Triple negative ET has or has not worse prognosis? According to this video (snapshot), it has worse.

[Aneliv9]

In case that triple negative ET transforms to MF, even the SCT has no good results. I really feel hopeless. I can't go on with these probabilities in my future

[cmc_ufl]

I have addressed this point a few times in this forum. Two separate MPN specialists have told me that triple-negative is the most mild form while it is still ET, but that once it progresses, it is the most aggressive form of MF/AML. This is due to the fact that it is caused by non-driver mutations, which are associated with disease progression.

[Aneliv9 in reply to cmc_ufl]

yes but does it also have more chances to progress while in ET? Prof Harisson said no but in.this video say higher rate of progression.

[cmc_ufl in reply to Aneliv9]

My understanding is that, yes, triple-negative has a higher progression rate. Again, this is because the disease is cause directly by the “non-driver” mutations, which are associated with progression.

[EPguy in reply to cmc_ufl]

Would this suggest having SCT at the earliest opportunity upon the unlikely event of transformation, if eligible?

I know this is recent general advice vs waiting for further progression, but maybe to 3-Neg it's particularly good practice.

[cmc_ufl in reply to EPguy]

My specialist indicated to me that triple-negative is certainly an important factor in deciding the timing of SCT.

[Aneliv9 in reply to cmc_ufl]

did he mentioned what the outcomes of SCT are?

[Mirror368 in reply to cmc_ufl]

what is SCT?

[EPguy in reply to Mirror368]

Stem Cell Transplant. It effectively replaces the marrow with that from a donor. It's currently the only curative option for MPN but has risks.

[Mostew]

I know its easier said than done, but please try to focus on the positive things you CAN do something about.

Perhaps stop looking at info thats giving possible outcomes for now?

Xx

[mhos61]

I’m so saddened to witness your distress. As someone who has suffered from anxiety in the past I really do empathise.

Please believe me when I say, your anxiety has escalated to a level that requires professional intervention.

Ruminating in this manner will bring no further insight in to how your ET will pan out. Acceptance of your disease is the only way forward, but I do believe you need professional help with that.

We’re all here for you, but please seek help. Xx

[Aneliv9]

yes i will seek for professional help , although i am very mad about the fact that i will just need to take some pills on order to not feeling this ugly truth.. I wish someone could take.this disease of.of me right now. I cry all day, i cant live with this fear that maybe in the next 20 years i may face a SCT that even that will not be successful. It is like i just wait to die

[mhos61 in reply to Aneliv9]

That’s a good start (seeking professional help).

It’s not about taking pills to suppress this ‘ugly truth’. The key is to change your way of thinking through counselling, so you don’t feel this ‘ugly truth’ in the first place; it is only your perceived truth.

I would advise you to seek Professional counselling through your GP. It maybe that you need to take medication in the short term just to calm you down and help facilitate treatment.

Please take that first step and ask for help. In the interim try hard to divert your attention away from researching your condition! Xx

[Aneliv9 in reply to mhos61]

pills cant change anyones thinking. I also have a counselor but in front of this scary probability, no one can help me adjust. It is a nightmare that just can't end

[mhos61 in reply to Aneliv9]

Agree, pills can’t change thinking. I think you may have misinterpreted. I meant you need to change your way of thinking, but because you’re so distressed you may need medication to facilitate counselling to address that.

Don’t give up hope. Aime mentioned asking Maz for a ‘buddy’ maybe that approach along with counselling would help you. Xx

[Aneliv9 in reply to mhos61]

i am on counselling but the fear of progression never calmed down. My heam 4days ago told me not to worry, that i wil live as any woman in my age, that i will grow old etc. and that the risk of progression is 15-20%.

I never thought this was right, i believe she just says what she have heard. I will go to the best MPN specialist in 10 days, but my expectations that i will hear something different or more hopeful is low.

[mhos61 in reply to Aneliv9]

I don’t know how long you have been in therapy. If it’s been awhile with no improvement speak with your therapist about this; a different approach maybe all that is required.

But also ask yourself is there anything you can do to improve the efficacy of therapy. For instance. Lifestyle changes. Considering medication in the ‘short term’ could be looked upon as a helping hand rather than a negative. Taking a break from researching/analysis of your condition. If all else fails, maybe a change of therapist might be required.

Glad to hear you’re consulting with an MPN Specialist. Be sure to discuss the mental impact your diagnosis has had on you with him/her.

Xx

[Carthe in reply to Aneliv9]

how did you get on with the specialist?

[Jw59 in reply to Aneliv9]

put your trust in The lord. He has this and can carry all you burden. Educate , hydrate, eat well on the foods that dont agrivates and meditate and yiu will live a very good life . Praise the lordhe has you

[FG251 in reply to Aneliv9]

I’m so sorry to read your posts about health anxiety, which I have also experienced since my ET diagnosis, albeit in a milder way.

I can’t add very much more to the excellent advice of others here regarding seeking professional help, but here’s my contribution, for what it’s worth:

‘Possibility’ (of disease progression) isn’t the same as ‘probability.’

