Experiences with

Acute myeloid leukaemia (AML)

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.

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.

Please join us for our 2nd webinar in the acute leukaemia treatment updates series. This webinar will update on how AML is treated today and what is on the horizon: how is a therapy chosen, how is prognosis determined and what level of involvement should patients expect in their care decisions. The

In this case, the Sweet's syndrome (SS) developed secondary to acute myeloid leukaemia (AML). In AML, the heart muscle can be infiltrated by malignant leukaemia cells, but SS can also cause heart problems, including myocarditis (inflammation of the heart muscle).

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

Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media

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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Hello everyone, I am new here. I am 27 Male and as of last week Jak2 positive. I have my bone marrow biopsy tomorrow to see whats what. My Platelets fluctuate between 550 & 600 and I have really no other symptoms other then the platelets, I wouldn't have known if not for random blood work. I am going

Hi. I’ve been dipping getting in and out of this friendly and helpful group since I discovered it I have PMF, diagnosed 5 years ago and am having a hard time getting accurate information about my mutation status. The last two BMBs were poor samples - short or crushed cores. Only found out when

For those who could not attend, here are the links to the presentations. Topic: The 4 W's of Enrolling in a Clinical Trial, Laura Michaelis, MD https://www.youtube.com/watch?v=5W9L104Xr6M Topic: New Approved MPN Drugs and Others, Ruben Mesa, MD https://www.youtube.com/watch?v=WdtM0CA-17A Topic: Demystifying

I was diagnosed with MF last year and from around that time I've suffered tingling which has spread from my extremities to most of my body. In case it was made worse by ruxolitinib, I've paused that but the tingling has continued. I've had most of the other tests to make sure it is not due to vitamin

Jakavi and Paxlovid interaction I have been trying unsuccessfully to find information online to my question. Does anybody know if a patient currently taking Jakafi can be prescribed Paxlovid in case of a Covid infection? My husband had intermediate Myelofibrosis. So far the Jakafi has done wonders

Tested positive for Covid on Saturday. I have ET and take hydroxycarbamide so I contacted 111 after logging my positive LFT on the NHS website. I followed all the advice on MPN voice and blood cancer UK. Told that I would be contacted in roughly 24 hours by my local CMDU and given an assessment ,.