Hi guys
I'm dave and my wife has be diagnosed cmml leukemia with the roge gene last year
Wendy has had two blood transfusions to boost her hemoglobin, she has a swollen stomach and isn't able to eat very much without being sick, but this week her joints are really painful and can't move very well, she's booked in for a scan on her spleen this Sunday
Any advice would be appreciated
Many thanks dave
Hi Dave Sixpencecottage and welcome to this corner of the Community although I am always sorry to read about your wife Wendy. 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.
This is all a very steep learning curve for you both at the moment but let's look for things to improve quickly.
You don't say if Wendy is on any specific treatments at the moment......... some treatments like chemotherapy and targeted therapies can cause painful joints but this can also be down to the lack of activity and her muscles can start to get weak...... so some simple regular exercise can help.
As for the sickness, do report this to her clinical team as there are lots of different types of anti-sickness meds and often it is trial and error to get the best one.
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
