Large granulocytic Leukemia

Well that's a rare one..  Not often I see this diagnosis on any forums..

My leukaemia is a different type and I was diagnosed in 2005, so 14 years ago now.

Your leukaemia variety is also very often one that develops very slowly with a natural lifespan.

But I do know, having been there, that after the initial diagnosis it can be very worrying.

Macmillan's have nurses you can talk with which might be helpful.

I have an extensive range of leukaemia information resources and people whom I could contact for information and research papers.  Let me know if this might help you.

It would also be useful to know which country you write from and which county, as then I could recommend a specialist doctor in your area.

Finally I would comment that we are both lucky in that the amount of specialist knowledge and new drugs that are now available has made a simply massive difference in the treatment of all leukaemias.

Dick

Hi Fiona Pipkins and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here.

Your post has been moved to this area as these are a few of the rare types of blood cancers. I did use the site search tool and could not find a hit on this type of Leukemia.

A blood cancer diagnosis can bring a lot of stress on a family but talking with people who are on the same journey will help a lot and will help reduce the whirlwind wind that is rushing in your head.

The fact that this is rather rare means it just that harder to get clear information but on the whole a lot of treatments used tend to follow the same type of journey.

The appointment with the Haematologist will help answer questions so use this time to start a note book for all the questions you need answers for.

The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’the note book comes out.

A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot and I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.

The note book should have questions like:

What type of condition has been diagnosed? - exact name and grade etc.

What are the proposed treatments Chemo, Radiotherapy......?

What are the names of the Chemo Regime?

How many cycles of Chemo and how long will each cycle last?

Does this require inpatient time (over night)

How many sessions of Radiotherapy and how long will all the treatments take?

Remember to express any reservations about treatments........ an example - I have Thoratic & Lumber Spondylosis - Spinal Osteoarthritis so I found out in the early stages of my radiotherapy that I had to take some pain killers an hour before I had my treatments as I found it hard and painful to lay on the radiotherapy table for long periods of time.

We also have our general Leukaemia forum so worth a look in there.

Keep posting as we can help walk with you through this time.