Hi fellow MPNers, I hope you're all safe and well in these crazy times!
I'm scared - and angry! I live in France and I haven't seen my haem since the beginning of the first lockdown - March! He diagnosed me over the phone and I haven't even had a phone consultation since (although, to be fair, I would prefer to avoid pidgin French-English phone conversations , anyway). I've sent him several emails (thank God for Google Translate) and had to really chase him up recently for another prescription for Hydrea.
I only noticed tonight, after receiving my latest blood test results online, the words 'forte [strong] macrocytose'. I immediately went back through my previous results, did some research and found anisocytosis had progressed to 'light' macrocytosis about July and has got progressively worse. I've sent my haem another email but don't anticipate a prompt reply.
Has anyone else been down this road? I presume it's a result of the Hydrea, as I'm sure I don't have a B12 deficiency and am not anaemic, I eat a varied and healthy diet and don't drink or smoke. I haven't been able to establish whether its dangerous and needs immediate attention. Can anyone help with that, please?
I would love to see an MPN specialist but I am certainly not in a position to pay to see one (although cancer care is free over here - not sure about wanting another opinion, though) and couldn't at the moment anyway, with a second lockdown now in full swing.
Any help/advice would be gratefully received, although I am useless with abbreviations, as many French medical abbreviations differ from the English ones and I just end up so confused. Many thanks.
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Fernsong
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Firstly, it must be a tad tougher to deal w/ when the linguistics make communication, let's say far from being clear & concise... That situation in itself could be enough to increase one's anxiety levels alone...
According to the Mayo Clinic, 'Macrocytosis' can be caused by any number of variables, I.e:
What causes enlarged red blood cells (macrocytosis)?
Answer From Rajiv K. Pruthi, M.B.B.S.
Macrocytosis is a term used to describe red blood cells that are larger than normal. Also known as megalocytosis or macrocythemia, this condition typically causes no signs or symptoms and is usually detected incidentally on routine blood tests.
Macrocytosis isn't a specific disease, but it may indicate an underlying problem that requires medical evaluation. Common causes of macrocytosis include:
Vitamin B-12 deficiency
Folate deficiency
Liver disease
Alcoholism
Hypothyroidism
A side effect of certain medications, such as those used to treat cancer, seizures and autoimmune disorders
Increased red blood cell production by the bone marrow to correct anemia, for example, after blood loss
An underlying bone marrow cancer called myelodysplastic syndrome
If you have macrocytosis, blood tests can help determine its cause. In some cases, it may be necessary to remove a sample of your bone marrow — the spongy tissue inside your bones — for testing.
Management of macrocytosis consists of finding and treating the underlying cause. In the case of vitamin B-12 or folate deficiency, treatment may include diet modification and dietary supplements or injections. If the underlying cause is resulting in severe anemia, you might need a blood transfusion.
Having cited all of that, it might be that the HU is causing you to suffer a tad more from anemia (?) Taking some supplements might help too... But perhaps a better way to progress is to receive a Referral Letter to an MPN Specialist in the UK, (where you'll be able to better understand & communicate w/ your doctors to alleviate any distress that 'Not-knowing' can cause...
Anicytosis, and having irregular shaped (& larger blood cells), is part of a common issue w/ having an MPN. However, having clearer communications w/ your medical team seems to be the real issue here, if you do not mind my speculating...
Perhaps also message Maz, and ask her if she could recommend a MPN specialist in France that might be able to assist you, or failing that, do a ZOOM w/ Prof. Harrison etc (?)
Not sure where you are in France. I spent a few years living in the very rural Massif Central.
France has amazing health services- probably ranks especially for cancer as the best in the world. Try this organization -alte smp- for French MPN patients - they may be able to recommend a specialist. The site is in French and English. Also might be worth trying your généraliste.
Hi Fernsong. I to have a B12 deficiency which I understand from my haematologist and many on this forum is caused by a combination of Hydroxycarbamide and ET. I now take a supplement of B12 and according to my blood results all is well my B12 is back to normal so try not to worry just concentrate on staying well.
Large blood cells are an expected result of taking Hydrea. Red blood cells turn over in 4 months, so once you start Hydrea you would expect the average size to steadily increase. And that was my experience. My specialist told me that's how he could tell I was taking my medication.
There are multiple citations regarding this in the literature.
"Hydroxyurea, an agent now commonly used to decrease the number of vaso-occlusive pain crises in patients with sickle cell disease, interferes with DNA synthesis, causing macrocytosis by which compliance with therapy may be monitored."
So the discussion to have is whether the benefits of HU outweigh the adverse effects. Per the American Society of Health System Pharmacists "Hydroxyurea is a highly toxic medication with a low therapeutic index." What this means is that toxic effects are common at therapeutic doses, though not everyone experiences them. You have to work with your care team ti figure out if the benefits are worth the adverse effects. We do not know enough about your situation to give you meaningful feedback. The good news is that there are other treatment options if you need to discontinue the HU.
The only doc in France I know of with MPN expertise is Dr. Jean-Jacques Kiladjian. Surely there are more. Regardless - I hope you can find some way to get to see a MPN Specialist.
Meanwhile, here are some resources you may find helpful.
Hello Fernsong, I note from the info that Socrates8 has sent you that one of the causes of macro utopia can be liver disease. I am on 500mg daily of Hydroxycarbamide for ET JAK2+ and my last few blood tests have shown high numbers in my liver function test. My Practice Nurse at GP's picked this up, not Haematology. I think this is caused by the Hydrea. What is your liver function like do you know? I'm in Yorkshire but can't see Haematologist either. Hope you manage to get advice from someone soon. I love France having had many holidays there but it must be difficult communicating with Doctors even if you speak French. Best wishes. Fran
Sorry....predictive text concocted new word "macrotopia" in case you think I'm odd!
Whereabouts in France are you? I see an MPN specialist and luckily he speaks English. You can get a referral from your médecin généraliste, my specialist doesn’t take private patients.
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P.s. my last consultation was on the phone, but he is always available for me to email.
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Slightly disconcerting review
Hydrea ? Fatty Liver
Saw my Haematologist yesterday 
New here!
Not diagnosed
