CML

Hi KezRL-I was diagnosed with CML in January 2024 and it was a huge shock as I thought my symptoms were menopause related (they were and they weren't lol). I vividly remember the fear and uncertainty, and telling my family, our kids and our friends was unbelievably painful and scary. I've had my ups and downs, am still in the midst of sorting out a medication that isn't too much or too little (currently on 60mg of Dastinib and that will steadily increase as my numbers drop...again!)...it's been a roller coaster of failing meds, getting very sick from a blood infection, epic hives that could have shut down my body, hot flashes, night sweets, zero sleep, bone pain, nauseau, fatigue...you know, all the awesome stuff ;). I've chosen to deal with this chronic diagnosis with humour and learning to show myself some grace. I'm a busy momma to three kiddos and we are go, go, go...I just don't go as fast or do as much anymore. Having a support system of family and friends has really helped, but I'm missing a person or people who get this because they are facing the same challenges. That being said, I'm here to listen and can offer understanding through this similar experience. Take good care. :) Brooke

Hi thank you for reaching out, wow it seems you have had a hard time , hopefully things are looking up for you. it's only been a few weeks since I was diagnosed but feels along time ago so really I'm only just starting this journey, I'm on Imatinib 400mg at moment the side effects not been to bad for me apart from the puffy eyes, sore throat, and my body aches and i feel I haven't slept for ages, I'm 39 but my body feels a lot older lol. At the moment they are working on getting my WBC down as when I first got diagnosed they where 140,000 and my last bloods they were at 54,000 so hopefully by my next appointment they go down even more I just feel alone at the moment my husband and children have been amazing and supportive but I feel they don't understand or know how to react or What to say, I know I should be be great full it's in the chronic phase but I still feel worried and my  emotions are all over the place, hopefully as time goes on and I understand more about it I'll start to feel better, thank you for taking the time to respond to my message take care Kerry 

Hi Kerry KezLR  and welcome to this corner of the Community although I am always sorry to see you join the community and to hear that this is not your first cancer.

I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic Myeloid Leukaemia (CML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of T-Cell Non Hodgkins Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare aggressive T-Cell - Non Hodgkins Lymphoma was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

I am glad to see BFin has picked up on your post.

Navigating this journey can be challenging so do remember that the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

For good information do check out Leukaemia Care UK as they are the main UK Leukaemia charity who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a person with CML in it so worth checking.

Always around to help more or just to chat

Hi Kerry,

Nice to meet you, I'm Brooke :)  I totally understand all the ways you are feeling as I had the exact same reactions when I was offically given my diagnosis. It was a staggering shock that I had never experienced before and I had no other experience to compare it to, because there isn't one. I have a background in the heatlh care system and am very impatient, so when I got my numbers back, I knew it was bad...my GP would not tell me my diagnosis, she said I'd have to speak to a hematologist in a few weeks about the results. Screw that! I went straight home, plunked in the numbers and learned more about white blood cells than anyone needs or wants to know! I had diagnosed myself before hearing it from the hematologist. So for those two weeks, I was fairly certain I knew that I had some type of blood cancer, CML tracked, but I'm not a doctor, I'm a momma to three kiddos. I didn't tell a soul, not even my husband, and I couldn't have felt more alone, and scared, and worried, and all the things. The only day that I've cried was the day that I told our kids. The worry and fear on their faces was devasting and I will never forgive myself for the trauma that each of them experienced when I said, "I have cancer", it was a terrible day. And I scared my husband too, less worried about him because he's an adult, but still, he was devasted as well. I wouldn't wish this journey on anyone, yet here we are. I know that every body is different so what we experience will vary, but the emotions are the same...all fear based because we don't know what will happen. I've stopped thinking that way and have chosen to deal with cancer by using humour...not for everyone but it works for me...seems to take some of the scary out of the C word and if people laugh, they aren't crying...but cry away if that makes you feel better because it is a good release. And despite using humour, I have had some very very dark days, days I just could not get out of bed. I've allowed myself to feel how I feel, my kids and hubs too. We've been open and transparent, and have answered their questions honestly...helps that the prognosis is typically good for CML. And it will take time for you to accomodate the news you've just received, it's a lot. So however you are feeling is okay, it's normal and it is uncomfortable. It's also been a glimps into how family and friends have shown up to show love and support for all of us, I hope you have supports around you too. And I'm here too and you can reach out anytime. Take good care :)Brooke