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Hi there

everyone.

I have been dipping in and out of this forum since my daughter (23) was diagnosed with CML with pc positive in Feb this year.

To say it has been a difficult time is an understatement, that said - I was really pleased to find this forum. 

My daughter (who is ok with me writing on here) and myself are finding the whole experience a minefield, conflicting advice on medications etc and consultants who say one thing at one appt then another at the next which is not helpful and very upsetting.

To date, she has been on the imanitib,since Feb and at last visit, after noticing a graph, we were told there was no deep molecular response? we are due to go back this Thurs. Is there any books, literature or publishings that we are able to access to ensure we are asking the right questions?

She wants to know when she will start to feel better as she still feels the same - she can't exercise as her body hurts, she is still hot/cold and coming out in bruises.

Hopefully things will improve for her and we are intending to come up to the conference in September to listen and to find out more about CML.

Thanks

Terri

Hi Terri,

just a few questions before I can offer you and your daughter advice.

How old is she?

Where is she being treated?

When you say 'after noticing a graph' do you mean that her doctor showed you a graph of her test results? 

If yes, then were the results from cytogenetic tests or the more specialised PCR (molecular) test?

What does her doctor suggest that they can do to make sure she has a 'deep molecular response' to therapy? Has he/she offered to treat her with a different TKI?

What side effects is she experiencing from her current treatment.

In the meantime I would suggest you download our q-PCR booklet and study it - it does give a background to cml and how/why it happens as well as how TKI therapy works. It also outlines what you should expect to see from the test results at certain timelines. If you find it helpful you can print it off as that would be easier for you to refer to it. If this is not possible or if you prefer, we can send you a hard copy of the booklet - send your name and address to us by email to:

cmlsupportgroup@gmail.com

Sandy

 

 

Hi Sandy

Thankyou for replying

Receiving treatment in Gloucestershire and is 23.

The graph we saw had a bottom line and a top line the top line was near the top of  the graph and I asked what it showed, the reply was that  how well the iminitib was working and of course I questioned the huge gap between the base line and the top line, we were told that is showed there was not a deep molecular response and the line was flat all the way across the top. I have no idea what the graph was based on. The consultant did say that they may change the therapy next time,(we are due to go this thurs). She has blood tests in which this info and all other info we are given is based on.

Should we ask for a bone marrow biopsy as they were going to do this at the beginning. Her symptoms - tiredness, hot/cold sweats still, bone pain, tingling, pins and needles, nausea, being sick, leg cramps, feeling hot, feeling cold, she does take her medication.

I believe she hasn't had any cytogenetic testing?and I will ask about the graph testing 

i will download the leaflet and study it, 

We were thinking of asking to go to another area for treatment but we feel awkward doing or asking for this but we just want her to receive the correct care based on the findings

 

Hi Terri,

Sandy's advice to read through the guide is very good advice and it will better arm you with the right questions to ask and, more importantly, understand the answers. I think the most important thing is for you to understand what the numbers mean in PCR testing and where your daughter's numbers are. Once you have these numbers you can more easily understand her progress and members on here will be better able to share their thoughts and own relevant experiences.

Should you be thinking about a change of centre, I can't speak highly enough of Dr Lisa Lowry at the Bristol Hematology Oncolcogy Centre. Very patient, explains things well and makes sure you understand.

Best wishes

Chris

 

Thank you Chris

I will keep reading the leaflet, and we are asking for all her blood test results tomorrow so we can do a graph of such 

It is encouraging for me to read the journeys of people on here - I do relay them to my daughter who is having a hard time accepting this diagnosis, I think it would be better if she understood it but she says they don't listen.I have started to go with her to the appts at her request but we are at a grass roots level and its as if we are excepted to know  - we don't! 

Im sure there will be a tki treatment out there that she will do so well on and feel so much better

Terri