Essential thrombocythemia

Hi, I have recently found that I have ET and although rationally I am trying to keep it in perspective, I'm feeling emotionally a bit of a mess. I think it's the 'cancer word'. Ridiculous really. I need to get a grip! I have had lots of blood tests over the past 18 months and they have shown high platelets. I am only taking 75 mg aspirin daily at the moment. I am a 55yr old lady and I initially went to gp. with horrendous tiredness. I am having three monthly B12 injections which have definitely helped but I am still experiencing ongoing jawline abcess- type lesions. I also am very prone to cold sores. Does anyone know if abcesses and skin infections are common with this diagnosis?. Also, I have noticed that if I exert myself a lot that my hands and feet get very red. 

Could somene possibly enlighten me. 

Thank you in advance x

 


  • Hi Tinkerbell,

    I am sorry to hear about your symptoms. Most of us on this site are cancer pilgrims ourselves and are not doctors. Can I suggest that you either post your questions in the Ask the Nurses section of the forum or phone them? Their number is Freephone and is at the bottom of this page and, they are open from 9.00 - 5.00 Mon - Fri. They should be better able to answer your questions.

    I am not a medic, but it sounds as if you are generally run down. I am glad to hear that your B12 injections are helping your tiredness, but would suggest that your cold sores, abscesses and skin infections could all be tied in with your anaemia. Perhaps you could have a word with your doctor about getting something to prevent these from recurring, rather than waiting until they are present and just treating them then?

    I sincerely hope that you can get some answers.

    Please let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Thank very much Jolamine

     

     

    Hi Jolamine, 

    Thank you very much for your very kind response. I have noted your advice and support and will endeavour to speak to a nurse/Gp.

    About a year ago I was constantly on antibiotics for flare ups of abcesses etc. but decided to try and self manage my skin infections to see if I could prevent the unwelcome tummy problems I was experiencing with the antibiotics.

    i was also taking antivirals, (acyclovir etc.,  but still,  even whilst taking these I seem to be succeptible to recurrent sores. Feeling pretty fed up and very lacking in motivation and energy. In fact feel pretty low. It's quite debilitating mentally and physically, but know I am much luckier than lots of people, but still quite shocked by the diagnosis. 

     

    Thanks again sin for your help. Hope you are doing okay too.

     

    Kind Regards 

     

     

  •  

    Dear Tinkerbell,

    If you are keen to self-manage your infections, have you tried Lysine? My son and hubby both suffered from continuous cold sores. Since they got this years ago now, they have both been free of them. You can get them in health food stores or on line and, there should be no tummy problems with them. Discuss this with your doctor first to see that s/he is happy with this.

    A diagnosis like this is always a shock and takes some getting used to. Most of us find our emotions all over the place to start with.

    I hope that your GP can be of some help to you.

    Kind regards,

    Jolamine xx

  • Hi Jolamine, 

    Thanks very much for your kind response. I have taken lysine previously, (but perhaps I didn't take enpugh).?Will endeavour to check if I'm still able to take it when I next see my Gp. To be honest emotionally I'm very upmamd down with the news about my Thrombocytosis. I still keep thinking I've misunderstood and perhaps it's not what I've got. I think it's just a shock. Really don't want to overthink it but keep noticing different symptoms now I've leaned more about my condition. 

    Not sure if you gave similar symptoms etc, I have noticed that my hand and feet get very red after I do anything very physical. I have also been having palpitations, but think these may be stress related. Having to have more blood tests and an ECG to check. Hopefully this should be too much of a problem.

    Hope you are doing okay and thank you for taking the time to message. Back. 

     

    Much apprecated. 

    Thank you x

  •  

    Hi Tinkerbell,

    You are as well to check with your GP about Lysine before you start taking it again.

    Don't worry about your changeable emotions. It is perfectly normal for these to be all over the place after your diagnosis. Do you find yourself crying a lot? Many of us do. If you do, don't worry about this, as crying is good for stress relief.

    I hope that your palpitations turn out to be stress related, but I am glad to hear that you are going to have an ECG to make sure.

    Don't forget to let us know how you get on.

    Kind regards,

    Jolamine xx

  • Hi Jolamine, 

    Very much appreciate your kind words. It's helped me feel slightly less isolated. Fingers crossed my palpitations are not related to my ET. Will definitely keep you updated re: my ECG next week.

    Thank you for your support. 

    Hope you aren't struggling too.

     

    Kind Regards xx

  •  

    Hi Tinkerbell,

    I'm looking forward to your update.

    Kind regards,

    Jolamine xx