Azacitidine

[jane13]

anyone had Ruxo with Azacitidine? I have high risk MF which is unstable and tending towards AMF. Azacitidine sounds unpleasant and I'm not convinced that it's worth it.

[Lab-Rat]

Hi Jane, I am so sorry your MF is unstable and tending to AML. I looked up Azacitidine and agree it is not a walk in the park. However, your doc must have good reason if s/he wants you to take this route. It is all about risk vs benefit and quality of life. All of the best with making your decision and let us know how you are doing.

[Helen1952]

Hi Jane

I have MPN/MDS and have had 5 cycles of Aza so far.

I had a BMB after the 5th cycle and got the results yesterday and although it hasn't performed the miracle it could have there is no progression but I'm still transfusion dependent.

More than anything it is a huge commitment I had it 5 days on and 3 weeks off.

It is definitely not a walk in the park

I am having a break from it at the moment as I have an internal bleed and need an endoscopy and then I will decide with my local and Guys whether I go for it again.

Everybody is different and has different experiences.

I hope this helps a little.

Find out everything about it from the docs and then see what you think.

Helen xx

[beetle]

I am very sorry that I don’t have much technical knowledge on how to provide a link for you but I noticed when I followed Paul’s first link above with Prof Harrison talking about therapeutic advances in MPNs that on the right side of the screen was a column of other speakers. The second one down was Naval Davar talking about Azacitizine. I hope my feeble instructions will lead you to this or that someone with more technical savvy than me can jump in to help.

[Paul123456]

Jane

Sorry to hear you are struggling with azacitidine.

Hope this link works and is helpful

vjhemonc.com/video/gpt6skt8...

Best Paul

[ccsial]

I also have MF with TP53 mutation which is the worst. I have not gone to AML yet but I know I will get there. With TP53 there is not much response to any treatment. You might want to find out what mutations you have and how good your outcome might be.

[Lab-Rat]

Hi Jane,

From Paul's video clips I see Prof Harrison is involved in a Ruxo-Azacitidine combo study. Journal article titled A Phase Ib Study to Assess the Safety and Tolerability of Ruxolitinib in Combination with Azacitidine in Patients with Advanced Phase Myeloproliferative Neoplasms (MPN), Including Myelodysplastic Syndromes (MDS) or Acute Myeloid Leukaemia (AML) Arising from MPN (The Bloodwise / TAP PHAZAR Study on Behalf of the UK MPN CSG) can be found here:

bloodjournal.org/content/13...

All of the best to you.

[jane13]

thanks everyone! went to see the regional specialist today and got persuaded: starting Monday

[Helen1952 in reply to jane13]

Well done Jane hope it works really well for you.

Good Luck for Monday xx

[Lab-Rat in reply to jane13]

That’s super! You can do it! Thoughts are with you and when you are up to it let us know how you are doing!

[ccsial]

Please let us know of your progress. Best wishes to you Jane.

[Bigmann1 in reply to ccsial]

Ccsial

Hi how are you? Read your postings hope all is well for you!! This is an unbelievable struggle accepting our diagnosis and understanding it as well. I’m diagnosed with post et mf! Bone marrow biopsy indicated fibrotic phase and decrease in anemia noted. Doesn’t sound to good. I started rexo for 10 days and now had to stop b/c of throat infection. Now I start again tomorrow. Don’t k ow mich about the aggressiveness of my cancer but trying to figure this all out.

Thanks

Biggs

[Bigmann1]

Hi Jane. How are you? I hope all is well! I read your post and wanted to ask you how they informed you that your mf was trending to aml?

[jane13 in reply to Bigmann1]

Hi, I knew that I was going downhill - weight loss, night sweats etc etc. But my inexperienced haem just said "these are all symptoms of MF". After 2/3 months delay I eventually got referred to the regional specialist through a combination of nagging and getting a retired haem whom I knew to pull strings. It was no great surprise to me that I was tending to aml, but I just got hints from the haems and didn't get a clear diagnosis until I asked if that was what was going on! Both my local haem and the specialist seem relieved when I raise the issue and the poor prognosis - once I have done this they are much more open - they say most people don't want to hear the worst.

