Acute Myeloid Leukaemia : Hi. I my husband has... - MPN Voice

MPN Voice

7,546 members10,164 posts

Acute Myeloid Leukaemia

Joe500 profile image

Hi. I my husband has Myelofibrosis-hgb 100, wcc just below 25. When I asked about immature cells, his consultant said they were less than 0.5%. I asked what type and he said the blasts were myeloid, ‘It’s not going in the right direction but it’s slow’. I guess this means he’s slowly progressing to AML. I wonder whether anyone has progressed to AML and whether there is any treatment. It was mentioned at one point that AML is ‘very quick’?? I have questions I ‘d like answers to but can’t ask when my husband is there. I’m waiting to hear from his consultant’s secretary about having a chat with him separately. If anyone can shed light on what to expect with AML I’d be grateful. We are very luck-he had PV for 28 and was fine . He’s had MF for four years now.

12 Replies

I have pv jak2 +my white cell count had been mid to high 20s since diagnosis a year ago until Mondays blood test when they hit 30. The consultant I saw that day just said it goes with the condition. I too am worried about progression but so far haven't been able to get any indication out of any of the Dr's I've seen. My next appointment is in 6 weeks so if the count is still high I'm determined to push for answers. My main question is how high can the whites go without progression. If you find out any info regarding progression do let me know.

Carol

Hi, both your lives must be really horrid right now. I can’t give you any answers. All I can do is send you lots of hugs

Xxxxxx

Joe500 profile image
Joe500 in reply to Wyebird

Thank you so much Wyebird. Considering his hgb is low, he’s doing reasonably well. Just has to pace himself . If I focus on the notion of slow progression it helps -we try do/enjoy what we can when we can and accept the times when we can’t. However I’m sure many people with MPNs find the uncertainty challenging at times. Your kind thoughts really help.

Wyebird profile image
Wyebird in reply to Joe500

You take care xxxxx

I'm sorry I cant give you any information, but I do feel for you trying to care for your husband without questions answered. I hope get your appointment with the consultant soon.

Joe500 profile image
Joe500 in reply to Bluetop

Thank you Bluetop. It is so nice to read your caring reply .

Replying from the US, please note that I have been a PMF patient for over 28yrs. In 1990 when first dx I had blasts which at that time where called immature white blood cells. Over the years have averages 0-5 per blood test, along with a one time high of 9. It's fairly common for MF patients to have 1-5 blasts with this illness. Our MPN Specialist's will take interest when blasts get over 10, and do a BMB. Blasts counts going over 20 is AML, however only about 10-15% of MF patients progress to AML. Lower blast counts are fairly common with us & I would be more concerned about the gene mutations that you're husband has. The mutations can be helpful in identifying the direction of the illness, along with his symptoms being spleen size, night sweats, fatique, and other MF issues. Like MF the only cure for AML is a SCT. I have been matched if needed, but doing a slow dance between age 70, and slow progression of this illness. I have fortune of having the Calr+ mutation which is the kindest type. Also noting comment below it not unusual for our blood counts to go all over the place, Dr. looks at trends over a period of time, rather than one test.

Thank you for this insight. Really helpful. I have MF diagnosed 2 years ago. Thx

Joe500 profile image
Joe500 in reply to Islander47

Thank you Islander47. This information is very helpful and it’s wonderful to hear you’re doing well after so long. My husband is JAK2 positive and had Ploycythaemia Vera for 28 years before progressing to MF four years ago. He started Ruxolitinib a year ago. It’s good to know you have the option for a SCT but of course it is an option to weigh up carefully. My husband is 78 and has been told SCT would not be an option- too risky. I feel reassured that his progression is slow and your explanation regarding blasts is very helpful. I hope you are doing well and thank you for taking the time to share and explain.

Joe500 profile image
Joe500 in reply to Islander47

Sorry but can I also ask whether you have had low hgb /treatment for low hgb? The consultant has mentioned EPO injections but not needed yet. Also not needing transfusions yet.

Years ago, I was treated with epo in the form of Aranesp for over a year. It did help & did increase my HBG during that time, but also increased blood pressure so discontinued use. Epo type drugs mimic a hormone made in the kidneys that help produce red blood cells. It's commonly used in patients with lower HGB. My counts would look normal to a untrained Dr. with the exception of lower platelets, and increase of abnormal white blood cells seen in MF patients. My only current therapy is blood thinners due to blood clots in the past. I have also been offered the use of Jakafi, but due to low symptom burden my MF specialist and I agreed to hold off until further progression. At this point the side effects could be worst then the illness. Our plan going forward is upon progression, Jakafi to help shrink spleen, with SCT discussion at that time. Like your husband I'm pushing the age limit on a SCT, but it will have to be considered if needed. Like all of us MF patients & caregivers we pray for a follow up drug to Jakafi. Take a day at a time & enjoy every day!

Thank you so much . I hope things continue to be good for you and wish you well.

You may also like...