Hi
My Mum has CMML2 first problem identified a few years ago. Left on watch and wait. She also has Diverticulitis which have really bad flair ups. She is feeling extremely unwell, not wanting to eat, no appetite, being sick after a few mouthfuls, exhausted, no motivation which Oncology thinks the symptoms are down to the Diverticulitis and say she wouldnt be feeling this bad just with the Leukemia. Oncology are not offering treatment for the cancer, I dont know if we are getting the right medical advice. We had to miss the last oncology appointment as Mum told them her Diverticular were bleeding when she got there so they sent her to A&E... it really wasn't life threatening!! I asked them to see her for her Oncology appointment and then she could go to A&E. They refused. I am feeling a bit frustrated by the lack of urgency to consider any treatment and it feels like we are running out of time. Has anyone else experienced CMML2 and what should we expect when someone is 78. Be grateful for any advice. Thanks
Hi and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike and I help out around our blood cancer groups.
I don’t have CML but was diagnosed way back in 1999 with a rare incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.
Like many blood cancers there is a ‘point’ where there will be a move away from Watch and Wait….. I prefer the new term being used Active Monitoring onto treatment.
For me this basically took 14 years….. but each case and indeed blood cancer type is different and it is all about following the medical signs and other health conditions that are presenting.
I am in no way qualified to comment on your mums care but you could post your question to our Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
There is a need to have an honest cards on the table conversation with her medical team so you have a clear picture and if you are not satisfied you can look for a second opinion and this is some Macmillan Information on getting a second opinion
There have been a few new members join the group over the past few weeks so let’s see if they are looking in to give you some support.
I have meet a number of folks on the wards over my years who were in their late 70s and 80s with various types of blood cancers including CML and some tolerated treatments well but others, due to existing health conditions could not tolerate the treatments. Some of the treatments used for blood cancer are very strong and the body can take a severe hit.
Always around to chat more and help as best as I can ((hugs))
Hi again, you may also find our Carers only group helpful as this will connect with others supporting family but do remember this is a general group so does cover every cancer type under the sun.
But for the specifics of dealing with Heamatology this would still be the best place ((hugs))
