Hi folks, my first post! I was diagnosed MPN ET JAK2+ last August totally out of the blue after a routine blood test. I’d had no noticeable symptoms and felt fit and well, so it came as a total shock! My consultant was lovely and very reassuring although I think I could’ve coped better if the two ‘C’ words hadn’t been used ! (Cancer - gee thanks WHO for re categorising it from a ‘disorder’ a few years back! Chemo - strikes the fear of God into most people) was put on daily low dose aspirin and one Hydroxycarbamide 500mg per day and had regular blood tests and check ups. Platelet count started at around 950 and was down to mid ‘normal’ range last appointment. I’d felt good and was getting on with life, unaffected...once I’d got my head round the diagnosis of course 😊
Yesterday had routine check, platelet count risen to just over ‘normal’ but a jump of approx 250 from last check 6 weeks ago. Was asked if I’d missed any meds? No. Had any infections. No. Taking steroids. No. I mentioned I’d had some cold sores and mouth ulcers but the ulcers were associated with wearing an orthodontic brace for two years (recently removed) and then having been fitted with removable night-time retainers which had caused new ulcers.
I asked the million dollar question ....was at risk from Coronavirus, he replied “I could get it, you could get it!” Not helpful! I explained I meant at risk if I contracted Coronavirus he replied “yes because of the medication you are on but just take the normal precautions” ???!! So presume hand washing / general hygiene etc, contacting them if I have a high temperature? He didn’t explain anything, although I must stress this is the ‘locum’ who I now see, not my original consultant! He made more of saying I ‘must’ tell them if I get mouth ulcers as the hydroxycarbamide can cause them!?!
I have always, to date, been pretty robust and healthy but I’ve now gone from happy and getting on with life, to swaying from ‘this will be fine’ to being anxious and ‘will I end up in hospital seriously I’ll if I get Coronavirus?’ Anyone feel the same? Anyone have any advice?
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CooperS1
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welcome to the forum, we all understand how you are feeling about your diagnosis, and the words used, very scary, but please read the information we have on our website about the MPNs, I am sure it will help you, mpnvoice.org.uk
Now to answer your concerns about Coronavirus and people with MPNs and being on medication, I have posted information about this on our website you can read it here:
Hello CooperS1, I think lots of us are anxious about the Coronavirus but I do think that the links Maz has shared give us the best advice and reassurance because they are specific to our diseases.
Your diagnosis is relatively recent so you still have all that to deal with too. My ET JAK2 positve was diagnosed in 2001. I was on HU for many years and also used to suffer from mouth ulcers which cleared up on a lower dose. I could also avoid them by not eating tomatoes and other acidic foods.
When the classification was changed to neoplasm, our prescriptions became free, so I always console myself with that!
Thank you for your message Jennie, much appreciated.
I’d pretty much come to terms with my diagnosis, feeling fit and well...apart from the usual creaks and groans associated with ageing 😉
That was until this Coronavirus appeared! But the info Maz shared is very useful and has certainly put things into perspective.
I think as long as we, and others, continue to follow basic hygiene and look after ourselves and think of others too, and not adopt an ‘I’m alright a Jack’ attitude, we’ll cope 🤞🏻
Remember the condition you have, ET, hasn't been changed by the reclassification from "disorder" to
"cancer", its still ET.
The word cancer comes with a lot of baggage for you and those around you. The MPNVoice website has lots of information that you can use to remove some of your anxiety.
The word "chemotherapy" is also a loaded term but technically speaking it means treatment using chemicals. In that sense you could apply the term to any medication . The term came to be associated with cancer treatment in the 1960's to distinguish it from surgery or radiotherapy. Hydroxycarbamide is a type of chemotherapy but its not like the cancer treatments you routinely see in documentaries or dramas. Many people take hydroxycarbamide with few if any side effects.
As to Coronavirus there is not enough information to assess the risk to you as an individual but being "robust and healthcare" is a big advantage.
