Tet2 and inflammation

[Janis12]

A recent telephone appointment with Prof Claire Harrison has saved me endless research and 'looking for the answer'. I have ET and my driver mutation is Tet2. I was interested to know how this would affect my disease progression as I did not have one of the regular mutations. It seems I am at less risk of a blood clot with Tet2...great news and my journey with this mutation would not be any different. It was also explained that Tet2 is a driver of the dreaded inflammation and Prof Harrison felt that this was more likely to be the cause of all my aches and pains which I have had for a number of years. We talked about the anti inflammatory diets which I indulge in including sugar free for a year (no benefit at all) and I was advised that there is no strong evidence to suggest that these help to reduce inflammation. So I will continue with my Mediterranean style diet because I like it but will stop the endless search to achieve the pain free body...it aint going to happen. Best wishes to you all.

[Aneliv9]

So Tet2 mutation doesn't affect progression according to prof. Harrison? Also could i ask your age?

[Janis12 in reply to Aneliv9]

My progression will be no different to the regular mutations for ET but as we all know it is a bit of a random game. I am sixty five and was diagnosed three years ago.

[lizzziep]

Interesting, I have the Tet 2.

[marlenablue]

Have you tried stretching and/or yoga to help with some of the pain? I sometimes have leg pains that will go away after stretching. Just a thought!

[Janis12 in reply to marlenablue]

Hi, yes I have a routine daily of stretching and have practiced Pilates for nine years. I am physically active cycling three days a week, walking, gym work and aquafit once a week. Obviously as pains have progressed I have needed to reduce distance, time and generally listen to my body more....it's a sense of loss. Many thanks for your response.

[PhysAssist]

Hi Janis12,

You might find this interesting, as I did:

sanger.ac.uk/science/tools/...

The caveat that it is a "research tool" that has not been fully validated is necessary, but the article reporting on it showed that the authors did externally validate it [using data separate from the study data they used to develop it].

sciencedirect.com/science/a...

Also, regarding systemic inflammation:

Have you tried any of:

1) Curcumin

2) L-Glutathione ,l or

3) N-Acetylcysteine supplements?

I think it was Hunter who was saying they take some or all of them for that reason, [but it also could've been EPguy].

Best,

PA

[Janis12 in reply to PhysAssist]

Hi, I will have a look at those links, knowledge helps us make informed decisions. It seems that a number of these supplements are contraindicated with blood thinners and some also with gastric problems. Each time I ask my doctor it's a case of 'not enough evidence' or they don't really know but when there appears to be no other option anything is worth a try. Thanks for the info.

[PhysAssist in reply to Janis12]

Hi Janis12,

De nada, I'm just sharing what I learned on here.

I don't think you doctors can [or need to] weigh-in on whether these supplements will necessarily help you with inflammation.

I think what you really need them to do is help you decide if they will interact or interfere with your other [anticoagulant] medications, and then from there, you can decide yourself whether or not you want to try one [or all] of them.

N-Acetylcysteine, in particular has been shown to reduce systemic inflammation in patients with other inflammatory syndromes. It apparently acts as a precursor molecule that the body can turn into Glutathione, which seems to be the active agent in that chain.

As for whether these supplements will specifically help patients with MPN's or not, it seems that there are too few of us and they are too inexpensive [on a global scale] to justify their testing- but I'm willing to waste a bit of my own money to try to decrease my overall inflammation, whether there is a measureable benefit to me or not.

Your mileage may vary.

Best,

PA