Diagnosed today

Hi Shocked123 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. It is such a shock to be diagnosed with a blood cancer but the more you understand the condition and talk with others the more the noise between your ears will calm down.

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….. 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’ve was diagnosed with CML in 2021 I like yourself was shocked , upset and concerned for my wife and kids. I spent a week in the macmillan unit getting chemo before I was allowed home and started on a tablet called Imatinib. Happily the outlook for CML patients is good. My day to day life varies some days I’m good , some days I have bone pain some I’m tired or sick. I’m 2 years on imatinib seems to be working well for me, there are a few tablets so if one doesn’t work for u another may be more suitable. The macmillan people and the consultant were very good at giving advice and help. I found it a bit of an emotional rollercoaster until I got my head round it. I hope this helps in some way. 

Hi Shocked 123, I like you was diagnosed with CML  back in February 2022 and just like you was perscribed that drug but only for a week then put me on Imatinib which I have been on ever since.  One tablet a day potentially for the rest of my life but the blood results are improving all the time and it looks like I may come off it after 5 years, but there's still a few years to go before that happens (if it does).

I have appointments (telephone) every three months at the moment but really I don't feel that I have this condition, in fact in some ways I feel like a fraud simply because I'm not suffering any effects of this disease (condition) but I'm sure if I stopped taking the Imatinib it will get worse. So, make sure you keep taking the tablets everyday.

It will get easier.   

I was diagnosed CML 2016 was on Gleevec then Sprycel have been TFR five months. Looks like have go back on treatment. My question is this. Has anyone been diagnosed with a second cancer and lived through it? I have a weird sore lump under y chin with a sore throat bits been there a while and I’m very scared it’s a secondary cancer. Can anyone offer me any assistance as I feel quite alone and desperate. 

Sorry to hear about your concern.  The best thing for you to do is to go back to your GP and explain the situation to them they will then arrange for further tests.

In answer to your question I haven't been diagnosed with a secondery cancer diagnosis.

Hi Starcat65 sorry to hear about your concerns, you need to get yourself along to your GP or talk with your hospital team and get them to check you out.

When it comes to blood cancers like CML (I have a rare CTCL) my understanding is that secondary cancers is not how blood cancers develop.

But it is known for some people to have a totally different type of cancer develop. Over my 24 years I have been checked out for a few ‘other’ cancers but all found to be none cancer issues.