Has anyone had a CML diagnosis with very high platelets ?

Hi again Eggtemperapainter and welcome to this corner of the Community although I am always sorry to see folks joining these groups. 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 older 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.

I had a look through the site using the search tool near the top and the Philadelphia chromosome collects a few hits across the different types of Leukaemia’s. Try the serch tool and Rene et to select ‘anywhere’ to get all the hits.

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 Highlander, really appreciate your reply and great to find a group, although I see it isn’t that active… I guess being more rare might explain it. I did some research over the weekend about my platelet diagnosis and uncovered a meta analysis about other CML sufferers with high platelets rather than WBC. I was astounded to read that they only identified 20 individuals between 2000-2020 in all the English language research worldwide. So, I am pretty rare. I was afraid to read the findings, but luckily our son is a Dr. And he read them, confirming that of the 17 with data  16 we’re still alive and only one had progressed to blast phase once treated with Imatinib. So am calmer. I have a good team around me locally, feel relaxed and quite well. I have only been taking the Imatinib for four days so far, so hoping my lack of side effects continues! I walked for 40 mins today. Tried a bit of running yesterday but got some of my original symptoms back so can’t be entirely normal yet… I am 62 years old and hoping to be as active and healthy as I have always been. 

You are doing great and keep aiming to be active as this activity helps a lot. Great that your son is a Dr as this helps you better understand the science and be able to cut through the challenging information that can come along and 16 from 17 is actually very good when it comes to rare blood cancers. My type of NHL is rather rare so I do understand the challenges of feeling alone and being the only person in the world with this 

it actually took over 16 years to eventually meet a person with my condition and he was actually sitting right next to me at our first Maggie's Centre monthly Heamatology Support Groups.... worth checking out.

Do also check out Leukaemia Care UK as they run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

Always around to chat ((hugs))