MPN PATIENTS & COVID–19 - ADVICE & YOU TUBE

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MPN PATIENTS & COVID–19 - ADVICE & YOU TUBE

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Morning everyone,

Well by now everyone should be aware that the most at risk of contracting & becoming seriously ill from this COVID–19 pandemic are, you guessed it... The Elderly, all those with a chronic illness...

However, there is still no particular advising for Australian people with an MPN, other than to apply all of the General Precautions.

Hence, this information comes from sources abroad, including:

* MPN VOICE

* MPN RESEARCH FOUNDATION in the USA



Here are the General Guidelines provided for MPN Patients from the UK:
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 a 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 follow 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.
This information comes from the USA:


We at MPNRF have been fielding many questions from the patient community about the Covid-19, or Coronavirus, situation. While information is still coming in and what we all know continues to emerge, Dr. Scherber suggested that she could answer for the public some questions she has received from patients in her practice. We have included them below along with other resources from trusted health sources. The MPN research foundation and us as MPN physicians will continue to monitor and keep you updated as best we can should this change. To make sure you receive updates register for our email and newsletter at no charge by clicking here.

FAQS WITH DR. SCHERBER

Am I most susceptible to coronavirus because I have an MPN?

We don’t know yet, so it is best to show appropriate caution and follow guidelines from the CDC and WHO about hygiene and avoiding large gatherings. The data to help answer the questions as to whether coronavirus is going to be a huge problem or more of a nuisance for most patients with MPN is just not there. Although most folks that have severe COVID19 virus injections have serious underlying comorbid health issues—even to us physicians they really haven’t been told the details what most of those are. Most cases that I have heard of suggest that underlying lung or heart disease seems to be the most problematic. It is true that we know that some viral infections can be more frequent and/or more severe in those with MPN-- more in MF, somewhat more in PV, and less in ET. However, if we take the flu (which is also a viral infection) as an example, I have only known a few MF patients ever have
the flu severe enough to be hospitalized and only one that I can think of that has passed from it. I have known no ET or PV patients who have ever needed to be hospitalized from the flu. Thus, it stands to reason that most patients will be okay.

I have a job that I work with a lot of people, such as working at a school. Should I not go to work?

It makes sense to be reasonably cautious when possible. I would take every allowable precaution that your workplace (with the help of your physician) will allow you. For those with jobs that may put them directly in touch with large groups of people such as those who work as a teacher, in healthcare, education, etc. , I have in the past offered to help them and their employer to find a reasonable accommodation for the job, just as phoning in for meetings or events, moving their workspace to more secluded spot, and allowing work from home at times. Hand hygiene, “social distancing,” and staying away from those that have symptoms is the best idea regardless of your infection risk. I also urge you to talk with your physician. If you and your doctor agree that you are at higher risk, they are able to help you with the paperwork needed to file such as (Family & Medical Leave Act) FLMA or state unemployment benefits.

Should I still go to my doctor’s visit? Aren’t hospitals the worst place to be?

I would recommend calling your doctor’s office first. The policy about who is to come in may have changed in light of Covid and/or they may have some questions to ask you to help keep you and the other patients safe. At our center - University of Texas San Antonio Medical Center-, we are implementing protocols to screen people when they check-in for their visit for possible coronavirus symptoms and see them in specific rooms or locations in order to keep other individuals safe.

Availability of medicines that people with MPN use

MPNRF has checked with several suppliers of medicines used by people living with an MPN and none have reported to us that they would be impacted by the disruption that has been caused by Covid-19. We will continue to alert the community should this change.


Best wishes everyone and take good care of each other out there...

Steve
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Re: MPN PATIENTS & COVID–19 - ADVICE & YOU TUBE

Post by AnnieFJ »

Thanks Steve - very helpful info. For me - I need to be more careful due to the recent chemo for the NHL. I generally feel well, and am very fortunate to be working from home - redeployed to the Vic govt COVID-19 response as it turns out!
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Re: MPN PATIENTS & COVID–19 - ADVICE & YOU TUBE

Post by MPN-MATE Admin »

Annie,

I am so glad to hear that you are feeling well after your recent chemotherapy, and yes... you really must take great care of yourself and especially so after such a torrid time. Plenty of ice-blocks is what my dad use have afterwards... He said they helped him quite a bit... 8-)

Please be gentle with yourself until you are fully recovered, and please don't overburden yourself either... There are plenty of others to take up the slack, when required... 8-)

Be happy & well Annie...

Best wishes

Steve

PS. By the way Annie... are you happy w/ your new picture, or would you perhaps prefer a fairy penguin? ;-)
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Re: MPN PATIENTS & COVID–19 - ADVICE & YOU TUBE

Post by AnnieFJ »

Very happy with the pic Steve! (I wouldn't want to jinx our lovely little penguins by putting them next to me and my dodgy blood...!!)🐧😆

I found this advice reassuring on the MPN front. My lymphoma is a trickier situation, as my B lymphocytes are low from the chemo, and these are what fight viruses. The particular disease I have is characterised by elevated IgM paraprotein, and the COVID-19 serum antibody test looks for IgM. Confusing to my non medical brain - the IWMF (international body for Waldenstrom's) says having elevated IgM is not protective - even though people who've recovered from COVID-19 have this. I'm sure a lot of WM patients were looking for a silver lining, but alas! The prophylactic anti viral (Vaclovir) that I took for nearly a year while on treatment is also ineffective against coronaviruses.

