Long term Remission

[Aby1990]

Is there anyone here got long term remission?

Like more than 7-8 years?

[Lifam]

I doubt, and I don't think it's possible

[Aby1990 in reply to Lifam]

I read from somewhere that people getting long term remission by using pegasys/interferon

[Tylerdog1 in reply to Aby1990]

If your blood condition (ET / PV) is referenced JAK2 then it’s a genetic mutation and won’t ever go away. Interferon is then used to help your immune system fight the cancer and subsequently get your blood counts under control and from what I’ve read does a good job of it. I’ve just started taking it so fingers crossed

[Aby1990 in reply to Tylerdog1]

There are molecular and haematological remission, which the best thing we can get from these medicines, but it varies from person to person

pvreporter.com/ropeginterfe...

[Aby1990 in reply to Aby1990]

Long term treatment with ropeg is capable of inducing deep molecular responses. As a result, studies suggest that select patients could achieve “operational cure” with both complete hematological remission (CHR) and complete molecular response (CMR) with ropeg, opening the way for treatment discontinuation. This highly anticipated “long acting” interferon is expected to receive FDA approval in the United States in Q4 2020.

[Manouche in reply to Tylerdog1]

You are absolutely right but bear in mind that a genetic mutation is, by definition, found in all cancers, although many mutations have not been discovered yet.

[Lifam in reply to Aby1990]

Now I understand what remission you were talking about. I thought you meant total remission from medication

[Aby1990 in reply to Lifam]

Not exactly, i know one guy who is on his remission phase still taking one low dose interferon injection once in a 4 weeks,he also not sure whether he need to continue it or not but he still doing it, and he is in haematological and molecular remission. New studies focusing to avoid the medicine for longer periods

[Lifam in reply to Aby1990]

Let's hope. I must admit that I am not knowledgeable for this. Mine is ET and I wonder what can make the bone marrow to make less platelets without medication.

[Aby1990 in reply to Lifam]

Long term treatment with ropeg is capable of inducing deep molecular responses. As a result, studies suggest that select patients could achieve “operational cure” with both complete hematological remission (CHR) and complete molecular response (CMR) with ropeg, opening the way for treatment discontinuation. This highly anticipated “long acting” interferon is expected to receive FDA approval in the United States in Q4 2020.

[Ebot]

I’m not sure you can talk about ‘remission’ in relation to MPNs since there is no cure. Certainly the disease can be controlled so that most blood counts are brought within ‘normal’ range. And that control of counts might last for many years before another intervention is necessary.

There is some discussion about whether Interferon might slow or stop disease progression. But the research is ongoing and there is no suggestion of a cure.

[Aby1990 in reply to Ebot]

Long term treatment with ropeg is capable of inducing deep molecular responses. As a result, studies suggest that select patients could achieve “operational cure” with both complete hematological remission (CHR) and complete molecular response (CMR) with ropeg, opening the way for treatment discontinuation. This highly anticipated “long acting” interferon is expected to receive FDA approval in the United States in Q4 2020.

pvreporter.com/ropeginterfe...

[Ebot in reply to Aby1990]

I think the clues are in ‘select patients’ and ‘operational cure’. There’s a huge amount of research going on right now in the MPN world (particularly in relation to MF). I believe there is excitement about the potential to stop disease progression. Certainly there is a lot of debate about the role of Interferon in this. And there are some strong advocates. I’m not sure however, that there is any general discussion about a ‘cure’. Although obviously that is the Holy Grail.

[Aby1990 in reply to Ebot]

Not only stopping disease progression it can reverse the condition atleast for some duration.

Remission is not complete cure, it’s temporary for a period of time

[Ebot in reply to Aby1990]

As I said there is a huge amount of research ongoing in relation to stopping disease progression, reversing disease progression and one hopes, ultimately, finding a cure. There are also very vocal advocates of one line of treatment over another and the impact it may or may not have on the above.

I guess I’m just wary of a discussion right now of long term ‘remission’ in relation to MPNs. Especially as - as far as I know - no one has drawn a line between remission and cured. I’m sure others will add to this chat.

[Aby1990 in reply to Ebot]

No one has cured completely from MPN yet, but i have seen few in this forum who are on Haematological/molecular remission.

One guy from UK told he is on molecular remission; which means no more jak2 mutation present from blood test since many years (which doesn’t mean that jak2 mutation reversed, medicines just reduced the amount of mutated stem cells under the threshold, and it can be increased at any point of time)

[mhos61 in reply to Aby1990]

Definition of ‘Operational Cure,’ sustained complete remission (CR) for a ‘prolonged period.’

[Manouche in reply to Ebot]

There is still some confusion between a « complete hematological response » and a « complete haematological remission  ». What’s the semantic difference ?

[Ebot in reply to Manouche]

They seem to be used interchangeably (and in essence mean the same thing) but happy to stand corrected.

[Manouche in reply to Ebot]

Remission should apply to those who have a complete response in the absence of treatment or after the course of treatment.

[Meatloaf9]

Hi, I have read a post on the MPN Research Foundation blog (is that what these sites are called?) who stated that she had been in remission for 5 years. Was on interferon and then blood counts stabilized and she was able to stop taking interferon. Do not know what her molecular status was or is as she did not mention it. She is a ET patient.

[hybiscus]

Thanks for this discussion, I’ve never thought remission could be possible.. there’s hope in the air 🥰