I recently saw a person on the news who had brain cancer and was deriding the NHS for not having any new medicines to treat cancers, but only using the ones that had been around for years. It got me wondering if any other countries use alternative or newer drugs other than hydroxycarbamide or Anagrelide for blood cancer. Does anyone have any information on this subject?
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My consultant told me some time ago, that there is a drug that would most definitely help me with my burning/itching caused by Polycythaemia vera (PV). She is not allowed to prescribe it. Sorry but I don’t remember the name of the drug.
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Thanks for that. I know the NHS can only prescribe what is allowed under the NICE regulations, but I wonder what is available out there in the rest of the world.
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Hi @Chris1 @oleconchi I will copy this to the Blood Cancer UK nurse advisors for you @BloodCancerUK_Nurses for you just in case they can add anything.
Ok. Thanks. I am just researching as much as I can. Knowledge is power, and I just want to know what else is available.
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An issue is that most research/trials don’t take on all blood cancers. In order to get funding it needs to resonate with whomever is providing the funding. The rarer the condition less publicity it gets the less interest it gets taken on.
Trials are often a postcode lottery and all about a narrower window and your own awareness as well as your medical team being aware of the trial also. There is also an element of accountability should it make things worse or doesn’t help.
Other countries have different regulations and maybe begging for human trials to take up their research. I guess in most cases it’s word of mouth.
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Hi Chris 1,
Treatment for Blood Cancer is an ever moving subject and as we understand more of the genome getting bigger. Blood Cancer is non defined generic name.
I have a Lymphoma. There are I believe about 60 variants of those alone. Throw in the Leukaemia’s and others and the Alchamists have a big job on.
As said by others under the NHS treatments are vetted by NICE. My key treatment Ibrutinib isn’t approved by NICE for my condition so I’m on a trial supported by UCL/CRUK/Drug company.
I had another BC back in 1984 and I’m still here. Industrial chemicals and radiotherapy then is a totally different experience to my current bio targeted therapy. That said if what therapies we have if its the best for us then stick with it.
Stay strong.
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