Hello everyone
My husband was diagnosed with what the consultant first thought to be Myelofibrosis but after all his bone marrow results came back has been re diagnosed as Atypical Chronic Myeloid Leukaemia. We are told this is very rare. He has only been retired for just over a year and our lives and family are shattered by the shock. We have been given no understanding of what to expect and anything we are learning is through Dr Google. Today on Blood Cancer Awareness day I stumbled upon this site and forum. My husband is to attending the hospital soon regarding a stem cell transplant , maybe they will be able to put us in the picture. We have been having a monthly telephone consult with the Haematologist and we prepare our questions and update before hand. Maybe we just arenāt asking the right questions. My husband asked about support groups and was told there wasnāt any near us for Leukaemia. There is apparently a group for nuclear workers with all cancers, my husband was a nuclear worker for 38 years so we can look into that. This forum looks pretty supportive in sharing knowledge. We just feel like the bomb has been dropped and we are all at sea on our own.
Hi @Feederupper firstly you are not alone you are part of our forum family.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) at 53yrs old and that was 20 yrs ago.
All situations are very different because we are all very unique individuals with our own medical histories.
It is very natural to feel shattered by the shock, you describe it so well ālike a bomb has been droppedā.
Personally I would would try and resist Dr Google if you can, there can be out of date and unreliable information out there.
Yes, I expect as all the test results come in you will get more information about the way forward. I believe this to be (I am not a medical person) because all treatment plans are tweaked to be individual to the patient.
Perhaps ask very direct questions about the planned way forward and ask your biggest fears and practicalities. I always say that I have learnt to beā pleasantly assertiveā and I do not leave until I have answers.
Be ever so kind to yourselves and please do keep posting how you both are.
Look after yourselves
Thank you so much. I have shared your site with family members who are a tower of strength being a close knit family we all feel a bit lost at the moment.
Hi @Feederupper.
I can see @Erica has given lots of good advice. I googled when I was diagnosed with Lymphoma and found it to cause more worry, not less. This site is amazing and you will find all the information and support you need.
Remember the support line is there as well. They are great to talk through and concerns or worries you have.
I hope you find your new forum family a source of support. You can say how it really is for you and ask anything you want. So often, just sharing your experiences and reading others makes such a difference.
Emotions will be up and down so please take good care of yourself.
Lots of love Nichola
Thank you for being so kind.
Dear @Feederupper,
Iām so glad that you found our forum. It is an incredibly difficult time and it is perfectly normal to feel shock and a sense of being lost. But you have come to the right place to help you navigate this journey.
I was diagnosed with chronic myeloid leukaemia over 12 years ago but I can remember those initial feelings at diagnosis. Keep talking about how you are feeling and itās also helpful to make a note of all your questions ready for when you see the consultant. To echo my fellow forum volunteers do try and avoid Google!
Please take care and keep us posted. Sending lots of love x
Thank you Maggie, Iām amazed by the supportive response Iāve had to one post! I always write down our questions before the consult as Iāve found it useful in going back to my notes as there is so much to take in, so I agree thatās a sound piece if advice. We are waiting at this moment for a telephone consult with my husbandās Haematologist to go through his symptoms and latest blood results. Have you had a stem cell transplant?
Hi @Feederupper - Iām so glad you are feeling the support of the forum.
I havenāt had a stem cell transplant. My treatment has been the TKIs. But Iām sure there are others on the forum that will be able to share their experiences.
Let us know how you get on with the consultation.
Had another consultation via phone today, I asked about the difference between Atypical Chronic Myeloid Leukaemia and Chronic. Atypical is very rare on 1-2% of the population. It can only be treated with stem cell transplant. We have appointment with transplant team in the North East on Monday. With Atypical there are changes at a genetic level with 2 genes fused together and white cells are too many and abnormal in appearance. There is a shortage of normal blood cells.
If there is anyone on here with Atypical Chronic myeloid leukaemia?
