#LCSM Chat 1/14

And the first proper chat was heald yesterday. I once again want to give a brief summary of people’s contributions.

Q: T1: What question(s) would you like studied to improve the side effects of #LungCancer treatment? #LCSM

A: T1: More research on early palliative care and lung cancer to hopefully improve implementation #LCSM @lungassociation

T1 More research on help for lack of appetite to help ward off cachexia if possible. #lcsm

@aboutlungcancer

  • This is a VERY important point. The first two cycles mum went through were horrendous because she couldn’t eat a thing and lost a lot of weight. Which obviously makes recovery harder.

T1: Targeted chemotherapy: What genotypes benefit from chemo and which do not? Would be nice to spare chemo if it does not help. #lcsm @allen_lee_

Q:T2: can we reduce morbidity and improve recovery time with PT and pul rehab before surgery? #lcsm

A:  T2: Rehab post of for patients. ALL heart patients have it. Physical and pulmonary #lcsm @lcsmchat

T2. Need more solid studies on relationship of length of stay to outcome and satisfaction. Also need for readmit. #lcsm @brendonstilesmd

As someone who couldn’t profit from surgery, I don’t really have anything to add here, it’s a topic I don’t know much about.

Q: T3: What strategies can we study to improve screening and diagnosis of #LungCancer? #LCSM

A:T3. Entry point is critical. Why don’t (or why do) PCPs screen? Are some eligible patients excluded and why? #lcsm @brendonstilesmd

As Lung Cancer seems to run in the family, and the doctor said it may not be smoking related despite her 2 pack a day habit, I can’t lie: I’m shit scared. Screening would be reassuring.

Consider lung cancer as possibility #lcsm @terribirdy

T3: physicians quit assuming. Don’t smoke? Oh, you’re just out of shape. #lcsm @johnlpender

Well yes, too many people are being fobbed off because they don’t fit the accepted profile (Ie heavy smoker in their 60’s)

T3:Add family history as reason to screen. #LCSM @teamplh4lisa

Oh god yes.

QT4: What methods can we study to improve the delivery of #LungCancer care? #LCSM

A:T4 question of over-treating. When is wait and watch appropriate? #lcsm @jillfeldman4

T4 Use email, online labs and test results. Respond to patients when reporting side effects. Reduces stress and panic #lcsm @terribirdy

This should give you a brief overview. I can really only comment on a couple of these but as stated, I think offering better screning and not dismissing LC as a possible diagnosis are some major points.

#LCSM Chat 1/14

#LCSMchat next topic has been announed

On 17/12 the community will reflect on 2015 and the advancements it’s brought to Lung Cancer patients.

T1: What do you feel were the key highlights for the lung cancer community in 2015?

T2: What are the leading challenges the lung cancer community still faces for the near future?

T3: What are your predictions for realistic next advances in lung cancer in 2016?

T4: Dreaming big, what’s on your wish list of what you’d love to see for the lung cancer community next year?

The chat will take place 8PM Eastern, 5 PM Pacific time, so I’m unlikely to be able to make it, but I’ll give a recap here.

 

 

#LCSMchat next topic has been announed

Reminder that #LCSM chat is taking place tomorrow

If you or someone around you has been impacted by a Lung Cancer diagnosis, you should follow the hashtag #LCSM to keep up with tomorrow’s debate. Fighting the stigma of a Lung Cancer diagnosis is vital to make sure research is being given the necessary funding as well as taking away the added burden of judgement from those who suffer. Tomorrow’s chat is going to look into bridging the divide within the community between smokers and non-smokers, and will ask questions around how campaigning can get away from promoting non-smoking as the  Be all End all solution to fighting Lung Cancer.

 

Source: #LCSM Chat Topic for 12/3: “The Lung Cancer Advocacy Dilemma: Bridging the Smoking History Divide.”

Reminder that #LCSM chat is taking place tomorrow

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

LCSM Chat

On Thursday evening I was reading the #LCSM hashtag to follow the annual debate of the medical Lung Cancer community. It’s really inspiring to see what break throughs are being made all the time.

If you suffer from Lung Cancer, your chances of early diagnosis and survival hve never been better and a lot is coming soon that will transform the way we look at treatments. If you have NSCLC that is. As it were, the situation for sufferers of SCLC doesn’t seem to improve. I guess at least it’s not getting worse.

 

It’s great to see how the developments for NSCLC are gaining momentum. A few leads that were investigated have shown to be highly effective and new meds are being approved all the time.

 

But there are also drawbacks:

 

There needs to be more money for funding

More patients need to partake in clinical trials to create test groups big enough to deliver clear results

For patients, it’s all about access. Thos in rural areas may be left out and likewise people outside of the US.

 

Insurance currently may not cover meds that extend life instead of curing the disease so meds can become quite costly.

 

Lots of problems to solve.

LCSM Chat