Everyone on this planet is ‘wait[ing] to die,’ to coin your phrase. I play the organ at a local crematorium. The other day, on the service sheet, was a funeral for a ‘Non-Viable Foetus’ followed by a service for a 104-yr-old woman. The rest of the day had services for ages in-between - including a man of around my age (54). None of us knows what lies ahead, and people get diagnosed with all sorts of conditions at any age. I once Googled ‘100 worst diseases’ and MPNs didn’t even appear on the list! There are so many people who defy medical odds, too. One woman I met recently was given two years to live - 60 years ago! Medical research into MPNs is growing exponentially and the treatments available now (and probably for SCTs too) will not be the same in 10 years’ time. The odds of a long lifespan are greatly in your favour, provided you can control the cardiovascular risk factors and take your medication. Transformation to MF or AML are ‘late and rare complications,’ according to many MPN experts and studies, and ET is a very indolent condition, for the most part.

I began to ask myself if I felt well ‘TODAY,’ and if the answer was ‘yes,’ which it generally always was, I just tried to make the most of each day. This takes practice and effort. Some call it ‘mindfulness’ and, as someone here predicted two years, my ET anxieties eventually subsided - not completely, but it no longer dominates my every waking moment.

However you choose to come to terms with ET, I wish you luck and healing thoughts.

[Mostew in reply to FG251]

great thoughts ,well put.

[Threelions in reply to Aneliv9]

macmillan have wonderful councillors. I had a course of counselling with them and it helped tremendously in dealing with my anxieties & worries around my diagnosis.

I would give them a call & explain your situation. They will understand & offer you assistance.

In the meantime you’re in my prayers & thoughts .

[Aime]

hi Aneliv9, please don’t panic and despair. I am double negative for jak2 and Xeon and I was told probably triple negative for Polycythaemia. I am not a medic but find out all your facts before panicking. Ask Maz, forum facilitator, to find out for you, to confirm this information is correct. Even if it was, I think the transformation rate from ET to MF is quite low but again, that’s another answer you need.

Please don’t despair, many of us on this forum have been where you are and are still here. Maz can also provide with a buddy to speak to who has similarities with your condition. Lots of people will support you, so please keep posting, so we can do that and ask Maz if she can get answers/info for you.

Kindest regards, E hugs too, 😻😻

[Aneliv9 in reply to Aime]

PV negative for mutations maybe reactive? What did your heam told you? I am really in panic and despair. Like my life is going to end soon

[Aime]

I’m negative to the mutations, so my diagnosis is idiopathic erythrocytosis. In other words, they don’t know what’s causing too many red blood cells, so I’m at the same risk of stroke, heart problems, etc.

I was told as long as I am monitored (blood tests every 3 months at moment), then I should be fine. My attitude towards illness now is that it could be worse but I could be run over by a bus tomorrow, so it’s better to live for today and not worry about things which you can’t control. The unknown is the same for everyone - a crystal ball would be handy.

I think you should have a chat with your gp and ask for help to cope with how you’re feeling just now. Im on sertraline and have been for many years. It helps me put things in perspective, take one step at a time when health issues loom and live as normal a life as I can. Please see your gp for advice.

Take care, E hugs, Aime 😻😻

[McBec]

OK Anekiv9 - first breathe. This is said from a place of love - your panic is spiralling and has control at the moment, and you need to step away from google searches.

I was diagnosed with ET 32 years ago and am classed as high risk. Even on medication my platelets are over 1000 and I am fine. I fully expect to go on for a long time yet as I am looking forward to turning into a mad old cat lady.

When I was diagnosed, I was one of the youngest in the country because blood tests were just not routinely done then and everything seemed scary because all of the research was from 60-80 years olds. This is now not the case. Since then the research has been amazing, mainly led by Doctor H. We know so much more and there are more medications available. I now know that I am triple negative - that has not changed my attitude towards this. It hasn't made it better or worse, it just gives more information to the experts who treat us.

Yes something bad could happen tomorrow, something to do with ET or a car accident or lightening strike. But you are here now, you are OK and you have people to reach out to when it gets overwhelming.

Make sure you speak to your therapist, journal if it helps or write down how you are feeling in the moment and let your therapist read it (if you are comfortable with that). I know that I couldn't always explain or remember how I had felt when I saw my therapist - even when it was gibberish it helped explain my emotions. There are also support groups available. See if your local hospital has one, it might help to meet others in similar situations.

Take someone with you when you see your specialist as you need someone to listen to all of the information and I think right now, you will focus on the negatives.

You will be OK, we understand and we are here when you need us.

p.s. In regards to one of your earlier posts because we believe ET developed In Utero for me then that puts me at nearly 46 years without progression to anything else. I hope that helps.

[Aneliv9 in reply to McBec]

why do you believe that ET developed in utero for you? Has your mother or father ET?

[McBec in reply to Aneliv9]

No - and there is nothing to suggest that ET is heredity. This is one line of thought of my specialist - as I'm triple negative. I will be doing a genetic test to see but understandably they have had other things going on recently and there isn't a lab that is doing this at the moment.

[Mazcd Partner MPNVoice]

Dear Aneliv9, I am so very sorry that you are feeling like this and are obviously very distressed and upset, I have sent you a private message. Best wishes, Maz