We are all following the advice issued for those with blood cancer & keeping our fingers crossed. We can't do much more unfortunately. The reclassification has been beneficial for some, it meant we could claim on our Critical Life insurance & pay our mortgage off so hubby could reduce his hours to help manage his fatigue. Unfortunately his employers weren't supportive so he now isn't working but not having a mortgage has allowed that not to be an issue & we get a lot more family time whereas before all he could do was work & sleep. So every cloud has a silver lining.
In regards to your cold sores, hubby takes Li - Lysing daily & no longer has cold sores hardly at all. Perhaps once/twice a year whereas he had one almost constantly. They are available from Holland and Barrett but I think you can get them from boots too.
I can only comment on your rise in platelets I’m afraid. At first diagnosis I was stable for about 6 months then my platelets rose every visit. It could mean you have an underlying infection which has happened to me. In addition or as well as that you may need your meds adjusting as was my case.
So it's not having these conditions that makes us vulnerable to Covid-19; it's the medications some of us are on. Luckily for me, I am only on aspirin at the moment and I would have thought that if the WBCs were fairly normal, we'd fight off any infections like any other healthy person.
Hi, yes those were my thoughts too...as I feel fine (famous last words!) and haven’t felt ‘ill’ / or had any side effects from the hydroxycarbamide/ or any symptoms from the disease, so would hope that I am pretty healthy otherwise. However, Covid -19 may be more of a concern to those who have this to a more debilitating degree?? It might have been helpful if my doc had explained it more fully! He’s supposed to be the expert after all....
Glad to hear the info Mazcd provided was reassuring. The COVID19 issue is scarier for those of us already managing a serious condition; however, what is really needed is just due caution and sensible. steps to protect yourself.
Regarding the "C" word, it can be a shock. I was diagnosed with ET over 30 years ago, back when it was still a "disorder." Nothing changed when the WHO changed the classification in 2008. My treatment was the same and my condition was identical. For me the ET progressed to PV about 7 years ago. That did change my treatment, but overall my life is the same (still good).
Hydroxyurea can compromise your immune system. Taking additional precautions around avoiding infections is just good sense, both for those on HU and everyone else. My hematology folks told me reduced immune response is involved in getting the oral ulcers. They are really annoying! Your doc is right about letting them know as these ulcers are a sign of HU toxicity. You should not make assumptions about why you are getting them as the cause is likely HU involved.
FYI - the best tx I found for the ulcers is a topical gel from PerioSciences called AO Provantage. It really does help.
My mouth ulcers were definitely associated with my orthodontic treatment i.e. the braces, which predated my treatment for ET and afterwards the rough edges of the removable retainers, as once sorted, the ulcers cleared up completely, and I’ve had none since. But I appreciate your explanation and will take note for the future.
Really glad to hear that. I used to get canker sores all the time when I was younger. Then I went nearly 20 years without any at all. That is until I went back on HU again the last time. I was getting both canker sores and ulcers (just raw holes inside the mouth). I also ended up with what looked like thrush. It turned into what was apparently leukoplakia. (Tongue was solid white all the way across). It all eventually went away when I discontinued the HU. This was all going on at sub-therapeutic doses. So as it turns out, I have turned HU-intolerant. Glad to hear that you are tolerating the HU without the same kind of problems.
CooperS1, deficiencies of B1, B2 , B6 and B12 may be a contributing factor in recurrent mouth ulcers. Vitamin B1 is dependent on enzymes created with magnesium so a deficiency of magnesium will be a factor for low B1. Magnesium is important for the body to deal with stress and MPN definitely is stressing the body. Check your diet for adequate Selenium. It's important for platelet health and is involved in other functions worth researching. It may also help the immune system against virus. A Brazil nut a day will work fine. If you have a dog, search on "canine Brazil nuts cancer". Vitamin C is important to oral and overall health and utilizing it in the liposomal form makes it more available and is easy on the mouth and stomach plus it's also a JAK2 inhibitor. Finally, research how your gut microbiome is linked to a healthy mouth.
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