - I hope things get better soon.

Michelle

Caitlin also had nausea alot while on Nplate, but then it finally subsided about 4 months before she was taken off the drug. Part of the nausea though, was from the bad headaches she was getting. She got them right on the dot, 3 to 4 days after getting the injection so they happened around the same time each week. I had to document every single symptom and medication we gave since we were on the study and the most consistent symptoms were headache and nausea or complaining that her stomach hurt. She was taking Tylenol a few times a week for quite a while and this always helped. I hope Tim doesn't continue this every week, but if he does...find something that he can take that helps him and have it readily on hand so that he doesn't suffer with the symptoms. (Caitlin took Tums for her stomach and I was fine with this because it helped her get her calcium too.)

Oh dear, I hope he is feeling better today. None of these things seem to come totally side effect free do they. I would think its a question of whether the side effects are worth the benefits. I hope he continues to be able (and willing) to have this treatment, because it seems to have improved things a lot for him. How is the oxymoron's count this week anyway?

Ali

No new counts since Friday (108k). He has bruises, though. He's not sick today, which is good. It was day four after the injection, like Caitlin. I'll have to inform the hemonc.

I have had nausea just about every week of it and last week was when i had vomiting as well and ended up in hospital because of dehydration because i couldn't keep anything including liquids down. I thought it was a bug until i got the nausea this week and hearing Tim and Calitlin have had it too makes me think it is a side effect. I think the nausea this week has been from bad headaches that turned into migraines too. My headache came around day 4 as well.

Hi Donna

I am pleased to hear that Tim is feeling better. What does he think of the nausea as a side effect? I am not sure that I could deal with that every week, but then, I am a wimp when it comes to illness and especially sickness! I hope that his counts haven't dipped too much either, because he must have had such a break the last 4-5 weeks and it would be a shame if it ended. Fingers crossed anyway.

Dougie is also still covered in bruises, although he seems to be feeling better and not tired. The school holidays might be helping with the tiredness too. He has less petechiae than he has done for the last few weeks, although he does have some in his mouth (now that I've started looking when he says he has an ulcer, they are clearly not ulcers - doh!) and his gums are bleeding when he cleans his teeth. He has a doctors appointment in Manchester on 12th April so I will be mentioning all his recent problems then. The last time he went, he'd had a really good few months, but the last 3 don't seem to have been that great.

His lastest dip seems to have lasted longer than previously. Although, thinking about it, his count is almost certain to improve before 12th April - don't kids ALWAYS get better before they get to see the doctor???

Ali

Ali,
You're right, they do seem to get better right before going to the doctor. It must be hard not to have any treatment for him. I would hate not trying anything. I hope that if you are wanting something, they will give it a try for him. What are you thinking in this regard? I can't remember if you've said whether he's ever had any treatment at all..has he? Tim had a little more nausea last night, but he seems to be tolerating it alright. His hemonc is good about giving him meds for nausea, so we will ask tomorrow about it.

Argh, you have asked a question I don't know the answer to. If his count is still going up and down reasonably and sitting in the middle for most of the time, I am really not into treatment - think it is probably not worth the risk for the little bits of down. If however, it is in the 20-40 range as it has been the last few weeks, I don't know. The last few weeks really haven't been good for Dougie. The haemotologist Dougs sees is part of the Promacta trial, but I am not at all sure about this as a treatment. Prednisolone didn't really do much for Dougie the last time he had it, but maybe a shorter sharper pulse as suggested by this haematologist might work better. IvIG is probably my least worst - if you see what I mean. I've asked Dougie about it today, and he thinks that ITP is only really a problem under 30 because he can't play sports and he feels tired. My husband is equally uncommitted either way.

So we are all basically sitting on the fence, and as such, I would guess that we would be more no than yes. But it depends on how the next few weeks go. Gotta hope that the usual thing of getting better by the time you get to the doctors works in this instance!!!!

Ali