Consultants in France

[Ellipops]

Have recently moved to south west France. Seeing a consultant at Tarbes hospital in October (PV diagnosed may this year). Don’t know if this doctor has the appropriate speciality for this condition. Does anyone know how to find specialist MPN Consultants in France please? Or in fact know of a consultant within this area. Many thanks.

[crapaud]

I don’t know anything about the Tarbes region, the best specialists are at Saint Louis hospital in Paris.

There is an association ALTE- SMP which may be of help.

Good luck.

Crapaud

[Ellipops in reply to crapaud]

Thank you for the information

[Inca]

Bonjour Ellipops,

I was diagnosed here S W Fr 11 yrs ago.We are Lot et Garronne.

Have had the same consultant for all of that time and very well cared for.

Blood tests every month at home ,same nurse for 11 yrs.

I know things are very different from U K ,the French as with everything else have their own ideas !!

Worry not ,your Medicin General will advise you,health care here is second to none....you need your 'Carte Vitale' now Brexit is progressing.

Good Luck,you not need to worry at all.

[Inca in reply to Inca]

Sorry meant you have no need to worry....sometimes mix up my phrasing !!!!

[Ellipops in reply to Inca]

Thank you Inca. I appreciate your reply ( in very good English)!

[Inca in reply to Ellipops]

Well I am English,just when I have been speaking my (not marvellous!)

French,as I was a few hrs before,my mind muddles up...good old P V & getting tired....You are quite near another English lady on site.I come to a Toulouse hospital regularly just at the mo,I believe they have a hospital that has a Heamo dept. Not too far for you maybe.The one I come to is not for my P V ,don't know if they have a good Heamo dept.Good Luck in your search.Sally

[Anouchka in reply to Inca]

My haematologist in. Carcassonne works very closely with Toulouse hospital Haemo Dept. He is also an Oncologist. Saw my bloods after GP’s referral and knew what he was looking at and further necessary tests on-site confirmed PV.

I ai to ask him if he knows Kiladjian (see below Hunter’s recommendation), just to check further that I in good hands as it were….

[Inca in reply to Anouchka]

I think he is the same French expert that spoke at a Forum in U K ,can’t remember which one it’s a few yrs ago pre Covid.He had his own ideas & caused some amusement not agreeing with others & quickly leaving to catch his train! Anyway that is typically French & I must say my care here is excellent.The team at my hospital have just received an award for excellence,so I feel all is ok there.

By the way my bloods & plaquetaire are slowly augmenting since my Jakavi was reduced....still get the dreaded fatigue tho,after all these years I still do not pace myself to avoid it.Best to you Sally.

[crapaud in reply to Inca]

Although I agree that health care here (France) is very good, MPNs are not common to all GPs so make sure your’s are on the ball and don’t hesitate to get a second opinion (my GP missed my MDS/MF for years before a friend - a Doctor- raised the alarm , once my GP realised his mistake he pulled all the strings through!!).

Best of luck

[Inca in reply to crapaud]

Hi ,

Think I was lucky,was in U K & Holland (I was exhibiting )had been feeling very tired before & during,In U K I saw two G Ps who ignored my red eyes,hands & fatigue,both said what did I expect at my age to be still working etc!!!!Came back to Fr,went to my GP. In the tiny village near where we live who took one look at me ,rang Urgence at nearest hospital,I was in, they were unable to take blood ,so thick H C T 80 ,diagnosed in a few hours.The hospital has a blood departement......my G P saved my life. Still looks after me. You are right tho G Ps in general do not recognise M P Ns,getting better now perhaps everywhere.I had an accident some yrs ago where my daughter has the farm, U K head injury,

Para medics were great ,but nearest hospital had no idea what M P N was !!!We take all my hospital & blood tests with us when we visit...

So much translating for my hubby ...I was unconcious......laugh about it now but at the time not funny.

The MP N forums are so good,when we manage to get to them ,I take details to my consultant ,he is always interested to know.

Best to you Crapaud (by the way ,often have your namesake wandering into the house & continually falling in the piscine!Lots of rescues!!!

