1st clinical appointment,what should I ask?

[Scream-N-kick]

Need a little help please.

I was diagnosed with CML late August heard nothing until appointment letter last week, thanks to my GP enquiring on my behalf. Think they put me on a watch and wait. But saying that without further blood tests how do they know what I need?

I’m wondering what I should be asking the haematologist.

Should I know anything about my wb count? If so what should I be looking for?

Should I be pushing for treatment or wait?

Should I ask about possible medical conditions like fatigue?

Things I should be doing myself?

I rarely see a GP, I’m a “I’ll get over it guy” but recent events have been different. My GP has put me on 5mg folic acid tablets because of a low red cell count, this has made a huge difference to painful toes and feeling tired. So waiting maybe a good option instead of treating my CML. Not that it will go away.

I’m going on my own, I was going to ask my mother to join me but she has health problems of her own so I am reluctant to drag her 100 miles just for a consolation. I have a memory of a goldfish so I will be writing stuff down but I don’t want to look an idiot either. I’ll keep that to here for now.

I know medical questions can’t be answered with any firm answers here, but a general guide will help.

Thanks for reading even if you can’t help.

Still Kicking and Screaming. X

[Jm954]

Hi Scream-N-kick,

there are specific genetic tests done to confirm and diagnose Chronic Myeloid Leukaemia (as opposed to CLL - Chronic Lymphocytic Leukaemia which is a type of non Hodgkin Lymphoma and often not treated but put on watch and wait) so I hope those have already been done. If you did mean CLL then none of the following applies!

It would be very unusual not to be treated for CML immediately because the white cell count can increase quite quickly and cause problems so I'm concerned that you haven't been followed up by a haematologist much more quickly.

If you're fatigued then that should improve once treatment starts, your haemoglobin starts to rise and platelets and white cell count falls.

Treatment is a targeted therapy such as Imatinib or similar.

Here is a information leaflet.

bloodwise.org.uk/sites/defa...

Let us know how you get on

Jackie

[2003UK]

Hi, I have found writing a list of my questions, fears, thoughts and all symptoms helps me. I do not believe that each blood result is taken in isolation but that my personal history, patterns of blood tests, if you have them, and other factors are all taken into account before deciding the way forward.

I was diagnosed 15 yrs ago and I have always been on watch and wait and I feel I am a very lucky girl and long may it last. I feel research and trials are coming on in leaps and bounds and more targeted to the patient.

I still get nervous before appointments and tests and over the years I have learnt to understand and manage the symptoms I was diagnosed with, yes, even my main one,nmy fatigue.

I would say so many of us have to write down the answers to our questions, goldfish we are. I have also learnt to ask that follow up question as well.

Don't forget the Leukaemia Care Charity helpline is there for you and open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444.

I had to laugh at 'Kicking and Screaming' I have found that as my son says 'we are where we are' and with my limited energy levels given that one up. Take care and let us know how you get on.

[NicoleLeukaemiaCare]

Hi there. We have a booklet on CML which can be found on our website, it includes a section on questions to ask.

leukaemiacare.org.uk/suppor...

It does sound quite unusual to be diagnosed with CML and not be treated straight away - thats worth questioning.

Nurse Fiona is on the freephone helpline until 2pm today and Nurse Angie is on the phone line 7pm - 10pm tonight and tomorrow (thursday and friday) if you wanted to chat it through with a haematology nurse.

[Jm954 in reply to NicoleLeukaemiaCare]

I looked for the LC booklet and couldn't find it. Can you provide a link please

Jackie

[HAIRBEAR_UK in reply to Jm954]

Hi Jackie here is the link to Leukaemia Care booklets leukaemiacare.org.uk/suppor... this is the main CML booklet PDF media.leukaemiacare.org.uk/... this is CML treatments media.leukaemiacare.org.uk/...

[Scream-N-kick]

I’d decided on my first question before I wrote my previous post “what type of Leukemia do I have?”

Reading posts on here the past couple of months I am more confused about my condition, I was tested back in August by my hiv consultant who was worried about CLL but results showed CML. I have regular blood tests for HIV which is under control I’m undetectable and have been for a number of years but she was worried about my wbc for awhile so arranged for further tests.I’ve started to feel better I have some energy back ( couple of days),

Now I need to ask real questions to my haematologist. They are definitely going to get a grilling. Not in a bad way. I don’t rant and rave.

I feel I’ve been invited to the meeting but left outside in the corridor.

Speculation without the information only breeds stress. I’m not angry or worried about any condition I may have, not the first time I’ve had life changing medical issues so I now know not to worry over things that haven’t happened.

Like a friend says I’m that laid back I have a wheel on the back of my head to stop it dragging on the floor.

I will have a better idea next week and I’ll post after I have spoken with those that know.

[Jm954 in reply to Scream-N-kick]

Please let us know, good luck at your appointment.

jackie

[Cyprusfan]

Good to hear you have extra energy that can only be a bonus.

Hayley

[Scream-N-kick]

Ok, I feel totally foolish now.

I miss heard when my doctor telephoned when I first heard I had leukaemia, turns out I don’t have CML its CLL, CBL an off spring of CLL I think. I’m on watch and wait. It’s why I hadn’t heard from haematologist until recently. I hope I can be forgiven for my previous panicked posts, I could have gone quiet and saved my embarrassment but I hold my hand up when I get things wrong and this is no exception. Just shows how the mind works I suppose when hearing the word leukaemia, you miss most of things said afterwards.

I will now be monitored over time, which isn’t a bad thing. I have 6 monthly blood checks for my hiv and they will take more samples for CLL at same time.

Of course I will have to take care of self diagnosing of any symptoms I may get, the haematologist gave me a run down of possible symptoms to look for and I’ve to contact them if I get any. But he didn’t come across as worried about it and I’m content in my mind about my future for now. One step at a time, I’m on tiny steps at the moment and hope to say that way for a long time.

I now feel doubly foolish just writing this but I’ll hit post anyway.