Just been diagnosed with cml would love to chat to someone .

Hi  and welcome to the Community but so sorry to see you finding us.

I am Mike Thehighlander and I help out in our blood cancer groups.

Your diagnosis has come out of the blue and your head will be all over the place but once all the tests are done and a plan is put in place the noise in your head will calm down.

There are a number of folks in the group look in from time to time so let’s look for them to pick up on your post.

I was diagnosed with a rare Non Hodgkins Lymphoma in 1999 and yes I have been through a lot of treatment but I am doing good.

Blood cancers are very treatable, this information from Bloodwise would be a good place to find some good information - just hit THIS link.

I have had a few Bone Marrow Biopsy (BMBs) and on the whole they were ok.......it is a mind game but the folks that do these are very good at these and will talk you through it. Klick on this LINK for some information...... but it is basically used to double check you cells that are in the Bone Marrow.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names...... like Thehighlander

Always around to help as best as I can ((hugs))

Dear I understand your shock at being diagnosed with a blood cancer it’s not a disease that most people know much about till they get it. The good news is that CML is one of the most treatable kinds with good outcomes. The bone marrow biopsy is the best way of getting the most accurate diagnosis and the results will influence the type of therapy you receive. It’s nothing to be afraid of, i have had one and routinely meet people at my clinic who are having the procedure. It doesn’t take very long to do and you receive plenty of local anaesthetic and are free to go home after half an hour of so. Try to enjoy your Christmas despite your worries, once your treatment starts in the new year you will feel more positive about things. You were very fortunate to get a early diagnosis from a routine blood test as this is often not the case, as a result you will be starting your treatment as early as possible, which is a very positive thing. 

Hi Lucy sorry to hear about your situation. I was in a similar one myself back in June after being diagnosed. The bone marrow biopsy I was told is to test to make sure it's definitely CML. It's not fun but they need to do it to test. I was put on a couple different oral chemo tablets for a few weeks then on to imatinib which I take once a day. I know most people think of chemo as losing hair etc but in my case at least that wasn't necessary. Neither was an extended hospital stay. Everyone is different of course bit this is a very treatable illness. My blood counts are now back to normal after having my whites at 440. Just on one tablet a day for the foreseeable, possibly the rest of my life. Not too bad really considering how scary it was initially. Some people do go into full remission and can be taken off the tablets but by no means all.

I'm sure other people will tell you the same but it definitely is treatable and won't take over your life if you don't let it.

Thank you so so much for such a positive reply . I will keep reading these back which is going to help me so much at this time .. I’m so sorry this has happened to you as well xxxxx

Thank you so much for your reply . Reading such positive replies helps me so much . Xxxx

Thank you mike for such helpful information this is going to be such a help for me 

Hi Lucy, im Carol. I was diagnosed with cml 9 years ago, aged 51. I put my faith in the haemotogogist and she had me in full remission within 6 months. Initially i was taking Imatinib tablets which didnt agree with me so it was changed to Nilotonib tablets and they were great. Ive been in totally remission for 8 and half years and have just agreed to do a trial and  come off the tablets to see if i stay in remission. Be strong and do everythong they advise you to do. You'll soon be on the mend me lovely x

Hi. Sorry you are here, And yes you will be ok x

This is absolutely amazing news carol . I am so so pleased for you . 

Good morning , you have had some great encouraging reply’s.

The first initial thoughts when cancer is mentioned can be dark, very dark but as you see, blood cancers are treatable, yes some treatments are a bind but it’s all about the end goal in this.

Back in 1999 when I was diagnosed with Cutaneous T- Cell Lymphoma I was told I would never see remission and it would ‘get’ me some day, some year in the future......... Late 2013 everything went wrong as my condition became very aggressive so we embarked on a treatment journey that had to work as I basically had 2-3 years on the clock........ zoom forward to September 2915 I was told I was in remission with No Evident Disease..... party time.

This can be won and you need to see and think this, trust in your team and trusts in yourself to get through this ((hugs))