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Myeloproliferative neoplasm

Myeloproliferative neoplasm

Posted by Jholmes on Jul 27, 2020 3:59 pm

Hi everyone,
My name is Jess and I started my diagnostic journey a few months after I married my wife. A routine blood test at my family doctor found me with high platelets and liver enzymes. I had an ultrasound and they found an enlarged liver. I visited a hematologist oncologist and was told that I have a mutation called JAK2 and that I likely have Essential Thrombocythemia, which is a blood cancer under the family of Myeloproliferative neoplasms.

Lately my blood tests have been changing and it is possibly that I now have myelofibrosis, which is a much more extreme and deadly cancer under the same family of diseases. I just turned 30 in May and am struggling while I await my bone marrow biopsy which will hopefully give me a more firm diagnosis.

Since I was recently married I find planning my life to be the most heartbreaking process considering that I may not have all the time I had originally thought.

Any tips for getting through the waiting game would be much appreciated. 

Re: Myeloproliferative neoplasm

Posted by Jholmes on Jul 27, 2020 7:05 pm

I should say, this is a rare disease that only affects 1.5 in 100,000 and is technically not a leukaemia rather a chronic “blood and bone marrow” Cancer. 

Re: Myeloproliferative neoplasm

Posted by alexisrj on Aug 1, 2020 1:22 am

Hi Jholmes‍ - Lacey_adminCCS‍ tagged me on your other post but I figured it's just as well I respond over here! I don't have a blood cancer - I had colon cancer - but I'm 35 years old, married and I have 3 kids. Was diagnosed when my youngest was 9 months old this past April. Going through a cancer diagnosis with all the uncertainty at such a young age is A LOT. My cancer was caught early and I still have difficulty planning for the future and feel like I need to preface everything with "as long as I'm still ok". One coping strategy that worked for me is to focus on what I know to be true today, not what might be true tomorrow or in 1 year or 5 years or 40 years... Another thing that I kept telling myself while waiting for results is that whatever is there is already there, the only difference in knowing is that I can do something about it. 

Have you received any further test results or a firm diagnosis since you last posted? If you are up to it, let us know how you are doing. I'm still new to the forum and don't know who has experience with blood cancers but maybe Lacey_adminCCS‍ or Wendy Tea‍ can tag a few others who may be able to help/relate.

How is your wife coping? There is a caregiver forum on here and lots of info/support available for her as well. My husband often explains it to others that the cancer doesn't just affect the person who has it but the whole family (in different ways of course). The Cancer Society Peer Match program was cancelled but Wellspring has a peer support program as well (all telephone/virtual now) and other supports for those with cancer and their caregivers/family.

Sending you virtual hugs ❤

Re: Myeloproliferative neoplasm

Posted by Wendy Tea on Aug 1, 2020 11:09 am

Jholmes‍  As suggested by alexisrj‍  I have done a member search and you are indeed a rare breed. The good news is you are posting in all the right places to find someone who can help us. I was not able to find anyone who matched your diagnosis.  Please try to keep your spirits up as Canadian doctors fight really hard to have successful outcomes. 
Healing takes time and opportunity. Wendy Tea