Hi all. Very sad to be here and also grateful for the support. I hope you are all progressing well with your personal journeys of recovery. I was diagnosed with cml a month ago and start imatanib today. I know it will compromise my immune system but I have to continue work. I train leaders and have to go into the city and be in conference rooms with them. I am afraid what is your advice.
Hi Thandi and welcome to this corner of the Community although I am sorry to see you joining the community and to hear about your CML diagnosis.......... I am Mike and I help out around our various Blood Cancer groups.
I don’t have Chronic Myeloid Leukaemia (CML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this 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.
As for your question about your reduced immune system....... Imatinib...... like many other blood cancer drugs does unfortunately reduce the effectiveness of your immune system and you will be open to developing infections...... if unchecked these can develop into things like Pneumonia and Neutropenic Sepsis...... I have been there a few times and it is not a great experience.
From my long experience a small cough for the person sitting next you is not a problem for them..... for you it can develop into a more challenging problem.
I was on Active Monitoring for the first 14 years of my diagnosis, I was on treatments but not full on chemo or immunotherapy..... I continued to work in a demanding teaching job for 12 years but I was always catching colds, flu........ and that was with my immune system not full reduced.
During my main chemo years late 2013 to late 2015 I was clearly told to avoid uncontrolled crowds where I was not confident that the people there were not carrying an infection....... and if I had still been teaching I would have had to take long term leave.
If you do have to work you are basically going to think back to Covid times and use as much of the infection control routines we were doing back then...... masks, good air flow, good hygiene.... and unfortunately uncontrolled crowds were not advised during that time.
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 and the one I attend does have a person with CML in it so worth checking.
Always around to help more or just to chat