Only 1% to 2% of people with Chronic myeloid leukaemia have aCML. According to a 2023 study, just 103 people in the United States received a diagnosis of aCML between 2016 and 2020. The condition is more common in males and people over 65 years of age.
Hi. I am a Canadian, white female and 62 years old. A likely Monoclonal gammopathy of unknown significance (MGUS) diagnosis (or worse) is coming my way very soon. This is where Iām at. Iām actually paralyzed with fear and shock. My husband knows of course but I havenāt told my children yet and Iām so sad to have to do that. They are in really good places in their lives and I was hoping to be a part of that for many years to come. I want to meet my grandchildren someday. My mom passed of breast cancer when she was 69 so I didnāt have her much. My sister passed at 60 and left her two daughters. My daughter was already fearful that sheād lose me early. I canāt believe this is happening. I know that the percentage is low for Monoclonal gammopathy of unknown significance (MGUS) to progress to MM but I keep reading about people who have it progress rather quickly. It seems common.
How do you live with the constant cloud of worry over your head? It will be there for my kids, too. Iām so sad that I canāt have a ānormalā life like my friends and siblings have.
Hi @Theresa Welcome to our forum, I am sorry to hear that you feel paralyzed with fear and shock and feel so sad.
I think it is natural when you do not know what is going on and waiting, it seemed never ending to me.
Donāt forget you have had life experiences that are also adding to your thoughts and feelings.
I have leukaemia and felt similar thoughts to you when I was diagnosed at the age of 53yrs old and that was 20 yrs ago and my 70th birthday was my best ever.
Be ever so kind to yourself and, I know this is so, so difficult, try and divert your mind and try and stay in the day, do nice things and spoil yourselves.
Please do let us know how you get on
Thank you, Erica. Itās like a death. I will adjust slowly, just not yet. Itās encouraging to hear you say that your 70th was so wonderful. I wish and hope this for myself but mostly my beautiful family. I want to live as long as possible but Iām afraid Iāll make a mistake and miss doing something that could have saved me. 
Thanks again for your thoughtful words.
Theresa 
Hi @Theresa.
A big welcome to the forum. Iām glad you found us as you will see so many of us understand the use thoughts and feelings you have right now.
It is a slow process adjusting. I have been on active monitoring for 7 years since my lymphoma diagnosis. At the beginning I didnt know what to do with myself and my every thought and feeling was about would I be around for my children? How could I live with this hanging over me etc. I can honestly say that as time as gone on it doesnāt consume my every thought. I have bad days, of course I do and thatās fine. Iāve learnt to be kind to myself and know itās ok not to be ok all of the time.
Telling the children was really difficult and I left it quite a while. Looking back I wish Iād done it sooner because itās all I thought about until I did it.
There is lots of support out there and just having a space to say how it really is for you will help.
Just take your time with things and take each day and hour as it comes X
Hello @Feederupper,
Thanks for your post and Iām so sorry to hear about your husbandās diagnosis. Like others, Iām so glad you found our supportive forum and felt able to share.
In case this is helpful and in the interests of helping you avoid Dr Google - I am sharing some more information on aCML from our colleagues at Leukaemia Care: Atypical-Chronic-Myeloid-Leukaemia-aCML-Web-Version.pdf (leukaemiacare.org.uk) It sounds like you are already asking some helpful questions and getting prepared for your appointments, but perhaps this may help further.
I canāt say for sure if someone else has the same condition here on the forum, but you can use the search bar at the top to look for relevant posts, for example people discussing stem cell transplants.
We also have this free booklet about stem cell transplants available to download or order print copies: Blood stem cell and bone marrow transplants booklet | Blood Cancer UK Shop
I hope this helps. As already mentioned, our support services are also here for you should you wish to discuss in confidence. You can email: support@bloodcancer.org.uk or phone: 0808 2080 888
Take good care of yourselves,
Ali