Hi there, I’d be interested to know what frequency others have had venesections. Am now 6 years post ALL diagnosis treated with chemo, no transplant. My bone marrow was damaged by the chemo so with the exception of my HG my counts remain below normal, and probably always will. The consultant only wanted me to have venesections once a quarter although that got extended to every 4 months to help me psychologically as my post cancer anxiety is so severe and I was finding return visits to hospital so hard. Recent blood test was on a par with my normal, but I’m really struggling with fatigue, which limits my activity which in turn drives up my anxiety. I’m wondering if the high ferritin (+1200) is driving the fatigue and if I should look to get the frequency of venesections increased to give me more energy. I’ll talk to my consultant but wondered what others have experienced. Thanks
I cannot answer your question @JoJo56 but please let us know what your consultant says.
Have you had any help with your anxiety?
The Blood Cancer UK have some handy hints Blood cancer: mind and emotions | Blood Cancer UK
Your anxiety sounds horrible to live with.
Some hospitals have Maggies Centres or similar services and Macmillan also have some services.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
I found counselling helped me.
I hope someone can share their experiences of their venesections and their frequency.
Look after and be kind to yourself
I started on every 2 weeks, moved to once a month. My starting level was over 2500 now about 1600 being having them for about 9 months and is just something that takes time. I got them moved to my local hospital so loads easier. Next one is on Monday morning, take about 10 mins so not a massive deal for me. I had Acute Myeloid Leukaemia not sure that makes much difference. Having over a 100 plus blood transfusions during treatment didn’t help but I don’t feel fatigued with it.
Yes I’ve spent hours doing CBT and chatting with counsellors but I still struggle with it. I think the sudden emergency diagnosis 6 years ago means I know the worst possible thing you can imagine can really happen so I expect the worst and over analyse everything. Hospitals just trigger thise sensitivities. But I know what I need to do to chip away at that so I will keep going x
Thanks for that. 100 transfusions? Wow! I thought 40 was a lot. Glad to know the ferritin is coming down. I’ve hardly seen a reduction in mine so far. I seem to cope with the procedure OK so at my next review I’ll ask if the consultant thinks its worth increasing the frequency. Take care
I had over 200 platelet transfusion on top of all that blood in 7 months! The nurse who does my venesections says she has being doing them on a guy for over 5 years so I’ve just set myself for the long haul. Having a cold or other illnesses can throw the level out so they only take it every few months.