Mds and ET.

[nodmeister]

Had the results of my latest BMB yesterday and I couldn't believe what I was told, I also have Myelodysplastic syndrome which is also rare! Along with my triple neg E.T. one of the main symptoms is fatigue so you can imagine how I'm feeling. Anyway got to get on with things, onwards and upwards.

[Karol_Rua]

What is myelodysplastic syndrome? Hope you're not having nasty symptoms

[nodmeister in reply to Karol_Rua]

On my bit of paper here it says " It's a rare blood cancer where you don't have enough healthy blood cells!!🥴 Suppose someone has to have it.......

[MaggieSylvie in reply to Karol_Rua]

There is a genetic mutation that stops some of the haemoglobin blood cells from maturing, so when they emerge from the bone marrow they don't do a proper job of getting oxygen round the body. Hence breathlessness.

[nodmeister in reply to MaggieSylvie]

Interesting, still going through the bumpf on line.

[mhos61]

Sorry to hear this nodmeister.

I don’t know how significant this is, but you seem to be a positive person regardless.

Best Wishes

Mary

[nodmeister in reply to mhos61]

Thanks Mary. Yes no point being anything but positive.😃

[Aneliv9]

What is the medical plan and prognosis for your situation?

[nodmeister]

I'm on 500mg of oral chemo, Hydroxycarbamide for E T and I will just be monitored for now. Back in 4 weeks. 😁

[Aneliv9 in reply to nodmeister]

What is your prognosis with Mds on top of ET?? Do you have more odds of progressing to full MDS?

[nodmeister in reply to Aneliv9]

As yet I don't know, I'm back in 3 weeks with my questions.☺

[Jlah]

Sorry to hear this. Keep being positive it definitely helps even on the gloomy days. Jx

[nodmeister in reply to Jlah]

Thanks, I believe positivity is a great contribution to health when there is a problem and of course GIN!!😄🍸

[Wyebird]

I’ve just googled MDS. What a blow!!

What is your next line of treatment. Is a stem cell transplant a possibility ?

Sending LOTS of Love and hugs

[jillydabrat]

Hi nod

Did you have other symptoms other than the usual? Had to admit I didn’t know what this condition was until I googled it. If the Hydroxy helps you like it helped me then you are on to a winner. Take care of yourself and, as everyone has said, be positive xx

[nodmeister]

Hi, it's the fatigue that's the hardest closely followed by headaches. I've just started back on the drugs ad last year when my dose was upped I got panniculitis and that wasn't pleasant. All g ood fun and games!😂

[MaggieSylvie]

Hi, I was diagnosed at the start of June out of the blue with MDS/MPN. I thought I just had anaemia and they could give me some iron or something! Not so simple. So I was given a booklet on MDS and thus led to believe that MPN was just a sub type of MDS. I am still not sleeping, trying to work out what I have, spending hours online, and have never received a proper printed diagnosis - just a few scribbled words on a scrap of paper that I had written my questions on. It's only through joining this site that I have come to realise that you can have MPN (or MPD as I was told) without having MDS. But if MDS is the umbrella term, is that even possible?

I am not feeling too bad, but six days after my diagnosis, I slipped a lumbar disc, so what with arthritis as well, I am pretty slowed down. Have they offered you any treatment? I am just "watch and wait" and a little aspirin every day. I think I understand everything in layman's terms but when you look into it, and meet others (in local support groups) you notice that they can describe what they have right down to the last hormone and gene. I don't know whether the mutated gene that is causing all the trouble is JAK2 because I've read about it but never been told.

It is so good to finally "meet" someone who has the same diagnosis as me, and we'll probably find that we are not identical!

Looking down your string, I see that you are having chemo. I am low risk, and I read yesterday that if you have MPN you aren't likely to go on to full leukaemia. I was told I couldn't have any treatment because of the crossover of the two conditions and then, at my last appointment, I was asked if I wanted a transfusion to help with the fatigue, and I refused. I didn't think I was much more fatigued than I have been since getting fibromyalgia years ago, and it wasn't worth clogging up my liver with iron that I don't need. I think I have ET too, but only based on the scribble I was reluctantly given.

You've had MPN for quite a while, it would seem. How is that affecting you? Feel free to reach out to me.

[Cja1956]

Hello, Nodmeister, sorry to hear of this new diagnosis.. I’ve had ET Jak2 since 2008 but last year I started feeling even more fatigued and dizzy than normal. I developed anemia and my platelets kept rising. My hematologist seemed really puzzled so I switched to an mpn specialist in September. She gave me a bmb, extensive lab work, as well as an ultrasound. My online medical chart said I had mds/mpn which scared the heck out of me. She said another doctor put that there and instead I am in the early stages of Myelofibrosis, which also is no picnic. Now I’m on weekly visits to the hospital for labs, an epo injection, and follow-up with the doctor. The MDS/Mpn is still in my chart so it’s all very confusing. I’m also still on hydrea but she took me off jakafi this week and put me on a new drug called Inrebic. It’s all very overwhelming. I wish you all the best on your next journey.

[Anag]

I’m so sorry about these news Nodmeister. This is definitely a shock now but the shock will pass. Yes, we must all get on with things. But walk through the shock, don’t just block it out. My mother-in-law was diagnosed with this in June and now we go to our appointments together! She 93 and I’m 54 (ET). We are living as fully as possible. Since her very advanced age, there’s no therapy given to her. But, my TCM doctor made her a potion for her symptoms and it has helped her a lot! She’s got support for her organs, blood, fatigue, circulation and it all helps the breathing. It may be something to look into. I wish you some creative solutions outside mainstream medicine. They don’t know everything! 🙂

[nodmeister]

Thanks Anag. I'm not the sort to wallow in self pity and I have a good network around me. I also find it's handy for the hoovering, I play exhausted and someone else does it😃

[Meatloaf9]

Hi Nodmeister, sorry to hear about another problem you have to face as if the original one was not enough. I was wondering if you had been having a lowering of all of your blood counts prior to this new diagnosis. Such as your RBC's, Hct, Hgb, WBC's etc. Mine have been slowly dropping over the last 10 months and I am wondering if I am headed toward MDS or MF. Thanks and best wishes on your new journey and like everyone else always says don't rely on what you hear from Dr. Google go straight to a MPN specialist to get the full story. I am currently diagnosed as ET.

[nodmeister]

Hi Meatloaf9, thanks. I was on the official MDS site. I don't muck around with 'general info' and only gone on the official site and of course groups like this. I had an iron transfusion last year and a couple of dodgy white cell counts but other than even more fatigue nothing, but I will be in charge not anything I have, and of course the obligatory medicinal gin🤣. Thanks.

[Aneliv9]

Can i ask you if the diagnosis of ET back then,was through a bone marrow biopsy? Is it possible always had mpn/mds?

[nodmeister]

Yes it was although I am triple neg. I had this bmb as they have uncovered some more genes that can cause ET, so over the last 6 years this little mpd has crept in sometimes over that period.