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Worried! Maybe doing too much reading

Hi
I'm here again looking for some more advice/information. I am diagnosed now 3 months and still doing a lot of reading about cml. Today I've read about sokal scores and high risk patients and I don't know if I should be worried. I seem to fit into that category. My spleen was huge on diagnosis right down under my umbilicus my wcc was 193 and platelets 450 hb was 98. I was 69% ph+ on diagnosis. Want I want to know is does the % of ph+ % relate to how you will respond to the drug. My consultant said yesterday that not to be too focused on the result of my 1st PCR as I had a lot of disease on board to begin with. I suppose this is where my worry has came from. I'm on imatanib 400mg and diagnosed in 1st chronic stage. I suppose I'm just scared this doesn't work for me! I did achieve chr fairly quickly at just over 4 weeks. I have been reading everyones responses and they have been encouraging I just may have stumbled upon an article that didn't read well that made me panic. I hadn't even heard of the sokal score and hadn't seen any postings about it.
Thanks
Lynne

Hi Lynne

As a first thing, I wouldn't spend too much time worrying about Sokal scores, which are really remnants from the pre-imatinib era.  It was used mainly to identify patients in those days who might progress more quickly and/or do more or less well on a transplant (and interferon I believe tho not sure about that).  As I understand it, their relevance to response on TKIs is at best not understood and most of what I have read has suggested there seems to be no correlation.  So I wouldn't be too bothered about Sokal scores.

I would concentrate on the fact that you got chr well within the desired time frame, which is 3 months.  You did it in one.  Also, 69% ph+ is neither high or low.  It is a slightly odd number  because typically ph+ percentage would be from cytogenics based on a fraction of 20 cells and if it's a PCR result that's a slightly different thing - but this doesn't matter for now.  The point really is that most people are 100% at diagnosis (however you look at it) although some may be rather less. I was 80% - though my WBC was barely 15, yet platelets 1100 and counting... I think the bottom line is, you can't tell very much at this stage other than you've had a good early response I think.  It's all very worrying in the early months and the fear is perfectly natural. Remember that most people do do well on one or other of the TKIs, and you have started well by the sounds of things. I assume your spleen is now back to its normal self??

Richard

I think the 69% is my PCR now that you say that. I do often get confused over numbers. Thank you for taking the time to reassure me. My spleen was back to it's own self a couple of days after 4 weeks on treatment. I'm just nervous about things and can't seem to stop worrying. Think I've read every research article possible! I'm back to work on Monday so will have less time to dwell on things. I'm back to the consultant in 4 weeks and will get my 1st PCR result which I'm more than nervous about!!

For me anxiety is the primary symptom of my CML- it fluctuates in the gaps between hospital visits (some days I even almost forget that I have it!) But the days leading up to bone marrow or blood test are worse, beaten only by waiting to get results.

I tell myself that there is nothingI can do about it and that I have to accept that CML is about waiting &, more often than not, playing the long game. Breathing exercises & tau chi have helped me enormously, but at the end of the day it's hard & you have to give yourself time to deal with these feelings.

CML puts you in a lonely place, but there are a lot of people out there in the same boat- this forum is full of them & we're all lovely!!

Best-

AdjL

It sounds very familiar! I've got DX 2.5 years ago now, I can relate to those concerns about where you stand in relation to prognosis today.  Well my sister had her thinking hat on and she assured me: "there's plenty of time" - meaning that I could think beyond weeks, months etc and talk about years (probably!) of restored health and survival given the general state of today's medicine. Thinking too far forward is simply anxiety. I read what I could too at first but it was probably after about 9 or 10 months when I started to begin to feel 'normal' - and could see myself (probably) moving into the 'longer term' outlook about survival. I had the information but I did not not necessarily apply it to myself.

 

It didn't help my nerves much that I was given quite an out-of-date Leukemia Society booklet (from 2003) when the 2008 version was available and made for much happier reading. The first eye-catching tidbit I came across in that period was reference to ''25 years'' as the median estimated survivial for repsonding patients under the TKI regime, That wasn't an outcome - TKIs having only been around 10 years or so - but a forecast of sorts. But anyway ''25 years'' that stuck with me even though I was feeling fragile still.

 

Now the buzz-phrase in CML is "normal life-expectancy" - so another watershed has been passed in the short time I have been on this treatment.

 

Thinking about the progess you want to make for yourself doesn't help you make any of course - only time is required to see the trend improvements taking place. I would expect therefore that in a few months your vigilence will relent and you may appreciate a new intensity about life which I suspect is the common experience around here. But that will probably just be a passing feeling too! Just wait till it all seems so routine!

 

Regards 

Thank you everyone for your kind words. I have always been an impatient person and like things to be sorted out promptly so there lies my problem having cml is a waiting game and to watch for responses and trends. I will be attending the seminar day in Cardiff in November and I hope this helps me move forward by speaking to other people with cml.