Petechiae

[clifflee]

Anyone getting Petechiae red spots on their body? Apparently it’s the capillaries collapsing. I reported this to my CNS on Monday and am seeing my Haemotology Consultant tomorrow.

Am 2 weeks into Ibrutinib and Venetoclax, my platelets were 76 on Monday which although low is classed as ok and my HB was 117 ok again.

The spots are quite dense on my upper legs, but elsewhere can be quite sparse, I even have them on the palms of my hands…

They look quite concerning to me but my CNS and a doctor - not Haemotology - checked them and weren’t too worried.

[albie58]

Hi!

I got quite a few when I first started with acalabrutinib. My platelets also dropped to 79 but slowly made the climb back up and at last check are 128. I am not getting petechiae as much as I did when I first started, but a few pop up here and there occasionally.

[clifflee in reply to albie58]

Hi Albie58 Thanks for that, at least I can see that I am not on my own. Cliff

[Sepsur]

yeh , I got them for a while when I was on I & V 😊

[clifflee in reply to Sepsur]

Hi Sepsur, Thanks for that, at least I can see that I am not on my own, someone else has said the same. Cliff

[DRM18]

Super common, clifflee!

--Dave!

[Poodle2]

I think it's not uncommon but I also think you did the right thing to contact your CNS. My platelets dropped to 68 when I started treatment. I was having random nose bleeds for a few days. Like you said - no one was worried, I think they expect it and unless below 10, they would not do anything about it. They bounced back really quickly, I think in less than 2 weeks they were in a normal range.

[clifflee in reply to Poodle2]

Thanks Cliff

[dmmck]

I had petechiae several places on my body when I started ibrutinib five years ago. They come and go at random times. You are not alone.

Diana

[clifflee in reply to dmmck]

Thanks Cliff

[DoriZett]

I had it on treatment with Acala - was told it was a cosmetic issue only. Other than unsightliness - it is not harmful. Hope the Acala works as well for you as it did for me.

[clifflee in reply to DoriZett]

Thanks

[thompsonellen2]

I had them (and a lot of them) for years on my hands, trunk, and legs until a couple of weeks ago when I switched meds recently. Sometimes if I scratched myself, I'd see them where I'd scratched. I got used to them. It's weird to all of a sudden have clear skin.

[clifflee in reply to thompsonellen2]

Thanks

[BookLovah20]

I have them on my upper legs, thighs and arms. I understand it can feel alarming at first sight but I have been reassured by my oncologist and dermatologist that it’s to be expected.

[clifflee in reply to BookLovah20]

Hi Booklovah20, thanks mine are just starting to fade after 10 days, my oncologist also said they are nothing to worry about. I have them in the same places as you. Good luck with your treatment.😊Cliff

[KikiBoo]

My dad is taking Ibrutinib for about 18 months, and just last week started to get petechiae on both of his legs and upper arms. He said some of them looks lighter and some just look the same. How long does it take yours to fade away? We also talked to his hematologist, and he said it could be from bruising from ibrutinib. If improving and not bothersome, he would continue monitoring them.

[clifflee in reply to KikiBoo]

Hi Kikiboo, I had so many problems with side effects within 6 weeks from Ibrutinib I had to stop taking it, the Petechiae mostly vanished within a week, although I still have the odd bits.

I see my haematologist In 2 weeks to see what my options are. Best wishes to your dad I trust you are spoiling him lots!

[KikiBoo in reply to clifflee]

Clifflee, thank you for your response. I am sorry that the ibrutinib is not working out for you. As for my dad, so far so good. It does has some side effects like tiredness that need daily afternoon nap, mild joint pain here and there, higher blood pressure that need medication adjustment and now the petechiae. Other than that, it keeps his Waldenstrom Macroglobulinemia condition controlled. He will also have a tele-visit with his doctor tomorrow, so we will ask more about the petechiae which I hope they will fade away. I hope you will also have a good visit with your doctor in 2 weeks and will have alternative treatment options if needed. Take care!