@Erica Totally agree. i run all medications and supplements past my consultant before taking them
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Hello @Ta5 - I’m very sorry to hear of your husband’s diagnosis and can understand entirely the myriad of emotions, questions, and worries and quest for reassurance.
Over 12 years ago I was diagnosed with Chronic myeloid leukaemia at the age of 36. It threw me into a complete spin and the world changed forever that day. But I adapted and learned how to move forward with my new set of circumstances both physically and psychologically. And today Chronic myeloid leukaemia is just one part of who I am. After two years on Imatinib, I moved to Nilotinib. And after about 8 years I gradually started to reduce my medication over a long period. And for the past two years I’ve been off medication entirely under the very watchful eye of my care team. My results do fluctuate from undetectable to very, very low - so far so good!
Each of our journeys are unique, but I hope that my story provides some light. Take care of each other and keep posting xx
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Hi Ta5,
Just to add another positive story for you. I was diagnosed with chronic myeloid leukaemia in May 2008 and put on imatinib straight away. It did not suit me initially and I had a break for three weeks after which I was put back on the drug. This time I was fine on it and by Dec 2008 I was in molecular remission and I still am today. I didn’t think I would see my children graduate but now I am a grandmother.
Initially I just told close family and friends and close work colleagues because that felt right for me but everyone feels differently. You must do whatever you feel comfortable with.
My consultant is now talking of taking me off imatinib and I am thinking about it but it is entirely my choice.
I feel very well and the only side effects I have experienced are burst blood vessels in my eye, which were very scary initially, but they disappear within a day or two and I do get a lot of cramp but I live a completely normal life. I feel extremely lucky to have been diagnosed just as imatinib came out. It has been a wonder drug for me.
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Hi, I was diagnosed with Chronic myeloid leukaemia in 2008.
Devastating at the time I was 44. I have been on three different meds over the years. A few issues especially in the early days but honestly life has been really quite normal for me.
I’m now on Dasatanib, apologies if I’ve spelt it wrong,
and for the first time in 16 years I have just been told I have no signs of the disease in me whatsoever.
What a result!! I’m 60 this Christmas and planning to live it up as much as possible.
Please don’t feel too down. If your husband has a positive attitude and like me tries not to even think about it too much, (he will do eventually) life can be really normal. I have always still worked, I’m a very physical person that can’t sit still. I love a drink, play golf, have a couple of motorbikes, life is good!! Wish you all the luck with your lovely family xx
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Hi @Darish really great to hear from you again with your update both medically and personally.
I am sure you will have helped so many others.
Congratulations on becoming a grandmother
Please do keep posting and really look after yourself
Hi @ryan1627 a great big welcome and thanks for posting your Chronic myeloid leukaemia treatments, the emotional effects and how you live your life.
Your life sounds pretty good to me!!
You really celebrate your 60th birthday at Christmas and don’t let it get lost in Christmas…
My 70th birthday, which was early Jan just before Covid lockdown was my best birthday ever, with my Colin the Caterpillar cake.
Please do let us know how your birthday goes.
Thought I’d just add a post have not been on the site for a couple of years as having a rough time health wise not just Chronic myeloid leukaemia which I acquired 9 years ago. One thing I have learned is that everyone’s Chronic myeloid leukaemia journey is different and you can spare yourself a lot of angst if you avoid comparisons. I was diagnosed late when the Chronic myeloid leukaemia had really taken hold as the symptoms were confused with menopause and had to have chemo before I was allowed on to a TKI starting with Imatinib. It took me a long time to reach major molecular remission which was depressing as I stupidly kept reading posts on another site of people reaching MMR much quicker. It made no difference that it took me so much longer as once in MMR I stayed there for 8 years without any major problems until the imatinib stopped working and I had to change to another TKI.
This TKI Dasatinib seemed to be working well but unfortunately caused massively high blood pressure so I had to come off it and for a while took no TKI at all so the ABR grew exponentially and it was quite worrying as some other TKIs were contra indicated for me but help and advice from GP and Haematologist finally arrived at a balance between Dasatinib and blood pressure tablets and me contributing by losing a stone in weight and within 3 months my results had reduced so much that they were unrecordable. So what I am trying to say is even if your road is more bumpy than others there is so much help and advice out there and so many more of us living and working with Chronic myeloid leukaemia that you will gain confidence as your journey progresses.
Final comment on side effects I was lucky to have a very forthright Haematologist which suited me and I remember him saying some Drs will try to underplay the side effects but you have to remember in medicine there are no free lunches take charge of your own side effects decide what is truly unbearable and what you can find a way to deal with e.g the 400mg tablet of Imatinib had a prompt effect on me I don’t think I ever took one that I did not vomit straight back yet I was able to to take 200mg after breakfast and 200mg after supper with few problems. Good luck to all those who have just been diagnosed you will get there life will be different but still enjoyable.
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Oh @Ismo you really have had a lot going on since your last post.
Yes, I avoid comparisons too as we are all such unique very special people,
I really like your forthright haematologist.
Look after yourself and please do keep posting
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@Ta5 hey, I came across your post when i was searching for more information on Chronic myeloid leukaemia. I have just been diagnosed and also i am 36.
