Newly diagnosed with two blood disorders

My main query is .... is there anyone on here with both Cll and PV?

I am coming to terms with a double whammy.

I saw consultant at the beginning of May and was told I had Cll Chronic Lymphocytic Leukemia as well as PV Jak2 positive.

The Cll was to be a watch and see but for the PV Hydroxycarbamide was recommended.

I have not started on the full treatment suggested by the specialist yet as I wanted more information, my GP had told me about the Cll but not the PV.

I am, though, taking aspirin as recommended and have bloods scheduled at the beginning of July. As I am an active 73 year old in good health with no symptoms although now I am analizing all aches and pains! I wanted to take in all the information in first hence my lurking on here and now posting.

4 Replies

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  • Hello nanmc, welcome to our forum, well you have indeed been hit with a double whammy. We have a lot of information on our website mpnvoice.org.uk/ about PV and hydroxycarbamide, which might help you, we also have lots of videos of patients and leading haematologists talking about PV and medications, have a look and see what you think. You will also get lots of replies from the lovely people on here so hopefully we can all put your mind at rest and help you make a decision as to what to do about taking the hydroxycarbamide, there are many of us on it, myself included, I have ET, and have found it to greatly improve my quality of life in managing the symptoms. Best wishes, Maz

  • I was diagnosed with both CLL and MF at the same time. The CLL doesnt seem to matter so far.

  • As it is still early days for me can you tell me how long ago you were diagnosed and what treatments are you having? Share this information as a message if you dont wish to do so publically

  • Hi Nanmc

    Happy to share. I was diagnosed with both CLL and what was originally thought to be ET ( but was confirmed as JAK2 MF in January 2017 after a bone marrow biopsy) in December 2016. So about 6 months ago. I was started on hydroxycarbamide which I couldn't tolerate, as it gave me an awful anxiety reaction. I've been on ruxolitinib since the end of April: I do seem to have more energy, and the awful intense anxiety has abated.

    I am also on an oral anticoagulant, rivaroxaban (20mg), which had been prescribed for me after I'd had unprovoked pulmonary embolisms about 4 years ago. That continues.

    Tho as its the one that doesn't have an easy reversal agent, and my bleeding risk must have increased, maybe I ought to check whether another one of the oral anticoagulants that does have a reversal agent might be a better idea now.

    My local haematologist is keeping an eye on the CLL, but isn't concerned about it.

    Hope this helps: do keep in touch.

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