[crapaud in reply to Inca]

As you may guess Crapaud is a nickname - my sons still insist that if I were really a ´Prince ´then the kiss from their mother (my French wife!!) should have transformed me by now because undoubtedly she is a ´Princess’!!

[Inca in reply to crapaud]

One morning I was still in bed sipping tea ,one of those 'fatigue'times,thru the open bedroom door came a huge Crapaud !

My friend did suggest that I should have kissed it ,then I would have had a Prince instead of my husband......I think tho that the story refers to a frog....so I picked up the Crapaud and took him outside!Lucky you,a French wife,no language problems.

Best to you,I must say Crapaud is not really a complimentary name!

Keep safe ,you and family.

Sally

[Spirit123 in reply to Inca]

We used to live in Lauzun lot et Garonne for eight years. I was diagnosed when moved back to UK. If you take Hydroxycarbamide you need to keep out of the sun. Hope you find a good haematologist in your area. Maybe look for one in Agen area

[Inca in reply to Spirit123]

Yes ,my consultant is Agen,I was on Hydroxy for 9 yrs ,now on Ruxolitnib,Yes I keep out of the sun,much as poss,horses & dogs take me outside a lot obviously ,but I cover up.Thank you all the same.Best to you in UK,we normally come back often ......not this year tho,Keep safe,keep well.

[Spirit123 in reply to Inca]

I’m so glad to be in Devon 8 years in France was an experience but I prefer it here. My consultatant is in a Barnstaple . I’m ET jak2 positive

[Inca in reply to Spirit123]

Well ,well !We lived in Devon for 26 yrs...mid Devon.Bred our horses there in a lovely valley (or coombe) & a beautiful Devon long house in the Doomesday book.Many happy years,it just rains so much!!!We would not leave France now,tho have friends in Devon we see when back in U K....we are actually from North Yorkshire so go up there too .Not this year unfortunately. I am P V ,diagnosed here & well cared for,from GP to Consultant. Keep safe & Good Health to you.Sally.

[Spirit123 in reply to Inca]

Where are you living in Lot et Garonne?

[Inca in reply to Spirit123]

Hi Spirit ,We are between Agen & Villeneuve in lovely quiet countryside... We are quite isolated,but good neighbours across our field .Tiny village within 10 mins drive,so no need always to go into town. Fortunately this area has remained Covid free,tho there were lots of tourists as usual.I believe Devon is a 'safe' area too.Keep well and safe Best to you Sally

[Dovme]

Hi

I lived in France for a few years. Did a quick search You could try this National French MPN organization see link for advise

They have a contact address CONTACT

Adresse du siège :

ALTE-SMP

4 rue jules ferry

69360 SAINT-SYMPHORIEN D’OZON – FRANCE

[e-mail]

Tél : [phone] | Mobile : [phone]

alte-smp.org/wp/

[Inca in reply to Dovme]

Good info....tho I am very satisfied with my consultant in Agen,it is useful to have other possibilities,my man is semi retrait now ,just sees me & a few others.I dread that he leaves the hospital for good!!!So many Thanks.

Keep safe ,Sally

[hunter5582]

There is only one MPN Specialist, Dr. Jean-Jacques Kiladjian, listed in France on this website: mpnforum.com/list-hem./ . If you cannot see him, perhaps someone associated with his practice could help.

Broadly speaking, never hesitate to ask a doc about their level of experience with MPNs. Most docs, even hematologists, have little/no experience with MPNs. They are not in a position to provide optimal individualized care. you can also ask if a local hematologist is willing to work with a MPN specialist to manage your care. This is actually the approach I use and it works well.

Hope you find a suitable MPN-specialist doc.

[Inca in reply to hunter5582]

I know of him ,long way from S W FR tho ....Thanks for info ....My consultant here is a very knowledgeable man,always interested in forum s of M P N,that I take to him...have a knowledgeable G P also,count myself lucky.Best to you & keep safe .Sally

[Hidden]

The CHRU Brest, Bretagne, specialise in MPN’s, I was given the information by Dr Kiladjian’s secretary a few years ago and have been attending there since.

Too far for the o.p. but may help others.

[Inca in reply to Hidden]

Too far for me too,but interesting to know.Thanks for info.Keep safe & well.