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CMML diagnosis

Cross mill 10
Posted by

My 70 year old father has just been diagnosed with CMML, he is telling me that it’s nothing to worry about. I couldn’t really find out a lot about it on this site and wondered if you could help me out. How serious is it? What’s the prognosis? Is there any treatment?  He lives over 300 miles away from me and I’m worried he’s not giving me the full facts to stop me worrying. Anything you could tell me would be much appreciated, I would prefer to be armed with the full honest facts so I can help him in the best way possible going forward. Many thanks. 

Ellen M-Macmillan
Posted by

Hi ,

Thanks for getting in touch with us and welcome to our Online Community.

It’s understandable why you have lots of questions running around your head just now. Hearing the news that your dad has CMML can be overwhelming. No doubt living a distance away from him will be making you feel more anxious. It’s natural to worry that your dad may be holding back from telling you the full picture to protect you, but he may be telling you what he understands from what the doctors are saying to him.

CMML is a rare form of blood cancer. It happens when there are too many monocytes (a type of white blood cell in the blood). Cancer Research UK has this information explaining

this in more detail.

There are two types of CMML They are called type 1 and type 2. The type tells you how many abnormal myeloid cells (blasts) you have in your blood samples.

  • Type 1 CMML means you'll have less than 5% blast cells in your blood and less than 10% in your bone marrow
  • Type 2 CMML means you'll have between 5 and 19% blast cells in your blood and bone marrow

The only way to get rid of CMML completely is to have a stem cell transplant but unfortunately this is not suitable for everyone.

Treatment will depend on the type of CMML your dad has been diagnosed with. It also depends on whether your dad has symptoms, his age and fitness for treatment and whether he has any other medical conditions. If someone has no or few symptoms they may not need to have treatment at first. They have regular check ups and blood tests taken.

Wanting to know about prognosis is a question that we often get asked, but it’s the one question that we struggle to answer. This is because everyone’s cancer is unique to them and the outlook for people with CMML varies from person to person. Even the most experienced doctors can find it difficult to say how long an individual may live for. But they may be willing to give “average figures” based on their experience and what they know about your dad’s medical history.

Talking to your dad about his cancer can be difficult to do. But it can help if you let him know how worried you’re feeling. Being honest that you’re concerned he may be trying to protect you can be a good starting point as you might find the answers he gives you more reassuring. Letting him know that you want to support him in any way that you can and that you don’t need protected from the truth can be helpful to do.

Is there any possibility that you could ask your dad if you could have his permission to speak to his doctors or nurse specialist? Or if you could manage to go to his next hospital appointment as this would give you the opportunity to hear what the doctors are saying to your dad.

There are many ways that we can support you and your dad. You can also give our Support Line a call on 0808-808-0000 and talk to one of our nurses. Our lines are open 7 days a week from 8am till 8pm.

Best wishes and take care.

Ellen-Macmillan Online Digital Nurse Specialist.

Thehighlander
Posted by

Hi , a great answer from Ellen.

I am Mike and I help out in our blood cancer support groups. I don't have CML but have lived with my rare type of Non Hodgkin's lymphoma for over 20 years and can understand the issues you and your dad are facing.

We do have a dedicated Chronic myeloid leukaemia support group, but due to it being a rare condition it can be slow, but you may want to post in it as there has been some folks posting over the weekend.

Follow the link above and join the group by hitting the ‘Join the Group’ tab just under the main group name and it is worth indicating how you want to receive email notifications when someone answers your posts.

Go to the 'Start a Discussion' tab just under the main group name and set up your own Discussion and introduce yourself to the group including any questions that you want to ask the members.

All the very best.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela