Thrombocytosis with MPL blood mutation and MDS/MPN

Hi Gracemead and welcome to this corner of the Community but sorry to hear about your diagnosis.

I am Mike and I help out around our blood cancer groups.

I don't have MDS but for some context I have been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer…… navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.

In the early days it’s all about understanding and once you get more information and talk with others the journey will get more understandable.

So let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Group….. the one I attend does have a few folks with MDS in it so worth checking.

As always the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

You may also want to check out MDS Support UK for some good information and have various support platforms.

Always around if you need further help or just want to talk.

Hi Gracemead,

Welcome to the group. I saw your post and wanted to reach out because I have also been diagnosed with Essential Thrombocythemia (ET) and share many of the same symptoms.

I’m 22 years old, and my hematology consultant hasn't started me on ET-specific prescription treatment yet, feeling that my age makes the risk of long-term side effects or complications higher, and relying instead on mental health medication to help manage the anxiety around the condition. In addition to severe fatigue, I experience daily morning bleeding from my nose and mouth, noticeable changes in my skin color, and occasional pain or intense pressure in my hands and chest, where I can feel abnormal blood flow and loss of function in my hands.

Given how much overlap there is in our symptoms and experience with this diagnosis, I would really appreciate the chance to connect and chat with you about how you've been navigating your treatment and coping day-to-day.
Best regards,

Umer Ali

Hi Gracemead, welcome to our incurables group although I would prefer to have met you elsewhere. I see my good friend Mike The Highlander has contacted you with a lot of excellent advice. He has a wonderful wealth of knowledge that will be useful for you.

I'm afraid I don't have your particular rare cancer but I do have another rare blood cancer, MDS, which was diagnosed as long ago as March 2015. 

As Mike says, on diagnosis it's such a stressful and challenging time. I can remember my own diagnosis and the tearful times I had. I sought help from counselling through a local Northern Ireland charity that helped me through the initial few months. I currently receive three treatments a week, every week, that encourages my bone marrow to produce more red and white cells, something of which I have low levels. 

Your journey is a little more complicated than mine so I'm looking forward to hearing more from you in the coming weeks and months about how your treatment is progressing. 

This group is full of such friendly, sympathetic, empathetic and helpful people who understand what you're going through Gracemead.

Take care Gracemead 

Tvman x