One potential treatment I'm aware of is an old malaria drug called Hydroxychloroquine which is now used to control rheumatoid arthritis. Apparently - people who are on this medication are now finding it to be in short supply, as stock is held back - reportedly as a first line treatment for health workers who contract the virus.

When I went into PMC for my blood test today they were temperature testing everyone at the door. One channel for staff, another for patients and visitors. They are moving to telehealth at pace and I have my next consultant appointment on 20/4 via video link. A friend of mine who is on IVIG chemotherapy for myeloma has been trained to administer her own at home - with coaching via video link!
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Re: MPN PATIENTS & COVID–19 - ADVICE & YOU TUBE

Post by MPN-MATE Admin »

Hey again Annie... 8-)

I am most relieved to learn that you are happy with the pic... Always happy to change it at any time nonetheless... All you need do is ask, or even provide me with the one that you would like is ok too.. . 8-)

Very interesting to learn more about you and how you must manage your own condition... Unfortunately, for me, I was not able to have gleaned more about my late father's NHL while he was alive, (he simply chose never to discuss it). However, I am not so sure that he would have understood a great deal about it all, who really does?

Also interesting to learn what you said about the prophylactic anti viral (Valciclovir). I have been taking 500mg daily ever since I started Ruxolitinib. It may well have protected me from most viral infections during that time, (touch wood), I have never even had a cold in those almost Four (4) years... (?)

It seems that right now everyone is looking for the goose that might produce the 'golden vaccine egg', and they are trying everything thus far except toasted hot-cross buns for repurposing. It is quite an extensive list, as I am beginning to perceive it, in any event...

They have even started using Ruxolitinib would you believe... ?

Personally, I have never taken an anti-flu injection in my life... and I am not terribly keen to start now... My dear old mum has been taking them for many years, and I note that she pretty much always displays some flu-like symptoms every year... (?)

Annie, I have also just been reading an article on why wearing a face mask might be a better idea than the converse, and I shall Post it shortly... If ever a made to order marketing demand has ever been produced, this will be a doozy I am sure... I found a little Indian guy in a service station selling exposed surgical masks at $2 a pop... I simply pointed out to him, that they are no longer any good because they were exposed to the environment etc... Sadly, our ethic for 'money before people' continues in this crazy life... :shock: :?

I have also started doing tele-video consults w/ my GP & specialist, and my next is due in a week's time. However, I too am also still attending my pathologist collector for my blood tests... If things remain about the same in my results I will simply suggest that I leave further testing for 2 months intervals, for the present time, unless there is a perceived urgency of course...

I recently located a Clinical Trial for myself which I am hoping to participate in the coming months. It is at St Vincent's in the city (Sydney), and it might have some advantages for better management of my stubbornly ascending platelets... (?) I will make a Post for the recruitment purposes once we come a little closer...

In any event Annie, please take extra good care of yourself in these adventurous days ahead... 8-)

Best wishes to you & yours...

Steve
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Re: MPN PATIENTS & COVID–19 - ADVICE & YOU TUBE

Post by AnnieFJ »

I sailed through last winter on the Vaclovir Steve, I was also on Respirim Forte as a prophylactic antibiotic and never had as much as a sniffle! When I finally came off them in Feb this year - I got a pretty minor cold the first week of March.

There's no policy at Peter Mac about Fluvax while on treatment, some clinicians do some don't. In the end I had mine, but not until late June. My haematologist had an issue with whether it would work at all with the B Cell therapy I was having.

This year there was no hesitation on the part of my treatment team. My husband and my 92 year old mum beat me to it though - all 3 of us were out of the blocks early!!

The trial at St V's Sydney sounds promising...good luck with all that. I remember Kate Burbury saying the CALR MPNs have very high platelet levels, it's just so frustrating when you want to get on with your life! My platelets are now just above normal but by red cells and hematacrit are stubbornly unmoved. I heard today that I need to increase the Hydrea to 1500 (from 1000) and I'm a bit worried about toxicity Katie mentioned. I might have a talk to him about PEG IFN when I see him next Monday.
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Re: MPN PATIENTS & COVID–19 - ADVICE & YOU TUBE

Post by MPN-MATE Admin »

Evening again Annie...

Yes, definitely worth enquiring into Pegasys... HU is such nasty stuff... That is just another reason why these Fundraisers are all so vital to MPNs... We need more and better treatment options, in my view...

BTW, I have mentally made my decision in the last few days to again re-embark upon my cycling epic around Australia... Now for 2021, as there is no chance now of completing it this year with all that has transpired...However, that simply means so much more to do... :-)

I am now looking to acquire my next bike because my old one has seen better days... Try as I may to keep it functional etc...

Diet, intermittent fasting and cycling ever greater distances, is not all fun and games I can assure you... But underneath it all... I know I am benefitting in so many ways, and I hope in some small ways that it also helps a few others too...

Best wishes Annie...

Steve
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Re: MPN PATIENTS & COVID–19 - ADVICE & YOU TUBE

Post by AnnieFJ »

Keep on pedalling Steve 🚴 Inspirational stuff! I've acquired a new young rescue dog in January - she's been good motivation to get out on walks! We had a long period with old dogs who were happy with a slow trundle around the block - it's quite a change!!
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Re: MPN PATIENTS & COVID–19 - ADVICE & YOU TUBE

Post by MPN-MATE Admin »

Morning .... :D

That sounds like excellent fun Annie... 8-)

Hope you have some nice walking weather shortly...

Have an awesome day...

Steve :D

PS. The hunt for a new bike has begun... 8-)
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