Bone Marrow

[BrandyHorse]

Hi everyone. I am seeking your helpful advice once again. My daughter was diagnosed with High Serous Grade 3 Ovarian Cancer in June 2023 with full debaulking surgery in July 2023. She is currently on 100mg Paraparib which has had an effect on her haemoglobin levels but appear to have now settled. Her scan yesterday showed no evidence of disease (thankfully) but her CA 125 is going up and down between 48 and 60. Her Consultant says that there could be a problem with her bone marrow now being affected and they are not sure why. She has been referred to Haematology now. Good news one side, not so good the other. Has anyone else experienced an issue with their bone marrow at all? Her white blood cells are fine. She also has too much iron in her blood most probably from the blood transfusions. Thank you all. Much love xxxxx

[hazelnut50]

Hello, Hopefully your daughter will continue to get stronger and better and overcome these hiccups. Did she also have chemo after debulking? Not a doctor here, but when my iron levels were getting low during chemo, I thought my oncologist and GP would prescribe iron pills, but then I heard that they had to be careful with this because some(?) cancers like iron. So they had to walk a fine line of how low I could go before they needed to take action, and so far, they have not needed to do anything. How low were your daughter's counts? And how many times did she have transfusions? If this iron transfusion and cancer topic hasn't come up yet, I would ask your team about it. I'm sure they were on top of all their decisions concerning her treatment, but it surprised me as a layperson. Then there is the topic of feroptosis that has gained quite a lot of attention recently. For me, during and post chemo,I have also modified my diet to cut out sugar and high carbs, and I do intermittent fasting to give my body the rest it needs and restrict intake of unhelpful foods, following best practices for cancer patients some of which I have picked up from this amazing Ovacome/Healthunlocked community. I don't understand why people in this day and age say "eat what you want," during or after treatment. I am also following a 'complimentary treatment,' according to the 'metabolic approach,' to target cancer pathways through CARE Oncology in London as a 'compliment' to my ongoing 'standard of care' treatment post-chemo. Good luck to you and especially to your daughter. It must be very hard to navigate this for her/with her and stay sane. There is so much to know at every stage of this cancer journey. This link may not at all be relevant to your situation, but I found it (and other medical journals on blood transfusions and cancer) interesting to learn about --> for my own situation as well as research on 'feroptosis.' ncbi.nlm.nih.gov/pmc/articl...

[BrandyHorse in reply to hazelnut50]

Hi Hazelnut 50. Thanks for your response. The link looks very interesting and I shall indeed use it. Take care all all the best for the future xxx

[K95m]

Hello brandy horse

I have been on Niraparib (Parp inhibitor) for 6 years. I too had issues with Red blood cells. I was referred to a Haematologist, They performed a bone marrow biopsy which was normal. They also performed genetic testing which showed a mutation on a particular gene, very likely due to the Parp. I continue to have low RBC but normal HB.

I see the Haematologist every six months to monitor this gene mutation and keep an eye on my bloods. They say this is a long term side effect of the PARP . At the moment they feel the benefits of the PARP outweigh the issues with the mutation, however if the mutation continues to a level which could affect my health , they would have to consider stopping the PARP.

It’s good that they have referred your daughter to the Haematologist as they are definitely the experts in this field. I am very lucky to have my treatment at UCH in London as the Oncologist and Haematologist work closely together .

Hope this helps and good luck to your daughter.

Kay

[BrandyHorse in reply to K95m]

Hi Kay. This is really helpful thank you. It’s really great to see that we are not alone with the issues of this drug. I wish you all the best for the future xxxx

[K95m in reply to BrandyHorse]

Thank you.