I started taking peginterferon 45 mg in November 2023 with a platelet count of 860. Since then, my bloods have been checked monthly, and my dose gradually increased. On Monday I will start 180 mg, alternating the dose weekly with 135 mg for a month, as my platelet count is now 665 and my Haematologist was hoping it would be lower. I was wondering what others have experienced. I understand we are all different. Most reports I have read say peginterferon takes time and is a marathon, not a sprint. I would love to know of your experiences, please share. 1 post - 1 participant Read full topic ..read more

Just wanted to share how I unwind after a tough week. More hospital appointments (ugh, I know we can all relate) review of scans from January have now been followed -up… let’s just say I’m back in the land of biopsies again. But today, I decided to fight back with some self-love. Took a deep breath and went to the first beach yoga class of the summer - sunset yoga. Talk about amazing! Stretching with the sea breeze and focusing on my breath as the sun dipped below the horizon – it was incredibly calming. This blood cancer journey can be a real rollercoaster, but it’s important to remember to t ..read more

Hello again, I’m going nuts right now because neither of us drive and he’s a few weeks away from starting chemotherapy for Chronic myelomonocytic leukaemia (CMML), he’s like everyone here vulnerable to infection even before chemotherapy starts. Today someone got on the bus sat in front of him and spat on the floor! How can he avoid contamination during chemotherapy with people like this around. We can’t afford to pay for taxis constantly to minimise risk, he’s already wearing masks and we’ve got plenty of hand sanitizer, but the local buses are often packed and drivers aren’t particularly cons ..read more

What are the real side effects of the Rituximab first infusion? Do you get fatigue after first infusion, for how long? Can you wait and see if you have Follicular Non-Hodgkin lymphoma (NHL), and for how long? I have a swollen liph node undermaxilar. 1 post - 1 participant Read full topic ..read more

Hello, Please forgive me if I’m in the wrong tag but I’m trying to find out what the exact procedure for platelet infusion is? I don’t have enough knowledge of this. Like what is the minimum platelet number before platelets are administered? What other substances are also used prior or post to infusion? Should this ever be painful? How many doses should you have at once? Once you have started chemotherapy how often is an infusion likely to be needed? Is this usually done within the same unit or on the same day? 2 posts - 2 participants Read full topic ..read more

Hi, I love this forum amd i would love to receive the booklets concerning Mylofibrosis. However, i live in Spain, is it possible to send to here? Thanks 3 posts - 2 participants Read full topic ..read more

Hi again. Hope everyone is coping. I had my first biopsy to confirm mylofibrosis on the 20th of February, which was not conclusive. I then had my second one on the 17th of March and I am still waiting for the full result. Today my haemotologist recommends starting on Ruxolitinib, and i am interested in getting feedback from anyone already taking this. I’ve read that one effect is weight gain, which i would find hard, any suggestions, not only on weight gain, but in general. Thanks everyone. 1 post - 1 participant Read full topic ..read more

I have had a fear of heights for some time - years to be exact. You would not expect someone like me to climb to the top of Tottenham Hotspur Stadium and walk to the edge of where the Stadium Cockerel is, but i did just that, with the pictures to prove it. Next thing to do is the Rooftop Walk at the O2 Arena 2 posts - 2 participants Read full topic ..read more

Hi, my father in law has Essential thrombocytheamia diagnosed a few months ago. After a lot of confusing appointments he was put on hydroxycarbamide. He is 81, diabetic and has trouble with his feet through diabetes. I feel they have really messed him around and had him going to appointments at several places and not being clear where he has to go. My husband has taken over, along with a neighbour and have been going to appointments with him as he is very confused and cannot retain information. He gets very tired and very confused and has now got high blood pressure too. His confusion was worr ..read more

Hi I’ve been waiting 5 weeks for biopsy results to comback after an EBUS procedure I have seen my haematologist today and the results are inconclusive but he said I definitely didn’t have lung cancer. I am not sure how lung cancer can be ruled out but not lymphona? I am now having to go for a PET scan and he will biopsy from my collerbone. This all started from pneumonia and being very breathless. I then had a CT which should extensive enlarged lymph nodes of 40mm in my mediastinal. I am worried about the long waits between procedures and the fact the biopsy was inconclusive. 1 post - 1 partic ..read more