FW: Advanced PCa Malecare Group from the UK - Treatment and progress update.

[Guest guest]



There is a cancer drug fund that should support abiraterone until 2014, we have time to campaign till then.

NICE do seem to play a let's try to get the price down game

B

FW: Advanced PCa Malecare Group from the UK - Treatment and progress update.

Unfortunate for and other patients in the UK, but supports my contention that “cost†to the government health system is the prominent concern in the UK, not the patient.

Chuck

Hi to you all

In view of the current postings about various reactions to Taxo and numbers of infusions to have I thought I would just update my current position.

My PSA shot up from 2 to 116 in three months from Dec.10 to Mar.11 having been pretty low and stable for the previous 18 months since diagnosis – (Gleeson 4+3 & tertiary 5, multiple met. spread but no pain) and taking the usual three monthly hormone injection (Triptolerin). Started Taxo Apr.11 on three weekly cycle and PSA reduced quickly to 22 after No.3 and then more slowly to 1.5 after No.7. After No.8 it rose to 1.6 and my ONC stopped it. Side effects were quite tolerable apart from tiredness and hair loss but coming off the prescribed steroids was quite awful (I have since learned that I came off them far too quickly so beware of this).

ONC then said play a waiting game but after six weeks PSA had jumped to 23. (Oct.11). Zytiga had then just been approved in the UK so I started on that in Nov.11 and am still on it. PSA has dropped to 8 and I have no side effects at all which is great. My hair has grown back but rather curly and wavy much to my family’s amusement and arm and leg etc. hair now sticks out like small bristles. I have been told that blood pressure rise and potassium levels need watching but both are fine as are my other blood markers. Unfortunately the drug regulating body in the UK (N.I.C.E.) have withdrawn government funding for Zytiga on the grounds that our National Health Service cannot afford the £3000 monthly cost so at the moment my private health insurance is picking up the tab. I do not know for how long Zytiga will be effective so I am keeping my fingers crossed – I also am back on steroids (only 2 prednisolone daily).

My excellent ONC reckons that MDV3100 will be approved in the UK by the end of 2012 and that, in conjunction with Zytiga, will continue to keep the beast back in its box.

I learn so much from this Group and try to maintain a really positive attitude, do some sensible exercises and have a good diet (principally as Dr. Jane Plant’s book) plus take a few supplements. For me the fear has been taken out of the equation thanks to the doughty fighters here describing their struggle in heartbreaking but inspiring detail. I realise that we cannot defeat the dreaded PCa yet but the advances coming down the medical pipeline give me some guarded hope for a few more years (the big 70 in three weeks).

With very best wishes.

=

[Guest guest]

Unfortunate for and other patients in the UK, but supports my contention that “cost†to the government health system is the prominent concern in the UK, not the patient. Chuck Hi to you all In view of the current postings about various reactions to Taxo and numbers of infusions to have I thought I would just update my current position. My PSA shot up from 2 to 116 in three months from Dec.10 to Mar.11 having been pretty low and stable for the previous 18 months since diagnosis – (Gleeson 4+3 & tertiary 5, multiple met. spread but no pain) and taking the usual three monthly hormone injection (Triptolerin). Started Taxo Apr.11 on three weekly cycle and PSA reduced quickly to 22 after No.3 and then more slowly to 1.5 after No.7. After No.8 it rose to 1.6 and my ONC stopped it. Side effects were quite tolerable apart from tiredness and hair loss but coming off the prescribed steroids was quite awful (I have since learned that I came off them far too quickly so beware of this). ONC then said play a waiting game but after six weeks PSA had jumped to 23. (Oct.11). Zytiga had then just been approved in the UK so I started on that in Nov.11 and am still on it. PSA has dropped to 8 and I have no side effects at all which is great. My hair has grown back but rather curly and wavy much to my family’s amusement and arm and leg etc. hair now sticks out like small bristles. I have been told that blood pressure rise and potassium levels need watching but both are fine as are my other blood markers. Unfortunately the drug regulating body in the UK (N.I.C.E.) have withdrawn government funding for Zytiga on the grounds that our National Health Service cannot afford the £3000 monthly cost so at the moment my private health insurance is picking up the tab. I do not know for how long Zytiga will be effective so I am keeping my fingers crossed – I also am back on steroids (only 2 prednisolone daily). My excellent ONC reckons that MDV3100 will be approved in the UK by the end of 2012 and that, in conjunction with Zytiga, will continue to keep the beast back in its box. I learn so much from this Group and try to maintain a really positive attitude, do some sensible exercises and have a good diet (principally as Dr. Jane Plant’s book) plus take a few supplements. For me the fear has been taken out of the equation thanks to the doughty fighters here describing their struggle in heartbreaking but inspiring detail. I realise that we cannot defeat the dreaded PCa yet but the advances coming down the medical pipeline give me some guarded hope for a few more years (the big 70 in three weeks). With very best wishes. =

[Guest guest]

