Question 2: Your experience of diagnosis?

Hi, sandy

In october of 2013 i was experiencing some fatigue but my life was crazy at time - sleeping just a little, etc. etc. In november i felt my belly was hard and thought it was my muscle, even the gymn structor thought that and them i had some Diarrhea - probably because i'm lactose intolerant - and start to lose some weight. i'm not a heavy guy and lost 3 kg was a lot to me and i wasn't recover that weight after the diarrhea. My grandpa had pancreatic cancer and i decided to go to the emergency at the hospital - december 2013 - just to make sure. There, the gp told me that my spleen was very enlarged. I wasn't expecting something seriour 'till the doctor told me about my spleen. he thought that could be many things even leukemia and told me to go to another doctor. Two days later, with my family and girlfriend, the haematologist told me that i had cml. fortunately, i have a friend who has cml for 12 years and remembered that he was ok and had pills for treatment, not chemo, what calmed down. After two weeks, i found an old blood test (from november of 2012) and my wbc was 17K at the time and my old doctor told me it was nothing and send me home. I had some lucky because even if a lost a very early dx, my cml was in chronic phase and not that late, maybe just after the "middle" of chronic phase (3% myeloblasts and 8% basophil).

My girlfriend don't like to talk about cml, but she supports me and is very positive about my outlook.

Hi Sandy,
I went to my regular blood donation session in February 2013 but was turned down because of low HB. This had happened before so I did not worry at all (the nurse told me that it often happened to "ladies of a certain age"). The only symptons I had were some large bruises and the feeling of my heart pounding in my ears when lying down. Eventually I went to the GP who sent me for a blood test- I had it on a Friday morning and a few hours later the GP called me to say that they had arranged an appointment with an hematologist on Monday. I asked what was wrong but he only said that I had too many white blood cells and platelets and that I was anaemic. Again I did not think much of it and turned up on the Monday on my own after a busy weekend,including a 12 miles walk in the Yorkshire dales. The diagnosis of cml was a complete surprise but the doctor was quick to explain that it was treatable and that the outlook was good and this is what I remembered when I got home. I went back to the hospital the following day for a BM biopsy with my husband and lots more questions! I find talking about cml very easy and I think it helps keeping everything in perspective. my response is far from optimal but I think I'm getting there slowly. Worrying about the future does not help, so I just don't.

1. Where there any unusual symptoms that prompted you to see your GP?
Reading the other posts has reminded me of some symptoms I had prior to diagnosis that may have led me to the GP a little earlier. I too had noted a painful sternum over some years, but even so didn't pay it any mind. I suffered from visual disturbances -circular patterns of light in the corners of my visual field.... this could last for about 10 minutes and sometimes went away if I took some time to breath deeply. I put this down to 'silent migraine' as I had suffered from migraine when I was younger and I thought this was another manifestation of that.
I too was really tired and had trouble completing my circuit at the gym. In fact as I walked home from a session at the gym I noticed it was really hard for me to walk in a straight line, and once home I needed to lie down and sleep for at least an hour. After some weeks I noticed my jeans felt tight around my waist but I had not put on any weight and in fact was losing weight so that puzzled me- again I ignored this.

2. Did you expect something serious may be wrong with you?
I didn't but David, my partner, did notice that the left side of my abdomen was tighter or more swollen than the right- and asked me to go to the GP to get it checked out. I think he was secretly worried as I was looking so pale and had very little stamina. He also said my breathing at night was very quick and shallow. Night sweats were another symptom he worried about. So at his insistance the swelling on the left side of my abdomen took me to my GP.

3.Did your GP suspect you may have leukaemia?
With hindsight yes I think she knew as soon as she examined me. However, although she immediately arranged for me to attend the hospital for a blood test, she did not say exactly what she thought. She just told me that she wanted to rule a few things out- and I didn't press her. As it turned out, the hospital would not give me a blood test because they said my GP had filled the form out incorrectly! So another couple of weeks went by before I saw my GP again. She was furious with the hospital for being so pedantic and sending me away- again with hindsight I know why she was so angry because she had written 'splenomegaly' on the form which should have alerted them even though it meant nothing to me. The upshot was that she sent me to another local hospital (her second preference) who tested my blood. As soon as they had the results they called me in immediately. I still didn't suspect anything was seriously wrong.

