My dad’s cancer treatment suddenly halted. re NICE guidelines

KJDisney

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https : // petition.parliament.uk/petitions/319308

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Fund Cancer Drugs Fund immunotherapy drugs to extend NICE’s 2 year limit

A few years ago my Dad was diagnosed with bladder cancer, the chemo nearly killed him and he was given only a few weeks to live. 

He was then fortunate enough to be put on a new type of treatment called Immunotherapy. This resulted in the cancer regressing and the disease stabilising to a point of him being able to resume a normal as possible quality of life. 

However, this all changed in December 2019 when we were devastated to find out that the treatment is only funded for 2 years and it was stopped, right before he thought he was going for his next treatment.  Not long after, the horrible disease returned resulting in my Dad having to have intensive radiation during lockdown. 

It seems both unethical and traumatic for cancer patients, that funding for such treatments ends when the drug is clearly working. We are therefore asking NICE to extend funding for such patients beyond 2 years or to fund further treatment if the disease returns.

He is not the only person this is happening to and it affects not only the patients but family and friends too. We would like to bring this to people's attention as it could affect any of us at any time during our lifetime. This awful disease does not discriminate.

If I could pull one thing off using social media in my lifetime it would be for this petition to become a success. Please sign the petition and like and share this status. 

Thanks in advance,

unforeseen

If its BCG then if it hasn't been successful (cancer in remission) after 2 years then MDT must consider radiotherapy followed by radical cystectomy.  The evidence available says that if not successful in in getting a cancer free result after 2 years then it's not going to happen. 

This has always been the case, covid or no covid.


(I start my BCG treatment in October) 

MalMonroe

unforeseen said:

If its BCG then if it hasn't been successful (cancer in remission) after 2 years then MDT must consider radiotherapy followed by radical cystectomy.  The evidence available says that if not successful in in getting a cancer free result after 2 years then it's not going to happen. 

This has always been the case, covid or no covid.


(I start my BCG treatment in October) 

Sorry to hear that you need to have BCG treatment but the immunotherapy was actually successful for this person's dad and has now been stopped. Which really doesn't seem right, at all. It's nothing to do with covid. His treatment was stopped in December, before lockdown began.

MalMonroe

I've signed and will also add the link : https : // petition.parliament.uk/petitions/319308

It's outrageous when treatment that is working is withdrawn. I'm so sorry to hear this. Your poor Dad.  

I assume you have posted on Facebook and other social media? I hope so, this really does need many more signatures and lots of publicity. 

Good luck. This really does need sorting out.

MalMonroe

Posting that link again so that people may click on it :  https://petition.parliament.uk/petitions/319308

Rather than copy and paste, I hope it's successful this time!

unforeseen

MalMonroe said:

I've signed and will also add the link : https : // petition.parliament.uk/petitions/319308

It's outrageous when treatment that is working is withdrawn. I'm so sorry to hear this. Your poor Dad.  

I assume you have posted on Facebook and other social media? I hope so, this really does need many more signatures and lots of publicity. 

Good luck. This really does need sorting out

Apologies to KjDisney for answering without reading the petition.
Unfortunately it is a clinical trial that only has a finite life with an intended aim. This is the big problem with these trials in that they are meant as a fact finding tool and not an ongoing solution.
The decision to continue will be based on the overall efficacy of the drug across the whole cohort

JamoLew

Whilst there may have been some benefit from BCG for this person - the overall evidence is that it is only beneficial for a maximum 1-3 years.
Petitions are all well and good, but you really need to do a lot more research rather than try and get policy changed around one single instance
I work very closely to this field and do have access to RTTQA information

KJDisney

Thank you for everyone who has signed. 
My dad’s partner is a researcher/scientist and works on cancer treatment research. They have studied the rules and guidelines, and previous petition on a similar subject. 
The treatment was successful in terms of stopping growth and shrinking swollen lymph nodes. 
Covid has nothing to do with it? Not sure where that assumption has come from?

KJDisney

As it states “It seems unethical and mentally damaging for cancer patients that funding for such treatments ends when the drug is clearly working. We are therefore asking NICE to extend funding for such patients or to fund further treatment if the disease returns.”
It’s not just about his case, this is for anyone in similar circumstances 

KJDisney

JamoLew said:

Whilst there may have been some benefit from BCG for this person - the overall evidence is that it is only beneficial for a maximum 1-3 years.
Petitions are all well and good, but you really need to do a lot more research rather than try and get policy changed around one single instance
I work very closely to this field and do have access to RTTQA information

Maybe you know my dad’s partner? Her name is on the petition, she has worked on many research papers 

JamoLew

Sorry but no i don't - am more on the Radiotherapy side of treatments
Have you discussed with the clinician -- some of your comments are acting as "flags" for me.
Don't want to speculate or offer clinical advice