I think I must have a low platelet count, which came on really suddenly. My arms and upper chest are suddenly covered with bruises,. I'm on Niraparib but I haven't been on it for long. Please has anyone else had this experience? How serious is it? Also what treatment did they do? I'm feeling scared as I reported my bruises on Saturday but (understandably of course) no one has got back to me yet.
Bluetilly
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Bluetilly
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hi Bluetilly, I am not sure about the symptoms and whether it is related to low platelets. But low platelets is a known side effect for parp inhibitors and a common CBC test will tell you if they are down. I am not sure if you need to be prescribed to seek it, but where I am, I can get it done without prescription. Low platelets means clotting after injury will be an issue and overall you should be careful about injuries. Transfusion is the best option for very low counts. But I also understand that platelets are very easy to get high as well, compared to say iron deficiency. Hope you get to Know soon what is going on.
Hi, I don’t want to alarm you but I had extremely low platelets on Niparib and had to have a number of platelet infusions, which are pretty straightforward so no worries there. However, low platelets can be very serious and you must please contact your nurse or trauma centre tomorrow and they can do a blood test and see how low they actually are and, if required they will give you a platelet infusion. Please be extremely careful what you are doing and make sure you don’t fall as any injuries can have serious effects.
I wish you well on your journey through this hateful disease. Love and blessings Lx
thank you Lirene, that was excellent advice and I have now had one transfusion and am in the middle of the second. They admitted me to hospital as count so low!
A low platelet is not good. I do papaya and papaya green leaf extract and it helps but your team needs to be informed that kind of bruising is not ok. Hugs from paris
Thank you all so much. I really value your support. I will phone the Cancer Nurses straightaway. What a wonderful group this is ... not sure how I would have got this far without you lovely ladies!
yes def ring and ask them specifically what your platelet count was on last blood test. I did not ask that question and the triage system did not admit me to hospital. However I had blood cards and went for a blood test which picked up the low platelets and I got a transfusion.
thank you Rosado that is very helpful advice. I have tended never to ask what my actual blood count is, and medics just say it’s up or down, but I do need to be more proactive I guess because knowledge is strength.
Hi love, that is brilliant and I do hope you feel better very soon. I was lucky my hospital have an oncology trauma unit and I had to go every day for over two weeks so I was pleased not to be admitted. Although every day when I left they said be very very careful ! In the end I had to come off Niparib and all Parps as each one we tried was making me worse so I am now on ‘watch and wait’. I am praying for us all with this hideous disease and praying that a breakthrough comes very soon. Take care love, you are in my prayers. Bless you Lx
Lirene I am so sorry that no Parps now work for you. But there’s alwsys the hope, isn’t there, that an effective drug will be discovered soon, or that we may avoid a reoccurrence? I find praying helps too, as I believe there is a plan but we just can’t see it yet. God bless xx
Hi love, thank you so much. I pray a great deal and know the Lord is listening. I am stage 4 inoperable but believe the Lord is helping me constantly. I am pleased you are a believer our Lord helps us and looks out for us forever. Bless you love, take care and never give up. Lx
Yes! Still in hospital waiting for my platelet count to start going up. It’s all a bit depressing really as this problem is entirely due to niraparib, and probably to being started on 3 per day, the highest possible dose. If I had been on lower dose this might never have happened. But I imagine getting dose right must be difficult. I know I will feel more positive once I can go home xx
Please stay positive love, I was on a low dose of Niparib when it happened to me. You are being sorted now and thankfully will feel better very soon. My thoughts and prayers are with you Lx
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