Father recently diagnosed

[Will Wilkinson]

My 73 year old father has recently been diagnosed with RAEB 2 (normal marrow cytogenetics) his counts are:

WBC 0.8x10^9/L
Hb 10.1g/dL
Platelets 327x10^9/L
Neutrophils 0.3x10^9/L

We're currently waiting for Vidaza to be approved for use in the UK - his specialist wants to start him on it as soon as possible, but getting approval's not easy

He had an appointment today where he was hoping for a transfusion but didn't receive one, just a got a prescription for Tavanic, Aciclovir and Sporanox to help keep infections at bay.

He used to be very fit and active, as recently as the summer before last he was walking in the Alps and able to cover 12 miles of mountainous terrain in a day, now he can only walk a mile at a fairly slow pace.

I'm rather concerned that he's not receiving all the treatment he needs and wondering what to do next. I've offered to fund Vidaza for as long as I can, but this has not been mentioned as a possibility, and I doubt I could afford it for long given the high cost of treatment.

I'd just like some advice and support at the moment, beginning to feel a little lost and disheartened with the fairly rapid decline and lack of action.

Will

[Neil Cuadra]

Hello, Will. I hope you and your family will be able to connect with other MDS patients from the U.K.

I'm glad to hear about your father's excellent prior fitness. General health can make a big difference for MDS patients. Walking a mile may be a letdown for him, but many MDS patients would be quite proud of themselves to walk a mile with low red cell counts. I guess it's all relative to what you are used to doing.

Was your father hoping to get a transfusion because he was feeling poorly or because he knew his counts were low? While it's nice to have all the energy you are used to having, it's also beneficial to keep the number of transfusions down if you can. Many patients do fine living with somewhat depressed counts. Whether or not he gets transfusions, the risk of infections from having a low white count will be a concern. I hope you are able to talk directly with your father's doctor so you and your father can both get all of your questions answered and understand the treatment plan.

Do you know your father's blast count and his IPSS classification (Intermediate-1, Intermediate-2, High risk)? The European Commission approval of Vidaza was for Intermediate-2 and High risk cases.

[Will Wilkinson]

Thanks for the encouraging reply - it was much needed. My father was hoping to get the transfusion as he's been feeling more tired lately and finding it harder to get around - but as you say it's relative to his prior high fitness. I'm hoping to get to speak to his doctor at some point, but I live over 120 miles away and work full time so it's not easy. I'll try to get more diagnostic information next time he has a hospital visit, from what I've seen so far I suspect he's probably Intermediate-2 as he's also being considered for the AML 16 clinical trial if he can't get Vidaza which is his doctor's preferred treatment. We're fairly hopeful that funding will be available from the NHS for Vidaza from April but would like to have him start treatment as soon as possible. He's being treated at The Christie in Manchester by Dr Mike Dennis, the director of Haematology, so I'm happy that he's at good hospital with an appropriate specialist. It's just the NHS red tape that's making it hard for Dr Dennis to provide the treatment he feels would be most appropriate.

[Birgitta-A]

Hi Will,
As Neil wrote a good performance status is a prognostic good sign in MDS - your fathers Hb is almost OK and his platelets excellent .

The problem is the low white blood cells including the low neutrophils. As you write Tavanic, Aciclovir and Sporanox help him to fight different kinds of infections. I think he should have Neupogen or a similar drug that increases his low white blood cells.

In Sweden we are waiting for Vidaza too. They have the drug in our “drug book” but it is still not available. We have been able to get Vidaza on licence during many years – is that not a possibility in UK ?
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen 2 injections/week for low white blood cells, asymptomatic

[Will Wilkinson]

Hi Birgitta,

Thanks for the extra info - I've phoned my Father and let him know about Neupogen and he's going to speak to his doctor on Monday to ask if it's an option. I've also asked him to ask for his blast count and IPSS classification and to enquire if Vidaza could be prescribed on licence as a private prescription - I can fund it until April when he hopes to obtain it on the NHS.

Regards and best wishes

Will

[Birgitta-A]

Hi Will,
Here is info about Neupogen: http://www.netdoctor.co.uk/medicines/100001828.html. UK was very late in approving Neupogen - perhaps that's why they have not prescribed that drug to your father.

Then Vidaza is available in Sweden since Feb 21 2009 but still not "free" – the cost is 329 GBP per day for the drug. It should be given in hospitals so we don’t pay the drug in any case. Hope it will come soon in UK too!
Kind regards
Birgitta-A
No adverse effects of Neupogen 2 injections at home/week since neutropenic fever (sepsis) Sept 2007. No infections for 18 months (knock on wood) - I live like I have neutropenia to be on the safe side.

[Mike Conlon]

Originally Posted by Will Wilkinson

My 73 year old father has recently been diagnosed with RAEB 2 (normal marrow cytogenetics) his counts are:

WBC 0.8x10^9/L
Hb 10.1g/dL
Platelets 327x10^9/L
Neutrophils 0.3x10^9/L

We're currently waiting for Vidaza to be approved for use in the UK - his specialist wants to start him on it as soon as possible, but getting approval's not easy

He had an appointment today where he was hoping for a transfusion but didn't receive one, just a got a prescription for Tavanic, Aciclovir and Sporanox to help keep infections at bay.

He used to be very fit and active, as recently as the summer before last he was walking in the Alps and able to cover 12 miles of mountainous terrain in a day, now he can only walk a mile at a fairly slow pace.

I'm rather concerned that he's not receiving all the treatment he needs and wondering what to do next. I've offered to fund Vidaza for as long as I can, but this has not been mentioned as a possibility, and I doubt I could afford it for long given the high cost of treatment.

I'd just like some advice and support at the moment, beginning to feel a little lost and disheartened with the fairly rapid decline and lack of action.

Will

Not familiar with the process in UK being from the states. I was dx at age 69 and treated with Dacogen which was only approved in the U.S. in 2006. See my signature for details. This is quite expensive, but Medicare pays over 99% of the Cost.