MDS MPN overlap

[massaya]

I was diagnosed with MDS MPN overlap syndtome almost 2 years ago. I am hoping there is someone else dealing with this diagnosis, and we could be a support to each other? Having looked through the posts, there seems noone out there? Help!

[Ednama]

My husband was diagnosed with myleofibrosis and Myleodisprasia five years ago at the age of 63. Is that the same as you?

[massaya in reply to Ednama]

Hi

Thank you for your reply. I am not sure MF I was told is not the same, but having two things at once seems to be similar.

I guess these conditions are so rare we are all in the dark a little.

When I was diagnosed they had just separated my condition from others, so it,s difficult to know, especially if they keep changing the goal posts, so to speak.

Symptoms seem to have things in common, what is your husbands symptoms?

[Ednama in reply to massaya]

His MDS was RARS which started to mutate in 2013, the MF was stable. His main symptoms was fatigue and itching. The only answer was a SCT which he had in 2014. He was very poorly 6 months after the transplant which resulted in 11 wks in hospital, and has left him with renal failure and dialysis dependant. However his health is improving daily and is doing very well now.

[massaya in reply to Ednama]

Hi Edama

I am afraid ypu lost me with RARS, but I do know that fatigue is common to all the conditions, itching seems more common to PV. I am sorry your husband was so ill, particularly the renal problems. My kidneys were under par even before I was diagnosed, so my long term prognosis isn't good.

My weakness seems to be my chest, and I havejust spent 12 days in hospital with a bad chest. If you can go on to the American site Patient Power, they recently ran a forum in London which included presentations by the senior doctors at Guys. I found it helpful. It also included ideas to cope from patients, who talked about thier experiences. Just put in the diagnosis and follow the links. You do hsve to join, but I haven't found any ptoblems with that. They also have lots of infirnation, mainly based on work in theUS. I hope that is some help, Regards

[Ednama in reply to massaya]

Sorry RARS means refractory anaemia with ring sideroblasts, which is a MDS. His treatment is in Manchester which we have found to be excellent. It's interesting to know there are other people with this rare overlap of MPD/MDS and hopefully they are doing more research which will result in some kind of treatment.

We send you our good wishes.

[massaya in reply to Ednama]

Hi Ednama

I am in London at Guys, and the doctors here are definately working on the symptoms and treatments, as well as going to conferences around the world on these rare conditions. So I have every confidence that they will find answers.

Meanwhile I hope uou snd your husband have a good Christmas, and a positive New Year

regards

[Hidden in reply to Ednama]

Hi I have been told that with having JAK2 Positive ET and Sideroblastic Anemia that I have RARS-T which is as you sat Refractory Anemia with Ring Sideroblast and Thrombocythemia - it is just good to know I am not the only one with more than one of these things.Caz

[fjewell in reply to Hidden]

Cazinmelita, I was diagnosed with RARS-T (MDS/MPN overlap) in 2015. We are very rare indeed. Apparently only 12-14 people are diagnosed with it in a year in the US. I'm looking for others to compare notes. How are you going with the condition? Has there been any discussion about SCT?

[Hidden]

Yes me I have MPN JAK2 Positive ET and MDS Sideroblastic Anemia - I thought I was alone as had not seen anyone else with this.

[massaya in reply to Hidden]

Hi Cazinmelita,

your diagnodis seems closest to mine, of all the replies I have recieved, except I am not sure about the ET and JACK2, I do have anemia, with regular blood transfusions recently. I hope this helps you feel less alone.

[Eadaoin]

I have ET/MDS diagnosed in 1998. Was told then that an overlap syndrome of Essential Thrombocythemia and Myelodysplasia is rare. None of the genetic mutations have shown up as positive. There does not seem to be much research on this overlap but I remain hopeful. My conditions are stable so far though with a raised platelet count all the time (ET) and now only need blood tests for it every 12 weeks. I have been having a bmb every 2 years to monitor the MDS. So far so good! Fortunately I have great faith in the Hospital (Guys) and the Haematology Consultant (Clare Harrison) where I attend.

