Tag: #Sharingiscaring

Look out Yokohama

These are My ScarsLeave a comment

Screen Shot 2017-08-22 at 4.14.12 PMIt has been a little while since I have posted and much has happened since the last post. One of the most notable things is, I was selected and awarded the IASLC’s Patient Advocacy Travel Award. This award allows me to travel to Yokohama, Japan for their annual World Conference on Lung Cancer. JAPAN!!! I cannot tell you how excited I am. For one, I get to travel to a country that I have always wanted to visit. I get to soak up the latest information on lung cancer research and practice. I get to network with other patients, advocates and experts in the field of lung cancer research, and I get to go to Japan. Have I mentioned I’m going to Japan!?Screen Shot 2017-08-22 at 4.05.37 PM

Seriously though, I want to take this opportunity to share what the IASLC does and let everyone know about their Foundation Cancer Care Team Award.

The International Association for the Study of Lung Cancer (IASLC) is the only global organization dedicated to the study of lung cancer. Founded in 1974, the association’s membership includes more than 6,500 lung cancer specialists in over 100 countries. IASLC members work to enhance the understanding of lung cancer among scientists, members of the medical community and the public. IASLC publishes the Journal of Thoracic Oncology, a valuable resource for medical specialists and scientists who focus on the detection, prevention, diagnosis and treatment of lung cancer.* For their mission statement, more information and resources, please go to their website.

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Nominate Your Care Team Now!

The IASLC is excited to announce the creation of a new award, the IASLC Foundation Cancer Care Team Award, designed to recognize outstanding patient care and honor multidisciplinary teams working together to provide the highest quality cancer care.

Nominations will be accepted from all over the world. The winning team will select one representative to attend the IASLC 18th World Conference on Lung Cancer, for which IASLC will provide monetary travel support. Learn more and nominate a team for the award. Please contact them with any questions: membership@iaslc.org.

As always, be well.

XO AM

*taken from https://www.iaslc.org/about-us

A Plea for Help

These are My ScarsLeave a comment

Hello dear readers.

I have a favour to ask you.

I was contacted today by a young mother seeking help for her 4 year old son who has ALK MYCN driven neuroblastoma. They have been fighting for almost all of his short life and time is running out. What they need is access to Lorlatinib, whether through trial or off label. Rivky

“My son is refractory with rapidly progressing disease which is overtaking him. Last Thursday he walked in park and kicked ball, today he is immobile with his ilium destroyed by disease…We traveled around the world (from UK to Sloan Kettering and to Germany most recently ) to save him but he keeps relapsing. Since his latest progression on last week’s scans we are sent home on palliative care. We are in sheer disbelief and devastation. We love him so much. We literally left no stone unturned. Today, lorlatinib went into phase 1 trial for neuroblastoma, but my son doesn’t fit the study entry criteria, despite being one of not many children who express ALK amd mycn, for which lorlatinib has preclinically shown to be effective even as single agent (this is saying something big). We don’t have the time to wait and see if he would fulfil the entry requirements and his oncologist believes we are doing him no favor by keeping the fight. And so I couldn’t yet convince her to apply for lorlatinib on compassionate use. My son was on ceritinib but progressed thru it, he is refractory to chemo and has to great a disease burden for immunotherapy. All we have left is really the pain meds.”

If you can share this, or if you know of someway to help please contact me.

Time is a commodity not many value until it is taken away.

Then it becomes priceless!

AM