Mayo’s Myeloma And You: A Day For Patients And Caregivers

1/14/2020

5 Comments

When Pat Killingsworth started Pat’s Myeloma Survival School he wanted to develop something which focused on the Patient and Caregiver. He had attended many of the meetings like ASH and ASCO and found they were designed with a focus on the medical community, and lacked a patient focus. At the time these sessions were held in the Jacksonville area so Mayo had a big part to play in them. I got the same feeling at Mayo’s Myeloma And You Program as I had at Pat’s Survival School. This is why!

- The first 3 speakers were either patients of caregivers with lots of time for questions
- Doctor Asher Canaan Khan and Dr. Sikander Ailwadhi have an uncanny way of providing a patient friendly presentation with humor
- The second half of the program was all about supportive care
- Dr. Mohamed Kharfan-Dabaja and Dr. Sikander Ailwadhi discussed the new CAR T program at Jacksonville, and the work they are doing with several malignancies including myeloma.
- Dr. Ailwadhi discussed the many clinical trials which are currently available including AMG 701, BiTES, CAR T, ADC, Selinexor, and CLR 131.
- Dr. Asher Chanan Khan discussed breakthroughs and Immunotherapy. He highlighted a new vaccine therapy which he feels just may be the BREAKTHROUGH for cure we have been hoping for. Many vaccines have been tried and failed in the past but he feels he has finally found the key! I hope he has, he is usually right!
- This Mayo Myeloma And You Program is just 2 years old and the growth has been exponential and the cost at $20 per person is a deal. Over 200 participants this year. The drug companies like Takeda, Celgene, Sanofi, & Karyopharm helped to fund this program.

Knowledge is power and for myeloma it is LIFE! Thanks to all who helped to bring this patient and caregiver focused program to the myeloma patient population. To me more should be presented using the Pat Killingsworth Survival School Template.

Good luck and may God Bless your families cancer journey. For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

A few pictures from the meeting.

5 Comments

Lynell Fuller

1/14/2020 10:50:43 am

I am new to the Myeloma population having been diagnosed as high risk SMM at the Mayo Clinic, Rochester in October. How do I find out about the upcoming info meetings?

Gary Petersen link

1/15/2020 10:13:56 am

Lynell, Mayo's was in January, but the IMF has one in Boca Raton, FL in March at the link: https://web.cvent.com/event/70449ad7-67c0-4e60-b727-b67230a6e0cc/summary Myeloma Crowd has one coming up in San Diago in March at the link: https://www.myelomacrowd.org/march-7-2020-myeloma-crowd-round-table-san-diego-california/ I did a google search and you may want to do the same to find out if Rochester has something in the works. Best Regards/Gary Dana Farber has a FREE program which follows smoldering patients called PCROWD and you can find it at the link: https://pcrowd.dana-farber.org/ They track and treat myeloma BEFORE the patient has end organ damage like kidney failure or bone destruction. Good Luck and may God Bless your families myeloma journey/Gary

Lynell Fuller

1/16/2020 02:19:01 am

Thanks Gary, I will check Mayo Rochester to see what is in the works. I am pursuing a clinical trial. For one thing that’s how the Myeloma community can discover treatment plans and also I would like to hault the progress of this disease. I just started my journey and want to be well educated all around, with accurate information and new possibilities on the horizon. Glad to see there is much available to patients and would like to join the “society of encouragers”.

Tim Ferguson link

1/14/2020 05:33:23 pm

Nicely said. I was the patient example and I hope it helped. We need more patient experience in our community.

Gary Petersen link

1/15/2020 09:53:58 am

Tim, you did a great job and service to the participants of this program. It is not easy for the anyone who is new to myeloma, and the patient perspective is critical. Thank You for your efforts! Gary

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Mayo’s Myeloma And You: A Day For Patients And Caregivers

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