Chronic Myeloid Leukaemia

have only recently been diagnosed with CML and it came as one heck of a shock. I was going into hospital for an investigation and needed to provide up to date blood tests. I provided the necessary samples at the hospital on the Monday and on Tuesday all hell broke loose with repeat blood tests, put on the priority list and 10 days later being seen at the local Oncology department. The tests had shown that my White Blood cell count was far too high and that further investigations were required. for the first 2 weeks after the diagnosis was confirmed I was in shock. My head was all over the place. I couldn't even remember what had been said to me by a doctor and nurse on one of my visits. Now I make sure that I have someone with me who can help me to remember what I'm supposed to be doing. The medication doesn't seem to be affecting me too much, but it is very early days so fingers crossed it stays like that. It would help me if other sufferers of CML have any reassuring stories they can tell me. I'm getting to the acceptance stage but there is so much more I feel I need to know but don't know what questions to ask. I'm trying to be positive but when you receive such a huge shock it's not that easy. At least I think the crying stage has finished lol. Take care my fellow sufferers. Trisha

  • Hi  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

    I don’t have CML but I was diagnosed back in 1999 with a rare, incurable but treatable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I know this journey rather well.

    Being diagnosed with a blood cancer can be such a shock and it dies take time to get your head in order to be able to see the light in the dark forest…… but you will get there. Well done making sure you have someone with you at appointments as information comes thick and fast - remember that you can ask if you can record your appointments on your phone so you can listen back,

    Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

    For good information do check out Leukaemia Care UK who produce very good information and various support platforms including their Buddy Scheme where you can be connected up with someone who has walked the walk.

    Always around to help more or just to chat

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi Trisha,

    I am at the early stages of treatment (nearly 4 months) 

    Medicine is starting to really have a positive affect, old energy levels are returning and side effects are minimal, white blood cell count is back within range. 

    I feel lucky that an illness I didn't know I had has been accidentally diagnosed and that I have this version of Leukemia that is the most treatable and manageable. Still hasn't stopped me going through the grief process, still working on the anger of why me. 

    Learning to listen to my body and not just pushing through the time is important , but necessary to improve stamina.

    Dave

  • Thank you so much Dave. Your comment about old energy levels beginning to return to normal after just 4 months has really given me hope. I've gone from being a mad woman who dashes here, there and everywhere to someone who just wants to sleep all the time. Frightening and frustrating. Take care. 

  • Hi Trisha48,  like you I was diagnosed with CML in October after a series of blood tests originally arranged due to constant headaches. It was a bit of a shock as and hard to get me head around. Words from the Haematologist disappeared into the ether and I struggled to make sense of it. Since then I have had issues with my medication whereby it was effecting my breathing and had to stop and take a course of steroids then restart on a lower dose.

    I've now done 2 full cycles on the lower dose and it appears my bloods have stabilised and may stay on this lower dose but I am waiting for confirmation. 

    I have good days and bad days and feel much more emotional about things than I was previously.. I also have issues with nausea and taking Metaclopramide which has been increased due feeling sick again after several weeks of feeling absolutely fine. My body reacts differently now and it is important to listen to it. 

    I'm extremely lucky as my wife has been a tower of strength to me and being a nurse has also helped in understanding the medical jargon. 

    All I can advise is that life may seem to be the same after the shock but only you will know it's different and we all need someone to off load to on our time of need.

  • Hi Keith,  Sorry for the late response. Like you I was having a routine blood test for a hospital procedure and the Leukaemia was discovered. I also went into shock and couldn't remember anything which either the doctors or nurses said to me. I had my son with me when I went for the second consultation and he took notes for me but it has been suggested since that I record the meetings using my mobile phone. I'm going to do that when I return at the end of June.

    I suppose I have been quite lucky with the medication. It did make me really sick at first, even though I was taking the anti sickness tablets, but things seem to have settled down now. I am still on my first cycle as my diagnosis was only on the 31st March but my bloods have responded well and my white blood cell count is now normal.  I am hoping that when I return they will lower the dose of the Imatinib from 400mg to 200mg or even prescribe something else. I know I will have to take meds for the rest of my life to control the Leukaemia, just hope I can eventually stop taking the anti sickness tablets.

    Like you each day varies and I still get tired very quickly which is infuriating and frustrating as I have always been an active person buzzing around like a busy bee. I also get breathless quickly thanks to the Long Covid so didn't now for certain if the Imatinib was affecting my breathing or not to be honest.

    I live alone so don't have continual support, although my son and daughter help me as much as they can. They both work full time, live 40 minutes drive from me in opposite directions and my daughter has two children so I hate having to ask them to help me, but I'm getting better at reaching out to them. They were both as shocked as me with the diagnosis and want to help and support as much as they can bless them

    As you say only I will know that my life is now completely different. Family and friends are so pleased that my bloods are much better and think I have made a full recovery, but as you know that is not the case. I sometimes find it hard to accept their congratulations on getting better without getting angry as I'm not better, the disease is now controlled but still there and affects me. I had Covid in October 2020 and now suffer with Long Covid, add the symptoms of that to Leukaemia and you have double the problems with breathing, fatigue etc. I try to be strong and positive but life has been really harsh to me for the past 2 years.

    I am glad that my son encouraged me to join this website. It can be so therapeutic talking to others which have the same illness and understand the way I feel and the side effects to the meds and/or the illness. Thanks for writing to me.  Take care. Trisha48