Newly Diagnosed with CML

Hi Di1543  and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic Myeloid Leukaemia (CML) but I was diagnosed way back in 1999 at 43 and I have lived with and been treated for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable)…… also Asbestosis and Prostate Cancer……. so I know that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.

Let’s look for sone group members to pick up on your post. You can also click on the main ‘CML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

As always the Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits and financial guidance or just connect with a listening ear. 

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks provide amazing support and the Heamatology Support Group I attend at our Maggie’s have a few folks with CML.

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

Do get back to me if you want to talk more.

Thanks for your response Mike

I am sorry to hear you suffer too and wish I could change it with a magic wand for you. I am just awaiting the NHS to get on with my treatnent as am keen to try and beat this.

Di

Hi Di Di1543  yes I had a bumpy few years….. but I am 10 years 8 months out from my last treatment, I turned 70 last Nov and I am living as good a life that any other fit and healthy 70 year old can live.

Lets look for progress to be made soon ((hugs))

I am ddd, Diagnosed since June 29th 2026 with Chronic Myeloid Leukaemia,

I have Pelvis and Lower Back pain which is controlled by Acetaminophen 500 mg 2 times a day and Tramadol 25 mg twice a day. I have been given great hope and prognostic outcome by my doctor. 

I am tested with BCE ABL1. I am also getting Laboratory check up every 2 weeks. compete blood count every 2 weeks, 

also getting quantification test and I am reading and following article at BCR-ABL1 GENE QUANTITATIVE TEST PCR 21-265.pdf

Does any one has pelvic pain or back pain in our group? How do they feel about their prognosis and treatment? Any thing can I do to be pain free?

Hi ddd and a warm welcome to the group. It sounds like you are having a challenging time.

Pain control can be a mystery at times….. although I have a different blood cancer I had significant pain issues leading up to the start of my treatment in late 2013 and the only tool that made a difference was Tramadol.

Let’s look for group members to pick up on your post although the best way to collect support is by putting up your very own post in the group.

I am making a wild assumption but I am thinking you may not be in the UK?