Hi Michael

My Haematology Consultant has been phoning me by appointment every 4 months since Covid started.  My supply of tablets are then being delivered by the hospital direct to me at home.  Couldn't wish for a better service and I know I am lucky to live where I do.

Hopefully the vaccine will enable us to meet face to face when we need to, but until then, keep well and look forward to a less worrying and more social 2021.

Maureen

Hi Sammy and all

Hope everyone is coping under fluid situation this year as we see light at end of the tunnel with vaccinations

In response to requested symptoms I started having after turning 30 with platelets ranging 1100 to 1300 at peak levels before medication and still have fatigue, low grade fevers. I have increased migraine frequency over the last 2 years but rashes and itching have been chronic since diagnosed following bone marrow test. I am taking anagralide for about 4 years which appears to regulate my platelets around 450 to 550 range. Side effects of swelling and secondary condition of gallstones do conflict each other.keep getting spleen monitored via ultrasound especially if swelling or feeling inflamed. 

Hope everyone continues to enjoy best of circumstances each day

Nadia 

Hi I was diagnosed with ET at least 5 years ago my consult told me it was a blood cancer but not to look at anything on the internet and he would give me all the info I needed. He said I could continue on aspirin until I was over 60 or platelets were over 1000. I have a new consultant who has said that as my platelets are 680 I will have to go on chemo tablet so I totally understand I am scared too. I have just had a hysterectomy so I think my increase is due to that so he has said we will review in 2 months. I really don't want to go on these tablets so I'm looking and diet changes. I also had Covid in October so could be that too? 

Hi Libbie

I was diagnosed with ET over 20 years ago and have been taking Hydroxycarbamide since then.  As platelets are created by the bone marrow to help mend any damage to the body, I think I have found that a bad graze or bruise that I have had, shortly before my 4 monthly blood checks, have caused my count to rise a little.  I have not heard that diet changes have any effect on how many platelets the bone marrow produces, but if adjusting your diet makes good changes to your body shape and energy levels, then that is all good.  My platelet count started in the 700's, but with the drug, it is now always in the 300's, which must make me less liable to having blood clots or strokes.  Your Consultant has specialsed in Haematology because he/she wants to give you the best treatment, so they would not recommend a chemo drug, if it were not needed.  Glad you recovered from Covid - this is such an unhappy time for so many people.  Luckily Covid can't stop Spring coming.  Keep well. Maureen

Hi Maureen 

thanks for your reply. That's really reassuring to know that u have been on the drugs that long. Do u have any side effects? I suppose the consult just scared me as I wasn't expecting it. Will see wot happens at my next appointment it doesn't help that it was a phone consultation. I am really looking forward to spring it's my favourite time of the year. Take care 

Hi Libbie

No side effects that I can pinpoint.  When I was first diagnosed, I was just glad they could 'give me something' to take the worry of it away and allow me to get on with my life.  If you decide to read earlier posts from me, you will find that I was allergic to the drug I was first on, as it affected my heart.  This was Anagrelide and I believe they now do regular heart checks for those on it..  They treated the heart problem and put me on Hydroxycarbamide.  I must tell you that I am now 83, so naturally have the 'side effects' of getting older, but intend to beat my mother, who lived to 90 and maternal grandmother, who lived to 97!  If they give it to you, take the drug, get on with your life and have fun. xx

Thank you that's so great to hear I feel so much better about it now. I really hope u get to beat ur mum take care 

Hi I have to see heaematologist at end of March,my platelet reading is around 470 to 480. I am so anxious and stressed at the moment.I had a stroke 2 years ago and I suppose I'm afraid of having another. I have had ECG recently...everything was fine..why am I so anxious? The pandemic certainly doesn't help. Visits to hospital are scary. Reassurance please....

Hello Junep  Firstly, I am sorry you had a stroke 2 years ago.  As you probably well know, worrying about what might happen doesn't really get you anywhere, but planning how to deal with a situation does.  You have an appointment to check on things in March and, to my inexperienced knowledge, your platelet count does not seem really high.  Mine was over 700 when my treatment started. It seems that your heart is functioning well and, if your GP/Haematologist were very concerned about your condition, they would be seeing you much sooner.  That in itself, is reassuring.  Doctors are doctors because they want to help people who are ill and therefore prioritise who they see first.  The hospitals are being so very careful to keep Covid patients separate from all the others and, by March, many more people will have been vaccinated and we should be seeing more light at the end of the tunnel, although I do see a tiny gleam there now.   We are human and naturally anxious about the unknown as we don't know whether to take flight or hide.  I find that, if nothing frightening seems imminent, I take one hour, then one day, then one week at a time.  Look forward to the increasing sunshine, spring flowers and being able to sit in the garden with a cuppa.  I would join you if I could.  Be kind to yourself and remember 'We will meet again' with your family and friends.

Thank you so much Maureen for your advise and kind words. I had my vaccination on Friday,so that's a positive move. I think living alone ,especially after having a busy work life ,teaching, not seeing family and friends makes thinks much worse.But I have never had anxiety like this.I will try to go one hour at a time and yes the lighter days are coming....thank you again...you seem to help so many people x