Is there anyone from europe?

[elena italy]

Hi i’m Elena From Firenze Italy- My father was dx wih a -5q mds last 2006, he tok revlimid but unsuccessfull. i always read the foundation forum and i’d like to find someone from europe to have a confrontation about therapies here.There isn’t any similar website in italy and any relationship between patients. You are yourself ( and your family if lucky) the doctor and the disease, this is the approach in italy. Any support from people like you talking about your disease and helping each other with his own experience.Wish to have some replies.

[Joan2438]

Elena,

I can[‘t remember if I have seen anyone else from Europe on this forum on not. There is another forum for people with MDS as well as AA. It is http://www.marrowforums.org. I know there are people from Europe on it. Good luck. Joan

[elena italy]

thank you Joan, i’ll cheack it out.

[mucka]

Hi Elena,
I am from Galway, Ireland. Delighted to talk with you. This is a brilliant forum and while I have only ever submitted one question I have been an ardent reader for years.
I have RARS dx 1993 RBC Transfusions every 2-3 weeks. Erythropoetin was tried twice – no improvement. Ferritin 3500- on Exjade. Have just finished 5 cycles of Vidaza – no change. My Haemotologist is talking about starting me on Erythropoetin combined with GCSF.
I have other health problems also but find that MDS can be a very lonely type ailment to have – this probably comes from not knowing other people with this illness. My medical team are very good but it is very important to have personal support from family or/and close friends who understand the patient and the ailment.I am very lucky in that regard. I do not know how I acquired MDS but it is now part of my life. If you want to ask me anything I will do my best to answer.

If there are any other people from Ireland I would love to talk to them.

[Anne G]

Hi Elena

I am from Scotland. I have had RCMD for 5yrs and I am still on a "wait and see approach". Wait until the MDS gets worse and have a BMT.

I too like Mucka I have good family and friends to support me. However, my work colleagues do not know(except my in line manager) about my illness. It is difficult enough to deal with this on a daily basis by yourself and trying to overcome your own fears and emotions(as well as your families) without having to cope with other peoples reactions towards you and your disease. Their Idea of coping with it is by changing how they react towards you as an individual or cannot cope with their own emotions.

This is the only forum i have found that gives me the information in such depth from people who care and have a wealth of knowledge. For that I say a BIG THANK YOU to the people on this forum over the years for their help.

There are a lot of people who visit this forum not just from Europe but globally. The reasons for that is, like you me and everyone out there in Europe we do not have anything like this site which is open and honest that wishes to discuss there treatments and strategies for wellness.

Anne

[celebrations]

Hi, I am Bergit from Germany, just attended the European MDS-Forum im March with MDS-experts from GB (Dr. Bowen) and Italy (Dr. Santini). The forum was organiszed by the MDS-Foundation (europeam branch is localized in London) and the Forum took place in Germany.
I profited a lot.
In the subline you can see my MDS-career so far…
Greetings to everybody, Bergit

[Mary4Mike]

Birgit,

Are you taking Valproic acid alone or with another chemotherapy drug? Do you have blasts? How long did it take before you were TX free?

We would be interested in hearing what you learned at the MDS forum—-anything new?

Thanks,
Mary

[elenaitaly]

Hi everybody i’m very glad that my post had so much replies from Europe and i thank you for your help and for starting this new "european chapter" of mds patients. This is important beacause in europe there is a different approach to the available treatment and it’s is helpful for all of us to know about these differences. i ask you only to have a little patience for my poor english i’ll try to do my best!!!
Also my father now is on Exjade and iron is lower now but the drug is bad for stomach and appetite.He tried Revlimid having much hope in it being a -5qmds but he had no benefit and stopped it last november also becasue he had in 2007 a stroke and has to be carefull with therapies for risk of cerebral emorragies. now he is transfusion dependent and has 1/2 per week to mantain the hemoglobin level on 8-9.he is retired and has not the job problem but his quality of life is very very poor, always breathless always tired and he goes very little out of home only for hospital. He is followed in a excellence center in Florence ( doc. Valeria Santini is well known and you can see her webcast in the last symposium in Patras) but at the moment he is not ready to start any new therapy. I’m thinking about Vidaza….
Please let’s go on wrting on this forum i’m happy to have news from you. And I want to tell to Mucka that Ireland is so beautiful !!!

[elenaitaly]

hallo Birgit
my father is followed by Doctor valeria Santini and she is always in touch with Giagounidis from Duisburg.What about your therapies ? Have you tried revlimid or vidaza? The approach from Germany, as i was told by prof santini is that the use of lenalidomide is at a stop phase becasue of the risk of leukemic progression of the disease….let me know what about it you know

[Elena]

Ciao, I’m Elena from Vicenza – Italy. How’s your father? I’m sorry, but I don’t know italian forums about MDS.
My father, 77 y.o. dx RARS in 1996, he tried Eritropoietina (Procrit)without results, since 2000 to 2008 tx with 1 unit RB each week. He had 460 unit of RB till now. So I know chelation terapy (Desferal) quite well. Exjade gave him troubles, so last year he returned to deferoxamina. Now his ferritina is 1500.
Delighted to answer your questions (in Italian if possible). Ciao

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