@Erica Ooh you are awful! 
2 Likes
Hi @Hughbie
Yes, Chronic myelomonocytic leukaemia ('CMML'), though rare in itself, is actually the commonest type of Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap. The key thing and diagnostic criteria for Chronic myelomonocytic leukaemia ('CMML') is the proliferation of monocytes - used to be defined as >1 (greater than 1) but in 2022 was reduced by WHO to > 0.5. Your JAK2 mutation is found in Chronic myelomonocytic leukaemia ('CMML'). It does offer the possibility of a different type of treatment. Have you been down that route?
The only mutation I have is KRAS but as my monocytes were inconsistently meeting the criteria (until they lowered it!), I donāt think it is one of the mutations causing the proliferation as all my other counts are either normal (Hb) or low ( platelets). So I am very much in the Myelodysplastic syndrome ('Myelodysplastic syndrome ('MDS')')-type category and my Chronic myelomonocytic leukaemia ('Chronic myelomonocytic leukaemia ('CMML')') seems to be an indolent type- always good to have a lazy cancer! 
Hope youāre doing well.
1 Like
@ChrissyD Thanks so much for the very informative reply so I can see now why they may have switched your diagnosis to Myelodysplastic syndrome ('MDS'). I actually have 3 other mutations SF3B1 IDH2 and SRSF2 and my monocytes hover between 1.5 and 2 but arenāt increasing. All my other blood counts are in normal range and, like yous it appears to be indolent. So because of this Iām having no treatment at all. Long may that last. I love your phrase about lazy cancer!
In summary though, it sounds like your new diagnosis may be the correct one.
Good luck and long may our cancers remain indolent
Hi @Hughbie
Youāve certainly got a nice collection of mutations but, as you say, like me youāre lucky enough that it isnāt affecting you hugely and seems to be a slow-burner.
Sorry to correct you but it isnāt me who has had a changed diagnosis to Myelodysplastic syndrome ('MDS') but @Unclejack ! And that hasnāt been confirmed yet and is possibly just an admin error! Many of my blood test forms over the years say I have Chronic myeloid leukaemia ('CML') which is a completely different leukaemia but most GPs donāt seem to know the difference! My own diagnosis has always been Chronic myelomonocytic leukaemia ('CMML') but, according to the WHO international classification, it was included as a sub-type of Myelodysplastic syndrome ('MDS') from 2008/2009 when I was diagnosed until 2016 when it was given its own classification.
Hi @Hughbie
PS. If you havenāt already read this, here is a good explanation about the different types of Chronic myelomonocytic leukaemia ('CMML'). The Myelodysplastic syndrome ('MDS')-type and Myeloproliferative neoplasms ('MPN')- type are so different that they might as well be 2 different diseases!
@ChrissyD ah thanks for the clarification and my misunderstanding.
Whatever they diagnose us, its a blessing for us that its a slow burner.
Hi @ChrissyD on that basis I think i may be a bit more on Myelodysplastic syndrome ('MDS') side but my blasts are low so hence why they classify me as low risk.
Its so weird though to be told you have blood cancer but you have no symptoms and its low risk. Mine was pretty much discovered by accident through blood tests because of something unrelated.
It makes me wonder how many others are similarly affected as they get older but are blissfully unaware
1 Like
Hi @Hughbie
Youāre so right. I was involved with Myelodysplastic syndrome ('Myelodysplastic syndrome ('MDS')') Patient Support Group for about 14 years and met hundreds of people at online meetings. There was certainly a really high incidence of people being diagnosed āincidentallyā through having blood tests for some other issue eg pre-operation, general health check - rather than from any particular symptoms. In retrospect, if my Chronic myelomonocytic leukaemia ('Chronic myelomonocytic leukaemia ('CMML')') hadnāt kicked off with some rather spectacular and frightening symptoms, Iām sure I would have been in blissful ignorance for many years. And, given that there is still very little to offer us in the way of effective treatments, blissful ignorance might have been a better option I sometimes think! Iāve now had 18 years of worrying about infections and bleeding though, thankfully, no fatigue. On the plus side, knowing my vulnerability has made me very aware of trying to to avoid potentially serious infections, gave me extra protection during the COVID pandemic and means I try to appreciate each day more! 
