Dr Silver update re PV/MF and Interferons - MPN Voice

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Dr Silver update re PV/MF and Interferons

Paul123456 profile image
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youtu.be/XGEAlov50mY

Well worth watching. Dr Silver has used INF as first choice line of attack for over 20 years, hence significant experience re efficacy although critics argue that limited clinical data.

He believes that patients should start INF as early into their disease as possible

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Paul123456
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Rachelthepotter profile image
Rachelthepotter

Hi

there a published version, or a transcript, available? It sees, very clear from Dr Silver’s perspective that peg interferon has a solid base for use in MF.

Rachel

Paul123456 profile image
Paul123456

Not seen a transcript.

Agree encouraging re MF but as he said, very limited sample and not clinically proven. I think low dose Ruxo/Peg combo might be even better?

Most Hems still prescribe HU as front line, hence by the time they move their patients to INF the disease may be either more aggressive (HU can’t cope) or more advanced. Hence their personal experience of INF may be influenced by this.

I’ve asked two of the leading UK MPN expects about the ability of INF to impact disease progression. One said that the long term relevance of molecular response yet to be established, the other said as close to a cure as we can get with current drugs. I think Dr Silver called it well, INFs can, in some cases, achieve remission but is not a cure. However, potentially it can keep a lid on progression until hopefully something better comes along.

Best Paul

Manouche profile image
Manouche in reply to Paul123456

No cure is possible yet but a state of «minimal residual disease » or a «functional cure »is possible according to some specialists.

Bluetop profile image
Bluetop in reply to Paul123456

Hi Paul,

Thanks for this. It does seem that the debate between haems is still strong as to whether hydroxy or interferon should be the first drug used. At the London Patient Forum there was a very clear majority who said 'if hydroxy is working, stick with it'. Yet Dr Silver is one who shows such conviction and evidence in favour of interferon. Is interferon still working well for you?

Paul123456 profile image
Paul123456 in reply to Bluetop

Yes possibly too well!

Bloods gone from too high to too low so drastically reduced dosage, now 45 mcg every two weeks from 110mcg weekly about six months ago.

Think secret is to start low and be patient, with hindsight I increased too soon. Now about 20 months since I started

Best Paul

Bluetop profile image
Bluetop in reply to Paul123456

it is all a balancing act. Good luck with it.

tracey13 profile image
tracey13

My husband has post PV mf he's asked about interferon and it's a straight no from the stell cell transplant team in England.

They said side effects are hurrendous and it's not a nice thing to take, but surely with this evidence it's better for the disease !

My husband is on ruxolitanib 40mg a day and he also takes two 500mg hydroxy twice a week.

His bloods are all in range and his spleen was 21.2cm it's now 15cm after 8 MTHS on ruxolitanib.

He still gets so tired but he's working 40 he's a week in a stressful job so he's puts most of this down to work load.

Tracey

Paul123456 profile image
Paul123456

I believe that Interferons not recommended immediately pre STC since can increase GvHD risk. I think 3 month pre STC holiday recommended.

Hope this link re latest STC advances works

youtu.be/krdcXh-xaM8

beetle profile image
beetle

Thanks for the information again. I always associate Dr Silver with interferons. I remember how dismissive he was about Ruxolitinib which has been a saving grace for me for several years but may be starting to lose its effectiveness now.

Paul123456 profile image
Paul123456

There is a fascinating post on MPN.NET in the USA from someone with PV that progressed to quite aggressive MF a couple of years ago.

He has ‘self medicated’ (started Danazol to increase blood counts) but was reluctant to stop Pegasys. Hence continued loss dose from his remaining supply.

Appears to have had spectacular results, spleen greatly reduced, blasts gone and bloods much improved.

Obviously this is a one off case and the positive result could be result of something unknown or specific to him. However Peg combo treatments appear to offer exciting potential but I’ve not heard of a Peg/Danazol combo before?

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