4. Where you alone when you were told you had CML?
I went to the appointment alone as it was a weekday and David was at work. I said I would call him if needed. However, after more blood was taken I was ushered in to see the registrar who examined my further- measured my spleen, felt for swollen lymph nodes etc. He was obviously struggling to tell me in a way that would not shock me too much. In the end the consultant came in the room with several students. He gave it to me straight- which was pretty shocking as they suspected I was in accelerated phase. He said they could see around 5% blasts in my peripheral blood so wanted to give me a bmb there and then. He asked me to come back the next day with David to get the results of the bmb and discuss the options for treatment. 16 years on I can still feel the shock and disbelief I felt during that conversation. I thought I was going to die- and I dragged myself home to tell David and try to make sense of what was happening to me.

5.How did you and your partner/loved ones respond
David was already home when I got back from the hospital. I was not only in shock from being told that I probably had leukaemia but also from the effects/shock of the bone marrow biopsy. I was not expecting that kind of painful assault! The doctor who performed that procedure was pretty cavalier and didn't really warn me that it would be so painful. In the end she couldn't get anything from the aspirate and I assume (from the amount of pain) she did take a sample of bone for further testing.
David was devastated when I told him the little that I knew, but he did his best to hide this from me. I didn't want to tell our 12 year old daughter or my family - at least until we had a clearer picture of what the diagnosis was and what the options were. I imagined I would be in hospital over that christmas having high dose chemo! My/our future looked pretty bleak that day.
It was a Saturday but we were told to go to see the consultant in his lab- he showed me some slides of my blood (I really didn't want to see them) and said that he could confirm that it was CML probably in late chronic phase. He then (and I bless him for this) arranged an immediate referral to Professor John Goldman at Hammersmith, which he said was in his opinion the best place in the UK for me to be treated given my diagnosis. He told me my only hope of survival was a bone marrow transplant- this was in December 1999 and at the tail end of the pre-imatinib era.
Somehow, David got home without me collapsing under the weight of fear and grief. He has supported me and navigated me and our family through a very difficult decade, one which saw us travel to the US to take part in the first phase2 trial of imatinib, respond very well to that drug against all the odds, achieve a molecular response, lose my MR after 2 years and then survive a stem cell transplant. It has been difficult for all of us, especially our only child. Of my two siblings my younger brother was a good HLA match- again against the odds. I think everyone has found it difficult to cope with especially my parents, but David has managed to support all of us and I wonder sometimes how he has survived so well. We have a strong relationship and remain very close in spite of everything that CML has thrown at us. In spite of being diagnosed with CML, I feel very fortunate to have been in the right place at the right time - without that bit of luck, I may not have survived at all.

> I noticed my jeans felt tight around my waist but I had not put on any weight and in fact was losing weight so that puzzled me- again I ignored this.

I remember something similar - wondering why I was getting 'fatter' around my stomach, even though I was eating well, going to the gym plenty and losing weight. It was, of course, my spleen hiding down behind my bellybutton! I was amazed how quickly that swelling went down once I started treatment.

In the late summer of 2009 I developed a bruise on my third finger which wouldn't go away. It was painful and woke me up at night throbbing. Two friends who saw it asked me what I had done and when I said "Nothing" they urged me to go to my GP. I replied that I certainly wouldn't waste my GP's time over a bruise, but they persisted so 2 weeks later I made an appointment with the practice nurse. She had no idea what it could be so she called in a GP who asked for a full blood count to be done. I asked the nurse what they were testing for, but she just said "Everything". I didn't suspect anything although I had been feeling very tired - I had just retired and I thought it was just normal work tiredness.
Two days later in the early evening of Thursday I got a phone call from the GP who had asked for the blood count. She told me she thought I had CML - a mild form of leukaemia - and said I would be prescribed Imatinib. She said she was phoning as I would be receiving a letter from the hospital on Friday with an appointment at the Haematology Clinic and she didn't want me to spend the weekend worrying after getting the letter. Could I make the appointment for the following Tuesday? Of course I immediately went online to find out about CML but, at this stage I didn't find this site.
My husband and I duly turned up for the appointment when the consultant repeated what the GP had told me, asked me what I knew about CML and asked me to come back the next morning for a BMB.
The afternoon after the BMB I got a call from the same consultant whose opening words were "Congratulations a full set! You have CML." That made me laugh and just those words made me feel it was better to have CML than another form of leukaemia . The following day - now exactly one week since my initial visit to my GP - I returned to the hospital to collect my prescription of Imatinib.
On the Thursday, after the phone call from the GP, my reaction was to sit down rather suddenly. I certainly wasn't expecting this news. I was feeling very scared, but after a good cry the next day I gained control (thanks to Tai Chi which has certainly helped over the years). My perception of life changed for me and small things gained huge importance - the different birds who come to the bird feeder, the changing seasons, all the things in nature which we are surrounded by down here in Devon. I feel very content with life and happy still to be here for years to come..

