Mutations

[Nurset]

As other individuals have said I think of all the questions when I leave the hospital. I have been told I have mpn/ mds overlap. However BMA is negative for all mutations. Is this good or bad? My main problem is high platelets and history of clots and am on Hydrea

[ccsial]

I would be happy to have no mutations.

[WileyFrench]

I'm ET triple negative - no mutations. Maz (the administrator of this site) posted just a day or so ago a response from a panel member at a recent forum, which said that ET triple negative is the most benign of the MPNs, so I'm good with that!

[MaggieSylvie]

I have MDS/MPN. Is that the same as you, or does it make a difference that our diagnoses are the opposite way round? I've tried adding this to my profile but the site just doesn't recognise it and it is not in the alphabetical list either. I know it's rare, but surely on a site like this, it should show up somewhere!

[Nurset in reply to MaggieSylvie]

Hi Maggiesylvie

Yes it is most likely the same. The important thing is the overlap which I’m told makes treatment challenging. How long have you lived with it and are you on treatment?

[Mazcd Partner MPNVoice in reply to MaggieSylvie]

Hi Maggie, there is a MDS UK Patient Support website which might help you

mdspatientsupport.org.uk/

[MaggieSylvie in reply to Mazcd]

Thanks Mazcd. I actually have joined that site but have this one coming through on my emails as well, as I have other issues besides MDS, which is how I came to join - prior to my MDS diagnosis. There are so many types of MDS that it is hard for any of us to find someone similar to ourselves.

[MaggieSylvie]

Oh, thank you so much for getting back to me so quickly. I was diagnosed on June 10th this year and am on Watch and Wait, with my next appointment being straight after New Year! No treatment other than a little Aspirin daily. I like your expression "it makes treatment challenging". That puts it in a nutshell.

[hunter5582]

I go to all of my appointments with a written agenda and list of questions/issues. I have learned that when managing multiple conditions there is no way to keep track otherwise. I have a similar challenge to yours in the making of things even more rare than the usual rarity of an MPN. JAK2+PV (1/300,000) , with Neurofibromatosis Type 1 (1/3000), with adult Pilocytic Astrocytoma (1/60,000), an arrhythmia and a host of inflammation related secondary issues. I see more specialists than you can conformably fit in a small bus!

I have found that it is often the case that providers do not have answers for many of the questions we have. They also do not always agree. With the more rare disorders or clusters of medical conditions - sometimes the answers are not clear. The only way to get answers, though, is to be sure to keep asking.

All the best.

[lucieboo]

History of clots? High platelet count? Shouldn't you be taking an anticoagulant. Ask your hematologist.

[Nurset in reply to lucieboo]

Oh don’t worry my blood is being kept very thin. I had a severe clotting episode on rivaroxaban so I am now on warfarin