Experiences with

Acute leukaemia

Audience: Those affected by acute leukaemia treatment relapse, CLL patients whose current treatment has stopped working, or whose disease has returned from previous treatments.

After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.

Leukaemia Advocates Network and Leukaemia Care.

This is being organised as a collaboration between the Acute Leukaemia Advocates Network and Leukaemia Care. You can register here: https://us02web.zoom.us/webinar/register/WN_voADau9YRjaWQof0DN8D-Q

Leigh Wood, Team Lead and Senior Clinical Trial Practitioner, University College London Hospitals NHS Foundation Trust Sophie Wheldon, CAR-T treated acute lymphoblastic leukaemia (ALL) patient

We will be joined by: Jules Cuthbert, Specialist Pharmacist – High Cost Drugs, University Hospitals Bristol NHS Foundation Trust Hayley Clifford, Nurse Specialist – The Department of Immunology, Birmingham Heartlands Hospital Esther Beswick, acute leukaemia patient Nick York, chronic leukaemia patient

We will be joined by: Jules Cuthbert, Specialist Pharmacist – High Cost Drugs, University Hospitals Bristol NHS Foundation Trust Hayley Clifford, Nurse Specialist – The Department of Immunology, Birmingham Heartlands Hospital Esther Beswick, acute leukaemia patient Nick York, chronic leukaemia patient

I’ve had pv for 12 years. 3 months ago it progressed to acute myeloid leukaemia with a statistical prognosis of 6 months. As I am 73, I decided not to have chemotherapy.

Luminita Keating, CAR-T Clinical Nurse Specialist, Addenbrooke's, Cambridge University Hospitals NHS Foundation Trust Deborah Sims, CAR-T treated chronic lymphocytic leukaemia (CLL) patient Sophie Wheldon, CAR-T treated acute lymphoblastic leukaemia (ALL) patient

Be aware that it's quite long at 90 minutes but you can skip the acute leukaemia parts. https://www.youtube.com/watch?v=1TQjSqyikt0 Jackie

My husband has been on venetoclax for 3 years and a recent bone marrow biopsy shows cancer is growing and is up to 60%. His oncologist wants to put him on Pirtobrutinib, but it isn’t available yet. Does anyone know we can gain early access to this drug? He is 76 , diagnosed 13 years ago. He was

Husband has PV and MPN currently on Ruxolitinib which for him has been amazing and life saving. Only drawback is having had some skin cancers. Presently he has a lot of sores on head and face that will not clear and having problems with doctors not recognising that these sores and scabs can yet again

« No phlebotomies were required to maintain hematocrit <45% in the 6th year of treatment in 81.4% of patients receiving Besremi compared with 60.0% of patients in the control arm (p=0.005). Depletion of the JAK2V617F alle burden, which may lower the risk of progression to myelofibrosis, was observed

Good morning everyone, I have PV. I am 75 and was diagnosed about 5 years ago. For the most part I feel fine. My Hematologist would like me to try Jakafi. I had a bad reaction to Hydroxy and Anagrelide. Currently on aspirin and clopidigrel (Plavix) and other than lots of bruising, no other issues

85, been on 1000 mg/day of Urea for five years fighting essential thrombocytosis. Now have a nasty ankle ulcer and my doc wants me to switch to Jakafi....disinclined to do that until I exhaust all the alternatives (cost, worry about taking a drug that kills RBC when I'm already ~40% below the lower

Hi Everyone, I was diagnosed a year and a half ago with polycythemia vera with a negative v617f mutation and a positive Exon 12 mutation. The literature says that about 95% of the p-vera cases are positive for v617f while 3% have one of many Exon 12 mutations. The disease presents itself a little

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Another good resource posted by our friends from the MPN Research Foundation. 2022 National Comprehensive Cancer Network Guidelines - Myeloproliferative Neoplasms. Nice summary on a number of MPN topics written for patients. Great for someone new to MPNs, and a good review for all. https://www.nccn.org

Edited to show PV - Rux (rather than MF-Rux ) effects info I started Besremi INF last Feb, as discussed in recent posts. My Dr said it is good medicine. But his 1st choice is Rux. He said it has fewer side effects and is best for symptom relief. I have PV Dx with ET features. I opted to go with

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