Moderator: Steering Committee
- Posts: 1
- Joined: 26 Oct 2013 11:30
- Location: Limousin, France
I've left it a bit late to get any advice as I've procrastinated for ages about posting on the forum! However, I'm 72 and have been living in France for 14 years. Three years ago I was referred to the haematology department of Limoges Hospital. I thought this was completely unnecessary as there was absolutely nothing wrong with me apart from slightly lower WBC. I had the usual barrage of blood tests and, on the second appointment, a bone marrow biopsy. Repeat appointments at 6 monthly intervals (blood test every 3 months). After the second bone marrow biopsy I was told that I had MDS (or SMD here in France which looks as if you have a sadomasochistic disease). I mentioned to my husband that we should make a note of the name and look it up on the Internet. No need, we have a booklet for you!! We trotted happily off into the July sunshine. At last, it was just a syndrome. I suppose it was like the cartoon puppy waving to his friends and boasting that he was going to the vets to be 'tutored'! Once I'd read the booklet I realised that maybe this was something a little more serious. I was RAEB 1 and low risk so, no worries. This year I have progressed to RAEB 2. I asked what the prognosis was and was told that I had about 3 1/2 years left. A bit of a shock as I still don't feel at all ill. Red blood count is fine but platelets low. I was asked if I would like to consider Vidaza and that it only worked for 20-30% of people. I've read just about everything that there is on the Internet about the treatment and possible side effects. I'm a very positive person and I'm determined that life will go on normally. I have my little bottle of Evening Primrose oil ready. Presume that I'll be given something to counteract nausea so, all ready for the ambulance/taxi that will collect me at 7.30am tomorrow (5 November). It's an hour's journey to the hospital and anyone diagnosed with ALD (affection longue dureé) benefits from free transport. I'm told that the first appointment will be about 4 hours long and subsequent injections will be given by a nurse who will come to our house.
If you have any advice for me it would be most welcome. I'm heading into the unknown!!
- Posts: 11
- Joined: 06 Jul 2011 17:48
I hope that your visit to the hospital for your first Vidaza injection went well. Like you, I am being treated in France (Boulogne sur Mer) for SMD. Although , in the early stages of treatment, Vidaza was one of the drugs tried on me, I failed to respond to it, along with Neorecormon so I'm afraid I cannot give you any info on it's possible outcome/side-effects. However, I took part in a trial of Revlimid which turned out to be very effective in my case. 'Say Hello and General Messages' 'Revlimid Trial in France' will give you the story.
This posting is just to give you some encouragement and support on your treatment in France. Like you I am ALD and get any treatment/prescriptions without charge provided they are linked to my illness. Likewise transport to/from the hospital is also free, although I prefer to use my own car - I'm so pleased to be able to do so! The French system of hospital treatment has been faultless in all my dealings with it, although I did try, without success, to get a glass of wine with my meals!! Maybe you'll have better luck.
Anyway I wish you a successful outcome to your Vidaza treatment and keep smiling.
Geoff (M) age 77. Living in France, diagnosed in 2006. After being successfully treated with Revlimid between 2010 and 2015 when it ceased to have any beneficial effect is now back to regular blood tranfusions whilst a new course of treatment is sought.
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