[massaya in reply to Eadaoin]

Hi Eadaoin

Its lovely to hear someone appreciate the Guys Team. I particularly would like to mention the specialist nurses, or Yvonnes Team who are such a support. I am being looked after by Dr Radia who is equally great.

As to our diagnosis, as I understand it, my particular overlap or multi myyeolosis was only separated and identified by the WHO almost simultaniously with my diagnosis in the Spring of 2014.

Last year I was fine, then in July this year my blood count dropped and I have had to have transfusions. Other than that I do have tireness and night sweats. I seem to be suseptable to chest infections, so I have been given a low dose antibiotics to take throughout the wintet to protect me. At the moment I have bimonthly checks.

[fjewell in reply to massaya]

Hi Eadaoin, I was diagnosed with RARS-T (essentially an ET/MDS overlap) in 2015. I'm looking for others to compare notes. How are you going with the condition now? It sounds like you have been very stable. This is really reassuring. Has there been any discussion about Stem Cell Transplant in the future?

[Eadaoin in reply to fjewell]

Sorry not to have replied earlier. Hope you are still managing. Yes I am lucky to be stable with occasional iron infusions to bring back my haemaglobin level.Now going for “bleed and go” regularly and get to chat on the phone about the results to my Specialist Nurse. See doc once a year unless problems show up in between. I also have heart problems and have had a pacemaker for 10 years. It comes on if my heart suddenly slows. Changed to Warfarin then m(Aspirin for just ET previously but could not be on both)but I recently changed to one of the new anticoagulants. In a few weeks will have a heart op which will leave me totally reliant on the pacemaker for keeping my heart ticking. None of this connected to the blood issues but does rather complicate life.There is good contact between Claire Harrison and Cardio Consultant. I feel so lucky to be under GuysToms.

[Anne4boys in reply to Eadaoin]

are you on any medicine ?

[massaya in reply to Anne4boys]

Hi

I am on nothing, just blood transfusion if my count goes below 90. The aim to keep it between 90 to 100.

[fjewell in reply to Eadaoin]

Hi Eadaoin, I was diagnosed with RARS-T (essentially an ET/MDS overlap) in 2015. I'm looking for others to compare notes. How are you going with the condition now? It sounds like you have been very stable. This is really reassuring. Has there been any discussion about Stem Cell Transplant in the future?

[trevic]

I was originally diagnosed with MF but had so few MF symptoms they looked again at my bmb. They then decided I had MDS. They now think I'm somewhere between the two and are calling it MDS with fibrosis or fibrotic MDS! Anyway treatment is proving problematic so it looks like transplant is the best option for me.

[massaya in reply to trevic]

Hi Trevic

I looked at your past posts and I felt so sorry that it has taken so long for you to get to Guys. At least now you are with a centre of excellence. It is still not easy as we all have very rare conditons and the doctors are still trying to identify the symptoms, never mind the treatment and care. There is quite a lot of information on an A merican site called Patiient Power, I used it to explain my condition to my son. There was also a forum recently in London, byPatient Power, and a lot of the work they are doing is explained by Dr Harrisson and Dr Radia. Worth a look if you are interested.

It's the rarity that makes things difficult, not only for us, but fir the doctors too. Good Luck

[crapaud in reply to trevic]

Hi Trevic,

Your condition sounds very similar to what I went (am going) through.

Initially diagnosed with PMF but JAK2 -ve and no other mutation that was identifiable my diagnosis was changed to MDS-U plus MF.

I was treated for almost a year with Pegasys and then took the plunge and underwent an SCT.

I was lucky that my local hospital specialises in blood diseases including MPNs. For good measure I consulted the number 1 French specialist in Paris, who confirmed that the extreme rareness of MDS-u ➕ MF merited that I seriously consider a transplant, which is what I did.

Good luck in your treatment and the road ahead.

Gary