I thought you might be able to let me know how your husband has been getting on with the treatment?
I have read through all the comments and completely appreciate not to focus on comparisons, but I am in a place where having an expectation on what might be to come would help with whats to come. Especially innthe early stages.
I hope all is well with you, your husband and your family.
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Welcome to the forum @Howey
I am sorry to hear of your diagnosis but glad you have found us.
I hope you are able to connect and find the support you are looking for if not just reach out and we can help you.
In the meantime I’ve posted the direct link to the pages on the web site above.
Do keep in touch
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Thanks very much @Jules, I have done a fair bit of research already in a short space, already. I am really positive and confident that with the support and treatment it can absolutely be managed, if not beat.
I still have to understand what level it is at, which will be Monday. I have 2 young girls (12 & 7) so my wife and I are thinking on how we approach this woth them.
Right now, I’m just trying to get a better understanding of how the early stages look and potential impact for my girls and my wife.
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Hi @Howey a great big welcome to our forum. @Jules has given you a great welcome.
I would say write all your fears, questions and practicalities ready for Monday.
As for responses in a language that you can understand.
As for telling your girls, very personally I think it depends on your relationship and the way they take information in, which might be very differently.
I think it is telling them in simple terms, telling them that they can ask questions at any time, making them feel included and safe and supported. Updating them as and when.
Perhaps your wife and children will have a lot of similar thoughts and emotions to you as well.
I reckon communication is the key.
If you feel it appropriate you might consider telling your girls schools so they can support them as well.
Just take it steady and perhaps a day at a time.
Really look after yourselves and keep doing fun things together.
Please do keep posting how you are doing.
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Hey @Howey. Really really sorry that you’ve just been diagnosed with Chronic myeloid leukaemia. I can imagine that so much must be going through your mind. Trust me when I say, you will have better days coming. Just give it time. As my husband’s haematologist says, if given a choice on which cancer to have, Chronic myeloid leukaemia would be up there.
It’s been just over 6 months for my husband since diagnosis, and I’d say the diagnosis was the worst part. It was a blur, a huge rollercoaster of emotions.
Six months on now, we are living as we did pre-diagnosis. It’s no longer a daily topic of discussion. It’s not forgotten of course, but neither is it a grey cloud over us.
Treatment wise, my husband is on imatinib, which was started at diagnosis. He had really bad muscle pain for 2-3 months and now it’s subsided almost completely.
He’s been having the 3 monthly BCR ABL blood test, first one, he didn’t meet the milestone, but he did once it was repeated a month later. His white blood cells were very high at diagnosis that the consultant suspected his response would take a little longer.
If you’ve any questions, do get in touch. Best wishes.
I’m sure there will be good days and bad days. Just take each day as it comes. That’s how we’re living with it.
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Thanks for responding @Ta5.
That is great news the treatment has gone well for your husband. I can imagine it has been stressful for you all at the start, onwards and upwards by the sounds of it.
I will find out more on Monday, but my doctor thinks that it is Chronic myeloid leukaemia, they are just waiting on bone marrow biopsy results. The Philadelphia chromosome is not in the usual format, which is something else.
Its really good to hear that you all are doing well and life is almost back to normal for you all. As I said, I am positive, I have been since they told me. Just taking things a step at a time. I have shared what you said with my wife and i think it really helped her. This is pretty much what I was after. So thank you.
All the best to you, your husband and kids. I hope his treatment continues to go well.
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Dear @Howey,
Welcome to the forum - it is great that you have found us.
I was diagnosed with Chronic myeloid leukaemia 13 years ago at the age of 36, so can relate with what you are going through. I started off on imatinib and did experience side effects including bone pain for a few weeks and also fatigue. After 18 months or so, I was then moved on to Nilotinib as my results weren’t getting to where they needed to be. I’m pleased to share that I’ve now been off medication for three years after a slow reduction (I know this isn’t appropriate for everyone). I’m monitored closely and it appears to be staying under control.
Each of our journeys are different as you say, but I know that I found it really helpful to learn about other people’s experiences. Dealing with a diagnosis and not quite knowing what to expect can be daunting. For me it has become part of who I am and not something that I dwell on daily.
Do let us know how you get on and please ask any and all the questions that you have.
Take care,
Maggie
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Hi @MaggieLT, thank you for your message.
My doctor is confident that it is the chronic level. The fact the chromosome is in a rare format doesn’t impact the diagnosis, it just means when they review it, they need to account for it when analysing blood work.
I have also been started on imatinib. It has been three days now and i haven’t experienced any major side effects so far which is positive. I’m still focused on continuing as normal, going to the gym and have tried a bit of running again since I have been told not to play football. Although i will say i’m not able to exercise at the same level, i am tired, especially by the end of the day.
Really early on, but I am just dealing with it a day at a time. My wife seems to be in a better place even just after a few days, which I’m really happy about. I was worried about how it was effecting her.
First set of bloods following the start of treatment is Monday.
Thank you for everyones links, responses, and personal experiences. I never thought i would message in to a forum, but I have appreciated the messages back.
All the best to everyone and hope that everyone is well.
All the best.
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Hi @Howey please do let us know how you get on after next week
Yes, a day at a time sounds good to me.
Look after and be very kind to yourselves
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