Are MPN sufferers part of the At Risk Group?

[G1DRA]

So far I have not received an answer from the Medical Profession regarding the Coronavirus.

Are MPN sufferers to be included in the ‘At Risk’ group?

[Tico]

We are all in the dark at the moment. I think a lot of people on here have had conflicting advice off their haematologists regarding us being more at risk than the general population. Suppose we are ourselves the best judge. Keep well. Atb,tina.🤗

[G1DRA in reply to Tico]

Thank you for your reply. My Haematologist hasn’t responded to my question, which I left on his secretary’s answer machine.

I don’t wish to isolate for twelve weeks but I do feel that the “at risk” group described by the Government has never been clear.

[Mostew in reply to Tico]

Good to hear I’m not only one feeling at moment I can judge . Definitely not clear . I thought I was just pretending I would be fine and ignoring the fact I am more vulnerable !!

[Mymble in reply to Tico]

Hi - its so worrying not knowing whether we fit into the at risk group. I am trying not to worry too much, working from home and limiting contact but I have to admit it’s not just the ET/PV but the fact that as a result of these I have an enlarged spleen and liver, chronic portal vein thrombosis, portal hypertension and a gastric varix. I wonder where all that fits in. Apart from that I’m fit and healthy😆

[Mazcd Partner MPNVoice in reply to Mymble]

I have posted an update for everyone

healthunlocked.com/mpnvoice...

[Tico in reply to Mymble]

Hi Mymble, I completey understand, I also have other underlying health conditions but as I said we have to be our own judge. Then again some of us might have no choice but to go out due to circumstances or need. Keep well. Atb,tina.🤗

[charl17]

I don't see how the medical profession could have an answer for the mpn population. We are a small group with highly variable medical conditions and very different side effect profiles from our treatment. This is a new disease. If we are vulnerable to the flu we are probably vulnerable to coronavirus, which appears to have a higher mortality rate. And, of course, there is no vaccine yet.

Personally, I am doing what I know I should do to avoid the flu

[crapaud]

I had a sct 5yrs ago and did not expect to be at a higher level of risk. However my consultant informed me that I am at a higher risk Level and I must stay in confinement for my own good(ps I am living in France)

Keep smiling

[Tico in reply to crapaud]

🙂 And well.

[Otterfield]

While we all wait for the answer (Maz and the team are working on it), I will just share that I had normal flu about 5 years ago. I have ET and was on Hydroxycarbamide. I felt very ill but no more so than a "normal" person. I recovered normally after about ten days. Obviously this doesn't mean that Coronavirus would be the same but at least it showed that my immune system was fighting it well, and not significantly diminished by the drug.

[Tico in reply to Otterfield]

I also had flu and a chest infection in jan, 2015, 4 days after my mum died of a severe chest infection and sepsis. I was so ill I was hospitalised and put in isolation in critical care. When I left hospital it took me at least a couple of months to start getting my strengh back. Keep well,tina.🤗

[Otterfield in reply to Tico]

What a dreadful experience and so distressing so close losing your Mum so painfully. Stay safe in this crisis.

[mhos61 in reply to Tico]

What a harrowing time that must have been for you both physically and psychologically. I can’t think of anything worse than to lose someone so close to you under the circumstances that you describe.

Take special care at this time!

[Tico in reply to mhos61]

Thanks mary and you too.x

[piggie50]

Hi GIDRA,

Although we all have an MPN we are all different, on different meds and different underlying conditions. I think we need to wait for more information from Maz and MPN Voice.

However, I did manage to speak to a nurse from my haematologist unit yesterday. Basically, I understand a little more than I did before. As my bloods are fairly stable at the moment she advised that I am probably no more at risk of contracting the virus than the next person, however if I did get it it may be worse. She advised if my temperature raised to 38 to call the ward not 111 and they would decide whether I need to be admitted. Regarding the 12 week isolation she said that is my call and my decision to make. Advice is changing daily and I have a telephone consult with my Heam next Tuesday so this advice may change.

I must stress this is my personal story and yours may well be different.