Yes its amazing how we can interpret signs and symptoms as being not that important. I was pretty scared when it was explained to me just how dangerous a swollen spleen can be. I was told that if I had been doing anything other than going to the gym- I was too tired to push myself too hard- like contact sports etc. my spleen may well have ruptured and that may well have been my end!
Sandy

I was playing rugby weekly in the months leading up to it! It's a miracle I never got a hard knock on that side of me.

This was the day I decided to go,and see my GP.. I had been on holiday with Carol in June to Greece and not unusually for me I slept a lot around the pool. I was also quite thirsty. In July I noticed I was loosing weight but put it down to a hot summer and thatbwevweteveating salads more often.
My weight loss continued and in early August I felt like I had indigestion after eating something very small.like I need a burp or something.
I went to an exhibition and everyone I met said how good I looked I had a good suntan I'd lost weight to it was quite nice te hear that I,looked well.
My weight loss continued and I thought now is the time to make an appointment with my GP. I'd now lost 2 stone in 6 weeks.
It was a mondaynevening and my go,first thought that this amount of weight loss was unusual and he then felt my stomach area and said that he had not felt a spleen that large in 20 years. Tuesday morning I went to the hospital for a blood test. Wednesday morning at 9 am I had an ultra sound of my spleen . At 9.15 I was on my way to work when my GP rang me telling me that I had to go to,hospital,as my blood was so think that I was likely to have a stroke. I asked what caused this he said my white cells are tey high. Out of nowhere I said is this leukaemia. Don't nomwhere that came from and he was a bit shocked that I had guessed. He stammered out the words. Yes and now the rest is history. My story. 10+ years on and I writing this for you to view.

I was diagnosed about seven years ago and the only reason I went to the doctor was the fact that I was getting up a couple of times in the night to go to the toilet so I asked for a test to rule out diabetes. I had only just started a new job so put the fact I was tired down to that and not getting a full night's sleep - I certainly didn't think it was any more than that.
I had the blood test at my GPs surgery on the Wednesday, came home from work late on the Thursday to a number of missed calls from her and a message to call her on her mobile which I did. She told me I had to go to the hospital the following morning and that I should take someone with me, when pushed she said there was something wrong with my white cells. The fact that I was being sent to the haematology department gave me a clue what I might be looking at.
Thanks to her warning my partner came with me to the appointment so we were together when I was told they were 99% certain I had CML. They then did the fun biopsy that we all love so much and handed me an out of date booklet and told me not to read the last few pages as the information wasn't up to date. Needless to say that was the bit I went to first and it told me I had 5 years to live - cue panic and then searching on the internet (which also contained a lot of out of date info).
I think my partner was shocked and it took some time for us both to get our heads around everything but fortunately sites like this have been an enormous help and certainly meetings such as the HH ones and the meetings at Kings gave us chance in the early years to ask lots of questions from people who had lived the disease rather than books that were out of date.

Sorry, I'm a bit late to comment on this one but thought I'd add my experience as it isn't typical.

I was diagnosed In July 2002 after having bloods taken for my antenatal booking in appointment at nearly 18 weeks pregnant. I had a phone call from my obstetrician the following day asking to see me immediately. I was out at the time with my two year old son, meeting up with some friends who also had children of the same age. The phone call was all a bit of a shock and all sorts were going around in my head. Unfortunately, my husband was in another part of the country with work that day and couldn't get back so a friend came with me to the hospital. My poor obstetrician didn't know what to say really, and all he could tell me was that I had leukaemia and would most probably have to have a termination so that I could receive treatment. I then saw an oncologist who told me not to worry, took more bloods for further testing and then I had to wait for the weekend to get the results on Monday. To say it was the worst weekend of my life was an understatement!!

