Hello Nitromaster and thank you for posting,

I am sorry to learn of your situation this must be very difficult.

You mention that you are finding the symptoms you are experiencing depressing. I wondered if you are in contact with the haematology team at the hospital and have a specialist nurse (CNS) and if they are aware of how things are. They may be able to help manage this. It may also be helpful to speak with your GP.

I was unsure if you had any specific questions or what support you might be looking for.

It can be difficult to find information and support when the cancer is rare as in your case. If your hospital has a Maggies Centre or a drop-in Macmillan Centre, you may find it helpful to speak to someone there. There are also organisations like Leukaemia Care or MDS UK both offer support to people in a similar situation, which I hope is helpful.

If you would like to hear from other people on the forum it may be worth making another post on the 'Living with Cancer' page where more people may see your post.

I hope this helps, if you would like to talk things through with one of the nurses on the helpline we are available between 9am and 5pm Monday to Friday and the freephone number to call is 0808 800 4040.

Take care,

Jemma