Best wishes

Judy

[G1DRA in reply to piggie50]

Thank you for your reply. I agree that we are all different and things are changing rapidly. I’m currently self isolating and not if the over 70’s bracket and concerned that my Heme has decided not to reply.

Best Wishes.

[Hidden]

Hi

I attended Christies yesterday to see my specialist and he said I was at no further risk than anybody else, I have ET Jak2 taking only aspirin , and to continue going to work but obviously follow government guidelines.

As other people have mentioned it depends on the severity of the condition and what medication you are on.

I feel quite unwell this morning and now have to drag myself in to work and juggle childcare with my husband as of next Monday now the schools are closing.

Not much I can do though, I need money to pay bills, mortgage, food etc so just need to plod along x

[Igreyhound]

My hematologist in Beverly Hills told me we are all in the same boat!

So - even though I have PV I am not at any more risk than he is

He's actually an older gentleman...so I understand...

We must be careful and follow guidelines...be well everyone!

My heart is with you all!

[Trueblue8]

Spoke to my Haem nurse specialist this morning. First thing she said was that I don't have cancer(I have ET JAK2)! She said that I should just follow the general guidance. I explained that I was offered the flu jab a while ago at which point she slightly back tracked with the advice. She then further noticed, whilst obviously reading my notes, that I'm taking low dose chemotherapy medication (hydroxy). I'm now even more confused than ever. Bring back Brexit!!

[piggie50 in reply to Trueblue8]

Yes, the nurse that I spoke to said some hospitals don’t consider PV cancer?! I said the WHO re classified it in 2008 to a neoplasm, it was then that she said it’s my call if I isolate.

[Trueblue8 in reply to piggie50]

It's so confusing isn't it! I guess if we feel well generally then the natural reaction is to carry on as normal. The problem then is what happens if we do contract the virus. Hopefully we will soon get some definitive advice....

Thank you for your advice.

Stay safe

Ian x

[Hidden in reply to Trueblue8]

My haematologist said something similar that other factors come into play particularly heart conditions diabetes hypertension far more serious coupled with age. The problem is people want answers but this is all too new yet and people react differently. A person who has several conditions is not the same as someone who has one.

[Trueblue8 in reply to Hidden]

Thanks for your reply, it's much appreciated.

[Melaniem59]

I just got this back from my CNS at Guys

We will try to summarise some relevant information

1. Patients with a myeloproliferative neoplasm (ET, PV or myelofibrosis) who are on aspirin alone, blood thinning tablets (like warfarin, apixaban or rivaroxaban),

venesection alone or no treatment at all only need to follow the government's general advice (see link above) and are not considered high risk.

2. Patients over the age of 70 with an MPN, or any MPN patient with additional illnesses such as heart disease, high blood pressure or diabetes, are considered more

vulnerable and should follow the government's guidelines for vulnerable individuals (see link above).

3. Patients under 70 years of age who are on medications to control their blood count or their MPN like Hydroxycarbamide, Interferon, Anagrelide, Busulfan and

combinations are in a group where the situation is unclear and there is no clear evidence that they are high risk. But they should at the very least follow the

Government's general guidance.

4. Patients taking ruxolitinib regardless of their diagnosis may be at higher risk and are considered to be potentially more vulnerable. These patients should following

government advice for vulnerable individuals.

In addition

6. All patients should continue with their current medication because keeping good control of your MPN is an important priority.

7. While there have been some concerns that ibuprofen or similar drugs may make COVID-19 worse, there is no current suspicion that this is the case for aspirin.

Please note that this represents the collective opinions of MPN clinicians; MPN is not a simple Blood Cancer. The situation may change rapidly please check for updates and if you are not certain discuss with your clinical team but bear in mind the pressures that they will be under.

[piggie50]

Thanks for this Melanie, that’s very clear.

[mbr8076]

Hey there,

I contacted my hematologist’s office yesterday with that very question. The nurse called back and said the MPN does not make us more vulnerable but age being over 60 is a bigger factor. Also, and if on Hydroxyurea it makes someone mildly immunosuppressive. I am both categories. I have not self quarantined but am careful and not going into public as much. Be wise and keep safe<3