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

for this Hydroxycarbamide/ HYDROXYUREA 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.

6 Replies

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  • Hi Nan,

    I'm concerned that you haven't had a reply to your question on this site although I hope the MPN site on HU have been able to give you some pointers. I'm not able to help from a personal perspective and am not immediately aware of members on here with both blood disorder though there may be some. I understand Andrew Schorr, founder of Patient Power has experience of both conditions and I'm posting a link with videos which may help.

    It could be that most of our members will not automatically know what PV is so I hope you don't mind me posting this link also taken from the Mayo website.

    'Polycythemia vera is one of a group of blood cancers known as myeloproliferative neoplasms. It occurs when a mutation in a gene causes a problem with blood cell production. Normally, your body regulates the number of each of the three types of blood cells you have — red blood cells, white blood cells and platelets. But in polycythemia vera, your bone marrow makes too many of some blood cells.

    The mutation that causes polycythemia vera is thought to affect a protein switch that tells the cells to grow. Specifically, it's a mutation in the protein Janus kinase 2 (JAK2). Most people with polycythemia vera have this mutation. The cause of the mutation isn't known, but it's generally not inherited.'

    patientpower.info/myeloprol...

    If there are any members similarly affected, I hope they'll post because personal experience and understanding of managing the two is obviously what you need. I'm sorry I can't be of more assistance but please watch the videos from PP because they may be helpful and lead you to others in the same position.

    Regards,

    Newdawn

  • Hi Nan

    Would you like to say where about in the U.K. You are and which hospital you are being treated at

    Also what symtoms you had before you were diagnosed ( face going RED ,itchy skin, pins and needles in feet and lower legs ) these are related to PV

    A lot of other CLL and PV symptoms are the same

    Did you get the run around from your GP to start with?

    Good luck going forward

    Kevin

  • Am in Scotland. I have nothing but help and support from GP practice. Am attending local hospital seeing the consultant haematologist who is keen for me to start treatment but I needed to explore options. No symptoms before diagnosis; discovered following blood test taken for thyroid levels etc. when I went to see about an ankle injury which was slow to heal.

  • Hi nanmc,

    You are not alone and although this article may not address the obvious question for how best to treat or the outcomes for these women I send it along for your interest.

    onlinelibrary.wiley.com/doi...

    WWW

  • Hi Nan, I have just found out today I have both, up till now just thought I have CLL, finding out more and having more blood tests. It's knocked me a bit for six, but I expect in a few months it will become the new normal!!!

  • Pleased to find i am not alone. Have sent you a message

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