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Campaign for Abiraterone

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User
Posted 30 Mar 2020 at 18:27

I have recently begun a petition to ask the NHS to provide abiraterone (Zytiga) for men with newly diagnosed metastatic prostate cancer because chemotherapy is not an option during the Covid-19 pandemic. At the moment it is only available for men whose hormone therapy ceases to be effective. To access this hormone treatment privately, costs in the region of £4K per month ongoing.

Full details are included in my petition which is attached. Your support for this campaign would be fantastic so please sign and pass on to as many people as you think appropriate. 

Many, many thanks

Stuart

 

http://chng.it/5Y7vHFPgvh

User
Posted 31 Mar 2020 at 08:01

I wouldn’t have started a petition if I didn’t think it worth it! It was suggested by my consultant as the NHS is not providing it free of charge to early diagnosed patients.

Edited by member 03 Apr 2020 at 07:56  | Reason: Update/clarification

User
Posted 30 Mar 2020 at 20:18
Done
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User
Posted 30 Mar 2020 at 20:18
Done
User
Posted 30 Mar 2020 at 21:38

I live in Italy I attend 2 hospitals one in Parma (one of the largest hospitals in Italy) the other in Borgotaro. Both are in Emilia-Romagna which is a red zone under the present disaster. They are totally dedicated to treating the virus, with the exception that they are continuing to treat chemotherapy patients. Lucky for me, as I had my 10th chemo session 2 weeks ago and due another in a weeks time and a Zometa infusion on Wednesday.

Stu

PS.   My oncologist had no hesitation in giving me Zytiga and Enzalutmide when he felt that I needed them. 

Edited by member 30 Mar 2020 at 21:51  | Reason: Not specified

User
Posted 30 Mar 2020 at 22:54
Not sure how useful a petition is in these circumstances - your onco already has the flexibility to give you Abiraterone if s/he thinks it is appropriate so it seems it is either your onco or your local NHS Trust that is blocking it.

Keep in mind though that Abi carries similar risks to more common types of chemo, particularly in relation to infection, so perhaps the middle of a pandemic is not the best time to be starting it?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Mar 2020 at 08:01

I wouldn’t have started a petition if I didn’t think it worth it! It was suggested by my consultant as the NHS is not providing it free of charge to early diagnosed patients.

Edited by member 03 Apr 2020 at 07:56  | Reason: Update/clarification

User
Posted 03 Apr 2020 at 08:03

Just an update to say that I have now got 900 supporters to my petition; if you feel that you can also support my cause, please add your name.

Following on from previous conversation, my oncologist advised that by taking abiraterone your immunity is indeed compromised, but not as severely as chemotherapy. 

User
Posted 28 Apr 2020 at 23:06

Hi Lyn my husband is likely to start arbiraterone next week. Do you know anymore about the increased risk with infection. Thanks! 

Edited by member 28 Apr 2020 at 23:07  | Reason: Not specified

User
Posted 28 Apr 2020 at 23:56

Hi Sally, it increases the risk of any infection but most commonly, UTIs. Some doctors recommend that you keep a thermometer in the house as you would with any other kind of chemotherapy and if there are signs of infection - raised temperature, etc - seek medical advice rather than wait to see if it gets better.

Macmillan advice on abi side effects / risks is short & sweet - https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/abiraterone

Also keep an eye out for signs of oedema or heart problems, both of which are common side effects.

I assume he is taking prednisolone with the Abi, this also increases the risk of infections - particularly shingles, measles, etc. I guess being in lockdown will reduce the risk of infection quite significantly - every cloud and all that :-/

Edited by member 29 Apr 2020 at 10:35  | Reason: to activate hyperlink

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Apr 2020 at 07:55

Hi Sally

I am very interested to hear that he has been offered Abiraterone. At present my healthcare trust will not offer it on the NHS for early Prostate cancer. Can you give me any details please of how this was able to be prescribed?

User
Posted 29 Apr 2020 at 08:19

Thanks Lyn - really useful

User
Posted 29 Apr 2020 at 08:23

Hi - this isn’t early Arbiraterone. It is three and a half years since my husband was diagnosed and he has had chemo and zoladex which is now not working. (He wasn’t able to have Arbiraterone before now.) 

User
Posted 29 Apr 2020 at 11:40
Stubief, I'm a little puzzled about why you'd want the drug at an early stage. As you know, all cancer drugs only work for a limited time before the cancer adapts to defeat them, so as long as HT is still working, oncologists prefer to keep other options in reserve to use after the cancer becomes resistant to HT. Aren't you throwing away a treatment option for later in the disease's progression by having it as an early treatment?

Best wishes,

Chris

User
Posted 29 Apr 2020 at 12:14

Hi Cheshire Chris - I think the latest research suggests that having Arbiraterone early can improve outcomes - but it hasn’t been approved by NICE on that basis at the moment. 

 
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