From ET to MDS to AML a positive perspective - MPN Voice

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From ET to MDS to AML a positive perspective

Helen1952 profile image
30 Replies

Hello everybody

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

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Helen1952
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30 Replies
Raphael_UK profile image
Raphael_UK

Sounds like you have been through a hell of an ordeal, I hope you continue to improve. Sending hugs and prayers.

piggie50 profile image
piggie50

Hello Helen,

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!

Much love to you and your family.

Judy xxx

Inca profile image
Inca

What a story Helen,you must have great inner strength to come thru so much,sending you very best wishes for full recovery,Sally

mhos61 profile image
mhos61

Hi Helen,

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🤞

Best wishes to you and your family

Mary x

ksos profile image
ksos

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,

Kim

socrates_8 profile image
socrates_8

Hey Helen... :-)

What am amazing story... I may have a job for you... ;-)

I will send you a PM...

In the mean time, really well done you... You obviously have more to do...

What an inspiring story Helen, and thank you so much for sharing what must have been a truly frightening experience for you...

Stay safe & well...

Best wishes

Steve

(Sydney)

Ettiel profile image
Ettiel

Congratulations Helen for coming through such a truly trying time. Your story is really uplifting. Stay safe!

Ettiel

MaggieSylvie profile image
MaggieSylvie

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.

Nickthedevil profile image
Nickthedevil

Hi Helen I’m so pleased that you have come through the other side of such a horrible time. Your positivity is amazing. Stay safe and well.

Karen xxx

Helpatlast profile image
Helpatlast

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

Wyebird profile image
Wyebird

You are inspirational . Sending you hugs galore.

Susana7 profile image
Susana7

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 💛

Susana xxx

hunter5582 profile image
hunter5582

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.

amhann profile image
amhann

Such a positive post after a grim time for you - hoping you continue to go from strength to strength. Very best. Anne- Marie.

Cja1956 profile image
Cja1956

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.

Best wishes,

Cindy

lizzziep profile image
lizzziep

WOW! Pleased you're here to tell the tale! XX

Ticotopia profile image
Ticotopia

You are an inspiration.

Elzbietta profile image
Elzbietta

Thank you for sharing your story. Inspiring!💙

Kiki64 profile image
Kiki64

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

babbittybumble profile image
babbittybumble

Hello Helen. Really pleased you are in remission and good that Chris and Pam kept in touch with you . Take care Bye Gill

JediReject profile image
JediReject

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.

Lara Croft has nothing on you 😉

Keep Well - Chris x

Poppy6060 profile image
Poppy6060

Hi Helen I hope you continue to keep well you have had a hard few months hope you can enjoy the rest of the summer.

Best wishes Poppy xx

Bluetop profile image
Bluetop

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!

wotan10 profile image
wotan10

Greetings from Fleetwood England.

Glad you are fighting this.

Regards for sharing.

Your story is incredibly important for us all to take onboard.

Take care.

wormwood profile image
wormwood

Blimey .... I'm glad your OK.... keep going.... inspirational to us all xxx

StreetPastor profile image
StreetPastor

Wonderful news Helen. Congratulations 🥳 so happy things are settled after such a bumpy ride xxx

Innessant profile image
Innessant

From DNR to remission. Great story... thanks

Jazzyb50 profile image
Jazzyb50

Thinking of you and so pleased to hear you are in remission xx

Mamab83 profile image
Mamab83

What an amazing journey! So glad you are still with us to share!

Kerri2 profile image
Kerri2

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?

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