New to this forum and looking for advice

[SMCA11]

Hello,

I am so glad I have found this support group and I hope I can get some advice.

My father had just been diagnosed with MDS/MPN Overlap Syndrome. This is a very rare condition and I am finding it very hard to find any information at all online.

Here is the timeline so far -

I noticed my father was losing a lot of weight and then he started with uncontrollable itching. I made him go to the doctors and they ran blood tests. The blood tests showed that he had too many white blood cells and not enough red blood cells so I already suspected this was some kind of blood cancer. This was August. At the time the doctor said they would need to run further tests but in the meantime they would try to control the itching by putting him on antihistamines and giving him some creams. These did not help at all. He has been unable to shower or sleep properly all this time and it is driving him crazy. Since then he has also been prescribed antidepressants which are not helping either. On the 22nd September my father had a telephone consultation with a blood specialist who told him that he was going to have to go for a bone marrow aspiration as the blood results were inconclusive. When the results came back from this he was told that his bone marrow was fine but they would need to send off a blood sample to look at his DNA. On the 29th December he got a telephone call from the consultant and they told him he had MDS/MPN Overlap Syndrome, they would see him in 6 weeks time and that he should get a blood test from his GP practice before this meeting. He wrote it all down wrong and told me it was MDF/MPM. He was not told what this actually was. I googled it at home and found out exactly what it was. (I did not mention anything to my parents as I did not want to worry them as I may have got it wrong and told myself that if he did not have to see them for 6 weeks then I was maybe not as serious as I thought) I was shocked that he was told this way, that it was not explained to him properly and that he had to wait a further 6 weeks to actually see his consultant face to face. On Saturday he received in the post a book about MSM and a book about MPN and an accompanying letter from his consultant that said he could not locate any information to send him about the overlap syndrome. Until this my parents had no idea this was blood cancer and are now obviously very upset and worried. They now have 6 weeks to wait until they can get some proper answers.

I am hoping that someone on this forum may have also been diagnosed with this condition or someone may know where I can go to to find out more information.

I would like to know if we should start to push for answers before he sees his consultant in 6 weeks and what sort of questions we should be asking at this meeting.

My father is a very fit and active 70 year old who has never been ill. He is not very computer literate which at the moment is maybe a good thing!

I really hope someone out there can help. This has been going on since July and the itching and lack of sleep are very debilitating. It is the worst at night but can happen at random times through the day also. It is horrible to see him suffering like this. I just want to try and see what treatments there may be that may be able to help. We know there is no cure for this.

[chris]

Hello there

So sorry to hear what an upsetting and uncomfortable time your Dad is having. Because this is a patient-to-patient support Forum, none of us are medically trained and therefore nobody at MDS UK can give you any medical advice. What we can do is point you to reliable sources of information and to posts on this Forum that discuss similar issues so that you can be helped to make better-informed choices. You may have seen that there are several types of MDS/MPN crossover diseases and without knowing which specific one it is, it is hard to know where to direct you. Hopefully, your Dad will have received a letter from the consultant specifying what the disease is actually called? Once you know this, can you come back onto the Forum and post more details please? I can then also point you to a handy "menu" of questions from which you can select the ones you really want to know about.

However, one of the commonest MDS/MPN overlap diseases is Chronic Myelomonocytic Leukaemia (CMML). If this is what your Dad has, here is a link to a topic all about CMML and itching. Psoriasis is also quite common with CMML. Sadly, there do not appear to be many effective treatments and it may be a good idea for your Dad to ask for a referral to a dermatologist to see if they can help - ideally a dermatologist who knows about the implications of haematological conditions too!
viewtopic.php?f=19&t=508

Something else to consider would be for your Dad to ask for an additional opinion at a Specialist centre for MDS/MPN overlap diseases. There is a list of these on our website:
https://mdspatientsupport.org.uk/what-i ... s-centres/

Because MDS/MPN overlap diseases are rare, to my knowledge there is not a charity which specifically supports people with this disease but at MDS UK we do support people with CMML.

Hope this is helpful and I look forward to hearing from you again

Chris

[SMCA11]

Hi Chris,

Thank you so much for the reply and the information.

We do not yet know what type of Overlap Syndrome he has, so are a bit in the dark with everything.

That is great advice about the dermatologist. His GP has said he will get a referral to one so we will make sure it is one that knows about the implications of haematological conditions also.

Thank you again and keep up the good work.