ET accelerated progression

[Smdg]

hi. I have had ET since 2004, treated with varying doses of HU and in later years also Peg. Apart from unstable platelets I have been relatively symptom free. Until this year! I have definitely struggled with HU, getting terrible mouth sores.

I had a bone marrow biopsy recently which has confirmed the disease is progressing. I now need to be treated to try to halt progression to acute leukaemia and if successful followed by a bone marrow transplant.

this has come as rather a shock

Is anyone else going through this?

[hunter5582]

Sorry to hear that the ET is progressing. What stage did they say you are at?

The potential for progression is something we all have to be aware of. It is one of the reasons that I opted for the interferons, Pegasys then Besremi. What treatment protocol did your care team recommend?

You are certainly not alone. Please do stay in touch as this journey unfolds. Wishing you all the best moving forward.

[Smdg in reply to hunter5582]

hi Hunter. The stage is accelerated myelofibrosis. I am starting a course of Azacitidine on Monday. As I am otherwise healthy they are hopeful I will be a candidate for transplant

[hunter5582 in reply to Smdg]

Sorry to hear that is the case. It sounds like you have a good attitude all things considered. Hope you find the Azacitidine suitable and effective. Looking forward to hearing that you will be able to access SCT treatment and that is will be a success.

Thoughts and prayers headed your way.

[Smdg in reply to hunter5582]

thank you so much

[Cja1956]

i’m sorry to hear what you’re going through. I am in a similar place. I got diagnosed with ET Jak two in 2008, which showed progression to MF in 2019 after a bone marrow biopsy and extensive bloodwork from a new doctor. I’ve been taking HU on and off all this years and just this year started getting mouth sores and my hemoglobin has started dropping. I’ve also been getting random fevers with chills and body aches at night. The episodes last for a couple of hours and I’m always wiped out the following couple of days. My hemoglobin, which has been around 11.2 all year showed 10.2, 9.5 and 10.1 on my last three lab tests. So I’m also worried about progression. I had a bone marrow biopsy last year to determine if it was time for a SCT and it was determined that I was not “ready”. Now I believe it’s too late because I’m just so weak all the time and my age, 67, and the doctors don’t think I’m a good candidate.

Do you know what they are trying to do to halt progression? Having a bone marrow transplant is a big decision and there are people on this site to of had a successful one. I wish you all the best.

[Smdg in reply to Cja1956]

hi. Starting a course of Azacitidine on Monday. Five daily injections then three weeks off , repeated for several months then another biopsy to see if it is working

[Cja1956 in reply to Smdg]

Well, hang in there and good luck with your treatments. Let us know how things go.

[Smdg in reply to Cja1956]

thanks

[Otterfield]

I'm so sorry to hear this frightening news. Usually progression would be to Myelofibrosis.

Treatment for AML is good these days and yes, SCT is tough but can be a cure.

Best wishes, Jennie

[Smdg in reply to Otterfield]

thank you

[lizzziep]

Hope all goes well for you.

[champ30]

I hope all works well for you.... sorry to hear your news.

[ciye]

I hope all goes well for

[Kilmichael]

i hope all goes well for you 🙏🏽

[joyfuljoyful123]

take care. And hope the Azacitidine works. God bless.

[RazB]

I’m sorry to hear you are experiencing this. It sounds a difficult time for you. I was diagnosed with ET about 18 years ago, have been on Hydroxy for about 15 years. I have experienced mouth/throat ulcers periodically through that time but they’ve definitely ramped up in last 12-15 months. I’m starting interferon soon (it’s in my fridge waiting for me!). I hope very much that you get the medical support you need, and keep in touch with us here, there’s a lot of support here for you. X

[Hidden in reply to RazB]

hi RazB Hope you ok with interferon What dose are you on are you still taking hydroxy too ?

[RazB in reply to Hidden]

hi, haven’t started yet as got a lot on, living in a building site with every room gutted! Will start when things a little easier at home (Jan I hope) and I’m starting on a jab every 2 weeks, bringing down Hydroxy slowly. X

[JeniMac]

Sorry to hear about your progression. I have progressed from ET to Myelofibrosis. Just started Peg 3 weeks ago. You sound like a very positive person which helps. Keep letting us all know how your doing as I'm sure I can answer for others on here that we are all here for you.

[hybiscus]

sorry to hear about this frightening news! I wish you all the best and lots of hope 🌹

[Smdg]

thank you everyone for your good wishes. I will let you know how week one goes. It’s good to have this forum to share concerns and information

[nightshadow]

I am so sorry to hear your prognosis. Not going through it, but just wanted to wish you good luck.

[azaelea]

So sorry to hear of this progression. Sending thoughts and prayers for a successful outcome. Best wishes.xx

[JaK2ET]

Best wishes to you and good luck!