Hi Everyone, I'm panicking a bit as I got my spleen ultrasound results and I've been told my spleen is slightly enlarged on the upper side of normal. Diagnosed in March this year and only on Asprin. Platelets at last count were 588 other bloods have been ok. BMB results not back yet. What does this mean? Is it normal to have ET and have a slightly enlarged spleen or does it mean I'm progressing to MF? Thank you so worried! Bx. UPDATE: I just thought I would give an update with a my final results as the process was not straightforward and it might be of interest to others going through this process themselves. It was not straightforward because after my BMB there was a question over whether I had preMF or ET. I did not know at this point that it can be sometimes difficult to distinguish between ET and PreMF during the diagnosis stage. This was due to reticulin and the pattern and distribution of my megakaryocytes in my BMB. Due to this my results were sent to a specialist Oncologist pathologist for a second opinion who confirmed that I definitely had ET. So I currently have Mild ET with a slightly enlarged spleen at 12.7cm. With Grade 0 and Grade 1 fibrosis in some parts of my Bone marrow. When I asked about this I was told this is down in part to interpretation. My haematologist also carried out a chromosome test which came back clear. I already knew that my AB is at 20% and my platelets range from 505 to 588 and the latst reading was 578. All other bloods normal at present. I have had no TIAs or clots etc. So this is my baseline. Happy Holidays. Bx 
Spleen slightly enlarged on the upper side of no... - MPN Voice
Spleen slightly enlarged on the upper side of normal. UPDATE on results.
Hey morning Brona...
Yes, it can be a tad disconcerting, and especially so in the earlier,stages, where one is still awaiting the results of some further testing etc...
I am guessing that you are on the south side of 50yo (?) Hence, the Aspirin only approach at this juncture, (that too is a response of many doctors treating younger patients).
I do understand how difficult it is waiting on results & feeling like you are in limbo-land, & that can be very frustrating... However, I believe that you will need to have those results before you allow yourself to become too overtly anxious...
By the way, (& worse case scenario), if they were to determine that you might be early stages MF, then I am sure that you should be able to access Ruxolitinib (Jakafi), which is very effective for most people at reducing Spleen enlargement (myself included). There are many people w/ MF today who are still around after having been on Ruxolitinib for quite some time, hence all would not be lost...
Me personally, I fully intend on living forever, and continuing to see improvements in my MPN due to my dietary regime coupled w/ regular exercise & some daily intermittent fasting...
My first BMB, showed I was a Grade2 level of Bone Marrow Fibrosis. However, after commencing my anti-inflammatory diet/exercise/fasting etc... (& Ruxolitinib), my last BMB showed a reduction down to Grade1...
Stay strong & positive Brona...
By the way, hope to se you this time at the next MATES Cafe Catchup, (this Sunday Oct. 11).
Best wishes
Steve
Hi Steve, thank you for taking the time to respond. I do plan to be at the catch up on Sunday. I have to say I have found it quite hard waiting for results and you are right I am 44. I had my bmb 5 weeks ago and dont have those results yet. I did get my AB and it is 20% from my first initial blood test in Feb. I asked what this meant and haven't really got an answer other than it is at the lower end. I had my spleen ultrasound last week and was told at the time that it was within the normal size range and wasnt enlarged. So I was delighted. Then today when chasing up my bmb was told my spleen was on the upper end of normal, slightly enlarged. I am trying to hang in there until I get the rest of my results but I am worried tbh. There may also be a problem with the way the lab sliced my bone sample to look for fibrosis. I have a six year old daughter and I just want to be here for her. Thanks again B
Hey Brona...
Very cool... Six is such a wonderful age w/ the little ones... Don't worry too much just yet girl... Besides, if you are doggedly determined, I am sure that you'll be there for her... 
It's tough having to wait for results I know, but stay strong and positive in all you do ...
BTW, you say that you already have your Allele Burden Frequency, (ABF), and that is was 20%, is that correct? If so, which 'Driver' mutation do you have Brona, JAK2, CALR or MPL? Do you know?
Having that information can be really useful to know, and especially so for keeping track of how you might be progressing over time... Just remember that reducing one's 'Inflammation' can be achieved through an integrated & more holistic approach... Diet, some daily fasting, and exercise really can play a significant role in maintaining our longevity, in my view...
Great that you are coming to the Cafe Catchup too, and this time I will be visible, I promise... 
Stay safe & well...
Steve
Hi Steve, thank you. You are right I have to stay calm and positive so I will try my best as stress is not good when you have an MPN. I follow an anti inflammatory diet, take some supplements, run and intermittent fast too. I also have a nutritionist at the moment. Yes I have my Allelle burden frequently it is 20% and I have the Jak2 mutation. Have asked about it but couldn't get any information. Thanks B
Hey Brona...
Try not to be too concerned... A 20% ABF for JAK2 is significant but not a huge amount all the same. Many have well in excess of 50% ABFs w/ JAK2... So, keep smiling girl...
Steve
Thanks Steve. I had read on here about ABs. My consultant said it was on the lower end. I did a bit of research and found out liw is 5 to 10% and that AB can be as much as 50%. In my medical notes back to my GP it states that my AB % does not determine anything. I'm hanging on there and thank you for ur kind messages. Bx
Hi Steve,
I have PV, enlarged spleen, raised WBC and Grade 2 level Bone Marrow Fibrosis. I do not have MF at this stage. I am on aspirin only as i don’t have any other symptoms. I was interested to hear your BM fibrosis had reduced to Grade 1 as I didn’t know that was possible. It’s good to hear your are well. I’ll discuss the benefits of medication with my consultant.
