[jen06]

Many thanks for all your replies, it is really appreciated and to be honest I did not realise it could be so serious. My dad never tells the docs how ill he is feeling and puts on a brave act in front of them most of them time. I think his main worry is that they will take him off the Vidaza and then he will not have any other real options. They have already said he is not a suitable candidate for a BMT because of his age (66) and his previous health history. We live in the UK and I dont think there are so many treatments available. He is actually on a clinical trial at Kings College in London for the Vidaza, so it is all relatively new here. When he had the blood clots he was treated at our local hospital (not Kings) and it was them who put him on the Coumadin, therefore I wonder if there is a lack of communication between the two hospitals. My dad is under Dr. Mufti at Kings, who is very high up, but I do not think my dad sees him on a regular basis. My dad is at Kings at the mo. (goes in daily as an outpatient) and is due home on Tuesday. I think I will phone the hospital today and hopefully they can get him all checked out whilst he is up there.
It is very hard though, as my dad would not be happy if he knew I was doing this, and I am a little worried about doing more harm than good! I will keep you all posted and thanks again for your help.

[jen06]

Many thanks for your reply, sorry I took so long getting back to you, but computer decided to have a breakdown! My dad is now out of hospital, stayed in about a week and has been put on coumadin. He seems to be having some episodes with it at the mo. (shakes and shivers), but am not sure if the coumadin is what is causing it. Many thanks for your reply though, it was very helpful.

[jen06]

Many thanks for your replies. The doctors seem quite happy with his blood results, not sure what his HGB is but will try and find out tomorrow. I do know that he has not needed any transfusions as yet though. He did tell the docs that he felt tired and sick during his last session of Vidaza, and they tested for diabetes but the tests were all normal. Just wondered if there anything you can do to help bring your energy levels up, as he really seems at an all time low at the moment.

[jen06]

We live in the UK also and my dad was diagonosed with MDS last summer. I think his classification is RAEB but am not 100% sure. He is on a clinical trial at Kings college in London for Vidaza and is now coming up to his 6th month of treatment. He is under Dr. Mufti, and so far results have been quite good. At the moment he has 1 weeks treatment, and then a 3 week break. I think this type of treatment is relatively new here in the UK and so we are not really sure what the future holds, but fingers crossed everything is okay at the mo. Patsy, if there are any questions you wanted to ask, please feel free. Wishing you husand all the best.

[jen06]

Hi Russ,
Many thanks for your quick reply – this really helps. Yes, my dad has had a couple of biopsy’s, first when he was diagnosed and then about a month ago. It was actully the low platelet count that they found initially (I think it was as low as 12 at the time). We live in the UK so the treatment is a bit different over here. Vidaza is not yet approved apart from being used in a clinical trial at Kings College in London, which is the programme he is on. We are hoping it will be approved shortly. I will look back on the posts and try and glean some more info! Thanks again for your help, and wishing you good luck in the future also.

[jen06]

Many thanks for all the info and the replies – it really does help to know he is not out there on his own. He was supposed to start his first round on Vidaza on Tuesday, but the hospital phoned and said they didn’t have a bed available (he is staying in as an in patient), so we are waiting and hopefully it will be anyday now. They have warned him that this first round could be a bit scary! I have no idea what his counts are but will hopefully be able to find out from his nurses once he starts his treatment, and will keep a record as Neil says in his post. Good luck to you all, keeping my fingers crossed!
Jen

[jen06]

Many thanks for your quick replies. It is really comforting to know of others in similar situations and that you are not on your own. I now understand about the statistics possibly being outdated. It seems like they are developing new treatments all the time, so I guess it will be a while before they have up to date statistics – anyway I am not going to look at these anymore!
Maureen, I am glad that your dad is responding well to the Vidaza, there is such little known about this drug in the UK, so it is great to read of other people’s responses, especially when they are positive.
Patti – thanks very much for your info and advice. To be honest, I didn’t even realise that you can try to fight this disease with natural medicine, and it is comforting to know there are other options available. Hope your MIL continues to do well following this route.
G – My father’s doctor is also Prof Mufti. I do not know why your mother was not offered Vidaza. My dad had to go to Kings 2 weeks ago for tests and then back again yesterday for the results,which is when they told him he was suitable for the Vidaza trial. I do not know his blood/BMB results, but will try to find out for you if I can. They did tell him if he was not a suitable candidate, he would be offered alternative treatment, but did not go into detail. From what I can make out, they have caught his disease at the onset, so I dont know if this has anything to do with it. What sort of treatment is your mum getting?
Also, I will try and get his diet improved as it is not particulary healthy at the mo! I do not know about the Bristol approach – what is this?

Thanks again for all your help, I really do appreciate it. I am away tomorrow for six days, so do not think I am being rude and ignoring posts!
many thanks
Jen

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