[Bigmann1 in reply to jane13]

This makes me wonder because I have night sweats as well. My hem told me the same thing. He put me on Ruxolitnib. I took a bmb in dec and he told me that I didn’t have aml. But I still have night sweats. The bmb said that I was diagnosed with post et myleofibrosis. Does this mean I can’t shift to aml? This all so scary. Did any test you have indicate to you this change besides the night sweats? I’m going to get a second opinion because like you I don’t think my hemo is telling me everything like you. I noticed my CBC had2% blast in the blood. Also recently I had strep throat infection and my hem kept asking me if I had fevers via text. It’s almost like he is expecting something. I hate this wondering. Did you have anything in your testing that shows such a transition? Thank you for your help.

Bigman

[jane13 in reply to Bigmann1]

As I understand it AML is defined by 20% blasts in yr blood, so 2% sounds to be MF by a good margin.

Think lots of us have night sweats - I just had them v v badly and I lost weight and my spleen was enormous. Sounds like yr haem is keeping a good eye on you.

[Bigmann1 in reply to jane13]

Jane I wish you luck! I was just diagnosed in December but I was complaining of anemia for a year. My liver enzymes were up for a long time to. I am jak 2 positive and just feel my Hem struggled to diagnose me. Did you have a high blast count? How is your treatment going? Sorry your going through this. My heart goes out to you.

[Goldfish212 in reply to Bigmann1]

Hi

I noticed your posts in the reply sections and just wondered how you are doing now as my partner has post ET myelofibrosis and experiences all the symptoms that you said you had. He was diagnosed in April this year and is on Rux and hyrdroxea. He is still very fatigued with night sweats/fever, enlarged spleen etc.

[jane13]

Had one course of 7 days azacitidine, still got 2/3 red lumps from the injections but not too bad in the greater scheme of things. Now had 2 weeks off during which my counts have been fairly unstable: I have had a transfusion every week for low haem, reduced my Ruxo for a week due to low platelets, but generally felt well. However, in the last few days back to not sleeping, hot flushes, more bone pain etc - but no idea about cause and effect. Back for another 7 days injections starting next week.

[Bigmann1 in reply to jane13]

Jane

How are you? How are you feeling?

[jane13 in reply to Bigmann1]

Hiya, now being sick as well, so not brilliant. GP has been out. Not sure I will be up for next week's acacitidine....

What's your latest?

[Bigmann1]

Jane how are you?

[jane13 in reply to Bigmann1]

got admitted overnight for poor kidney function, near finished 2nd 7-day course acacitidine. asked for meeting to discuss whether to keep going on acaacitidine with specialist nurse, palliative care and haem

[Tico in reply to jane13]

Hi jane,i'm very sorry to hear that. Was that last night? Gosh, you must be feeling terrible,hope you are feeling stronger in yourself soon,i know you have had a difficult time of it of late,so sending hugs for a speedy recovery to you.tina🤗

[Lab-Rat in reply to jane13]

I’m sorry you are not well. Is it the Azacitidine affecting your kidney function? I hope you feel better soon.

[piggie50]

Hi Jane,

I’m so sorry to hear you have been admitted to hospital. I hope you get some relief soon. Sending you love and hugs.

Judy xx

[Bigmann1]

Jane sorry to hear this news. Be positive things will turn around and get better. Sending you prayers and strength.

[Helen1952]

Hi Jane

Sorry I've only just caught up with this and sorry to hear you have been so poorly.

I also was really sick after my 3rd cycle and thought I couldn't continue but I was was told it wouldn't show any result until the 5th or 6th cycle so I carried on

not without trepidation.

My BMAT showed that it hadn't done anything much but also hadn't done any harm which I suppose is a stable result.

I will be discussing in April whether to have another go.

I have MDS with 8% blasts and have a transfusion every two weeks now.

This is just my experience Jane and I know we are all different.

I hope you feel better soon and can have a positive discussion with your docs about the way forward.

Love to you

Helen xx

[jane13 in reply to Helen1952]

that's useful info, thanks. I have just finished 2nd cycle, transfusion weekly, blasts 15-22, gone up to 25mgx2 Jakafi.

Jx

[Bigmann1]

Hey how are you feeling?

[Tico]

Hi jane, hope your feeling a little bit better than a week ago, i'm sure people are thinking about you. Sending a hug and best wishes.tina.x🤗

[jane13]

Hi guys

I am feeling much better! 10 days to go before I go back on the azacitidine so I guess that will b the real test!

Thanks for all the support and +ve vibes!