Having just listened to the lastest Covid-19 information about shielding, it really isn’t clear whether I should be staying home or not for 12 weeks. I am 65, have ET JAK2+, on Hydroxycarbamide Monday to Friday every week. I also have high blood pressure (kept under control with tablets). As it’s classed as a blood cancer, am I in the Vulnerable category or not? On the Bloodwise site it looks like I am, but the “chemotherapy” referred to appears to be intravenous not tablet form. I am so confused!! I have been mostly staying in but don’t ant to spend 12 weeks at home if not necessary. Also, I’m due to have my blood tests at end of April in a different NHS area (I live in Essex but treated in Kent - long story!), so waht do I do about that?
Hi Michelle, this is a personal opinion, the situation is ever evolving and making us all more anxious. I think the powers that be are making statements, but then it is the grass roots level of staff that have to practically implement them and it is not as easy a job as it sounds. I probably do not think anyone can answer your question today. Personally I think it might take more than 1.5 mill letters to cover the categories mentioned. I have had to just go out to collect a prescription and my locality was nearly deserted. I also have to have blood tests at the end of April but I am trying not to worry about that now. Personally, again and I am not saying whether you should do it or not, but the sun is shining, the wind is cold, but I am wrapping up and going on a walk along a fairly deserted river towpath I am lucky enough to have nearby. The postman hasn’t been yet, ha, ha. The main thing is that we have this forum and the wonderful support line, details above, to share our fears and anxieties, ask questions, share experiences and to support each other through the weeks ahead. Take care, keep posting and keep safe we are all very special people.
Hi
If you are unsure you could contact your team. But the announcement from government did include everyone with blood cancer. And it did suggest staying indoors. But i suspect their concern is can you guarantee staying at least 6 feet away from others if you go out?
My GP organised for a district nurse to come and take my blood and my appointment has been turned to telephone only. Not sure if your GP would support that in your specific situation or not but they referred me stating that I was “housebound for clinical reasons”.
We have the generalised advice. For specific advise for yourself please do either telephone your GP or your specialists.
Hi Michelle,
Thanks for your message. It’s totally understandable that you’re feeling a bit confused. Firstly, I hope you’re doing well and looking after yourself during this confusing and difficult time.
The NHS have included those with MPNs in the high risk category, because it can not be said for certain that people in this category are not high-risk, due to Covid-19 being a new virus and therefore not enough is known about it yet. For this reason, we recommend you follow the advice provided by us and the government around shielding yourself for the next 12 weeks.
As you know however, people’s clinical circumstances are very individual and so your treatment team should be able to give you more tailored advice around your individual circumstances. Are you able to get in touch with them over the phone to talk it through, if you havent already?
With regard to your questions around blood tests in April, it’s totally understandable you have questions around this. As it says on the Bloodwise web page on Covid-19, “The advice to stay home and away from other people does not apply to any cancer treatment you need to have. Continuing your cancer treatment is a priority. Talk to your healthcare team if you are worried about going to hospital for treatment.”
Our recommendation would be to contact your hospital to ensure that this appointment should still be going ahead, are you ok to do this Michelle?
My husband has PV and hes on aspirin…he is also confused as to what to do!! We have decided that’s as hes a postman that he will shield himself for the 12 weeks.
But want he really want is some definite answers some say it’s a blood cancer others dont, hes 37 and feels like a fraud as he is otherwise healthy.
Hi a great big welcome to our community forum. I actually saw our postman today, at a distance, and thought to myself that his job must mean he has to interact with a lot of people and touch a lot of places where so many others have touched, so it sounds as if your husband is doing the right thing and his employer appreciates that. As for your medical questions queries perhaps those are questions for a member of his medical team. How are you doing because this forum is here to support us all and the support line details are above, I know I am definitely more anxious, Take lots of care
Welcome to the forum! Really difficult time for many isn’t it. If you are looking for specific advice I suggest you try calling your hospital team. Do you have a clinical nurse specialist helpline? If not maybe your GP can help. Of course now the government has asked everyone to mostly stay at home anyway.
Hi @Kell5 I’m sorry to hear you and your husband are confused as to what to do, it’s totally understandable as it’s such a worrying and uncertain time for everyone!
It’s good to hear that your husband has chosen to shield himself for 12 weeks. There are some uncertainties in the clinical community about whether certain groups of patients are at a higher risk or not, such as people with MPNs. Coronavirus is a new virus, and we can’t say for sure that these people are definitely not at a higher risk. This is why the NHS does include people with MPNs in the higher risk group outlined above. The guidance for people within this high risk group includes staying at home (shielding yourself) for 12 weeks.
As Erica and Adrian have said, it’s really advisable that you or your husband gets in touch with his healthcare team if you need further clarity or guidance, as they are best placed to provide information tailored to his individual circumstances due to their understanding of his current health and medical history.
