Minimal Residual Disease or Cure in MPNs? Ration... - MPN Voice

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Minimal Residual Disease or Cure in MPNs? Rationales and perspectives on Combo Therapy with Interferon-alpha2 and Ruxolitinib

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Cutting edge therapy for PV - MF patients who do not respond to Jakafi or Pegasys alone - bit.ly/2tBjHVs

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eire profile image
eire

Many thanks for this article. My rux is no longer working I was using it with Panobinstat but have now been taken off the trial. I'm seeing my haem tomorrow so will show her this article. Fingers crossed as I haven't been given much hope for the future. My spleen is constantly growing and v uncomfortable. I'll let you know what is said.

Thanks Pat

socrates_8 profile image
socrates_8 in reply to eire

Hi & thank you PV Reporter,

I am Post ET/MF and thus far have experienced some success & some mixed results w/ Ruxolitinib alone. My quality of life has improved markedly, in a generalised sense, however, my Blood Platelets (BPts), are still not really acting according to expectations. After some significant success, my BPts are back up around the 1,000 mark as of last bloods.

Unfortunately, however, in Australia, we are still struggling to have our Pharmaceutical Benefits Scheme (PBS), issue Pegylated Interferon A2, and therefore until this has changed these results might not be extant, at least not in an Australian context.

Still, to learn of these results is an encouraging development in and of itself...

Thank you again.

Steve

(Sydney)

eire profile image
eire in reply to socrates_8

Hi Steve, have you thought of sending this link to PBS?? I'm sure there are many other patients in a similar position to yourself. You could do with other MPN ers behind you or even a local councillor. Worth a thought. I'm just hoping my haem sees it in a positive light and possibly suitable for me. France is doing the trial but as I live in Ireland am part of the EU.

Pat

socrates_8 profile image
socrates_8 in reply to eire

Gooday Pat... :)

Yes, (thank you for your post), and I have passed on your link to the article, of which, I have now also accessed the complete article, and read myself.

Presently, the results do sound promising. However, I would caution too much optimism until we all discover whether or not the people behind these claims have a pecuniary interest, and therefore a conflict via an ulterior motive... (?)

In the past, I have discovered via a little research, that often the people making the claims are also involved in the creation, and therefore the marketing of some pharmaceutical product/s.

It is often, unfortunately the case, that the research is funded by the Big Pharma' companies via so-called independent consultants, who might not otherwise have the funds required to conduct their own research at all... However, in this way, many of those 'so-called' research papers might find their way into becoming published by said consultants...

That said, naturally, the idea that it is a potential cure of MPNs is most alluring...

...Let's watch where this all might lead to...

Good to make your acquaintance Pat.

Best wishes...

Steve

PVReporter profile image
PVReporter

Hi guys - I am glad you found the article of interest. I can attest first hand that the combo works for me (I know we are all different), complete hematological remission since Jan 2017. I have been on the combo 2 years now. That being said, PV never goes away (regardless of your counts - minimal residual disease is probably more accurate than cure, in my opinion) and I still have symptoms....particularly fatigue.

With RopegInterferon coming into the MPN treatment fold soon.....I think it is a net positive to have new meds helping many and quite a few trials in the pipeline.

Best,

David - PV Reporter

crapaud profile image
crapaud

On a lighter note, Interesting to see that the Jakavi packaging is for 60 tablets, here in France it's for 56 which means when I get to the end of my 3 monthly prescriptions I'm missing 6 or days treatment. The official reply is that a month is 28 days! This means I have to get an extra month prescribed which results in a regretable wastage in case of a change of dosage when I see the specialist a few days later.

Have a nice day

Crapaud