Informative web seminar today

[MarkD6701]

It was good to get various viewpoints from all the participants today and I would recommend everyone to watch it if they get the chance.

[piggie50]

I agree with you Mark,

I would urge anyone who couldn’t attend to watch it either on Facebook or leukaemia care.

In particular Adam mead was very clear and I understand why some of us with MPN’s have had ‘the letter’ and some have not. There is no, one size fits all! He also said that taking of Hydroxicarbamide does not lower the immune system, which is what my consultant has always said.

Unfortunately, I have co-morbidity so still have to shield.

Stay safe and well Mark

Judy

[Tico in reply to piggie50]

Thanks for that Judy, you confirmed what i thought all along regarding Hydrea not making us more compromised by taking it,the only time that would occur is if our white blood count went to low while taking it. Unfortunatley i also have comorbidity conditions. Thank again,warm wishes,tina.x🤗

[piggie50 in reply to Tico]

It’s what I thought too Tina, I should have more faith in my own judgement. I have never felt immune compromised on Hydroxy. My whites and neutrophils are at the high end f normal. It’s just when others are saying , ‘MPN you must shield’ you start to doubt yourself. I’m so glad Adam Mead confirmed this.

Best wishes Tina,

Judy x

[Tico in reply to piggie50]

I suspect the reason people are saying 'Mpn' you must shield is because even the scientists are still unaware of the impact and complications of this terrible virus especially for people with rare illnesses,thats what i believe. Stay safe & warm wishes too.tina,x🤗 P.S. l know you also live alone, you should take a look at; Positivity and well being during isolation on H U. It is friendly,funny and shares tips,jokes,illusions, the lot really,i only joined yesterday and it as put an extra spring in my step! Tina.xx🤗

[piggie50 in reply to Tico]

Thanks Tina,

I’ll look tomorrow. x

[mhos61 in reply to piggie50]

Hi Judy, I’m hoping to listen to the recording on MPN Voice.

Are some with MPNs not high risk then?

[piggie50 in reply to mhos61]

Hi Mary,

Everything Adam Mead said reiterated what my own Heam had said. My conclusion is, if I didn’t have RA I would be distancing not shielding. Those on Ruxolitinib need to take more care.

It’s well worth a listen. Xx

[Tico in reply to mhos61]

Hi Mary. I agree with Judx and with what Adam mead said at the Webinar regarding Hydrea and our immune system being no more compromised because of it. (See my reply to Judy) Hope your staying safe and well. Warm wishes,tina.xx🤗

[mhos61 in reply to Tico]

Yes, just managed to watch the link.

Hope you’re keeping well tooTina. Xx

[Chaz1 in reply to piggie50]

It was really informative & reassuring for those of us who have been fobbed off by the GP & can't get a response from the Haemo Clinic. I'd taken the cautious approach with hubby from the start but he wouldn't shield from me even though I have to work so we shall continue as we are. We aren't the most social of people so it's not been a major issue for us & I've had home delivery shopping for years as I hate shopping & thankfully managed to get a slot every 7 - 10 days.

I did come out of the webinar feeling quite blessed that we have this support, I guess with a smaller cohort it's easier to offer support & quite individualised advised than it is for some more common conditions. Thanks MPN Voice & Leukaemia Care for taking the time x

Stay safe everyone xx

[MarkD6701 in reply to piggie50]

Hi Judy,

Like yourself, my consultant said I wasn't at high risk even though I take Hydroxycarbamide. I won't go out unless I have to and still make sure I always wear a mask whenever possible.

The only thing that still makes me nervous is the need for blood tests. I'm on warfarin and obviously can't avoid tests for that, along with a blood test to make sure that my blood counts are ok.

When I went a few weeks ago, none of the phlebotomists were wearing masks, but hopefully that's now changed with more PPE becoming available.

Stay safe

Mark

[Tico in reply to MarkD6701]

I agree with you about the blood test issue mark. Im due to go to have my bloods done on the 18th May and then a telephone consultatiom 2 days later, the problem being they have problems taking my bloods the majority of the time and the most times i've been 'jabbed' is 8 times just to draw it and then its took several phlebotomists to attempt it. So if i'm having a bad day of not wanting to 'bleed' i'm going to have half the room having a go at me and be in there for around 30- 45 minutes after they've finished with the heat pads and a scanner to find one of my deeply hidden veins! Well wishes,tina.🤗

[piggie50 in reply to MarkD6701]

Hi Mark,

I need a blood test every 4 weeks and the district nurse s coming to me. Suitably gowned up.

I’m happy with that.

Stay safe and hope your parents are ok.

Judy

[MarkD6701 in reply to piggie50]

Hi Judy,

My parents are well. My Dad takes methotrexate, but has still been asked to shield himself. He was previously on Prednisone as he has Temporal arteritis.

Mark

[piggie50 in reply to MarkD6701]

Hi Mark,

Yes, I was told to shield because of the Methotrexate not because of the Hydroxicarbamide. I’m finding it hard not being able to go for a walk.

Stay well

Judy

[Threelions]

Yes, we’ll worth a watch. Very reassuring to know our own frontline heroes are looking out for us.

Thanks to all concerned for organising the webinar today👍 X

[Helpatlast]

Yes it was excellent and explained clearly why all blood cancers including MPNs are included in the govt high risk category, because the data is just not there at the mo to say one way or another if MPN would give a higher risk or not - and how younger patients those not on meds or early days of disease probably wont be at any higher risk, but the data is not there to confirm this currently so make sensible decisions. Anyone not attended do watch it, you will find it helpful and supportive. There has been so much confusion and "disorganisation" on letters sent or not sent! I am grateful for a good consultant team who from day one told me 12 weeks shield (and I am a long time patient and very low neutrophil counts) backed it up by letter and also got the NHS general letter and GP confirmation too so have shielded as directed - reality is I have gone from 6 weeks ago working in a busy legal office out and about socialising and walking miles - to the confines of shield - and time will tell if I would have been at more risk - but glad to go with direction and be safe - I am so fortunate to have caring and experienced consultants that I am under - as were Adam and Claire on the webinar yesterday - can only thank them for their time and care and support

[Trueblue8 in reply to Helpatlast]

Well said! I think it could be very easy to fall into the trap of only perhaps hearing and focussing on what you want to hear from such an informative webinar. The overriding message is, as you say, that so little is known about Covid-19, the advice given has rightly taken the 'minimum risk' approach with MPNs and included us all in the high risk category.

Best wishes Ian