Please do let us know if you want to chat this through further!
Take care, Alice
I’m having a brain fog moment - what does mpn stand for please?
No worries @MissP143! It means Myeloproliferative neoplasms - here’s our information page on them - https://bloodwise.org.uk/info-support/myeloproliferative-neoplasms
My lovely friend has just had the 'phone call telling her the results of her recent monthly blood. The numbers are good enough for her to embark on the next course (her 62nd!) of chemo (Lenalidomide) which she takes orally. Her consultation routine is a bi-monthly checkover by the consultant preceded by blood and urine tests and then upstairs to pharmacy to collect 2 months worth of the medication and one month later she has a blood test at our local GP surgery. Bless them (the Macmillan Renton Unit at Hereford County) can see the problem A 76 years old with myeloma should NOT be visiting a hospital and then are working out ways of checking her over and dispensing the medication without her having to enter the petri dish that hospitals can be. Coronavirus has not led them to forget other patients. And yes, we are taking the 12 week total isolation demand very seriously indeed.
Thank you for posting this, people’s experiences are so valuable for us all. I think whilst we are all isolating we all need to support each other and that can be partly through this forum. Don’t forget the support line details are above. How are you both holding up emotionally?
Thanks @dickielex for sharing this! It’s good to hear that your friend’s results are good enough for her to embark on her next course of treatment, we really hope this goes as well as it can for her! As Erica says, other people’s experiences are so valuable. I also think it will help others to read this as it’ll be reassuring for people to know that there are measures that many hospitals and clinics are taking to keep patients safe!
Hi Alice, I know mpns are complex and we are often having different treatments. I’m finding that I’m getting conflicting advice from different sources. I have Pv take aspirin hydrox and increasing venesection. I’ve read that underlying health conditions can also increase your risk to covid 19. I take 4 antihypertensives currently. Can you clarify what advice myself and others with mpns should be following in relation to shielding. Many thanks
hi @Jackgirl10 I hope you are doing? it’s so understandable to feel concerned, especially when you feel you are getting conflicting advice. Where Bloodwise stands, our current advice around the 12 week self-isolation period would apply to people living with PV. It also applies to people undergoing any form of chemotherapy such as; hydroxycarbamide. Am I right in thinking this is what you are on @Jackgirl10? We would also of course, encourage people to also speak to the healthcare team for specific and tailored advice to their individual circumstance, particularly if they have other underlying health condition. Hope this helps?
Hi @Jackgirl10 welcome to our community forum, I think we will all be needing to support each other during these uncertain, scary time. The Bloodwise support line is also free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will try to get back to you within one working day. The wonderful people on the support line are obviously extra busy at this time. I definitely think I will need the support on this forum whilst isolating. I cannot help with medical questions but I hope @SuBloodcancerUK has helped. Please keep us posted on how you are and how you are feeling.
Hi, I’ve just joined the forum so not really sure what I’m doing so I hope this reaches you all!
I have an MPN, ET JAK2 pos and I take hydroxycarbamide everyday and I’m 59. I’m on the MPN Voice forum and the contradictory advice coming out from consultants regarding the 12 week shielding is worrying. Some are saying we should, in line with Government advice, others are saying we are no more at risk than anyone else.
We are all feeling confused and perhaps a little angry at the lack of consistency.
I phoned my CNS who stated that ET is not a cancer so I’m not at risk! I then emailed my consultant and he came straight back and said that whilst under normal circumstances I wouldn’t be at risk, because ET is a blood cancer and therefore by definition falls into the high risk category, I am considered high risk! This shows the inconsistent advice even within the same department!
Also on MPN Voice, some have had letters and some have not, so does anyone know who is generating them?
Any advice or help would be much appreciated.
Thanks
Ian
I have end stage myelofibrosis and am on ruxolitinib. I haven’t received a text or a letter regarding being in the vulnerable group for COVID-19. My GP surgery say they cannot help because the letter is from NHS England. Can anyone advise me please how I can get the letter? Thank you.
Hi, you have joined our community forum at just the right time, I know I will need reliable information and the support of everyone on here. The Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will try and get back to you within one working day. You will find several confused, anxious and scared posts with people being given conflicting advice. I am in isolation for 12 weeks as so many others are on this site, some have received the NHS letter, others haven’t at this point. Stay safe and please keep posting what is going on for you.
Hi Willow, welcome to our community forum. There are a lot of people on this community forum asking the same questions about the letters. I believe they are still being sent out from NHS England, I believe it is a waiting game. I am isolating for the 12 weeks, as are many others on this site. Don’t forget what your body has been through medically, emotionally and practically so your immune system ( I have not got medical knowledge) might be compromised. The Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will try to get back to you within one working day. The main thing is that you stay safe and keep posting how you are we are all here to support each other.