Experiences with

Acute leukaemia

will be needed a stem cell transplant after my third round for Flagida Chemotherapy. Has anyone had similar?

As my father died 3 days after his diagnosis of Acute Myeloid Leukaemia I am feeling concerned about the rapid changes I am experiencing. I have known my haematologist for over 14 years as he was also my husband's consultant for his Mantel Cell Lymphoma.

"CDKI-73 is currently being investigated in Phase 2 clinical trials in patients with relapsed and therapy-resistant acute myeloid leukaemia, an aggressive blood cancer."

I’ve been on Ruxolitinib now for just 4 weeks, I’ve been getting nose bleeds on and off, but lately developed a cough, not phlegm, just a heavy dry cough. Has anyone else experience this please. many thanks 🙂

"The JAK2 V617F mutation is the most common driver gene in myeloproliferative neoplasm (MPN), which means that the JAK/STAT signaling pathway is persistently activated independent of cytokines, and plays an important part in the onset and development of MPN. The JAK inhibitors, although widely used in

« Patients with polycythemia vera (PV) achieved greater hematocrit control and improvement in symptoms with ruxolitinib compared with best available therapy (BAT), according to the results of a systematic review and meta-analysis published in the journal APMIS. Ruxolitinib was also associated with higher

I had a face to face meeting with the Health Board CEO. To start with he quoted the Patient Experience answers to my concerns but I soon stopped that showing photographic evidence that they were lying. As the meeting progressed he became very quiet and obviously shaken. His PA took a lot of notes and

Hello everyone! I will be grateful if you share your experience of combining anesthetics and Jakavi. I have myelofibrosis and take Jakavi 15 mg 2 times a day. I will have an open surgery for an inguinal hernia with anesthesia with novocaine (procaine) very soon. I wanted to see if there is an interaction

Post by MPN-MATE Admin » Thu Nov 07, 2024 10:21 am Morning everyone... I recently received this new article that emanates out of a German Laboratory in Munich. It purports to have more accurately found a way to simplify the MPN Tree of Classifications of MPN illnesses. It uses computer modelling &

Hello I have had a blood transfusion a few weeks ago. I have been on Jakavi for 3 years and my RBC count dropped, I have circulating blasts, but only 2% or so at present, and I got very weak and breathless with the anaemia. I feel much better since the transfusion, but am wondering how long this is

Hi - been on hydroxycarbamide for about 4 months. Started feeling hot - but no fever and skin normal..anyone else? Nurse says not usual side effect so perhaps drug interaction ( I take other meds)

Hi Crew, So I’ve been taking Ruxolitinib for a while as I have MF. I’ve just been told I have very hight cholesterol and am pre-diabetic. None of this in the family. Google states cholesterol could be from Ruxolitinib. Any wisdom or advice please? Also I’m due to fly

I just got a possible Dx of tooth resorption on a tooth. Simplified this is when the immune system dissolves tooth materials from inside or outside. Usually a root canal or implant is required. I will post updates. In searching info I came across this report implicating both Peg and Rux for different

Hi all after being diagnosed with pv for 11 hrs taking hydroxicarbimide and having phlebotomy the last Yr and a half treatment hasn't been working so ruxolitinib was put forward 4 weeks ago so been taking for about 3weeks or so blood levels have fallen spleen pain has eased but haven't

I recently met with my specialist. I've gone to a number of doctors and tend to dig pretty deeply into the data. But I do love this one, incredibly knowledgeable, and in conjunction with my own research and this incredible website and group, I feel like I have some control back. I strongly pushed to

As you may recall, my daughter is also JAK2v617f positive, currently showing as ET. My son has idiopathic erythrocytosis, no known mutation. My next younger brother was diagnosed with a high-grade Non-Hodgkin's B Cell lymphoma several years ago. Thankfully, his lymphoma was successfully treated with

Hi all, to those of us that travel to see your MPN team ,I've just successfully applied for a grant for help with travel costs from leukaemia Care.They have given£150 so that will definitely help with the costs so far.It's open to all blood cancer patients they just needed a copy of my diagnosis letter

So, with a diagnosis of ET Jak2 positive, my first treatment in 2018 was Hydroxyurea, which I took with many side effects until early this year when I could no longer tolerate it. My platelets never went below 495 on Hydrea. Lots of side effects, mostly gastrointestinal, and lost 30 lbs. that I didn't

So I was at the Hemo/onco last week. I kind of jokingly asked him, "So do you think I will live another 10 years?", and he said "Maybe". Now before you get mad at him, he did, of course, quantify that no one knows, and no one can predict the course of the disease exactly yada yada [i]BUT,[/i] he thinks

After about 5 years of changing diagnoses, CML, PV, ET, my husband has been told his condition has progressed to MF, based on rapidly enlarged spleen and latest BMB. Our appointment with the consultant was a bit of a blur after the shock of her saying his life expectancy is approx 80 months, so we have