PDGFRa associated MPN (Chronic eosinophillic leukemia)

Hi and welcome to our corner of the Community.

Yes, this is all very confusing and I would always recommend talking with your team as every Blood Cancer case is individual.

this advice from the government is encompassing and is a good guide what to look out for and what you should or should not do and Macmillan have also provided some information and answered some key questions around cancer and coronavirus (COVID-19).

This link takes you to the most up to date Bloodwise information about the Coronavirus.

The fact you have a type of Blood Cancer (Leukaemia) and PDGFRa does put you in the ‘At Risk’ group.

This site is organised into various support groups so we do have lots of groups that are Cancer specific  and also ones that are general Cancer experience groups.

I was diagnosed in 1999 with a rare type of Skin NHL and if you hit my Community name you will see I also have Asbestosis. i am now over 4 1/2 years post my second Allo Stem Cell Transplant, in remission and even a few weeks back my Late Effects Nurse said   “……you need to think that you have just come through your Allo SCT again and take exactly the same precautions as you did then........”   so I am basically back into a three+ months isolation controlling everyone I come in contract with and where and what I do.

She also said ”……. once a blood cancer patient always a blood cancer patient"......... "All the treatment you have had has indeed had a long lasting effect on the effectiveness of your immune system even although your bloods are ok with a few at the lower limit range of acceptable, like any virus you are at risk but this one we don’t know how a post Allo SCT Patient will react - let’s be safe and not sorry”

Not much help for you - sorry. But this virus can not be underestimated - talk with your team.

Hi Mike, OMG thank you so much for taking the time to reply and point me un the direction of bloodwise. I am touched that you took such time to respond. Thank you so much. I wish you good help. I think I am trying to avoid isolation for 3 months but deep down suspect I should me taking this precaution. I will phone my team tomorrow. I just moved house to a new area so doubt my new GP will even know me. He had to cancel my appointment to soeak to me about my illness before this all kicked off. Thank you again x

Patrick, I am pleased that you found the information helpful.

There is no real information as yet to how this virus will effect people with blood cancer - so Safety is the watch word.

Do join some of the groups but I will always be around on this thread you have started.

Stay safe not sorry.

Thank you, it seems the rarer the blood cancer the less infomation. My consultant said only about 10 people in the UK have a PDFRa mutation MPN. I am grateful at very least to have received tour support. You are a kind chap. I don't want to stop work (am self employed)  but its better than getting really ill and taking uo bed space. I need to re arrange my thoughts for a few days abd become less selfish. I hope my new GP has me flagged up and I can talk to him.

Many thanks and with kind regards 

Patrick 

I was Self Employed when it all properly kicked off 6+ years back when I was 58 and never did go back..... see my profile.

I know that our Macmillan Support Line Services -  on 0808 808 00 00 is VERY busy now but you could try phoning tomorrow as you can talk with our Financial Support and Work Guidance teams mostly open 8.00 to 8.00 but check the link.

Always around to help Patrick