Patient-Led Program Provides Patients with World-Expert Opinions!


Patient-led Program Provides Patients with World-Expert Opinions!!

ALK Positive Cares About the Health and Well-being of Our Family!

Designed to Improve Patient Outcomes and Reduce Anxiety!

 This unique program was conceived by caring and philanthropic ALK Positive member, Jim Peard. Jim was deeply concerned that some ALK Positive patients did not have access to a quality care team to guide appropriate treatment. The Medical and Pharmaceutical Advocacy Committee of ALK Positive worked with Jim to establish the ALK Positive Second Opinion Program to help those who desire a second opinion from a leading ALK-positive lung cancer expert, but do not have the financial resources to obtain that second opinion.

Colin Barton, Chair of the ALK Positive Medical and Pharmaceutical Committee, has connected the Program with some leading ALK-positive lung cancer experts to provide the second opinions.  There is a panel of volunteers to review applications. In the first 9 months of the program there have been 15 applicants, and they have all been approved as eligible for a consult with a world leader in ALK- positive lung cancer at no cost to the patient. The cost of the consult is paid directly to the medical facility by the generous donors (on behalf of any ALK Positive member approved for the Second Opinion Program).

 The world-leading experts currently partnered with the Second Opinion Program are:

Dr. Ross Camidge (UCHealth, Denver, Colorado)

Dr. Alice Shaw (Massachusetts General Hospital (MGH), Massachusetts)

Dr. Christine Lovly (Vanderbilt-Ingram Cancer Center, Nashville, Tennessee)

Dr. Collin Blakely (University of California San Francisco, California)

 Dr. Camidge provides remote consults. A “remote consult” means there is no need to travel, pay for accommodations, take time away from work or family, or if you are not well enough to travel.

All four of these experts provide in-office face-to-face consults. The patient will however be responsible for the costs of travel, accommodation, meals, and any other costs.

 Patients Highly Recommend this Unique Program

 Patient SR

“My mother was always a very fit and healthy woman when diagnosed in October 2018 with NSCLC lung cancer.  None of us in the family ever imagined how strongly this would impact all of our lives. We were told she was considered lucky to be ALK-positive. Mom was immediately placed on Alectinib and developed a rash resulting in a need to stop the medication. After much research, I found the ALK-positive Facebook group, which has been extremely helpful and taught us the importance of seeking a second opinion to guide treatment choices.

 Our family felt we could benefit from a remote consult with Dr. Ross Camidge. Since this additional expense wasn’t something our family could afford, I applied for the Second Opinion Program.  The process was so simple, and Dr. Colin Barton was so helpful and responsive regarding any questions. We were so grateful when I received an email that my mom was approved, 12 hours after my request was submitted. We were instructed obtaining all necessary documentation. Once they receive all required documents and images, a time will be scheduled for the call. 

 Dr. Ross Camidge was so friendly, patient, and spent time gathering all the info leading up to diagnosis, while going thru all treatments, symptoms, scans, and reports He gave us his opinion and was so understanding, humorous, helpful, and kind, and put us at ease with the care my Mom was receiving, yet he still offered some of his own advice. He even offered to let our current local oncologist know his thoughts and recommendations as well. Two days later we received a letter with a complete summary of the call, ending with his well written and clear recommendations. The remote consult allowed a three week period following the call in which we were able to correspond via email with any follow up questions which was very helpful as well. Another remote second opinion call was needed in April due to progression seen on scans, including new lesions seen in the brain. Dr. Camidge again gave us his opinion, and put us at ease regarding the brain lesions, since he believed they were actually a result of the medication working, and advised us on how to go about treating the other areas of progression.

 I highly recommend the Second Opinion Program to anyone who has recently been diagnosed with ALK-positive lung cancer, and even to those who are already being treated. Even though we had a great oncologist, who is very familiar with ALK-positive, we still benefited so much from our remote second opinion with Dr. Camidge, and I’m quite sure the same would be for anyone choosing to use Dr. Shaw. My mom, my siblings and myself would like to take this opportunity once again to thank all those who are so involved and who have made the Second Opinion Program possible!!!”

 Patient ST

“Earlier this week I traveled to San Francisco to see Dr Collin Blakely at UCSF. It was a very positive meeting and he confirmed Lorlatinib is the best choice for me at present. He says the best options after Lorlatinib are combinations of TKIs, NOT immunotherapy. There will be a trial opening at UCSF by the end of the year using Brigatinib and Benimetinib (I hope I got that right). It will require participants to be local for the first month and then travel to UCSF every 6 weeks. So that sounds promising.
I recommend Dr Blakely if you are seeking a 2nd opinion. He clearly knows the ALK submutations through his research and has a calm and reassuring manner. I will see him again, if needed, and he invited me to email any questions that arise and also said I could have copies of my scans sent to him each time. I believe I was the first one in our group to see him, so I have some tips for anyone making an appointment (you can message me). He requires an in-office visit unless you are in California. I am very grateful for our 2nd Opinion Program that facilitated my visit. I would be lost without this group and the synergy that is created with all your knowledge and experience”

 Patient TC

”I am incredibly grateful to have had the opportunity to speak with Dr. Camidge. I found Dr. Camidge to be warm and extremely knowledgeable. Dr. Camidge was in agreement with my treatment thus far (chemo/radiation- I'm 3c Alk +) and to proceed with immunotherapy. I was concerned about going the path of immunotherapy. He did say that if I have to go off of it due to side effects to not lose sleep over it. I was grateful for those words as inflammation in my lungs from radiation and/or immunotherapy, necessitated my going off last week. I am currently doing Prednisone to bring the inflammation down and scans to be down again in 2 months to hopefully get a better look at what is going on.
A heart felt thank you to
Colin Barton for posting the program here and coordinating, the panel for approving my request and Jim Peard for generously funding! It was a huge relief to me and my family to know that I was on the right track and to have a plan b in place.

— feeling thankful.”

Rhonda Meckstroth