Haven’t been on fo a while as I feel I can’t help much
6years ago I was diagnosed with ET and for 3years this went along nicely with HU and aspirin then I very suddenly progressed to MDS and put on anagrelide to no avail then Rux also to no avail and the Azacitidine to no avail
I then became transfusion dependent and had 2 units every two weeks until Easter just gone when I got very poorly and was taken in to the emergency ward at my local hospital where I had pneumonia and sepsis and atrial fibrillation
I signed the DNR and the DR phoned my husband to tell him my decision
But I survived as you can tell
Next day my haematologist his registrar and my CNS came to tell me that the results of my BMB was AML with 70% blasts and even they were shocked
12 hours later I started the chemo
I was in hospital for 3Weeks had 3covid tests all negative lots of drugs blood and ironically platelets
The team in my local hospital were amazing caring and professional as well as us having a laugh
Couldn’t have visitors so family and friends played a huge part and I’d like to thank a couple of people on here for keeping me cheerful Chris our Jedi and Pam (phelpsy)
I am now in remission and would like to thank my local hospital and the team at Guys for all the wonderful care I’ve received
I know some of you have had bad experiences of heams but I’ve been very lucky with mine
Please please realise that this is VERY rare to happen
Stay positive and stay safe folks
If you’ve got this far you are amazing
Helen xx
Written by
Helen1952
To view profiles and participate in discussions please or .
I’m so sorry you progressed to AML and pleased you are now in remission. Enjoy every moment with your children and grandchildren. I know you have been through so much over the years, you are one amazing lady!
I’m truly sorry to hear of your progression to AML and the serious issues that you experienced in the lead up to this diagnosis. You certainly have had a challenging couple of years.
How tough for you not to have had any visitors during your hospital stay, but it’s so heartening to hear that you have been supported throughout this by Chris and Pam and encouraging too that you are now in remission, long may that remain the case🤞
Hi Helen -- you've been through so much and here you are, telling us the positive view of it all. How wonderful. I'm so glad your docs and health care team were caring and helpful and that you had the support of good people -- and most of all, that you are now in remission. Prayers and best wishes to you. Take good care,
Wow! I had no idea things could escalate like that. I was diagnosed with MDS/MPN a year ago and all stable. Well done for achieving remission with the help of the medics.
Hello Helen thanks so much for sharing your experiences - as the courage of those that go through the most serious elements of disease become the encouragement that spurs all us of on whatever bit we are dealing with. Goodness you have had a rough ride this year let alone doing it all amidst all the pandemic - and you are right good consultants are treasures ones we can trust and also value for all the wise input they give. Do hope coming weeks and months sees some good days ahead for you with some enjoyment of the sunny days - all the very best
Very sorry to read about your progression to AML. I am so glad you are on remission. It is reassuring that you are under the care of the best MPN teams so they will know all the latest developments and the clinical trials that may be available for you. I recall you also had potential donors if an SCT was on the cards. Sending love and strength and keep up your amazing spirit and positivity 💛
Very glad to hear you weathered this dreadful storm. We are blessed to still have you as a member of this forum. You do have a lot to offer as an example of perseverance and inspiration. You demonstrate that even when things have turned quite bleak, there is still hope. Please do keep posting and let us know how things go. We are truly stronger together.
So happy that you are in remission after going through such a tough time. Sounds like you had very good and caring doctors. It sounds like quite an ordeal, as you said, but here you are, sharing your incredible story. Stay strong.
Hi Helen thank you for sharing your story. Glad everything has turned out well. You are truly inspirational in every way . Take care and very best wishes to you
Hello again my friend, , pleased you posted your inspirational story.
I can only say you have my utmost admiration for the way you remain positive throughout all your treatments, face each challenge (and there have been and are many) head on, and always with a sense of humour thrown in, even in the toughest of times.
What a terrible ordeal -and with COVID restrictions as well. So pleased you are in remission and have come through it and thank you for your positive approach!
All this since Easter wow. Congrats on your remission - fingers crossed..
ET 5yrs ago originally treated w HU discontinued due to anemia. Watch and wait as platelets normalized and anemia became progressively worse. Tested positive and hospitilized w Covid pneumonia 1st week of Sept. WBC and RBC low and required transfusion. Not transfusion dependent. After all this I requested BMB. Still waiting on genetic testing but Dr throwing around terms like high risk MDS and MF-AP, also said it could could be regenerative response to Covid. I am just confused, I am familiar with profession to MF but where did MDS come from? Potential outcome for both is AML and as you know progresses quickly.
Referred to transplant specialist to discuss mini transplant - reduced intensity conditioning. I have a consult next week. Is this something the discussed with you?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
ET JAK2 positive
First Visit With My MPN Specialist!
ET progressed to Myelofibrosis 
Knock on effects from Et