I think my husband was in total shock when he came home late that evening, my mum and sister flew down the motorway to be with me but it was the worst feeling ever to think I would have to terminate my pregnancy.

As it turned out, of course, although CML was confirmed on the Monday I was seen again by my obstetrician later that day and was told that he had been in touch with Hammersmith who told him there was no need to terminate and I could be treated through my pregnancy without any drugs.

Next day, I went to see Prof Apperley at Hammersmith and how lucky was I to be in such safe hands. I immediately started Leukapheresis which carried on throughout and I injected myself everyday with Heparin to help lower my risk of blood clots due to my high platelet count. I had a scare at 30 weeks pregnant when Jane noticed one of my eyes had drooped and had to undergo MRI scans to rule out brain tumours!! In the end it was a 3rd nerve palsy caused by a tiny blood clot at the back of my eye and it returned to normal after a couple of months (those pesky platelets causing havoc!). I continued to work part-time and have leukapheresis every two weeks and although I had antenatal checkups every two weeks as well I never had a problem with the actual pregnancy and my second son was born on 27 November 2002 weighing a healthy 7LBs. I was allowed to breastfeed for 6 weeks before starting Imatinib and then the rest is history as they say.

My son is called Nathan, which means 'Gift' and although I'm not religious at all, I think if it wasn't for him who knows when I would have been diagnosed and what the outcome would have been.

I was a 56 year old self employed graphic designer when out of the blue I developed a pain in my right foot. I made an appointment to see my GP the following morning and was told it was gout, but had a blood test taken to confirm this. Later that day I was phoned by GP saying it was gout, however as there was an anomaly with the blood result an appointment had been made with a Haematologist for the following Monday. Still blissfully unaware of the seriousness I arrived at the Hospital with my daughter for company, having insisted my wife attend another important meeting that had been arranged for that day.
The diagnosis of CML was complete shock, but the Haematologist at Worcester Royal was brilliant. He explained everything and answered all my questions. This was 15 years ago today, so the prognosis then was a bit bleak, only 5 years without a possible bone marrow transplant. My wife was very upset at not having being there, so the Consultant kindly arranged to see us again in two days time. In hind-sight all the signs were there, weight loss, night sweats, and fatigue for the previous few months.
The procedure was to take hydroxyurea to stabilise the white cells for about 6 months and then continue with interferon injections. In the mean time my brother would be tested for a bone marrow match.

The next few months were a crazy emotional ride plus many financial challenges. I searched the internet for all the information that I could discover on CML and made three vital finds:
1) I found the Jerry Mayfield site
2) I found this site
3) I found an article on the BBC web site on a new drug that was being tested for CML

I looked with anticipation to my appointments with the Haematologist. We would exchanged information and had a great close rapport. Although he was a bit skeptical about the claims of this new drug (having seen similar allegations in the past) he was very supportive. Together we found a trial taking place at Hartlands Hospital, which I was excepted for and started taking the tablets on October the 11th.
As we all know, Glivec as it now called, was such a success that it quickly became the first line treatment and has given my life back.

Richard

Thankfully a lot of the early stuff has been reframed in my mind and put away in the section marked "history - old news - get over it"

I was ill. VERY ill Frankly my diagnosis was messed up. I had a GP who was less than useless.

Prior to having leukaemia I'd been obscenely healthy. I'd had injuries but never illness. I'd never even had an antibiotic before!

So I went on a rare visit to meet the GP I'd had for 15 years! I couldn't breathe. I was losing weight. I had no energy. I just felt awful.

He treated symptoms. I had antibiotics for a chest infection. inhalers for asthma. Even steroids for asthma... That I never had. I got worse and worse!

My weight went from 11 stone to 9 stone. I was thinking I had lung cancer. I went to see the doctor with a view to telling him I needed a second opinion. There was another gp on duty and he sent me to a district hospital. They messed about for 4 days and also didn't do a good job. Ultimately though they said I'd got something wrong with my blood!!! Duhhh!!!

