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Fears about the future and prognosis


catlady91

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My mum is thankfully doing well apart from the aches and pains of older age and kidney stones which she needs an op for. Mum has been NED since August 2020 (not including when they made a mistake and mistook pseudo progression from immunotherapy for true progression in Feb 2021). Mum was treated with chemo radiation followed by durvalumab. She completed 8/12 infusions for durvalumab but had to stop due to bad side effects including pneumonitis. 

When I have a bad day I research survival statistics. The NHS (British health system) recently posted an article saying the they will maie durvalumab available for regular use on the NHS. They said that it can improve survival for stage 3 lung cancer from 2.5 years to 5 years. 

I'm a bit confused as durvalumab has only been available for about five years so how do they know on average they have five years left? They also said on average durvalumab effects last for about 2.5 years but wouldn't that give someone about 3- 4 years including other treatments, not 5?? 

I'm worried that if my mum's cancer was to come back there wouldn't be many other treatment options apart from chemo. She wouldn't be able to have any more radiation. Chemo isn't a very good treatment and doesn't lead to long lasting remission. 

I researched if somebody can be retreated with immunotherapy but couldn't find any answers online. Can you be retreated with immunotherapy if the previous immunotherapy stops working? 

I fear about the future. I did read that 5 year survival with immunotherapy is 43% for people with stage 3 cancer which is a huge improvement and 33% are still NED after five years. It doesn't seem like a huge percentage but it's a massive improvement from what it was in the past. 

I really hope that my mum has way more than 5 years but I can't help thinking what if she doesn't have other options apart from chemo if the cancer were to return. 

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Catlady,

An answer to your statistics projection is indeed challenging. But, consider carefully the meaning of the word projection. That is what scientists and perhaps government officials and journalists are doing in your linked article. To facilitate understanding, I am using the definition of projection to mean: "an estimate of forecast of a future situation or trend based on a study of present ones."

My first dilemma with your question is the cited article does not give enough insight into the statistical method used to generate the survival projection. Without knowing the size of the population, the duration of the study, the "p" value of the projection, and a host of related factors, I can't challenge the projection nor comment on its validity. Perhaps someone has. It may be the NHS; it is likely not the person who wrote the article. If there is a statistical study with a projection, all the raw data is normally cited to allow folks to test validity. That is not to say this study's validity wasn't tested. Just that I can't independently verify validity. Often journalists or publicists fail to include all statistical assumptions and methods thinking most of the audience would be bored at that level of detail.

Then there is the question about the validity of all cancer survivor statistics, in particular the remark once made to me about 18 years ago: "I may be dead in 6 months." Instead of a lengthy discussion about that statement, you might want to review a piece I wrote on cancer statistical projections years ago, here. (Do listen to the essay cited in this piece by Professor Stephen Jay Gould for a much more comforting and expansive explanation. Gould was a statistical wizard, and a long tenured lung cancer survivor!)

We need a yardstick to quantify or perhaps justify investments, risk or life tenure. I remember meeting a gentleman who was a life insurance actuary back in the day when insurance policies actually had a discrete actuary calculation for each policy holder. Now such analysis is often done on computers or exists in a near-real-time database that the company uses to generate a policy premium for a given individual. I would say my encounters with this man rose to the level of life changing, for I had my first understanding of how mathematics intersected life (one likely has to be an engineer to cite statistical understanding as life changing and I am indeed guilty). That yardstick is a statistical projection. Even the best, most thorough, rigorous, and detailed statistical analysis only rises to the veracity of aforementioned definition of the word projection. 

In the US, we have a saying: "nothing is certain but death and taxes." Actually, that is on its face wrong. It should be revised as nothing is certain but life, death and taxes! The non-inclusion of the word life in the adage lends credence to how little we attach to its significance while living. But, isn't that the point; isn't life the most important certainty. It should be. It should also be with your thoughts about your mother. Her continued life beyond her diagnostic statistical projection is the important point. Your mutual enjoyment of that condition is the most important point.

It is spring and time for renewal and celebrating life's rebound from winter. Do more celebrating and less perambulation about lifespan projections. Find joy in the day with your mom and celebrate its discovery.

Stay the course.

Tom

 

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Thank you for your reply Tom. I read about Stephen Gould and found his attitude very inspiring. He was right, statistics don't show variation. A lot of statistics about general survival are outdated as they reflect data that doesn't take into account modern advances.

What I found a bit baffling is how can they know that someone has five years if durvalumab has only been around for five years? 

I really hope that my mum will live a very long time. She has a lot to live for and is in good nick for her age. I take comfort in the fact that she is in the best possible hands. She's under one of the top cancer hospitals in the UK with the best oncologist who would move heaven and earth for my mum. 

In regards to my question about if the cancer were to return, can people who have previously been treated with immunotherapy be retreated with it again? 

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Catlady,

I'm sorry I didn't give a precise answer to your question about the duration of durvalumab as a treatment modality, its tenure, and its projected benefit at five years of survival. The baffling part is in the mechanics of statistical projection. A life survival curve when plotted extends to infinity; it never hits the nul condition of zero life.

I wouldn't have an answer about re-treatment with durvalumab given a recurrence or switching treatment to another immunotherapy drug. I think that question is best answered by a medical oncologist.

Stay the course.

Tom

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Don't waste your rare and precious life: stay out of the internet statistics! .It's impossible to predict your mom's  future from them. She's a case of one, not a statistic. If she does have a recurrence, there may be something new available.  Enjoy your time with her now.

"Don't worry, be happy"  Bobby McFerrin. https://www.google.com/search?gs_ssp=eJzj4tFP1zcsNM0oNEszzDZg9BJJyc9TL1Eozy8qqlRISlXISCwoqAQAy1kLuw&q=don't+worry+be+happy&rlz=1CAUBRP_enUS939US939&oq=don't+worry&aqs=chrome.1.69i59j46i39j69i57j0i20i263i512l2j46i131i433i512j0i512j46i433i512j0i512l2.25152j0j9&sourceid=chrome&ie=UTF-8

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