Chronic Myeloid Leukaemia

Hi Trisha48 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

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

Hello Trish48. i have just joined the group. not sure if you still active but thought i would reply.  i was diagnosed with Cml about 13 yrs ago.  at that time there was a trial called spirit 2 where there was either imatinib or dasatanib.  after about 6 months i was near normal in terms of day to day activities.  after diagnosis i too had fatigue and physical activities were not quite the same but must admit found walking very therapeutic. would recommend that to anyone.  hopefully you may be at that stage now i. your response to the drug therapy. .  even though 13 yrs ago i do remember the feeling of rabbit with headlights in eyes at the start and the disbelief when i was told that i had cml. . i must have been lucky in not feeling nauseous. it’s great that there is a range in these types of drugs. i met a few others who have had long term responses so outlook is good for many.  anyway hope you are progressing well. 

Hi andynr, sorry for the long delay in replying but I have to prioritise things on a daily basis as I still get really bad fatigue. I'm so glad that you did write as I was getting a bit concerned about my life expectancy even though my haematologist gave me a positive outcome report when I first saw him after diagnosis. I have recently joined another site, Team Leukeamia UK, which gave a poor long term prognosis and it really upset me so I was going to ask on this site if anyone had lived beyond the 5 year mark they were giving. You have done that and made me feel much better so many thanks. I do like walking, but much prefer to have someone with me to keep me company. I find it rather lonely walking on my own. I need to look for a walking club nearby who cater for slow coaches like me lol. I was completely shattered when I was told that I had CML and couldn't retain anything the specialist staff told me. I eventually asked them to repeat it all 3 months later when the shock wasn't quite so strong and I was able to absorb what they were saying to me. One thing I need advice on now is how to cope with the pains I experience in my lower leg bones. They are really bad when I have them and wondered if you had any suggestions regarding how to ease the pain. It is usually accompanied with muscle cramps too. I did mention this to my haematologist who thinks that the pain may be an after affect of Imatinib - I'm on 400mg dose daily. Have you experienced anything like this and if so what have you done to give you almost immediate relief. Take care and thanks again for writing.  

Trisha48

Hi Trisha, I just noticed your question

Trisha48 said:

I was going to ask on this site if anyone had lived beyond the 5 year mark they were giving

We have a man in our Maggie’s Centre Heamatology Support Group who is over 20 years into his journey, no longer on treatment and doing great  

Hi Mike, Many thanks for letting me know that important piece of information. I feel more confident about my future now.

Hi Trisha48,

may be a local ramblers club?  i was lucky with side effects and did not experience leg pains or cramps. wish i could advise but perhaps keep exercise short and have targets and if you can find a walking friend it may help and take your mind off the pain. everyone is different on this journey which makes it difficult to generalise. i set myself small goals at the start in walking with a slice of cake as a treat after. i took each day one day at a time and did less when i felt not so good. i tried not to dwell on the longer term as i could not see where my path would lead me _too many variables. the good thing with cml is there a range of drugs that have been developed on a similar basis to imatinib so it’s good that imatinib is not the one and only option. If the side effects are too much perhaps ask your consultant.  after diagnosis i similarly became a rabbit in headlights not able to process anything. almost in denial after a simple blood test then being told you have cml. my consultant was great i have to say.