I was blue lighted by ambulance seriously ill and taken to Leeds Haematology unit. Incredibly they'd not told me anything other than "we're sending you to a bigger hospital". We stopped on route to collect my partner and eldest daughter.

Turned out I had the highest white cell count ever recorded. Likewise for platelets. My spleen was massively enlarged. I didn't even need a bone marrow aspiration for definitive diagnosis. I had to have an emergency procedure whereby they hooked me up to a machine to remove my blood, spin out the white cells and put it back. I was very seriously I'll and my partner was told to prepare for me not surviving the week.

There was a presumption I knew why I'd been sent to Leeds. I passed the signs saying it was haematology and signs about leukaemia research. But I'd not a clue! Then my partner started asking my consultant about leukaemia!?!!! Seemed she'd been told (badly) on the phone when they'd called to tell her not to visit me but they'd call and collect her and take her to Leeds with me in the ambulance.

We made a formal complaint to the District hospital. They didn't care and handled it poorly. My consultants also complained. We didn't pursue it because frankly we had too much to worry about to be bothered trying to transform the NHS! We were just relieved we'd landed at the right place.

It's all history. My treatment from that point has been excellent and its why I'm alive . It's been tough. I was diagnosed in the days when prognosis and treatment wasn't good. I've had a MUD bone marrow transplant. Had a host of complications. Now on glyvec. Indeed I went on it when it was in trial. As far as I'm concerned that makes it all a relative breeze. :)

There is a funny story though arising from my diagnosis. When I went to Leeds my consultant said something about me having unusual bruising and being surprised I'd not mentioned that. I said "where". He pointed to my thighs and said " you look like you've been kicked by a horse. That's not normal."

To which I replied "I have. I train horses and have a stud farm. I got kicked by a young colt"

We often recount that story when there's new doctors on the unit. :)

Hello Sandy, I have recently discovered this very interesting post from 2015. I thought I would add my experience. If for no other reason, I think it may be fairly cathartic, but hopefully someone else will find it useful/interesting. Perhaps you can re-start the thread, I found it to be fascinating and helpful.

1) Were there any unusual symptoms that prompted you see your GP? - Yes, I was feeling light-headed during weight sessions in the gym. I had also experienced some recent night sweats, but as I have had these on and off for many years, thought nothing of it.

2) Did you expect something serious may be wrong with you? - I didn't think it would be anything serious, possibly a virus of some sort. 

3) Did your GP suspect you may have leukaemia, if so did they intimate that to you before sending you for further testing? - The GP who saw me was sympathetic and listened to what I had to say. However I don't think he suspected CML, or anything like it. He was at a loss as to what to suggest so took a blood test. The day after the blood test he telephoned to tell me to tell me that the results had come back and that I had a very high Wb cell count and he thought I had Acute Myeloid Leukaemia!! Naturally this had me somewhat concerned, as a quick google seemed to indicate this wasn't going to end well...

However thereafter I was very well treated and quickly and accurately diagnosed by the haematologist at my local hospital in Banbury. Very soon after I was given a BMB (ouch!) which confirmed the diagnosis.

4)  Were you alone when you were told you had CML? - No, I was allowed to take my wife with me.

5) How did you and/or your partner/loved ones respond? - We were elated, as we assumed we were going to told I had only 5 years to live (after the incorrect AML information from the GP) so it felt like a reprieve from a death sentence.

Interestingly, the haematologist denies that my initial symptoms had anything to do with CML. After some exhausting cardiac testing we still don't know what caused them, if not the CML. As a background, I am a retired professional pilot, who has always been fairly fit, and have continued to be so in the few years following my retirement, until my recent (October 2020) diagnosis. On the plus side my Aviation Medical Examiner tells me after some months of stability I may well get my medical status re-validated.🤞🏻

Hi David.... thanks for unearthing this thread from way back in 2015! It is fascinating to re-read and I agree that it may be worth promoting it again, (maybe as a stand alone thread) so it will act as 'library' of individual experiences ... which I am sure will be helpful to newly diagnosed patients. Let's see what we can come up with.

Sandy