Hello!

Our Blood Cancers OncTalk was a success.  Here it is in its entirety. 

If you have questions please don't hesitate to ask. 

Take care,

Janine

How to Support a Partner - Caring for the Caregiver is an article published 1/6/23 and is remains an important read.

It begins, "When test reports come in, and the building anticipation confirms the worst fears with a diagnosis of cancer, it certainly affects the individual the most. However, its ripples are far-reaching; we share it with our parents, family, partners, children or friends, and almost anyone that we can rely on for support.

These individuals become the backbone of one’s journey to fighting the battle with cancer, which can be a long and seemingly lonely road. The presence of a strong support system can make it feel easier. In this journey, the “caregivers”, our loved ones who are supporting us, often go unnoticed in their daily struggle by the doctors, relatives, and even themselves.  

To help combat that sense of caregiver fatigue, we are sharing some useful strategies to support a loved one, and in the process, also understand the role and challenges of a caregiver."

I was talking to a couple of friends last night when caregiving came up.  They had both been through recent episodes of caring for elderly parents in their last years of life and I with my husband's cancer journey (I'm embracing "journey" because I don't have another term.  Lend my a better term if you have one.:)). 

If you have thoughts on this topic please share them with us :)

Janine

Este evento educativo para pacientes en vivo, virtual e interactivo incluye presentaciones y paneles de discusión que cubren temas generales relevantes para una amplia gama de cánceres de pulmón y opciones de tratamiento, así como la oportunidad de hablar con expertos en una sesión de preguntas y respuestas. Los oradores incluyen destacados profesionales médicos que presentarán debates centrados en el paciente para educar a las comunidades de pacientes y cuidadores.

This live, virtual, and interactive patient education event includes presentations and panel discussions covering general topics relevant to a wide range of lung cancers and treatment options, as well as the opportunity to speak with experts in a question-and-answer session.   

Speakers include leading medical professionals who will present patient-centered discussions to educate patient and caregiver communities. Registrate gratis.

It's exciting to see such PFS numbers for advanced NSCLC.  From ASCO Daily News, Benefit With Lorlatinib in Advanced ALK-Positive NSCLC

Key Points:

• At 5-year follow-up, lorlatinib continues to show progression-free survival (PFS) benefit versus crizotinib in patients with previously untreated advanced ALK-positive non–small cell lung cancer (NSCLC) with no new safety signals.
• Median PFS was not reached with lorlatinib compared with 9.1 months with crizotinib.
• The majority of patients (92%) assigned to lorlatinib were free from intracranial progression.

I just finished my last CancerGrace Booth Shift at ASCO.  The common themes throughout the advocate groups were how to reach more people and how to partner with one another so resources aren't wasted. Personally, I have a lot of questions and few answers.  That's where the younger, stronger, and brighter minds come in thankfully Grace is full of those. 

There was one organization that really stood out.  It was unlike any I've seen before.  It's called Pickles, kids supporting kids. Pickles Group’s mission is to provide free peer-to-peer support and resources for kids and teens impacted by their parent or guardian’s cancer.  If you know someone with a cancer diagnosis who have children between the ages of 6 and 18 please check out their site. 

I will be sharing this one at every opportunity.

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I am reaching out on behalf of OwnYourData, a student-led startup from Columbia University. Committed to advancing inclusive research, we are currently developing a mobile application using AI to match patients to cancer clinical trials.

As we continue the development of our application, my team is interested in interviewing patients regarding their experiences navigating searching for clinical trials. However, we have yet to identify candidates outside of our networks and, as such, we were wondering whether you have any recommendations for individuals who would be interested in participating in a short, 15-30 minute interview (participants will be compensated $20 for their time)? Attached is a flyer that you might consider sharing.

Thank you, sincerely, for your consideration, and we look forward to being in touch!

All the best,

Alexa Aalami

Hello,

Today I'd like to share a new playlist on our youtube channel, Importance of Testing.  These videos cover prevention, screening, and early detection of skin, lung and breast cancers. 

To further your understanding and that of others, you are always welcome to post questions, thoughts, replies, and experiences.

Be safe,

Janine

Hello,

I want to share this video, Cancer Growth Rate and Managing Slow-Growing Lung Cancers.  A lot has changed in treatment and management in the last 8 years but here's one thing that still needs to be considered. 

When someone's cancer progresses how aggressively should its management be?  Often it depends on how relatively fast or slow or how widespread the progression is. 

When cancer is metastatic you can think of treatment as a marathon.  You want to use as little for as long as possible.  Terms like oligoprogression have come into fashion when thinking of how to make a treatment last longer.  For example, someone with an EGFR mutation progresses on tagrisso may be able to kill the resistant cells with radiation then continue on tagrisso as before.  

or

Someone whose cancer progresses only slightly may take a "watch and wait" approach.  For example, don't change a treatment that is otherwise working and manageable, and see what the scans show in 3 months.  It might be that nothing much changes. 

Of course, with everything cancer, it depends on the individual.  Everyone's cancer is different, some "typically" aggressive cancers are indolent and vis verse.  Anything can happen.  This might to the occasion to see your 2nd opinion onc and get another head in the game. 

Take care,

Janine

Register here!

Register for free and join us on this live, virtual and interactive patient education event!

This event includes presentations and panel discussions covering general subjects relevant to a diverse range of lung cancers and treatment options, as well as an opportunity to speak with the experts in a Q&A session.

Speakers include top medical professionals presenting patient-focused discussions to educate the patient and caregiver communities.