Best wishes
Michelle
Hey Michelle...
It's great that you do not have any symptoms that you know of...
However, I am interested to learn that your BMB was Grade2, and that you have a large spleen, (as to me they are both symptoms). The Grading scale, (as I understand it), is across 4 levels, from 0-3. Having a strong proactive attitude, practicing a strong dietary regime, (w/ supplements Vit. D & B12), a daily 'Intermittent Fast, and a consistent exercise regime, I believe have all worked to aid my longevity w/ my MPN.
Inflammation, plays a huge roll, and the drug that I am on these days also assist in reducing Inflammation, (Ruxolitinib - aka - Jakafi).
Jakafi, should also reduce the discomfit you will experience from your large spleen...
Stay safe & well...
Steve
Hi Steve, apologies, I meant I don’t have any additional symptoms to those I mentioned regarding my MPN. I like you believe being fit and healthy keeps me feeling positive as the disease progresses. I take Asprin and have venesections but realise medication will be the next step. I just didn’t realise the fibrosis could be reduced. Thank you for taking time to respond best wishes Michelle
Hey Steve, there seems to be a slight confusion between signs and symptoms. A large spleen is a sign, not a symptom. It could be symptomatic or asymptomatic.
Keep well
My husband is post pvmf his spleen has reduced in size with jakafi he's doing really well on this medication. His fatigue has gone now and has a good quality of life .
Tracey
Hey Tracey...
That is excellent news for you & hubby...
Stay strong, happy, healthy & safe guys...
Steve
It's bad enough living in fear without all this covid .
My sister is a nurse she's tested positive today luckily we've not been near her . Life is difficult enough without all this covid stress .
Stay safe every one
Tracey
Hello. Is this fibrosis reduction a good sign as far as MF progression,or has nothing to do with it?
Hey Aneliv...
That would be a definite yes, in my view... Any reduction in fibrosis is good news in my book...
Best wishes & stay safe & well...
Steve
Hi, don't panic too much. Hubby has ET/PV & scan showed 2 years ago that his spleen was slightly enlarged but is expected with mpn. He's not had any issues & they tend just to have a feel of his spleen every few months. Your spleen holds blood cells which is why the spleen enlarges when mpn patients obviously over produce. If you start getting pains in your spleen area, you do need to mention it to your consultant but for the time being unless they are concerned try not to give it much thought, easier said than done I know.
Hi Chaz1, thanks for your thought. To date I've no feedback so dont know what they think. As Steve suggests I think I'm just going to have to wait until I get the rest of my results and my consultant speaks to me. I just wasnt sure if was "normal" or not to have an enlarged spleen with ET. Thank you B
Mild splenomegaly is not at all uncommon. I have had it for many years. It actually reduced once I got the erythrocytosis under control. KISS version - Your spleen works to clear out the excess of old/damaged blood cells. When we have too many blood cells, there is more for the spleen to clear out. Working harder makes it get bigger. Basically, the spleen is just doing its job, but ET or PV makes the job harder. There is no harm in the mild enlargement. It can be just a symptom of the ET. It is something to keep an eye on, but I would not worry too much about it. It is just part of managing a MPN.
You will soon have the results back from the BMB. Hopefully, that will give you the more definitive answers you are waiting for. Meanwhile, enjoy the little one and know you will be around to watch her grow up.
The key difference between signs and symptoms is who observes the effect.
Hi! Was some of your megakaryocyte atypic? Or what caused the confusion? Take Care!
Hi Johan, it's all very complicated isn't it!. My megakaryocytes were not typical. They were an odd shape and the pattern and distribution was questioned. ie clumping together in groups. I also a slight increase in reticulin. My BMB results were sent to a Oncologist Pathologist who said it was definitely ET. It was the word "definitely" I remember most btw. I think that MPNs are so complex and blood is so complex that results are not always cookie cutter but verve a bit. I read so many different papers on Megakarocytes atvthe time and did think the same as you but I think that a lot of these papers were not new and that you really need an expert for this. For me it was either ET or PMF. At the time it was so upsetting. Bx
Thank you for your answer. Yes it is really hard to understand it all. And it is very scary.
Hi Johan, it is scary. I felt exactly the same as you. Hang in there. I dont know if I would have got through the time I was going through the diagnosis process without the people on this site. ET has a normal near to normal life expectancy.
Oh the Megakaryocyte thing...
Johan, I too had large stagorn like forms and small hypolobulated forms. My doctor, who is a specialist, never mentioned it and I was diagnosed with ET. He said maybe it is masked PV, because my RBC, HGB, HCT and WBC tend to be on the upper limit, somtimes even a bit above. However, my BMB (or the one who was reading it?) failed to show that.
I will ask him about the small Megakaryocytes on my next appointment at the end of September. I forgot to ask him last time and I'm thinking about this ever since. Crazy, isn't it?
Yeah it is. How did it go? Mine says the megakaryocytes are in small clusters and are both hypo and hyperlobated. No fibrosis, so ET. But i get confused about the megakaryocytes..
reticulin fibrosis
Possible transformation to MF?
Newly diagnosed – ET Jak2+ with added drama!