Sorry, Chuck, but with the greatest respect that’s nonsense. Of course cost is a factor – no scheme has unlimited funds - but NICE works very hard to make recommendations based on value for money getting the best value for patients with the money available. That seems perfectly reasonable. They don’t always get it right which is why we are trying to persuade them to reconsider on Abiraterone.Bob From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Chuck MaackSent: 04 March 2012 16:58To: ProstateCancerSupport Subject: FW: Advanced PCa Malecare Group from the UK - Treatment and progress update. Unfortunate for and other patients in the UK, but supports my contention that “cost†to the government health system is the prominent concern in the UK, not the patient. Chuck Hi to you all In view of the current postings about various reactions to Taxo and numbers of infusions to have I thought I would just update my current position. My PSA shot up from 2 to 116 in three months from Dec.10 to Mar.11 having been pretty low and stable for the previous 18 months since diagnosis – (Gleeson 4+3 & tertiary 5, multiple met. spread but no pain) and taking the usual three monthly hormone injection (Triptolerin). Started Taxo Apr.11 on three weekly cycle and PSA reduced quickly to 22 after No.3 and then more slowly to 1.5 after No.7. After No.8 it rose to 1.6 and my ONC stopped it. Side effects were quite tolerable apart from tiredness and hair loss but coming off the prescribed steroids was quite awful (I have since learned that I came off them far too quickly so beware of this). ONC then said play a waiting game but after six weeks PSA had jumped to 23. (Oct.11). Zytiga had then just been approved in the UK so I started on that in Nov.11 and am still on it. PSA has dropped to 8 and I have no side effects at all which is great. My hair has grown back but rather curly and wavy much to my family’s amusement and arm and leg etc. hair now sticks out like small bristles. I have been told that blood pressure rise and potassium levels need watching but both are fine as are my other blood markers. Unfortunately the drug regulating body in the UK (N.I.C.E.) have withdrawn government funding for Zytiga on the grounds that our National Health Service cannot afford the £3000 monthly cost so at the moment my private health insurance is picking up the tab. I do not know for how long Zytiga will be effective so I am keeping my fingers crossed – I also am back on steroids (only 2 prednisolone daily). My excellent ONC reckons that MDV3100 will be approved in the UK by the end of 2012 and that, in conjunction with Zytiga, will continue to keep the beast back in its box. I learn so much from this Group and try to maintain a really positive attitude, do some sensible exercises and have a good diet (principally as Dr. Jane Plant’s book) plus take a few supplements. For me the fear has been taken out of the equation thanks to the doughty fighters here describing their struggle in heartbreaking but inspiring detail. I realise that we cannot defeat the dreaded PCa yet but the advances coming down the medical pipeline give me some guarded hope for a few more years (the big 70 in three weeks). With very best wishes. =

[Guest guest]



Another point is that in the UK we don't have any 'Co-Pay' for drugs as many schemes in the USA I understand have. My Spanish private health insurance is excellent bar the fact that it's 100% co-pay for drugs! The 'price' for premiums being only 110Euros per month with no other limits on treatment.

I have friends in UK who receive Viagra on request from the NHS for ED caused by for instance diabetes, with no charge other than the standard one-off prescription charge (last time I was in UK that was £7 I think - not sure of cost now). I would be interested to hear from any one in the UK if the NHS prescribes & funds the new daily 5mg Viagra or Cialis equivalent for post prostatectomy or radiation. Judging by the comments on this site it seems to be a constant battle with insurance companies for prostate cancer patients in the US to get the daily dose as part of their cover.

Spain

RE: FW: Advanced PCa Malecare Group from the UK - Treatment and progress update.

Sorry, Chuck, but with the greatest respect that’s nonsense. Of course cost is a factor – no scheme has unlimited funds - but NICE works very hard to make recommendations based on value for money getting the best value for patients with the money available. That seems perfectly reasonable. They don’t always get it right which is why we are trying to persuade them to reconsider on Abiraterone.

Bob

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Chuck MaackSent: 04 March 2012 16:58To: ProstateCancerSupport Subject: FW: Advanced PCa Malecare Group from the UK - Treatment and progress update.

Unfortunate for and other patients in the UK, but supports my contention that “cost†to the government health system is the prominent concern in the UK, not the patient.

Chuck

Hi to you all

In view of the current postings about various reactions to Taxo and numbers of infusions to have I thought I would just update my current position.

My PSA shot up from 2 to 116 in three months from Dec.10 to Mar.11 having been pretty low and stable for the previous 18 months since diagnosis – (Gleeson 4+3 & tertiary 5, multiple met. spread but no pain) and taking the usual three monthly hormone injection (Triptolerin). Started Taxo Apr.11 on three weekly cycle and PSA reduced quickly to 22 after No.3 and then more slowly to 1.5 after No.7. After No.8 it rose to 1.6 and my ONC stopped it. Side effects were quite tolerable apart from tiredness and hair loss but coming off the prescribed steroids was quite awful (I have since learned that I came off them far too quickly so beware of this).

ONC then said play a waiting game but after six weeks PSA had jumped to 23. (Oct.11). Zytiga had then just been approved in the UK so I started on that in Nov.11 and am still on it. PSA has dropped to 8 and I have no side effects at all which is great. My hair has grown back but rather curly and wavy much to my family’s amusement and arm and leg etc. hair now sticks out like small bristles. I have been told that blood pressure rise and potassium levels need watching but both are fine as are my other blood markers. Unfortunately the drug regulating body in the UK (N.I.C.E.) have withdrawn government funding for Zytiga on the grounds that our National Health Service cannot afford the £3000 monthly cost so at the moment my private health insurance is picking up the tab. I do not know for how long Zytiga will be effective so I am keeping my fingers crossed – I also am back on steroids (only 2 prednisolone daily).

My excellent ONC reckons that MDV3100 will be approved in the UK by the end of 2012 and that, in conjunction with Zytiga, will continue to keep the beast back in its box.

I learn so much from this Group and try to maintain a really positive attitude, do some sensible exercises and have a good diet (principally as Dr. Jane Plant’s book) plus take a few supplements. For me the fear has been taken out of the equation thanks to the doughty fighters here describing their struggle in heartbreaking but inspiring detail. I realise that we cannot defeat the dreaded PCa yet but the advances coming down the medical pipeline give me some guarded hope for a few more years (the big 70 in three weeks).

With very best wishes.

=