Newly diagnosed

Hi   and welcome to this corner of the Community although I am always sorry to read about your diagnosis, 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 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well.

CML is on the rare side, but let’s look for any group members to pick up on your post and get back to you. 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.

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.

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

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 most are online at the moment….. 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, I am a 65 year old male and diagnosed with CML about 9 months ago. I can sympathize with you, I too, have incredibly painful bones, very regularly. In the literature given to me, the pain  can be a symptom of the leukemia, also confirmed by a doctor. I have most of the symptoms you can possibly get with CML, unfortunately. What I have found, is that people have probably assumed that there symptom were a aside affect of the drug and reported it to the company. I know this because I had some of the symptoms on the list, before I started the medication and they appeared on the side effects list with the Imatinib. I'm not sure whether I had bone pain before the medication, thou. I too would like to know what can be done to alleviate the pain. I have mentioned the bone pain on many occasions to the haematology staff, this was before I started to get the really awful pains and they have never replied with a solution. I will however mention it again next month and tell them I'm getting severe pain. If they come up with a solution, I will try to let you know.

Hello Extraterrestrial, I had ankle and hip pain for years which I attributed to injuries, my consultant has explained that it was most likely cml.

I have been started on naproxen 500mg twice a day which helps on better days however I'm also taking 20mg of CBD and found wheat bags also help but bad days nothing helps.

I hope you get some relief soon.

Dizzy

Thank you for the information, I really appreciate it. I will ask for medication on my next appointment with the hospital and also try the wheat bag. Unfortunately, whenever I've had the severe pain, it's been when i'm away from home or driving. Let's hope the medication works better for me. Thanks again and good luck.