Hello to you inspirational lot

[Holly]

My lovely Dad was diagnosed with MDS last year and has been through the mill a bit. His MDS progressed in December and despite my constant enquiries re:Aza, he was started on cytarabine. He only managed 2 cycles, with 3 admissions and his counts wouldn't recover. He's now transfusion dependent and totally fed up with such frequent hospital visits/stays. After my constant nagging the consultant prescribed Aza, which I thought was great. But he's only 4 days in to his first cycle and feels shocking! I feel so responsible for pushing him into it. His injection sites are very sore and bruised ( despite evening prim oil), he's shattered, which I wonder if the ondansatron may make worse, has no thirst or appetite and is very stiff. I know Aza can only be effective if stayed with and I really believe in it. Do the side effects improve at all with time?Any advice, or suggestions about this would be gratefully received.

Warmest wishes to you all.

Holly

[Jayne]

Dear Holly

I am unfortunately able to help you with regards to your questions but I just wanted to welcome you to the forum and say 'helloooo'.

I do think it is wonderful that you are involved in your Dad's illness and have researched his options. Don't be too hard on yourself, you want what is best for your Dad and if the doctors didn't agree they wouldn't have given the medication. So firstly, be kind to yourself!

I do hope that by now your Dad has started to pick up.
Love and best wishes to you both

Jayne xxx

[Sarah Reakes]

Dear Holly,

Welcome to our Forum. You sound such a loving and caring daughter and as Jayne says, don't be hard on yourself as it is out of love and concern for your Dad that you have expressed these concerns to his Specialists. It can be as difficult being the caring relative as it is to be the patient, sometimes worse, because I think relatives feel so helpless, but rest assured just being there at our sides means the world to us.

I suggest you contact Sophie, Patient Liaison whose contact details are on the Home Page who may be able to offer you some advice regarding the treatment your Father is on. I don't know where you and/or Father are located and which hospital he is receiving treatment, but Sophie will be able to advise you on whether getting a second opinion at one of the six MDS Centres of Excellence within the UK may be an option you could follow if you still have concerns regarding your Father's treatment.

As you no doubt know MDS is a very complex blood disorder with so many sub-groups, and risk levels, and we are all very different, and there are all sorts of treatments available based on clinical trials but there are often varying medical opinions on the advocacy and timing of some of the treatments.

I hope your Father starts to respond to this treatment and that he starts to feel better in himself soon, and also please take care of yourself and try not to worry too much. Keep in touch.

Kind Regards

Sarah

[davidmiller]

Dear Holly I am sorry to hear that your father has been diagnosed with MDS and is having problems with his Vidaza treatment. A routine blood test in March 2011 showed some irregularity with my blood and in July 2011 I was referred to a consultant haematologist who very soon diagnosed MDS with an IPSS score of 2.0 which immediately justified treatment with Vidaza and my first cycle of treatment started on 5th Sept 2011. I completed my 19th cycle 2 weeks ago and although it is working to hold back the progression of the MDS (shown by regular bone marrow biopsies) it does play havoc with our immune system (haemaglobin, platelets and neutrophlis) I have so far avoided any other treatments e.g. transfusions and I am feeling very well .Regarding the side effects, the injections do cause soreness but in my case by the Thursday of the second week that wears off. I don't bother with any cream but one of my fellow patients does find that using an ice back does take away some of the soreness. It is important that he takes all of the other medication - for nausea, gout, fungal infections,mouth ulcers, shingles, stomach upsets and in particular constipation. Tell him to hang in there.
Best wishes to you and your father from David Miller

[davidmiller]

Dear Holly. Further to my earlier message today, if you feel that your father needs a second opinion, I know of someone in the Bristol area who sought this by contacting Prof. Vyas at Churchill Hospital Oxford and obtained treatment there. He is the expert for this part of the world, Thames Valley, and my case was referred to him by my consultant when I was first diagnosed.
If you need any further info just post another note. Best wishes David Miller.

[chris]

Hi Holly

None of this is easy is it but you shouldn't feel responsible for being the cause of your Dad's current difficulties - as Jayne says, the doctors would not prescribe such an (expensive!!) drug as Aza if they don't think it is appropriate and there's a good chance of it working for him. I hope also you have taken on board what Sarah says and understand what your care means to your Dad. If you search this Forum (click on Search icon on top right of page) for postings on Azacitidine or Vidaza, you will read lots of experiences. David's experience is a beacon of hope but this drug is not right for everybody and only your Dad can decide if the downsides can be tolerated in order to see if improvements will be forthcoming. It certainly seems to be the case that blood counts get worse before they get better and it isn't an easy drug to take because of the current mode of delivery being injections into the stomach. People seem to have differing tolerances to this or maybe there are better ways to administer i.e. specialist nurse and experience may be a factor? It's very early days. Yes, maybe the anti-nausea drug has other effects - best to ask about these - the more drugs you have to take the harder it is to attribute blame!!

Hoping things get better for your Dad.

Best wishes

Chris