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I think I am heading your way )-:

Thank you, David F, for getting me registered.

Dear All,

My GP has carried out an FBC and various other tests and tells me that I have a "serious blood disorder". White Blood Count is 58. My GP has suggested leukaemia and says that I should be wary of getting an infection before my meeting with the consultant. The hospital has repeated the blood tests and took blood samples for BLR-ABL and JAK-2 genetic tests. My report indicates exactly as follows: Positive Diff Morph Count, Immature Gran?, Left Shift?, Atypical Lympho?. Through many hours of Googling, I think that CML is the most likely outcome.

I see the consultant in three days (at the moment it feels like three weeks away!). Please, are there any special questions that I should ask of the consultant? I want to get as much out of the meeting as possible.

 

 

 

Hi Nimbus. I guess we all hope you are wrong and that you are not about to join the club no-one applied for. But if you are about to join us then there is a lot of good stuff on this site for you.

Start with the "About CML" tab at the top and go through the just diagnosed section. Then go to the templates section, and if possible print off the two templates for just diagnosed and monitoring your blood results. Take the templates to your appointment - tell us where that is - and get the answers.

58 is a low white cell count for someone to be diagnosed, but it happened to me like that - long story.

If CML is your diagnosis, it is good to remember that:

1  There are a lot of people on here who were diagnosed 10+ years ago and are fine.

2  Most of us will die with CML, not from CML, after (as far as anyone can tell) a normal lifespan.

3  Trials and developments are going on all the time. For me it is 11 years since diagnosis; I am currently 10 months into having halved my dose of medication, and will stop taking it in late September. Data says I have a 70% chance of "Treatment Free Remission" (TFR) , and if I am in the unlucky 30% all have responded when they started taking the meds again.

Think that's enough for now. Let us know what happens please.

 

Alastair

Thank you, Alastair, for your super-encouraging response.

For various reasons, I have a full catalogue of Full Blood Counts since 2011. The first appearance ever of a slightly high white count was in September  2017 (11), repeated November 2017 (10). Then in February, it increased to 17 and today it sits at 58. But there are measurements that are of greater concern.   

I will return here on Friday if I should have an update.

Regards, Nimbus

 

 

Hi Nimbus 

To add to Alastair’s advice I would take along a partner / friend for support and to take notes etc. I remember the first time I went with my husband, his oncologist handed us his results and briefly ran over them and we were both totally lost ( by all the terminology ) and the shock and emotion of it all. Since then we have got the results before we meet so we can study (and google before ) and arrive with questions ready so our time with him is more productive. 

I would make sure you are very clear that you know ( if it is leukemia) what type and what stage and get copies of all your test results. Ask him / her to highlight what are the most important results,  next steps,  and write it down because it’s amazing how fast you forget key information when you leave the office.

Prediagnosis is a very anxious time. I wish you all the best with your meeting with your doctor and let us know how you get on. If you do have CML, this is a very supportive community and we are all here to help you. 

best wishes Louise 

 

Thank you, Louise. I very much like your idea of requesting copies of the result data.

I have during the past couple of weeks got most of the emotions out of my system (mainly in informing family). If it is CML, I shall be calm and collected because it aligns with my expectation. I also had an LDH test where the measure is twice the upper normal figure and that looks more like CML than CLL.

I am attending with my wife, so she will hopefully pick-up anything that I miss. I have not had any bone marrow testing yet: I am hoping that that does not delay a first pass diagnosis. 

This was a great response from you Louise.

Best wishes, Nimbus

 

 

I have just returned from seeing the consultant. Self-diagnosis (through many hours of Googling) is confirmed as CML. Sokal score is 0.75. Thank goodness, I have a diagnosis. The wait was driving me mad.  Thank you all for the support.

Sorry to hear Nimbus2, but if you are going to have leukemia , CML is the one you want to have, as I am sure your doctor told you.

what medication will you be taking ? 

Best, Louise 

 

 

Hello again, Louise. Yes, my impression is that CML "is the one to have". The story certainly helps family members to gasp with relief. I start on Imatinib tomorrow morning. I was told that "everyone starts on Imatinib owning to funding now that it has gone generic". So now, I am on a steep learning curve. I will read through the forum here to get some idea of the lay of the land.

Kind regards, Nimbus (62 year old male)