Some good news

I just came across this article about Samantha Mixon, a 36 year old who had been diagnosed with a stage 4 Lung Cancer.

 

Samantha is a great example of why you shouldn’t give up hope to beat the odds, and she’s now subject of a case study to help others achieve the same great outcome:

Read more about her story here:

http://www.11alive.com/story/life/2015/11/27/lung-cancer-piedmont-atlanta-hospital/76440764/

Some good news

Next #LCSM chat

@LungCancerFaces made me aware that she’ll be moderating the next LCSM chat this Thursday  3/12/15 at 5 pm PT, 8 pm ET.

The topic for this one will be: “The Lung Cancer Advocacy Dilemma: Bridging the Smoking History Divide.”

And it is a difficult topic, especially for someone like me, who’s mother likely suffers from SCLC because of her smoking history.

One thing I noticed pretty quickly when getting more familiar with the topic and its community was, that most bloggers (at least the ones I could find) were non-smokers. I completely get that. In non smokers, a disproportionate amount is younger than the average LC sufferer and likely more tech-savvy . There will also be a greater sense of injustice and defiance in fighting back. But why is that?

Again, I think it goes back to the stigma and the false belief that if you smoked, you somehow deserve this and likewise I think people are apprehensive of (especially) online abuse from people telling them that they brought this onto themselves (whether or not justified, I can’t blame anyone to think this is a possibility).I do think smoking and class/access has a strong link, so someone who’d be a typical smoking related cancer patient right now would be less likely to know how to find resources or how to use the internet as a platform. But I also believe there may be other factors at play here and as I am still fairly new to this, these are just guesses that I have and anyone who knows more may jump in and correct me if I’m wrong:

My understanding is that the way the illness progresses has an awful lot to do with the type of lung cancer you end up having. In my mothers case, she has SCLC, a very rare (only 17% of sufferers get this one) and aggressive form, which also responds badly to new therapy approaches and where little progress has been made in general. SCLC, or so I read, is most common in smokers. Due to other smoking and general health related issues combined with the quick progress this type makes, I just find it hard to believe that someone who suffers from this finds strength to get involved in the lung cancer community. My mother at this point is sleeping most of the day, finds it hard to eat and can’t read a book because it tires her too much (and we only found out this month). There’s no way she’d be in any shape to get out on a platform and talk about lung cancer from a smoker’s perspective. And she’s one of the younger ones as well, as age will be another big factor at play here.

On one community blog I read something that resonated a lot with me (and if you are or know the author, please link me to them!):

They drew a comparison between the stigma that smokers suffer from and the stigma HIV patients had to fight, as both diseases are perceived as self inflicted.

It was pointed out that the biggest difference was that HIV patients tended to be a lot younger and more savvy when it came to build and occupy a platform, which has not only led to a change in public perception, but also in research and funding, making it now a disease that can be managed with minimal viral load and a comparative life expectancy of someone not infected (good access to healthcare provided). With Lung Cancer, we don’t have that just yet, and the patient advocates we do have (and who do amazing work!) tend to be non-smokers with NSCLC so there is a risk of focussing on one specific patient profile. This may be less relevant to research results than it is for people suffering from these types to find people with similar experiences, nevertheless I believe this is a risk worth taking as their relentless campaigning has already brought many advancements in a short space of time.

What’s needed is encouragement for patients and relatives and friends to become advocates regardless of their smoking history. Smokers deserve care and treatment the same way everyone else does. As I have pointed out before, the causes are many fold and not black and white. A smoker may get LC regardless of their history or because they have been exposed with another carcinogen. And even if it was smoking: I would argue that most of us do things we know are bad for us: we drink, we over eat, we consume processed foods of questionable composition, we don’t exercise enough, sleep too little etc.

So if I was to suggest something to help bridge the gap between smokers and non smokers in the community it’d be this:

Non-smokers: continue your great work, the results we see are in large parts due to you. And don’t forget to encourage those who have a smoking history to tell their own stories. More exposure, more campaigners will lead to more treatments for everyone.

Smokers: Speak up. Your stories are worth hearing. Don’t fear the stigma, you deserve to be heard and helped the same as anyone else.

So if you have the time, please check out the #LCSM hashtag on Thursday and contribute. Get your stories out there!

Next #LCSM chat

What is your Lung Cancer Risk?

I found a pretty good questionaire that helps you understand your risk level to get Lung Cancer.

Mine came out as average:

I have lived with a smoker (my mother) most of my life, I quit smoking less than 20 years ago, I have a family history of Lung Cancer (Granddad and Mum), but at least I don’t work with dangerous chemicals and eat a balanced diet.

The test is a pretty good way to show you that it’ not just smoking and that we all are, potentially, at least at some risk.

 

Time to drop the stigma.

 

Take the test here:

http://www.yourdiseaserisk.wustl.edu

What is your Lung Cancer Risk?

swings and roundabouts

Mum had another x-ray and we were told that the cancer is shrinking. Whilst this is great news, it doesn’t mean it’s going away. It only means it’ll kill her a little bit more slowly and in the best case it’ll mean she’ll be around long enough for another trial we may enroll her into (fingers crossed!).

 

At the same time she’s still struggling to eat and she’s getting infusions. Her voice has gone and breathing is a struggle so phoning her is more and more me calling her to tell her I love her than having a meaningful conversation, and I’m fully aware this won’t get any better.

As if it wasn’t bad enough that I beat myself up over being away, I am going on a company trip today. Normally it’s an occasion I am looking forward to, but this year I’ll mostly feel stressed and worried and guilty.

swings and roundabouts

SCLC Clinical study

Cancer research UK are currently running a trial for Olaparib.

 

Sadly, Mum doesn’t qualify (treatment hasn’t been 3 cycles yet and won’t be until cut off)

 

They are looking for patients who have responded well to their chemo treatment.

 

If you or someone in your family fits the profile, please sign them up to the trial, it may make a world of difference even in the short term, and will help find a better way to manage the disease going forward.

 

Please get in touch with them:

0808 800 4040

or contact them here

SCLC Clinical study

Faces of Lung Cancer 5

george-vi_2626745b

King George VI

 

Father of current monarch Queen Elisabeth II and familiar to most through the film “The King’s Speech” where he was portrayed by Colin Firth, which won an Oscar for Best Picture among many other awards.

George, also known as “The reluctant King” came into succession as his brother abdicated. He stayed in the UK throughout WWII which won him great popularity.

A heavy smoker all his life, he was diagnosed with Lung Cancer and a variety of other illnesses. He was found dead on the morning of the 6th of February, 1952.

 

Faces of Lung Cancer 5

What’s it like being in a clinical trial?

For many, a clinical trial may be another lifeline when other ways of treatment have been exhausted.

 

Dann Wonser gives a great account on what it’s like to be part of such a trial, and hopefully manages taking away some of the worries you may have regarding the enrollment.

 

Remember; without these trials, promising drugs can’t be approved.

A big thank you to Dann for being part of this and helping people who will directly benefit from the findings!

http://www.lungevity.org/support-survivorship/get-connected/blog/sign-me-up

 

I also want to stress that you shouldn’t rely on your oncologist to be on top of the latest findings. They are working hard day to day and may not have the time to read up on the latest trials so make sure that YOU do. It can make a world of difference as Dann shows.

What’s it like being in a clinical trial?