Hi everyone, 

I like Maureen have taken a sensible appproach to the coronavirus virus and carried on as normal.

However after the announcement today of people over 70, pregnant women and those with underlying medical conditions self isolating for 12 weeks, I would like some clarification.

I don’t know if it is a silly question but does anyone know for sure if ET comes under these medical conditions as you only seem to hear about asthma, diabetes, respiratory diseases etc.

If anyone has some up to date information I would be most grateful.

Keep safe 

Vanessa

Hi, 

I'm another one who would like some idea of what I'm supposed to be doing after the announcement earlier today. I've had ET for 13 years and take hydroxycarbamide and aspirin, I'm also borderline neutropenic and have hypertension! I work in a school so keeping a social distance is practically impossible as is working from home.

I'm not usually a worrier but have to say I am getting quite concerned now.

I feel more confused than ever!

Stay safe x

Thank you Scrumpy,

I telephoned 0808 800 4040 which is a number on the MPN site if you have any concerns.

I spoke to a very lovely nurse and she said that the NHS hasn’t been given specific answers at the moment. However they expect an answer by the weekend and then you should be contacted by your doctors surgery if you need to take additional precautions.

I hope this is useful but if anyone is really worried I suggest you telephone the helpline number as the nurse was very helpful.

Hi HMD, 

I am new to the forum and  wanted to see how others with ET were reacting the the PMs message about isolation. 

I can say we are immune compromised and so would fall within this vulnerable group. This I have confirmed with my sister in law who is a doctor.  So as good as I feel, I still do need to take extra care now so I can contunue to enjoy life as I did before and will do after this virus has passed.  

I have a suggestion to help tackle the dry nose to avoid nose bleeding. Put a little vaseline on your fingertip and moisturise the inside of your nose. This will prevent the scabbing and so allow the membrane to grow back full strength. 

I have a great consultant who when I told her about my tiredness - ran blood tests and realised I had a slight slowly increasing deficiency of iron. This was remedied by a prescription of iron tablets which I now take. It also helps tackle my feeling cold all the time. I guess you could say the blood is richer now - so I am warmer. The aspirin I  have been taken for the past 20 years now has contributed to my feeling cold and yes bruising is something I try to avoid as I am so vain. But yes it's a side effect of years of aspirin.

I hope this has helped.

Much love A

Hello Ina, 

I've read your story with interest, remembering when I first got diagnosed and how I felt. This was 20 years ago and I am now 50. I haven't always thought of this as a cancer related illness - but rather as one where the cells are behaving badly and need to be controlled. Partly to protect my son as the c word would have been toomuch for both of us to handle at the time. As someone said in the forum, it's an invisibble disease and so unless you tell others about it they would not understand how you feel. I only told my family but as I said, I avoided the C word. I just couldn't face it. 

I decided that I would make the lifestyle changes to lead a normal as life as possible. Once my platelets were controlled, I promised myself to stay as healthy as I could and set a health regime of a balanced diet and regular exercise. I am not perfect and I do falter, but having this illness has meant that I listen to my body much more intently. I don't take things for granted and have experienced times when I had no energy and would rather stay in bed.  When I go out now I try to make the best of each day...as I said, I'm not perfect and now that I am older, I feel I owe t to my self to live my best life now, while I can move around without too much difficulty.  So far so good. 
I hope this helps.

A

xx

Hi, 

Thank you so much for sharing your experience. My mum's nose bled for a few days and we then went for a blood test and her platelet number was high. After controlling the platelet numbers the nose bleed stoped fully. I did suspect aspirin but I was wrong. 

Thank you and hope you are doing well! 

As I understand it, by bringing platelet levels back to normal levels we are perfectly healthy  (mind you, I had no symptoms anyway - diagnosed after a couple of blood tests for other reasons )

Unless the drugs compromise immunity ? Just had a quick look and they can do so - but as we all, presumably, have our blood counts monitored regularly we should not be at any extra risk. 

But obviously some may be older or with other conditions which may put us more at risk.

I think they re-classified as a cancer after they discovered that it is caused by genetic mutations occuring in the bone marrow - such mutations defining cancers.

Before that it was classified as a blood disorder.

The only practical difference beng that people get free prescriptions !  - and I suppose that diagnosis is confirmed by the genetic testing.

The problems and the treatments stay the same !

As mentioned before, I have had ET for 20 years and, although it wasn't called cancer, I felt that it was very similar as it was a part of my body growing too many platelets,rather like cancer cells proliferating,  My diagnosis was confirmed by taking a spinal cord sample at a clinic visit and, since I have been on a lowish dose of Hydroxycarbamide, my platelet count stays stable.  Unfortunately, it does not stop me getting older, but that is the bonus of being diagnosed and treated!  Our children have put us into hibernation, so I have just bought a new camera/microphone so we can Skype - got to be able to keep track of them as well!!  Keep safe everyone!  Maureen