3 Likes
@ChrissyD @Sisi @Lyndam @Erica
Hi everyone. Received latest blood test results yesterday. Had my telephone appointment this morning. Haemoglobin level recovering well without any injections. Platelets fallen to their trend level of 47 as expected. Minor fluctuations on other levels but stable. Consultant happy next test and appointment September. I think the dreadful stint in hospital and the even more dreadful iv antibiotics are fading now. I see the ENT team end of this month about my lacerated throat when anaesthetic tube was inserted. It has healed well so shouldnāt be a problem. Hoping everyone is ok. Has anyone heard if Dr.Dan. has mentioned any further developments with the new Chronic myelomonocytic leukaemia ('CMML') treatment under development.? The Myelodysplastic syndrome ('MDS') mentioned on my blood test form was a error.
Best wishes Unclejack.
3 Likes
Oh @Unclejack and all. A good stable news post from you, donāt forget to celebrate in style.
Yes, you really did go through a lot, so really look after yourself
1 Like
Hi @Unclejack Glad to hear your appointments went well & blood results are behaving themselves. Great news. My husband is due to chat with Dan Wiseman early Sept, so will ask if there are any Chronic myelomonocytic leukaemia ('Chronic myelomonocytic leukaemia ('CMML')') updates & keep you posted 
Till then take care 
1 Like
Hi @Unclejack Good to hear your blood test results have returned to the normal range for you. I can relate to the mistake of putting Myelodysplastic syndrome ('MDS') on your hospital test paperwork, as I have had at least 2 test result letters referring to my diagnosis of Chronic myeloid leukaemia ('CML'). I think it maybe because Chronic myelomonocytic leukaemia ('CMML') is not on a pick list off illnesses for them to automatically input. I am due back to haematology next month, so hopefully that will go well. Take care.
1 Like
Hi @Unclejack
Great news that everything has gone back to your normal levels after the awful hospital experience you had. Hope the throat is fully healed. It sounds good.
Haha. I thought the Myelodysplastic syndrome ('MDS') on your blood form was an admin error and not a changed diagnosis nobody had told you about! And @Lyndam -oh how many times do we see Chronic myeloid leukaemia ('Chronic myeloid leukaemia ('CML')') on the blood test forms?! Thatās the disadvantage of having a rare Leukaemia with initials so similar to a more well-known one! ! 
It always feels overly pedantic to correct them! As long as the haematologists get it right, we should be safe!
Iām hoping Dr Wiseman or one of his team will be speaking at the July Leukaemia Care meeting but I wonāt hold out too much hope for any new research so soon after the last one. 
Hope everybody has a good weekend and isnāt too hot. Iāve really enjoyed the slightly lower temperatures this week and a fresh breeze - living so near the Thames Estuary. I can often smell the sea from my garden if the wind is in the right direction.
4 Likes
@Sisi @Erica @Lyndam @ChrissyD
Morning all, thanks for the great support. I still am surprised about the effect of IV antibiotics on the full blood count. Looking at the graph all levels like a map of the Alps. Anyone else had a similar experience with antibiotics.? I was amazed that my bone marrow returned things to my normal. I still firmly believe that the right foods can make a difference. Best wishes to all Unclejack
3 Likes
So, the confusion continues! Our haematology team didnāt get the results from the biopsy that they expected and further investigations are required as theyāve foundā¦ Mast cells. They are now testing at a molecular level.
Iāve been googling but the results are sketchy. Itās seems, rare in humans but either not a big deal or leading to death quite quickly! Iām so confused because heās not showing any symptoms.
Good news is that they didnāt find any signs of further Chronic myelomonocytic leukaemia ('CMML') progression as the blasts havenāt changed.
@Hellodolly Iām interested to read this as weāre experiencing the same re biopsy showing unexpected Mast cells. Haematology with us seem not to be doing any further tests. I should clarify we have a v different disease context so no similarity there. Best wishes as this is all figured out for you