Dear Pierre, nice to e-meet you I just want to add my 50 Cents to your question.
As the fantastic people in this forum have already told you, it is a very personal decision and everyone has to decide for himself/herself. The whole process for a transplant is challenging.
But as you said before: you are “lucky” that you still have this option. Many people are diagnosed when it is too late for transplant. Or their disease is progressing so quickly or getting out of control that it is suddenly not an option anymore. One of my dad’s haematologists said, if you are quite young and you have the chance you should always take this option into consideration (transplant). As it still is the only way to heal Chronic myelomonocytic leukaemia ('CMML').
I’m just reminding everybody I can think of about the Chronic myelomonocytic leukaemia ('CMML') SUPPORT meeting hosted online by Leukaemia Care next Thursday, 21st May from 2pm. If any of you think of anybody else please @ them and send a link to this post.
It would be great to see those of you affected by Chronic myelomonocytic leukaemia ('CMML') for mutual support. No speaker this time so it’s for us to share our experiences of living with Chronic myelomonocytic leukaemia ('CMML').These meetings really help ease the feelings of isolation having been diagnosed with this rare disease.
If you are already registered for these meetings, you should get automatic reminders. If not, you can register for these meetings meetings here
@ChrissyD Thanks so much for this. Really sorry but we won’t be able to make it…again! My husband has a physio appt for his back that afternoon. Please send our apologies. Thanks. Hope meeting goes well. Best wishes
@chrissyD I am having treatment everyday nxt week so won’t make it sadly. Hope to make it nxt time especially after a difficult week. Good luck to all x
I got a reminder about the meeting on 13/05/26 and was informed by Nick that I would get a link to join! Still haven’t had that so I just clicked the link on that reminder to re-register and I’ve now got Zoom join emails for the July and November meetings as well!
Honestly don’t know what’s going on but I feel that there is something wrong with their system and worried people will miss out!
If you also got the reminder about the meeting I suggest you click the link to register again? Hope that works!
PS If that doesn’t work, apparently the link to join the meeting is the same as the last meeting so if you’ve still got that one in your past emails, try that!
Hi @ChrissyD thanks for this, didn’t keep the link so have now re registered as you suggested and have the link like you and have July and November link as well.
Oh that’s good @Lyndam . Seems a bit daft for LC to send out the Join links so far in advance? They’ll be lost in my mass of emails by the time those meetings come around? Just have to flag them or hope we get reminders nearer the time!
@ChrissyD@Erica@Ceri_BloodCancerUK Hi everyone, blood test today. Just noticed on my form that Chronic myelomonocytic leukaemia ('CMML') diagnosis has changed to Myelodysplastic syndrome ('MDS'). I realise that Myelodysplastic syndrome ('MDS') is related to Chronic myelomonocytic leukaemia ('CMML') but after 4 years of Chronic myelomonocytic leukaemia ('CMML') I wonder if things have changed? Next week ENT review the wound to my throat. That could be interesting. Thankfully it has healed quite well Hope everything is o.k. with you all. Best wishes Unclejack.
Oh @Unclejack and all, if I have questions whizzing round in my mind then I know I need to ask someone, preferably someone in my medical team as they know me and my medical history first, but also a chat to one of our wonderful Blood Cancer UK nurses on 0808 2080 888 is always a great idea.
Please do let us know how your ENT appointment goes next week, the word ‘interesting’ that you use @Unclejack can cover so much.
Well that’s certainly weird @Unclejack . Surely if your diagnosis had changed, somebody should have discussed it with you? Years ago Chronic myelomonocytic leukaemia ('CMML') was classified as a sub-type of Myelodysplastic syndrome ('MDS') as they share some common symptoms. However, in 2016 Chronic myelomonocytic leukaemia ('CMML') was reclassified by the WHO as an Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap disease so nobody should now be calling it Myelodysplastic syndrome ('MDS')? Certainly not since you were diagnosed anyway! I was originally classified as having Myelodysplastic syndrome ('MDS') but that was way back in 2008! As @Erica says, it’s best to check this out with a clinician (or whoever ordered the blood test) as it could just be an admin error?!
How are you all coping with the heat? I’m melting! Just sitting around indoors in underwear with a fan on and curtains drawn! My husband has unusually been waking up early with the heat and has been heroically watering our allotment at 6-ish in the morning.
It’s my birthday this weekend - as well as my oldest granddaughter’s on the same day (my best birthday present ever!)!), my daughter’s, my daughter in law’s and my son and daughter in law’s anniversary! We’ve already had my mum (98) and brother’s birthdays last week so it’s a hectic month!
Take care all of you and hope your ENT visit goes well @Unclejack
@ChrissyD@Unclejack@Lyndam@Erica Hello to you & others. As @ChrissyD says that is strange @Unclejack re Myelodysplastic syndrome ('Myelodysplastic syndrome ('MDS')') note?!!! Good luck with your ENT appointment.
I hope you are all ok in the heat? Its scorchio here in West London luckily not having to do much. My husband had his Endoscopy / Spyglass procedure on Monday, where they’re still trying to identify what’s been causing his elevated liver enzymes. All went well & he was back home that evening. They are hoping it’s just inflammation but need to rule out anything nasty.
Oh @ChrissyD I like your decorum still having your underwear on in this heat !!
I just wanted to wish you (and your granddaughter) a very enjoyable birthday this weekend. My son was born on his great grandmothers 76th birthday and he was also able to drive her in a car after he past his test. Yes, a very special bond.
Wow, what a month of celebrations for you all. Enjoy
Well I was originally diagnosed as Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap (uncategorised) but n9w they’ve changed it to Chronic myelomonocytic leukaemia ('CMML') which they say is a form of Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap. The Myeloproliferative neoplasms ('MPN') piece is that you have mutation that causes a proliferation of one or more cell types. In my case, its monicytes and a JAK2 mutation. I dont really understand why you wouldn’t be Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') or Chronic myelomonocytic leukaemia ('CMML'). You don’t suddenly lose the mutation that encourages proliferation.
I’d go back to your haematologist to get clarification and, if necessary, correction of your disease details.
I’d be interested if you don’t mind sharing a bit more of the genetic profile that gave you the original diagnosis. Just curious, no worries if you don’t want to share
I just want to add my 50 Cents to your question.
My husband has a physio appt for his back that afternoon. Please send our apologies. Thanks. Hope meeting goes well. Best wishes 
Good luck with your ENT appointment.
luckily not having to do much. My husband had his Endoscopy / Spyglass procedure on Monday, where they’re still trying to identify what’s been causing his elevated liver enzymes. All went well & he was back home that evening. They are hoping it’s just inflammation but need to rule out anything nasty.
